HIV PREVENTION AND AIDS MANAGEMENT

Transcription

Paul wanaye wamimbi-HIV/AIDS Publication-2015
Email: [email protected], Cell phone: +256779064447. Sharing knowledge, saving lives
SHARING KNOWLEDGE, SAVING LIVES
AIDS: FEAR AND ANXIETY
HIV can bring a lot of anxieties. One way of tackling this is through getting information, by
learning about your condition, gaining confidence in it, in yourself and making informed choices
for your future.
Receiving a positive diagnosis, even if you were anticipating the result, is often very unsettling.
As a result some people just accept the information given without really understanding, or forget
to ask questions essential for the peace of mind. However, being well-informed about HIV and
related issues can be vital and doctors, support organizations and other people living with HIV
can all provide both advice and information.
Although the issues HIV raises can be surrounded by jargon, being assertive and getting
informed can be as useful as any treatment. Being diagnosed HIV positive can be devastating to
deal with but it is not necessarily a death sentence, or something you need to cope with on your
own.
Being anxious or fearful of having HIV and all that it entails is perfectly natural. Fear and
anxiety is just a couple of many emotions you will inevitably feel, and you will have to manage.
How to respond to feelings you experience is a personal thing but it is not something that has to
be done alone. It can be perfectly natural to worry about AIDS.
Because HIV is a virus that can be transmitted from one person to another, but there are very
specific ways of becoming infected and often many of the ways you think to have caught the
infection was wrong.
HIV is a virus that cannot just appear from two people who do not have it. ―It is important to
know how you can and cannot get infected‖. It is important, however, not to let worry or fear
stop you from being rational about the reality of infection.
If we have been involved in any activity that is deemed risky or feel may have been exposed to
HIV then it is important to know how we can and cannot be infected. If we have read the ways in
which we can and cannot get infected then we should be able to work out whether or not we are
genuinely at risk of having been infected.
And if we believe to be at risk from having been exposed to possible infection then it is very
important to get tested. If we are someone who feels that we are at risk of possible exposure to
HIV then there is nothing wrong with having a healthy worry about the risks of transmission.
It is likely that we either worry about exposure due to our personal lifestyles (you engage in
unprotected sex), or because we are exposed to blood through the nature of our activities. Many
people who work in the health sector or with ‗at risk‘ groups worry about HIV infection. Having
this worry is a rational and totally logical worry and one that should not be ignored. If you are in
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a job where exposure is likely then make sure that not only your employer, but also take
appropriate measures to protect yourself against infection by employing the system of universal
precautions.
There are rumors and myths surrounding AIDS and it is important to remember that scenarios of
deliberate infection are normally myths, often circulated in the media and made to look very
legitimate. The problem with these myths is that no matter how much they are dismissed and
exposed as hoaxes, the damage is done. The fear has already been instilled. It is extremely
important to remember these are just myths though. They are not fact.
AIDS is a relatively new disease that only came to the attention of scientists in the early 1980s.
As a result, there is still much people do not know about the nature of HIV and AIDS. It is not
uncommon to be afraid and scared of being infected with HIV/AIDS and for many this fear can
be very debilitating and can completely take over and control your life.
There are many reasons why HIV/AIDS can generate such a fear among people. Lack of
knowledge about anything is often a likely cause for worry. A combination of little actual fact
and sensationalist story writing is a potent cocktail for creating fear.There also seems to be an
assumption that only certain people get infected which is not correct.
The occurrence of HIV is higher amongst persons who practice sexual intercourse, and such
groups are often looked down on or stigmatized in some societies. Because of this, an irrational
fear can develop where you may believe that the virus will be passed on if contact with anyone
from these groups.
However, this is an emotional assumption which is not based on any fact at all. You can also
develop a fear if you do something which is often deemed bad or wrong, like having unprotected
sex with a person you do not trust.
The guilt that can arise after doing something you think is 'wrong', may lead someone to expect
to be cursed or punished, for example by contracting HIV. If you do have a constant worry about
being infected it may be best to get yourself tested. This should then settle your worries and
reassure you. If you are convinced that either you have been, or will be infected, despite what
you have been told to the contrary, then it could be possible that your anxiety and fear of HIV is
actually something that has nothing to do with HIV or AIDS.
If you are suffering from anxiety, you can often have persistent concerns about harm or risk to
yourself. This is a type of anxiety disorder that can cause you to become obsessed with germs or
dirt, and in some cases HIV. This can result in certain rituals such as repetitive hand washing or
the need to check things repeatedly, like how you can and cannot become infected. If you think
you might be in this situation then try speaking to your doctor about it.
Should you think that you may have been exposed to HIV, having a test and receiving a negative
result (which means you are not infected with HIV), can stop the worrying. If the test is positive,
there are a number of things that can be done to help cope with the result and lead a healthy life.
If you test positive, you will at some point need to take antiretroviral treatment to slow down the
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virus and maintain a healthy immune system. The longer you remain unaware of your infection,
the less likely it is that the treatment will work.
Doctors can monitor an HIV positive person‘s health in order to provide the relevant treatment
regimen at the right time. If you are aware of your HIV status you can take steps to protect other
people. You can practice safer sex and inform previous sexual partners that might have been at
risk of infection. If you are thinking of starting a family, you can learn about ways to protect
children from becoming infected with HIV through mother-to-child transmission. If you believe
that you may have become infected, it is very important that you make contact with a doctor or
health worker immediately, in order to discuss risk and make plans to test as soon as possible. If
you consider yourself as engaging in risky behavior get tested at least once a year.
In some cases a doctor may advise you to undergo an HIV test based on their own assessment of
your health. Testing for HIV too soon after potential exposure to the virus may not give an
accurate result due to what is known as the window period.
A window period refers to the time during which HIV is not detected by tests even if the virus
has entered the body. During this time, a test may give a ‗false negative‘ result. Different types
of tests have varying window periods. To be sure of how long you need to wait, always discuss
the nature of the HIV test with a healthcare worker before getting tested. If you are not sure of
the date or time of your potential exposure to HIV, a healthcare worker will be able to advise
appropriately on their HIV testing.
Learning you’re HIV positive
Scream, shout, cry, laugh, hide, run away, feel numb, scared, and lonely, relieved. How do you
think you would react to a positive result before you actually had the HIV test? Were you right?
Reaction to a positive result is different for everyone. Are you alone with HIV? Absolutely not.
Globally, there are millions of people living with HIV and probably you are among them. It may
seem you are the only one after being diagnosed, but really you are not. There are people out
there, and many of them are dealing with similar issues – sexual health, relationships, disclosure,
change etc. You may wonder what you will tell anyone, what the responses will be.
Connecting with people who have been through similar experiences can help. Think about the
benefits and do it early, do not delay. You deserve to have sex and feel good about it! Testing
HIV-positive might mean making changes to how you have sex, but practicing disclosure and
how to protect yourself and your partners from HIV and other sexually transmitted infections can
make things easier.
Over time, you will find a way of dealing with it that suits you, but it might be quite different to
the way other people cope with it. Try and think about living - thousands of other people who
live full and rewarding lives despite HIV, you can do it too. Your first action as a person living
with HIV is making a choice - what to do next. The choices will not stop there; making the right
ones to enrich and extend your life might play an increasing part in every new day.
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No one ever predicted or suggested that any of this would happen. If you need time and space to
think your situation through, take it. Whatever you are going through is natural. How to deal
with this news is up to you. HIV is threatening your existence, so it is alright to be angry. If you
are scared, express your fears.
Do not be hard on yourself and do not force yourself to be strong if you do not want to be. Stress
is natural and affects your emotions. It can help to deal with some situations if shared with
others.However, excessive stress can cause physical symptoms; it can damage your immune
system and you may fall ill. Take stock and find ways of managing stress in your life. Find ways
to relax and refresh your mind. Listen to your body; if you are tired, rest and you will be better
for it.
Finding out that you have HIV may make you feel very angry and confused. Some people feel
very sad, some go into shock and may feel numb, and others are very scared. Many people feel
totally overwhelmed and helpless. It is important to realize that you are undergoing a crisis so
these feelings are normal.
Accept them, because feeling this way is part of the process of coming to terms with your HIV
status. The strength of these feelings will lessen over time but a lot of people may sleep badly,
not feel like eating, and feel tearful for a few weeks after being told they have the virus. If these
feelings are still very strong after about three weeks you may need to seek professional help from
a counselor or doctor.
It is not cause for panic but cause for action. Have the will to live positively by looking at the
future with hope. It diffuses away the feeling of self-condemnation or blame shifting for the
situation. Always maintain hope through optimistic pursuance of dreams and aspirations. Then
try to make an effort by taking an extra mile to help others. This will make you more needed and
worthwhile. And do not go beyond the extreme trying to be a person what others want to be, it
may not be easy to comfort everyone‘s opinion.
Try as much as possible to always associate with people who think positively. And also do not
let negative circumstances dictate the perception of your life. And where failure is registered,
resiliently press on with the self-assurance that success is making its way. You can also develop
a strong social network of friends, and let them be a shoulder to lean on for the support needed in
both good and bad times. Value your friends for what they are because they may not leave-up to
your expectations and always gather all your strengths by striving at a meaningful, fulfilling and
productive life.
Newly diagnosed with HIV
If you have just been diagnosed positive you might be feeling upset, shock or anger and might be
having trouble taking in the things you have been told. Do not worry. It is important to
remember:
Successful treatment means you can expect to live as long as anyone else.
This treatment can be as simple as taking one or two pills once a day.
Once your treatment is working properly you may only have to see a doctor once or twice
a year.
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You can have a relatively safe sex life – either with condoms or even without once your
treatment is working properly.
HIV positive parents can have HIV negative children.
You might feel that your life has fallen apart and be feeling overwhelmed – but it is possible that
becoming positive could only change your life by a small amount. Most of the things people take
for granted about their lives can still apply to people living with HIV.
All it takes is a bit of extra care to look after yourself. It is really important to go to a specialist
HIV agent to sort out your medical care. You might not need to start treatment straight away but
only an HIV doctor can work this out for you. If you are to wait until you are ill to seek medical
advice it will be a lot more difficult to control your HIV and make you well.
New drugs make it possible for the HIV infected person to live for years without getting AIDS.
You can work or go to school, make friends, hang out, and do all of the things other people can
do. You will have to take certain medicines every day and see your doctors pretty often, and may
get sick more than other people do because your immune system is more fragile.
Even though you may look healthy, you may sometimes feel scared, angry, unhappy, or
depressed. You may feel afraid that people at work or school, or friends or family could find out
and start treating you differently. If you know someone who is HIV positive, treat him or her just
like any other friend.
A positive diagnosis can be quite a shock. You might begin to question your future and start reliving your past sexual behavior. This is perfectly normal and it is natural to start thinking: 'What
if?' and 'If only'. It might be worth getting some help to look after your mental wellbeing and
begin to adjust. You might be thinking about who you can tell about being HIV positive - and
who might find out.
It is only natural to think about who can offer support during this difficult moment. Before
making any decision, why not discuss it through with any health worker. All of this might seem
like quite a lot to manage on your own, along with running the rest of your life. If so why not get
in touch with Health Workers.
A Late Diagnosis
You might be carrying the virus and then recover from HIV infections naturally because your
body kills the virus by thousands as soon as it discovers that there is an HIV invasion till you
adjust to a state of living with HIV. Some people only find out they are HIV positive after the
virus has started to make them ill. ‗Late diagnosis‘ means that you have tested positive for HIV
after the virus has already begun to damage your immune system. If you are diagnosed at this
point then you might feel overwhelmed by all of the information given to you, but remember that
taking care of yourself is your number one priority.
It is natural to look back over what might have prevented your infection but the most important
thing now is to make sure you stay well. You may feel unwell because many people who receive
a late diagnosis are characterized with symptoms of an opportunistic infection. Although this can
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be serious and can impact your quality of life, you can work closely with your doctor to find the
best combination of medication to help your immune system. You do not know how you will
react to a positive diagnosis until you are in that situation, so take time to understand what is
happening and ask your doctor or health adviser as many questions as you need to be able to
understand your diagnosis and what to do next.
HIV medication is very good and although your immune system will already have been damaged
it can be possible to repair a lot of the damage the virus has done if you take special care of your
health.Following your medication instructions is especially important if you are late diagnosed.
Being told that you have HIV can be an emotional, life-changing event and will give you much
to think about, but a late diagnosis usually means that you must adapt to your new situation
quickly. There are steps you can take to ensure your general health is as good as it can be so that
HIV cannot take advantage of your already-weakened immune system. It is also important to
consider your sex life and how you can best protect yourself and your partner(s) from any further
risks.
HIV medication is very effective and if you were diagnosed before your immune system became
too damaged you can expect your life expectancy to be almost the same as it would be without
the virus. If you start treatment while your CD4 is still high you can expect to live almost as long
as if you did not have HIV. This also means that you need to consider how to manage your
health into your old age, as you learn to live with the inevitable effects of ageing in addition to
being HIV positive. Living with HIV for a long time can present new challenges – for instance it
might get harder to keep taking your medication as time goes on. There are tools that can help to
simplify this for you. If you are struggling with depression or anxiety, seek help from any AIDS
Service Organization and you will be able to get information on HIV/AIDS counseling or
support.
A healthy diet and an active lifestyle are important to keep your immune system strong and to
ensure that you make it harder for a serious opportunistic infection to attack you. If you have not
yet started taking any kind of drugs for HIV, you can help your body by eating a varied, healthy
diet and taking regular exercise. Then when the time comes to start your medication, you will be
in a great position for your body to handle it.
Pediatric AIDS
Some people born with HIV are told from a very young age that they have the virus, while others
are not told until they are a bit older. The important thing is that you understand enough about
HIV to face any worries and understand how to look after your health. You may be wondering
what HIV means for your health, whether it is still OK to have sex or whether you can do all the
things other people do. When you are born with HIV, this means that HIV was passed to you
from your mother. This might have been while she was pregnant and you were in her womb. Or
it may have been while you were being born or if you were breastfed. HIV has to get from one
person‘s body into another. It is passed on through only a few body fluids: blood, sexual fluids
and breast milk.
Globally all pregnant women are offered an HIV test, because if you know you have HIV you
can usually stop it from being passed on to your baby. Women who have HIV take medicine
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whilst they are pregnant and doctors make sure they give birth safely to protect their babies.
After the baby is born, it is given some HIV medicine as well and is fed with formula milk
instead of breast milk. When you do all these things there is less than one per cent chance of the
baby having HIV. If all these things are not followed, there is a higher chance of catching HIV.
So sometimes it is just not possible to prevent HIV being transmitted from a mother to her baby.
It can be that a woman may not know her HIV status when she becomes pregnant, and finds it
hard to cope or has no way of accessing the medical help that she needs. If you were born with
HIV you may feel sad or angry to know that it was not possible to stop your infection.
Sometimes when people find out they are HIV positive they want to blame someone.
These feelings are completely natural and understandable. If you find these feelings too difficult
to deal with, you can contact any HIV Health Trainer or a nearby counselor. You can live a nearnormal lifespan if you have HIV. This means that, if you take your treatment correctly when you
need to, you will live nearly as long as a person who has not got HIV. Being a child you might
have just found out that you have HIV, or maybe you have known for a while. As you get a bit
older, it is important to know more about HIV so that you can take care of yourself and know
where to get help and support. You may feel mixed up about being HIV positive or you may feel
sad, angry or confused. Or you may feel OK about it. Some children are told from a very young
age that they have HIV and others are told when they are a bit older. It can be harder to find out
when you are in your teens and it is good to tell someone when s/he is still young.
However you feel, this is normal and you should not be worried. If you can, then tell someone
about your feelings after all, a problem shared is a problem halved. When you are told you have
HIV you might want to tell people - your friends, for example. Before doing that, it can be a
really good idea to talk to someone at home or someone you like at your clinic about who you
want to tell. Unfortunately some people can be unkind to people who have HIV, and once you
have told someone you cannot ‗un-tell‘ them. It is important that one of your parents or providers
talks to you about what will happen at school, church, or any health center. It might not be
necessary to tell anyone at school that you have HIV, but if you have lots of time off for medical
appointments it can be good for your parents or providers to talk to the head teacher.
This is something you do not need to worry about as the adults looking after you should decide
the best thing to do. If they do tell the head teacher, this does not mean the other teachers or
children will be told - it is your private information. You might feel like you want to tell your
friends but it is best to talk to the adults looking after you about this first.
Accessing support for a child infected with affected
There are places that can support children with HIV and AIDS service organizations have groups
for children and teenagers with HIV or with an infected parent. This can be a really good place to
talk freely about your HIV. The staffs who work there know all about HIV and are really good at
talking to children about it. They also run special services for parents and providers so usually
the whole family can go. If you are diagnosed with HIV while pregnant then you may need
emotional support in coping with your diagnosis and information about transmission and
treatments.
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HIV/AIDS organizations provide support to people living with HIV and can offer you with a
friendly advice and support. When you have HIV, it causes problems for your immune system,
the part of your body that protects the body from illnesses and helps get better if you are ill. So
this means that people with HIV are more likely to catch illnesses and infections. Your doctor
will always look at your blood to find out how much of a problem is being causing by HIV. At
some point you will need to take medicine every day to keep your immune system work well and
keep HIV under control. This is a big deal for a lot of people because you have to take the
medicine every day for life.
Although this might sound scary, it can be helpful to think of the medicine as a good thing which
is to keep you well. It is true sometimes people get side effects, meaning you might feel ill after
taking it, but the medicine is getting more sophisticated and usually people find they can take it
easily. When you have HIV one of the most important things is to take your medicine every day.
This is so because it confines HIV under control and is not able to cause problems. If you are
finding it hard to do this, it is best to tell someone at home or your doctor as there are things they
can do to help with it. You might be thinking about when you grow up. Will you be able to have
a boyfriend or girlfriend or get married? Can you have sexual relationships, and can you have a
baby one day? The answer to all these things is yes! People with HIV can do all the things that
people who do not have HIV can.
It is really good to understand more about how sex works when you have HIV and this is
something you will be able to get more support with when you are older. If you feel shy about
this you can ask the nurse or doctor at your clinic. Having HIV does not need to hold you back.
You can still travel, although there are some places where you cannot move to permanently. You
can also have a career, although if you want to be a nurse or doctor there are a few restrictions on
what you can do. You can still follow your dreams. Being a teenager or young adult, you might
have always known you have HIV, or maybe you have just been told.
Finding out about having HIV is a life-changing thing and it can take a while to sink in. If you
were told when you were young you may only just be adjusting yourself to having HIV. First of
all, having HIV does not mean you are about to die and people with HIV can lead a normal life
and live nearly as long as someone who does not have HIV. Being a teenager can be a really
confusing time and you might feel lots of different emotions. It is normal for teenagers to have
mood swings, to feel angry, upset and to feel like you want to do your own thing. Sometimes it
can be hard to cope with how you feel, especially if you find out you have HIV or you start to
worry about it.When people find out they have HIV, even when they are adults, it can be a really
scary time. It is even harder for teenagers and young adults. You might feel confused by how
you feel and not know who to talk to. You may feel angry with your parents or with the doctors
looking after you. All of these feelings are normal and it‘s OK to feel like this. It can take some
time to work through these feelings and it is really important to talk to someone you trust, like an
adult at home or someone who looks after you at your clinic.
Sexual intercourse while carrying HIV
For the people you have had sex with, it can be difficult to tell them, but they need to know so
they can get the necessary help they need. Your local health centre may help you find these
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people and tell them they have been exposed to HIV. If they have HIV, this may help them get
care and avoid spreading HIV to others. It is very ideal also to tell people you are planning on
having sex with. Practicing safe sex will help protect your health and that of your partners. If you
are a man and had sex with a woman who became pregnant, you need to tell the woman that you
have HIV, even if you are not the father of the baby. If she has HIV, she needs to get early
medical care for her own benefit and her baby‘s health. If you suspect that you got an STD from
your partner, encourage him or her to go for the test too. Even if most STD‘s are curable, your
infected partner can pass it to you again either directly or indirectly.
Having HIV does not mean that you cannot have sexual relationship, but it is important to
understand the ways HIV can and cannot be passed on. The virus is present in sexual fluids so by
using condoms you can generally prevent it from being passed on. Someone at your clinic will
be able to explain how condoms work so you can use them confidently. You could talk to
someone at home, at your clinic or an HIV Health Trainer for more information. However you
may be feeling now, there is no reason that you cannot lead a normal life and live a near-normal
lifespan. HIV is something that can be controlled with medicine. The most important thing is to
try to learn about HIV, so that you can feel confident about looking after your health and happy
about your future. If you discover that you are HIV positive while you are pregnant, taking antiHIV drugs can dramatically reduce the risk of passing HIV to your baby.
Discovering that you are HIV positive while pregnant can be a shock. The higher your viral load,
the earlier you will be advised to start taking treatment. If you do not yet need anti-HIV drugs for
your own health, your doctor will advise to start taking them during the second trimester of
pregnancy (this is between weeks 13 and 28). If your health is good, with a high CD4 count and
a low viral load, and you are willing to have a caesarean section, you may take one drug only.
Most women take a combination of three anti-HIV drugs. You will need to be on combination
therapy, and have an undetectable viral load, if you would like to have a vaginal delivery.
You will be advised to start taking combination therapy immediately if you are diagnosed late in
pregnancy (after week 32). In this case, you may take a combination with a fourth drug. You
should continue taking the drugs for the rest of the pregnancy and for a while afterwards. Your
healthcare team can help with ways to make sure you take your drugs properly if you are not
used to this, and with how to stop after the baby is born. If you need to be on treatment for your
own health, you will need to continue taking treatment after your baby is born.
Remember anti-HIV drugs are safe to use in pregnancy. There may be a slightly increased risk of
giving birth prematurely or having a low birth-weight baby. Also, some babies do get anaemia (a
shortage of red blood cells) but this is temporary. You can reduce the risk of HIV transmission
further by having a managed delivery. The doctor will look at your viral load when you are 36
weeks pregnant and discuss options with you. If you have an undetectable viral load, it is usually
recommended you have a vaginal delivery. You will need to continue with your HIV treatment
during labor. If your viral load is detectable, but very low, the doctor will look at your particular
situation and discuss options with you. If your viral load is reasonably high, you will be advised
to have a planned caesarean section. If you find out you have HIV during delivery, or just after,
then you will be given a dose of anti-HIV drug by injection and oral doses of other Anti HIV
drugs. Your baby will also need to take a triple combination of anti-HIV drugs. After the baby is
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born, you can talk to your doctor about whether you need to continue treatment or not.
Breastfeeding your baby is not very vital as HIV can be passed on in breast milk.
SERODISCORDANT RELATIONSHIP
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A serodiscordant (sero-discordant) or magnetic relationship is one in which one partner is HIV
positive and the other is HIV negative.This contrasts with seroconcordant relationships in which
both partners are of the same HIV status (i.e. either are HIV positive or both are HIV negative).
Serodiscordant couples face numerous issues not faced by seroconcordant couples, like facing a
decision as to what level of sexual activity is comfortable for them, knowing that practicing safer
sex reduces but does not eliminate the risk of transmission to the HIV negative partner.
When your partner is HIV negative
If you find out you have HIV, having a relationship may seem a problem, especially with
someone who is HIV negative. But relationships are just as important for those with HIV as for
everyone else. HIV might make them a bit more complicated, but thousands of people in mixed
status relationships show that with a little thought and care these are among the strongest and
most rewarding relationships.
Whether someone tests HIV positive during a long term relationship or they are positive when
the relationship starts, it is vital that each of you tests so that you can both be certain about your
HIV status. It can be difficult for someone with HIV to say so, but not telling a partner can lead
to problems later. The other person may be angry that they were not told sooner, or you may
accidentally have unsafe sex – if a condom breaks, for example. Also, if a partner is not told and
they subsequently contract HIV as a result of unprotected sex, this is unethical. There is still fear
and lack of understanding about HIV; so many positive people know how it hurts to be rejected
by partners or potential partners, especially if they turn the other down in an insensitive manner.
Rejection happens to the best of us. Try not to take it personally – it is a reflection of their issues,
not of you. Some people tell potential partners about their HIV status as soon as possible, so they
do not invest feelings in someone who will later walk away. You can look at rejections as a way
of sorting out the people who were never going to make you happy anyway. The important thing
is not to hide away or give up hope! In a mixed relationship you might think a problem is HIVrelated but it might not be underneath. That is why it can help to talk to someone outside your
relationship, such as a counselor. One of you might take on more of the worry, and if sharing this
burden with your partner is not possible, talking to someone like a counselor (either together or
on your own) can really help.If one of you is infected and the other is not, you both might worry
about the HIV negative partner becoming infected. This is understandable, and these concerns
are often strongest in the early days after finding out a partner has HIV. But worries can grow
out of proportion to the real risk, putting a relationship under stress.
Over time couples often get their concerns into proportion, and are then able to take precautions
and enjoy a sex life with the least risk possible. So it helps to fully understand the risks
associated with different types of sex. You might feel that HIV is a barrier to getting close, and
that condoms get in the way. If you are the HIV negative partner you may start to feel that you
are somehow immune from being infected by your partner.You may even feel that if you both
had HIV it would result in more sexual intimacy, no more worries about getting infected and the
chance to support each other with having HIV. But such thoughts store up problems for the
future that will hurt your relationship. Two of you with HIV in your relationship will make
things more complicated than just one. And someone who allows their partner to contract HIV
could end up feeling angry with them. Talking to a counselor helps to work out ways of getting
close sexually without risking HIV.
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Unprotected sex is not the only type of intimacy; deep and honest communication is a powerful
way to get closer to one another. Using condoms is not easy, and feelings of love and passion can
lead to unprotected sex. If this happens, you should not assume HIV has been passed on. It is
never too late to go back to using condoms. After unprotected sex you might feel angry, stressed
or lacking control. A counselor can help you work out why unprotected sex happens and how to
avoid it.Keeping an uninfected partner HIV negative is important but unrealistic worries can
interfere with your relationship. All evidence points to almost all people acquiring HIV through
unprotected sex, mother-to-child transmission or sharing needles. You will worry less if you
know the facts about the risks of different types of sex.
During unprotected sex, HIV can be passed on in blood, semen, pre-cum, vaginal fluids and anal
mucus; but not in urine, tears or sweat. But this does not mean that HIV transmission with an
infected partner occurs at any time of unprotected sexual intercourse though it is real. If a
condom is not used once (or even a few times) it does not mean that the other person must now
be infected - only a test will tell. Both of you should talk to each other about what level of risk
you feel like taking. Vaginal sex without a condom is a high risk but the risk is greater for
uninfected woman than uninfected man though the risk for both is real. Condoms offer good
protection against HIV - other types of contraception do not protect against it at all. Condoms for
vaginal sex greatly reduce the risk but they can sometimes come off or break.
The risk of getting HIV from performing oral sex on someone is very low. The risk from having
oral sex performed on you is even lower and may be impossible. If you are worried about oral
sex, using a condom or latex barrier is an option. Deep kissing is safe, and masturbating someone
carries no risk if skin on the hand is healthy. Sharing a razor presents a small theoretical risk of
transmitting HIV, but sharing razors is never advisable due to the possibility of transmitting
bacterial and viral infections including Hepatitis B or C.
HIV is not transmitted in saliva and regarding cuts and blood spills, an HIV positive person with
an open wound should not be attended to by someone with an open wound themselves. Wounds
can be washed with soap and warm water. Antiseptic is useful for preventing all sorts of
infections but is not necessarily required. Lastly spilt blood can be cleaned with hot water and
normal household cleaning products. The higher someone‘s viral load, the more HIV is in their
body fluids, meaning a greater risk that the virus will be passed on during unprotected sex. HIV
treatment usually brings your viral load down, often so low that it is classed as ‗undetectable‘.
This does not mean that all HIV has gone – it is still there but in amounts too small to detect. If
someone is on HIV treatment, there is an extremely low risk of them passing HIV onto a partner
through unprotected vaginal or anal sex as long as:
Neither partner has an STI, and
The HIV positive partner has had a stable undetectable viral load for at least six months.
Condoms are still the best way to prevent the spread of STIs. Before you make any decision
about not using condoms, get advice from your HIV doctor or nurse. Try talking to your partner
and agree whether your relationship will be monogamous (no sex outside the relationship) or
‗open‘ (sex with others allowed).
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There are risks in not discussing it and assuming that your partner agrees with you. If you start a
relationship when you are all HIV negative and later on learn that one of you is infected, the
infected partner will be presumed to would have had sex outside marriage.Both monogamous
and open relationships can bring benefits and challenges. For example, some couples in
monogamous relationships say they enjoy feeling both physically and emotionally committed to
only one person. However, they may feel frustrated if they have a higher or lower sex drive than
their partner. Whereas other couples in open relationships say they enjoy the sense of freedom
and variety it can bring, but it can also highlight any feelings of jealousy or insecurity within the
relationship.
Mutual trust and honest communication are vital in both monogamous and open relationships. If
you both agree to be monogamous it is important that you discuss what would happen if one of
you broke this agreement. If either of you feels you must hide the fact that you have had sex
outside the relationship, it can seriously threaten the relationship. One advantage of monogamy
is that sexually transmitted infections (STIs) such as syphilis, herpes, chlamydia, gonorrhea and
hepatitis C can easily be checked in the relationship. If one of you has HIV, STIs can be harder
to treat and, until they are treated, your HIV viral load increases. This means that there is more
HIV in the positive partner‘s blood, semen, pre-cum, vaginal fluids or anal mucus, making it
more likely that HIV will be passed on. If you have sex outside the relationship, condoms make
it less likely that you will pick up other sexually transmitted infections (and give them to your
partner). But some can be passed on despite using condoms and through oral sex.
The risk of a person living with HIV, who is taking effective antiretroviral therapy (ART),
passing HIV on to sexual partners through vaginal intercourse is extremely low, provided the
following conditions are fulfilled:
There are no other sexually transmitted infections in either partner
The person who is HIV positive has a sustained plasma viral load level below 50 HIV
RNA copies/mL [the limit of detection] for more than six months and the viral load is
below 50 copies/mL on the most recent test.
When your partner is HIV positive
The fact that you both have HIV is not enough to build a relationship upon and everyone
responds to their HIV diagnosis in their own way. It is also not a good thing to think that only
other HIV positive people would be interested in you. Thousands of people are in happy and safe
mixed relationships. But some people prefer to have relationships with other HIV positive
people. It might seem simpler and feel more comfortable when a partner knows what it is like to
have HIV.
There are also no worries about infecting the other person, although there is the issue of reinfection to consider. And you might see no need to use condoms, which could be important to
you. Re-infection, also called ‗super infection‘, is when you contract another different strain of
HIV. If the new strain is resistant to HIV drugs, it may also affect your drugs from working or
limit the therapy you take in future.This can make you sicker faster if the new strain is more
aggressive than the strain you already have. If you have HIV you need to find out as much as you
can and make your own decision. You are more likely to re-infect others if you have a detectable
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viral load, and it is more likely the higher your viral load is. The likelihood of being re-infected
by someone can be determined by:
whether or not your viral load is undetectable
how long you have had HIV
Whether you are taking medication.
Compared to the risk of re-infection, picking up a sexually transmitted infection from having
unprotected sex is much more likely to happen. You might think that once you have HIV the
worst has happened, but continuing with unprotected sex brings the likes of infections such as
herpes, syphilis, gonorrhea, chlamydia and hepatitis C. These STIs can interfere with HIV
treatment and make you more ill - this is called co-infection. You and your partner should talk to
each other and agree whether your relationship will be monogamous (no sex outside the
relationship) or ‗open‘ (sex with others allowed). There are risks in not discussing it and
assuming that your partner agrees with you.
Some people who think they are in a monogamous relationship find out that their partner has had
sex with others. Both monogamous and open relationships can bring benefits and challenges. For
example, some couples in monogamous relationships say they enjoy feeling both physically and
emotionally committed to only one person. However, they may feel frustrated if they have a
higher or lower sex drive than their partner. Some couples in open relationships say they enjoy
the sense of freedom and variety it can bring, but it can also highlight any feelings of jealousy or
insecurity within the relationship. One advantage of monogamy is that no sexually transmitted
infections (STIs) can come into your relationship. If you have HIV, an STI can be harder to treat
and, until it is treated, your HIV ‗viral load‘ increases. Infections that can come into an ‗open‘
relationship include syphilis, herpes, chlamydia, gonorrhea and hepatitis C, a serious liver
infection caused by a virus that some people get from sex.
There is no vaccine for hepatitis C, it can cause serious liver problems, including cancer, and
treatment can be difficult and unpleasant. Re-infection with a different, more damaging strain of
HIV is also possible although it is not clear how often this happens. Using condoms with people
outside your relationship will make it less likely that you will pick up infections (and give them
to your partner) although some STIs can be passed on despite using condoms and through oral
sex.
Talking to your partner
Want to get something off your chest with your partner? Instead of attacking or withdrawing,
when you talk to them, fill in the gaps to this three-part formula: Say what it is they do that you
don‘t like. Be direct - but not accusing. Avoid just saying 'you do this', 'you make me feel this.'
That makes them feel attacked; chances are they will become defensive (by attacking back or
withdrawing). Tell them the effect of what they do.
Use 'I' statements e.g. 'I feel hurt/angry/frustrated etc. When you do this, keep the focus on how
you feel, not what you may be thinking about them. This explains to them why their actions
bother you, hopefully without them feeling personally attacked. Be constructive. Bringing a
problem out in the open is good. Saying what you would like to happen instead is better. For
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example: 'When you talk about how you fancy other people, I feel insecure and angry, so I would
like you to try and not tell me who you fancy.
Tips on listening:
We listen best with our mouths shut!
We listen with our faces, not just ears – look them in the eye. It is hard to really listen if
you are doing other things.
Interrupting is a sign you are not listening.
Asking questions will help you to understand their point and makes them feel like you are
hearing them.
Insults and changing the subject are ways of avoiding what they are saying.
Matching their complaint with one of your own is not helpful.
Try not to dismiss what they say by using phrases like 'that‘s stupid', 'you must be mad',
'yes, but' etc.
After saying how you feel ask them how they feel and what they would like.
It is a good idea to talk when you will not be disturbed, you are both relaxed and in a
good mood.
Couples often have different ways of dealing with life - this can be part of the attraction – and
part of the problem. In a relationship there's often:
The worrier and the one who thinks there is no need to worry (or show they're worried).
The talker, who likes discussing the relationship, feelings, and the future and the one who
does not like talking,
The sociable one and the one who likes time on their own.
Maybe you recognize yourself and your partner in this or can think of other ways in which you
both are different. One of the secrets of a happy relationship is learning how to deal with these
differences - especially if being in love makes you want to be the same, not different. The trick is
to find a balance both of you can live with and to share any stress. Later you will see examples of
how different ways of handling things can cause problems - and how to get over this.
Feeling of blame after contracting HIV
An HIV diagnosis is a big shock, and people deal with it differently. It is common to experience
feelings of blame, and these are completely natural and understandable. You might feel that you
are in some way to blame for contracting HIV, and that perhaps you did something wrong. For
some people these feelings can be overwhelming, and it may feel like they will never go away.
Blaming yourself excessively over a long period of time can negatively affect your confidence
and self-esteem. Although it can be useful to understand why you put yourself in a risky situation
and what you might do differently in the future, try not to be too hard on yourself. These feelings
are completely normal, and will get better with time. If you have told your family or partner
about your HIV diagnosis you may feel to blame for causing them worry. You might feel that
members of your family or partner blame you, even if they have not said so.
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Or it might be that you have directly been blamed for causing them concern, which can be very
difficult to cope with. It may be helpful to try to distinguish between feelings of blame and your
own guilt, and to talk about these feelings openly with them.
Immediately after a diagnosis some people feel very angry, and want to blame whoever infected
them with HIV. For other people these feelings might come sometime after diagnosis, or not at
all. This is likely to depend on how you contracted HIV, and from whom. Although this can be a
normal part of accepting your diagnosis and the feelings will fade, for some people these feelings
of anger and blame can be hard to get past. In this case it may be helpful to consider whether it is
too difficult to accept your own part in how you contracted HIV.As a parent, you may be
concerned about whether HIV will affect your relationship with your child. If they are HIV
positive, you will also be concerned about how the virus will affect them. Talk to your child
about HIV and answer any questions that they raise, whenever they raise them. Reassure your
child that with treatment someone with HIV can live nearly as long as someone without HIV.
There are measures that can be taken to reduce the risk of passing HIV onto your child. Ensuring
your child is not put at risk of HIV infection does not mean you should keep them at a distance.
By all means, you should feel free to cuddle them, kiss them and generally show them the love
and affection that you have for them. As the child gets older, you may feel ready to tell them that
you are HIV positive. They may be shocked or upset by the news or may not be able to keep it to
themselves, and this could cause problems for all of you. Whether you have just told your child
about HIV or whether they have known they are positive for a while, it may also leave them
feeling sad, angry or confused. They may be wondering what this means for their health, whether
they can do all the things other children or young people do and whether they will be able to
have a boyfriend or girlfriend.
Some parents also find that their children blame them for their HIV status. Again, clear
communication about the reality of living with HIV will help reassure your child. Many people
find that their community of faith is supportive during hard and difficult times in life. Your
diagnosis with HIV may at times be associated with these types of feelings. Continuing to
participate in your community of faith can give strength, courage, encouragement and feelings of
hope. Unfortunately, some faith groups find HIV and sexuality difficult topics to discuss. As
with any group of people, there runs the risk of stigma and discrimination when a subject cannot
be addressed openly.
Stigma and discrimination are difficult burdens to bear, and may lead to withdraw from your
faith community or become silent. Many people living with HIV often do not disclose their
status within their faith community because of fears of being treated differently. As a result, faith
communities may wrongly believe that everyone feels welcomed and safe.Nevertheless, do not
be pressurized to disclose your HIV status until you feel comfortable with it. Although some
faith communities‘ hold views of stigma and discrimination, this is certainly not true for all faith
leaders or communities. Should you choose to be part of a faith community, it is important to
find one where you do feel welcome and where you can disclose your HIV status without the
fear of being rejected, discriminated against or stigmatized.
16
HIV DISCLOSURE
If you are HIV positive, choosing who to tell can be a difficult decision and it is important to
think about how different people may react being told that you have been diagnosed with HIV.
You may feel like telling people soon after you receive your HIV diagnosis - but once you have
told someone you cannot ‗un-tell‘ them again. It is important to think about how different people
may react to being told that you have been diagnosed with HIV. Things to think about include:
Why should I disclose my HIV status to this person?
Are there any benefits to telling them?
Are they effective at discussing emotional issues?
What will I do if they don‘t react in the way I expect or hope for?
Can I trust them not to tell other people?
Telling someone that you have HIV can be a very positive experience and will hopefully mean
that you have someone to offer you support. But you have to be prepared for different reactions.
Some people may become upset at your news, especially if they do not know much about HIV.
Once people realize you can lead a normal life with HIV they may be better able to support you.
Unfortunately some people may not react in the way you hope and may be unkind or
discriminatory. If this happens there is support available such as counseling or support groups.
Before disclosing it can be helpful to consult a healthcare professional at your clinic. Whether to
tell your friends about your diagnosis will depend upon your relationship with them.
Often, confiding in a good friend can be an invaluable source of support. Friends can be as close
as your family, or even closer. If you have not shared much personal information with friends in
the past you might not want to tell them about your status. But if there is someone who has
previously been helpful, this person could be supportive now. Is there someone who accepts and
loves you, who respects your privacy and is a good listener as well as being practical, sensible
and reliable? It is important to think about how they might react. You may have friends who are
already knowledgeable about HIV and others who know less; so it is important to get prepared
for a reaction you were not expecting.
Deciding which friends to tell might also depend upon culture. In some communities HIV is
something which is hard to talk about because of the fears people have about it or the myths they
believe. In addition, friends from some cultures may have incorrect information about HIV and
treat you differently or unkindly. If you think your friend might react like this, it may be easier to
get support from HIV agencies or a peer support group. Sometimes people may become upset
and try to exaggerate worries about what your diagnosis means for your health. They may also
be concerned about the risk of transmission to them. It is also important to think about the timing
of your disclosure. Someone may be hurt to find out about your HIV diagnosis after other people
have been told but in other cases it will do no harm for them to find out later.
Disclosure: Self-assessment
Who is told, and how, can take a bit of thinking through. Telling close friends and family can
provide enormous relief and support, but it can also cause problems. Different illnesses can bring
particular worries about who to tell and how. At first you may not tell anyone, not even your
partner, and your family still has no idea, but you may want your friends to know, even though
actually telling them is so difficult. You find yourself sounding out their views, how much they
17
know about AIDS; whether they realize you‘re not a threat to them, how discreet they will be.
Do people really need to know? Do they need to know immediately? Unfortunately, it is a fact of
life that there is a lot of stigma attached to the HIV diagnosis. Who to tell and how to unleash
will take a bit of thinking through. There can be advantages to talking openly about your status,
but it could cause you problems. Be careful who totell, do not rush off and tell everyone straight
away - you might regret telling them later. Do they really have to know? If so, do they have to
know now, or can you leave it till later? But sharing the news of your positive status with the
right people can strengthen personal relationships and help you feel less isolated.
Probably the first thing that someone you tell will think about is how you got infected. If they are
kind enough not to actually ask, be careful that they are not making assumptions about you. For
example, in some communities an HIV positive woman is presumed by many people as a
prostitute. Talk to people you can trust, but try to make sure they will respect your need and right
to confidentiality on this issue. Try to make sure whoever you discuss with is sympathetic to
your viewpoint, someone who will not judge you on your lifestyle, sexuality or being HIV
positive. This might be difficult, and though you think you know who your friends are, telling
others about this might either confirm or damage personal relationships. Just as your HIV
positive result was possibly a big event to happen in your life, if you are in a relationship the
news will also have an impact on your partner. Consider the highly emotional aspects of
revealing your status and, if possible, avoid the "heat of the moment" to reveal all.
No two relationships are the same, so it is difficult to give advice in this situation. If you are
going to tell, do not delay it for too long. If they are negative, or untested, they might resent you
keeping it to yourself, adding unnecessary worry about any risk of infection they might have
been in. Of course, if you discussed the issue before you were tested, talking through the result
might be easier. If you are in a serious relationship, telling your partner is one of the first things
you will probably think about. Many turn to their partners for comfort and support. However,
you may lose your partner‘s love when you disclose. It is normal to feel nervous, embarrassed, or
even fearful of your partner‘s reaction.
Since you and your partner most likely have a sexual relationship, you do need to let them know
that they may have been exposed to HIV and should get tested. Also, you now need to think
about practicing safer sex to avoid contracting another strain of HIV. Disclosing your HIV status
can put a strain on the best of relationships. It is important to think about when and how to
disclose, but keeping the information to yourself for too long is probably not a good idea. It may
be helpful to getting some professional counseling. Be aware that women are at risk for violence
when disclosing their HIV status. If you are worried that your partner may become violent, think
about having the discussion with another person you trust present: a therapist, an HIV advocate,
or a health care professional. You will probably need a lot of time to work this one through.
Whether you tell previous partners depends on lots of things, including whether you are still
involved with them now, what they know about HIV, whether they are HIV positive themselves
(and how do you find out?), and whether they need to know, perhaps because you had unsafe sex
with them before you knew your status.
How will either of you deal with worrying about who gave whom what? If you are dating, you
have to face the question of disclosure with each new relationship. You may prefer to get the
18
issue out into the open immediately. Or prefer to wait and see if the relationship is going to
develop beyond casual dating. Although you may know about safer sex and how HIV is
transmitted, fear and stigma are realistic. Your HIV status may prevent some from wanting to see
you, while others may not be put off by the information. In most cases, sharing your HIV status
is a personal choice, but in case of sexual relationships, it can be a legal requirement. It is best if
you disclose your status prior to having sex with anyone new.
Non-disclosure of HIV status in a sexual relationship can lead to criminal charges whether or not
your partner becomes infected with HIV. In most countries, it is mandatory that you disclose
your HIV status before knowingly exposing or transmitting HIV to someone else. Penalties vary
from country to country. In many countries, you can be found guilty of a felony for not telling a
sexual partner you are HIV positive before having intimate contact. If you have children, you
may have additional concerns about whether to tell them your diagnosis and whether they need
to be tested too. There are a number of reasons why it is important to talk to children.
Children tend to sense when something is wrong and not talking about a serious illness in the
family may suggest that it is too terrible a subject to be discussed. Children also have an ability
to deal with the truth which adults sometimes underestimate. Not knowing things can make them
feel anxious, and even sad truths will be better than the uncertainty of not knowing what is
happening.Explain to a child that you are ill and tell them generally what you think may happen.
You do not have to tell them everything at once; you can give a bit of information at a time.
Generally it is best not to offer more information than is asked for, and to let them ask questions
at their own pace. If you do not know the answer to something they ask, you can say that you do
not know. As a parent you may well need to talk to someone with experience in this area - your
clinic or local AIDS service organization, or other parents with HIV might be able to help.
Disclosure could be when you find out who your friends really are. Carefully deciding who to
tell might teach you how to deal with telling others. Common reactions are: shock, pity,
disbelief, helplessness, or endless questions. Some people may decide they do not want to know
or see you anymore. But your real friends will carry on as before, liking and loving you for who
you are, supporting you through any problems you have. Remember, being HIV positive does
not stop you from being the person you were before. You do not have to tell everyone that you
have HIV. However, it is important that you tell your current and past sexual partners and
anyone you have shared needles with.
This way they can be tested and seek medical attention if required. If you are afraid or
embarrassed to tell them yourself, the health department in your area can notify your sexual or
needle-sharing partners without even using your name. You also need to tell your health care
providers to ensure you receive appropriate care. Your health care provider may ask how you
might have got infected to determine if you are at risk for other diseases, such as hepatitis C for
injection drug users and other sexually transmitted diseases (STDs) for women infected through
sex.No two families are the same either. If your immediate family is supportive and loving, your
news will bring them anxiety and pain, but could also strengthen your relationship.
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The alternative is that some members of your family will shun you. If you are a catholic priest do
not assume your church (followers) does not know if you have not come out to them. They may
have chosen to ignore "that part of your life", perhaps inventing their own excuses.
Not telling parents could eventually make them even more upset. You know your family better
than anyone else does, it might be a gamble, but it is your decision. Your family and friends may
want to help, but in many cases they do not know what they can usefully do, and you may need
to help them to do what is useful to you, as well as sometimes to do things that are useful for
them. Exactly what this is depends on you and your particular circumstances. For some people
talking to parents can be as important as it is for other people talking to their children. You may
not have seen your parents for some time; you may have a partner or other important people in
life that your parents may not know about. But sometimes those close to you will surprise with
how supportive they can be. Some people prefer to go on their own to see their doctor or other
health professionals, but you may find it helpful to have someone for company.Move with
someone who can write down the stuff that gets said and can make sure that all of your questions
are asked. It is good to have someone who can help remember later and can help remember the
questions that you wanted to ask.
Practical assistance can also be useful. It can be very hard to ask for help, so practical assistance
is wonderful. Offer to go to the supermarket, or help with gardening or cleaning.You may
sometimes need to tell people what does not help. ―Be honest with people - I hate it when people
tell me: ‗It will be alright.‘ I know they are only trying to reassure themselves, but it really does
not help me! Ride with it and remember that everyone has bad days. Ask for help and support if
you need it.‖ And when people say that they understand how you feel, you may need to tell them
that they do not. As put by one client; ―I do not think even those close to me really understand
how this feels to me, and they are sometimes shocked at my wicked sense of humor which comes
as a result of living with the disease. I need to make a joke of it, and people cannot quite
understand that, but it is a way that I cope. Who knows what tomorrow will bring?‖
Disclosing your HIV status can be stressful. While you may receive love and support from some
people you tell, others may not be as accepting. Try to find someone that can support you
through this difficult process. If you have not told any family member yet, turn to your health
care provider, social worker, counselor, or AIDS service organization (ASO). Disclosing your
HIV status has an effect on the people you tell. People react differently to the news. Your friends
and family may immediately embrace you and accept your diagnosis. Others may react
negatively or need some time to process what you have told them.
Just like you, people you tell will need support too. Try to leave them brochures or books about
HIV that they can look at later. Give them the addresses of persons that provide information on
positive living. Also let them know who else is aware of your status, so that they can approach
each other for support.
Disclosing to your Family members
If you have been diagnosed with HIV you may be thinking about telling family members but
your decision will depend on the relationship you already have with them.
20
If you have a relative you are close to, who has been helpful in the past, they could be supportive
now. Are they someone who accepts and loves you, who respects your privacy and is a good
listener as well as being practical, sensible and reliable? Family members may have incorrect
information about HIV and treat you differently or unkindly. If you think your family might react
like this it may be easier to get some support from an HIV organization or a peer support group.
If you do decide to tell someone in your family, it might be useful to have some leaflets you can
show them - people may have exaggerated worries about HIV and having something to read may
be reassuring. You may worry that if you become unwell and have to be admitted to hospital, the
medical staff might disclose your HIV status to your relatives against your will.
Generally professional doctors do not disclose your status – they might explain that you have a
condition like pneumonia, for example, without mentioning your infection.But in some situations
medical staff might encourage the disclosure of your status so you can get support from your
family, but they will not force you to do so. Often people do not understand the ways HIV can be
passed on, or your relatives may feel worried and upset about your health. They will be reassured
to know that you are getting good care from the clinic and that you know where to get support
and how to take care of yourself. If you are a parent you may be thinking about telling your
children that either you or they have HIV. They may be shocked or upset by the news or may not
be able to keep it to themselves, and this could cause problems for all of you. It is a good idea to
get some support before disclosing to your children from a family support worker or an HIV
organization that works with families with children.
Disclosing to sexual partners
If you have just been diagnosed with HIV you will be thinking about whether to tell your partner,
whether they are long-term or casual. Telling a sexual partner about your HIV diagnosis can be
stressful especially as there may be concerns about HIV being passed onto them. Your partner
may need to have an HIV test and might have to wait until a window period has passed to do so.
You may be in a long term or casual relationship or you might just have sex with someone
once.In each of these situations the decisions you make about disclosure will be different. It is
helpful to think about the different reactions partners may have to hearing about your HIV
diagnosis.
Hopefully your partner will be supportive but it is always possible that they may react badly.
Some people face particularly difficult situations. You may live with your partner and be worried
about losing your home, for example, or you may be worried about domestic problems or
violence. There may also be legal reasons to tell your partner. One benefit of telling sexual
partners about your status is that if they are exposed to HIV when you have sex (if a condom
breaks, for example) they can take treatment that may prevent them becoming HIV positive.
Whether you tell previous partners can depend upon a number of factors such as what your
relationship was like and whether the kind of sex you had posed a risk of transmission.
Telling previous partners can be difficult and you can ask staff at your HIV clinic to contact your
ex-partners and sexual partners for you. They can do this without giving any of your details
away. When thinking about telling a casual sexual partner about HIV it is worth thinking about
why you want to tell them. The reasons you have for telling (or not telling) may depend upon the
kind of relationship you want to have. For example, do you plan to see the person just once or
21
are you hoping for a longer relationship? It may also depend upon the kind of sex you want to
have. If the risk of passing on HIV will be very low, some people see no reason to disclose their
HIV status.
Others tell partners to make it easier to make informed decisions together about sex, while some
people do so because of the law which may vary from one country to another. If you have just
met someone, you might not feel that you know enough about them to anticipate their reaction,
or to judge whether they will respect your privacy. You might meet the person somewhere like a
bar or party, where it feels out of place to talk about HIV. Some people prefer to talk about their
status in a more neutral environment, at a later date or wait until they have got to know the
person better. Other people drop HIV into the conversation very early on, in a casual and matterof-fact way, so that if the other person cannot accept it, no time is lost.
Disclosing to Doctors/General Practitioners (GP)
It can be sensible to tell your GP that you are positive because, when treating you or prescribing
medicines, they need to know about other health issues and medicines you take. Doctors cannot
refuse to treat you because you have HIV. Doctors cannot talk about your health with your
family, friends or anyone else or show them your medical records; however sometimes they may
need to disclose your status. Medical information is usually shared within the healthcare team,
for example, and with other health workers treating you. But you can ask your doctor not to do
this and, unless it would put another worker in danger, the doctor must respect your wishes.
An example of a situation where a doctor may need to let another worker know about your status
would be if a nurse had taken blood from a positive person and had accidently pricked
themselves with the needle. A doctor may have to reveal medical information about you if forced
to by a court or requested by the police, or if they think somebody‘s life is at risk. Your doctor
will probably note your status in your medical records.It is unethical for dentists to refuse to treat
someone with HIV. There is no risk of HIV transmission during dental treatment if standard
sterilization and hygiene procedures are taken. If you experience discrimination, you can report it
to your nearest authority. The benefits of telling the dentist about your status is that they can
check for HIV-related gum problems, and ensure that any medicines they use do not interact with
anti-HIV drugs.
Disclosing to teachers or fellow students
If you are the parent of a child with HIV, you may be considering whether or not to tell a teacher
at their school. Or you may be a student with HIV thinking about telling a teacher, tutor or
lecturer at your school, college or university. If your child is HIV positive, you may be unsure of
what is in place to protect your child's confidentiality at school. This can also be useful if your
child does not have HIV but sometimes stays home from school because one or both of their
parents is positive and needs care.
A child who is infected and affected by HIV has the same right as any child to attend school and
access same education. You are not obliged to disclose that your child or a family member has
HIV. If you do decide to disclose your child‘s status, only two teachers need to know about it.
This would usually be the head teacher and another member of staff chosen by you and your
child. It is good practice for schools to have procedures in place if a parent tells them a pupil is
22
HIV positive.Any medical information you disclose should be kept confidential. It can be useful
to tell the school if your child has to have frequent time off for medical appointments or to care
for other family members. It can also be a good way to ensure your child has some extra support
and religious care if they need it.
Very young children may need a teacher to monitor their anti-HIV medication. If you are at
school or are about to start college or university, you may also be thinking of disclosing your
status to a teacher, tutor or lecturer. This may be a good idea if you frequently absent because
you are unwell or because you care for a family member. If your own status or a family
member‘s HIV impacts on your education, it may be worth telling someone who can offer you
support to complete your work and attend college as much as possible.
The essence of disclosure
Most people mainly women prefer to disclose their status to close friends and family members
who they trust. For many, telling those closest to them leads to both emotional and practical
support. You may become more public and use your own stories to advocate for others within
the government or in the media. You may also disclose for educational purposes to neighbors,
community and religious groups, schools, other HIV positive people, or healthcare providers.
Many persons find a sense of purpose and increased self-esteem by telling their story. You may
want to consider how much of your story you are ready to tell.
Many people will ask how you became infected. If you decide not to share that information, have
a reply ready such as, ―does it really matter?‖ or simply state that you are not ready to talk about
that. For a parent considering telling their children, it is important to ask yourself why you want
to tell them:
Will they be angry if you keep a secret?
Do they suspect something?
Are you sick?
Children can react to news of HIV in the family in many different ways. Older kids may be upset
that you kept a secret from them. Younger children may just want to go back to their toys. Partial
truths can be helpful when telling children. You may decide only to tell them as much as you
consider appropriate for their age. Do not forget that kids need support too. If you can, give them
the name of another adult they can talk to, perhaps an aunt or grandparent.
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HIV AND PARENTHOOD
Many people with HIV have a strong desire to have children – and, indeed, many HIV-positive
people are parents. Your HIV status does not mean that you cannot think about having a family.
With the right care, HIV positive women can give birth to children without passing on
HIV.There are a number of techniques and fertility treatments that can allow people who are
HIV-positive to become pregnant or father a child safely. For example, men who are HIVpositive may be able to father a child using a technique called sperm washing. Another option is
donor insemination. Women who are HIV positive and have an HIV-negative partner can use
self-insemination to become pregnant. Talk to your healthcare team about your situation and the
possibilities available to you. Adoption or fostering might be another option. Having HIV does
not automatically mean you cannot adopt, but your health and circumstances would be assessed
before you could apply, to ensure the child‘s long-term needs can be met. Similarly, you can
adopt or foster a child if you are single, or any type of sexual orientation, as long as you can
show that you can meet a child‘s needs.
Thinking about pregnancy
With good medical care and HIV treatment, HIV-positive women can give birth to children
without passing on HIV. If precautions are not taken, there is a risk of a mother passing HIV on
to her baby in the womb, when the baby is being born or during breastfeeding. But many women
with HIV give birth to HIV-negative children.With the right treatment and care, only one baby in
1000 is likely to be born with HIV. If you are thinking about having a baby, but not pregnant yet,
it is important to talk to your doctor first, so that he or she can check if you are in good enough
health to have a baby safely. Staff at your
The HIV clinic can also guide about how to get pregnant without putting your partner at risk of
infection or reinfection. It is worth telling your HIV doctor or nurse that you would like to try to
become pregnant to get the best advice:
Pregnancy will be easier if HIV is not causing serious health problems at the moment.
If you have a sexually transmitted infection, or any other infection, you need to wait until
it has been treated
There are ways to get pregnant that limit the risk of passing HIV onto your partner, if he
is HIV negative.
It is important to follow the advice for all women who are planning pregnancy. This
includes stopping smoking, eating healthily, avoiding alcohol, taking care over food
poisoning and taking folic acid supplements
There are some anti-HIV drugs which you may want to avoid during pregnancy – your
doctor can tell if it would be safer to change your treatment. However, these are drugs
that are very rarely used now, and the chances are you will not change your treatment.
Some women find it difficult to become pregnant, and there can be medical reasons for this. If
you are not pregnant after six months of trying, go back to the doctor. There may be tests and
treatment that could help.Women usually get pregnant by having unprotected sex with a male
partner, but this is not always the best way when one or both people have HIV. Talk about your
options with your healthcare team if you are thinking of having a baby. If one partner is HIVnegative and one has HIV, if you have unprotected sex, there are two risks to be aware of:
Passing on HIV to your partner
Sexually transmitted infections
24
An untreated infection could have serious consequences for you and your baby, so both you and
your partner should check that you do not have any infections before having unprotected sex.
If both you and your partner have HIV, there are two risks associated with unprotected sex:
Reinfection with a different strain of HIV.
Sexually transmitted infections
If you are an HIV-positive woman, and your partner is HIV-negative, you can use selfinsemination to get pregnant. If you are an HIV-positive man, you could consider a technique
called sperm-washing. You can use this process if your partner is HIV-positive or HIV-negative.
Some couples do have unprotected sex to get pregnant, usually only on those days when the
woman is fertile. But this is dangerous because there is still a risk of transmission of HIV to the
negative partner, or reinfection, even when someone is on effective treatment with undetectable
viral load. If you are thinking about having unprotected sex, it is very important that you and
your partner discuss your options and the risks with your healthcare team before making a
decision to have unprotected sex.
There are other options, using other sorts of fertility treatment such as donor sperm. Talk to your
healthcare team about these, and whether you might be able to get them. Adoption might be
another option. Having HIV does not automatically mean you cannot adopt, but your health and
circumstances would be assessed before you could apply.
Self-insemination
This technique is suitable for HIV positive women whose male partner is HIV negative and is a
simple process that can be done at home. You will need to make sure that neither you nor your
partner has a sexually transmitted infection before trying it. This is best done when you are
ovulating (your fertile period). It is best to try the technique several times during your fertile
period.
1. Your partner will need to ejaculate into a container. The container does not need to be
sterile, but it should be clean and dry.
2. Next you will need a plastic syringe. Your HIV clinic can provide them, or you can buy
the kind used to give medicine to babies at a chemist.
3. Wait up to 30 minutes for the semen to become more liquid.
4. Draw back on the syringe once with nothing but air, then push the air out again. Now
point the syringe into the liquid and slowly draw it back to suck in the semen.
5. Get into a comfortable position lying on the bed with your bottom raised on a cushion.
6. Either you or your partner can now slowly insert the syringe as far into the vagina as
possible.
7. The area to aim for is high up in the vagina, towards the cervix.
8. Slowly squirt out the contents of the syringe. Gently remove the syringe.
9. Try to remain lying down for the next 30 minutes while the sperm makes its way through
the cervix. Some semen may leak out but this is normal, and does not mean that it did not
work.
Another alternative method is for you and your partner to have sex together, using a male
condom. After sex, withdraw the penis from the vagina with the condom still on. Then take it
25
off, and use a syringe to transfer the semen to the woman‘s vagina. If you use this technique,
make sure that the condom does not contain a spermicide. The healthcare team at your clinic will
be able to provide syringes and information on how to calculate and recognize when you are
ovulating.
Sperm washing
Sperm washing could be an option for couples, who are both HIV-positive, or where the man is
HIV-positive and the woman is not. It is a technique used to separate the seminal fluid, which
contains HIV, from the sperm, which do not contain HIV. The remaining sperm are placed in a
substitute fluid and inserted into the woman‘s vagina when she is ovulating (the time when
women are most fertile). Although it cannot be absolutely guaranteed that no HIV remains,
sperm washing is very safe. Your doctor or GP can give you more information or answer any
queries you may have regarding sperm washing.
To be eligible for sperm washing you will need a referral from your doctor with details of your
viral load and CD4 count. There may be other eligibility criteria, depending on which clinic you
go to. If you have difficulty in conceiving or if your partner has a low sperm count, you may
want to investigate IVF (in vitro fertilization) together with sperm washing. You can ask your
doctor for a referral to an assisted conception unit where you should receive the same service as
couples who are not HIV-positive.The success rate for sperm washing varies depending on
technique used to implant the sperm. You could also consider the option of using donor sperm.
Contraception
Contraception is a way to prevent pregnancy and to plan pregnancy for a time when you are
ready to have a child. There is a wide range of methods to choose from. Most contraceptive
methods are used by women. Condoms are the only contraceptive designed for men to use. Some
contraceptives need to be used carefully to be effective. Condoms and Femidoms (female
condoms) will only work if you remember to use them and you use them properly each time. If
you are taking the contraceptive pill, you need to remember to take it every day.Condoms and
Femidoms are the only contraceptives that will also reduce the chances of HIV and sexually
transmitted infections being passed on.All types of contraception (except the diaphragm and cap)
are suitable for women with HIV who are not taking treatment. Some methods are less effective
if you are taking anti-HIV drugs.
Several anti-HIV drugs interfere with the way some ‗hormonal‘ contraceptives work, and the
contraceptive may not be as effective as normal. These hormonal contraceptives are less
effective if you are taking HIV treatment:
The combined pill
The progestogen only pill, also known as the mini-pill
Patches – a small beige patch applied to the skin and changed once a week
Implants – a small flexible rod inserted under the skin on the upper arm, which works for
up to three years
Vaginal rings – a small flexible ring inserted in the vagina for three weeks of the month.
26
Emergency contraception
Emergency contraception can be used by a woman if she has not used contraception when
having sex, or if the contraception she did use failed for some reason, and she does not want to
get pregnant. There are two types of emergency contraception: the emergency contraceptive pill
and the intrauterine device (IUD). The emergency contraceptive pill (also known as the morningafter pill) is available to buy from chemists without a prescription. It is affordable and some
institutions give it out free of charge. You need to take the pill within 72 hours of having sex.
The sooner you take it, the more likely it is to work. There is a another type of emergency
contraceptive pill that can be taken up to five days after unprotected sex , but you need to get a
prescription for this pill from a doctor and be over eighteen. It is important to let the doctor or
pharmacist know if you are on HIV treatment, as some anti-HIV drugs interfere with the way the
emergency contraceptive pill works, and you will need to take twice the normal dose.
The intrauterine device (IUD) is a small, plastic and copper device that can be fitted into your
womb by a doctor or nurse within five days of having unprotected sex. You can have this done at
a family planning clinic, sexual health clinic or at some General Practitioner surgeries.The IUD
stops sperm from reaching an egg and fertilizing it. It is the most effective method of emergency
contraception and prevents up to 99% of pregnancies. It is suitable for women with HIV as it
does not contain any hormones. You may want to continue to use it as a long-term form of
contraception. But remember that this type of contraception does not prevent passing on HIV or
other sexually transmitted infections.
Preventing mother-to-child transmission
Taking anti-HIV drugs can dramatically reduce the risk of transmitting HIV to your baby. Many
women with HIV give birth to HIV-negative children, by taking the following precautions:
taking anti-HIV drugs during pregnancy
making a careful choice between caesarean section and vaginal delivery
not breastfeeding
Giving the new baby an anti-HIV drug for a few weeks.
By doing these things, the chances of having a baby with HIV is very low – under 1%. If you are
on HIV treatment and have an undetectable viral load, the chances are lower still: 0.1%.
There are two different ways in which anti-HIV drugs act to prevent mother-to-child
transmission. First, they reduce the viral load so your baby is exposed to less HIV while in the
womb and during birth. The aim of HIV treatment is to get, and keep, your viral load to
undetectable levels (if your viral load is below 50, it is usually said to be undetectable). Second,
anti-HIV drugs may cross the placenta and enter your baby‘s body, preventing the virus from
ever taking hold. Newborn babies are given a short course of anti-HIV drugs after they are born
when their mother is known to be HIV-positive. You can reduce the risk of HIV transmission
further by having a managed delivery.
The doctor will look at your viral load when you are 36 weeks pregnant and discuss options with
you. If you have an undetectable viral load, it is usually recommended you have a vaginal
delivery. You will need to continue with your HIV treatment during labor. If the viral load is
27
visible, but very low, the doctor will look at your particular situation and discuss possible
options. But if the viral load is somehow promising, you may have a planned caesarean section.
You will be advised to start your baby‘s four weeks of anti-HIV drugs in the first four hours after
he or she is born, and will have an HIV test in the first 48 hours. Further tests will be done in the
next months to find out his or her HIV status. It is important to remember you should not
breastfeed your baby if you have HIV as HIV is present inbreast milk.
HIV treatment during pregnancy
If you are already taking anti-HIV drugs and you have an undetectable viral load, you will
normally continue with your treatment throughout pregnancy. If you are not yet on HIV
treatment, but need it for your own health, you will be advised to start as soon as possible, in the
same way you would if you were not pregnant. The situation will be a little different if you are
not already on treatment and you do not need it for your own health. The doctor will advise when
to start taking anti-HIV drugs during the second trimester of the pregnancy (which is between
weeks 13 and 28). It is ideal to start treatment by week 24 of your pregnancy.
The higher the viral load, the earlier you will be advised to start taking treatment. If your viral
load is over 100,000, you may be advised to start treatment before the second trimester starts.
You should continue taking the drugs for the rest of the pregnancy. Your healthcare team can
help you with ways to make sure you take your drugs properly if you are not used to this.After
the baby is born, you can talk to your doctor about whether you need to continue treatment or
not. If your health is good, with a high CD4 count and a low HIV viral load, and you are willing
to have a caesarean section, you may take one drug only.
Most women take a combination of three anti-HIV drugs. You will need to be on combination
therapy, and have an undetectable viral load, if you would like to have a vaginal delivery. You
will be advised to start taking combination therapy immediately if you are diagnosed late in
pregnancy (after week 32). In this case, you may take a combination with a fourth drug. AntiHIV drugs are safe to use in pregnancy. There may be a slightly increased risk of giving birth
prematurely or having a low birth-weight baby. Also, some babies do get anemia (a shortage of
red blood cells), but this is temporary.
Accessing support while pregnant
All women have the right to make their own choices about if and when to have children. If you
are having a baby, you should expect and receive the same level of support from doctors and
healthcare workers as women without HIV. Your healthcare team will play a key role in helping
you stay well while you are pregnant, and in preventing your baby being infected with HIV.
Developing a good relationship with members of the team is a very important part of getting the
best possible care. There are many HIV support agencies which can provide information, advice
and assistance to you at any point. Or you could talk to one of the professionals you are currently
receiving HIV services from. That might be someone at your clinic - such as a doctor, health
adviser or nurse - a social worker, or an advice worker. Talking to other HIV-positive women
who have been through the experience can help to make decisions about pregnancy, birth and
looking after your baby‘s health. Many women only discover they have HIV soon after they find
out they are pregnant.
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Knowing you have HIV will allow you to take steps to look after your health and protect your
baby, but it can be an overwhelming time. There can be mixed feelings, lots of new information
to take on board and pressure to make decisions quickly about taking anti-HIV drugs. It can be
helpful to spend time talking things over with a doctor, nurse, midwife or someone from any
HIV organization.Hopefully you may also be able to talk to other women who have been or are
in a similar situation. Feel free to ask lots of questions (and make sure they get answered). If you
are diagnosed with HIV while pregnant then you may need emotional support in coping with
your diagnosis and information about transmission and treatments.
Antenatal care
Good antenatal care is important to anyone expecting a baby. If you have HIV, it is an essential
part of reducing the risk of your baby being born with HIV, as well as helping you stay well
during your pregnancy and prepare for looking after your baby when he or she is born. You are
likely to be looked after by a team of healthcare workers during your pregnancy. You will still
get your care at your HIV clinic. But, as well as your HIV doctor and clinic staff, you are likely
to see an obstetrician (a doctor who delivers babies), a specialist midwife and a
pediatrician.Other people you may see, depending on any advice or help you would like or might
need, could include a peer support worker, a community midwife, a counselor, a psychologist, a
social worker or a patient advocate. Some of these people can help with any other issues you
might have, such as problems with housing, finances or alcohol and recreational drug use.
Many women find that peer support is a valuable part of preparing for pregnancy, birth and
parenthood. Your health care team can help you adhere to any treatment you need to take and
answer questions about your health and that of your baby. You can also talk to them about the
best way to feed your baby, and how to explain to people why you are not breastfeeding, if you
think that might be a problem. Like all health professionals, the members of your antenatal care
team are bound by confidentiality guidelines. They will not disclose your status to anyone
without your consent. Women with HIV generally have the same antenatal screening tests as any
pregnant women, such as regular ultrasound scans and tests for abnormalities (there is no
evidence that rates of abnormalities are higher in babies of women with HIV). You will be tested
for sexually transmitted infections as part of your care during pregnancy, as these can increase
your HIV viral load and increase the risk of HIV being passed on to your baby. As any pregnant
woman would, you are likely to attend antenatal classes to help you prepare for birth and early
parenthood. And, like any other pregnant woman, it‘s important to have a balanced diet, and to
avoid alcohol, tobacco and recreational drugs. Your healthcare team can help you simplify these
things.
Effective care after birth
Avoid breastfeeding. Because breast milk contains HIV, which means you could pass on HIV if
you breastfeed. Always bottle-feed your baby with infant formula milk. Breastfeeding your baby
is not good. Because breast milk contains HIV, which means you could pass on HIV if you
breastfeed. The clinician will provide advice on feeding your baby safely and comfortably.If you
have money worries, help may be available for the cost of formula feed and equipment. Feeding
time can still be an occasion for bonding and holding the baby close. You may have mixed
feelings about bottle-feeding, especially if most mothers you know do breastfeed. Remember, by
29
bottle-feeding you are taking the best care of your baby, and are giving him or her best chance of
growing up without HIV. Family and friends may ask why you are not breastfeeding, and
dealing with their questions can be difficult. If you do not want to talk about HIV, you could say
that you are not producing enough milk, that you have mastitis (inflammation of the breast), or
that you have cracked nipples. Your baby will also need to take a special liquid form of anti-HIV
drugs for a number of days after birth. This does not mean that the baby has HIV.
To check that your baby is not infected, HIV tests will be done just after birth, at six weeks, and
at twelve weeks, with a final HIV antibody test at 18 months. If these tests are negative and you
have never breastfed, you will know for sure that the baby does not have HIV. You need to avoid
breastfeeding, but apart from that, HIV transmission is not an issue in day-to-day life with your
baby. You can kiss and cuddle without worry. Most women feel sad or down during their baby‘s
first year. The overwhelming life changes brought about by a new baby are always challenging,
but they can be particularly complex for women with HIV. Your baby‘s arrival could be
accompanied by anxiety about the future, self-doubt and exhaustion. You might have nagging
worries that your child has HIV, even when the test results tell you otherwise.
Perhaps you can ask friends and family for help with some things, but cannot talk about HIV
with them. Your midwife, other clinic staff, support organizations and other HIV-positive
mothers will be able to support you through this time.
Terminating pregnancy
You may find this information useful if you consider having an abortion while pregnant and do
not feel like having a child. If you are faced with this situation, a first step could be to talk over
your options with someone with experience of these issues. You may have mixed feelings, and
not be sure what you want to do. Remember that, although you have HIV, you can still have a
healthy, HIV-negative baby. But it is up to you to decide if and when you have a child. You
could speak to someone at a contraceptive clinic, a sexual health clinic, your HIV clinic or your
GP surgery.
Two main techniques are used for abortions done in the first three months of pregnancy:
Taking one tablet one day, and different tablets up to two days later. The pregnancy will
end after a few hours, and may feel like a heavy period. This is often called ‗medical‘
abortion.
The suction method, where a tube is placed through the vagina to the womb and the
pregnancy is sucked out, under a local anaesthetic. This is called a ‗surgical‘ abortion.
Both techniques are as safe for women with HIV as for other women, and are carried out in the
same way. An abortion done during the first three months of pregnancy is more straightforward
than one done later on. You will not usually need to stay overnight if you have a surgical
abortion. Other, more complex methods are used for later abortions.
Abortion is legal in some countries and only allowed in exceptional circumstances. Abortions are
usually carried out at a specialist clinic. Your first visit will be an opportunity to ask questions,
tell the doctor about any health issues, have tests and examinations, and to decide what you want
to do. The service will be free. You can get pregnant again very soon after having an abortion, so
it is important to use contraception if you still want to avoid pregnancy.
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31
UNCERTAINITIES SURROUNDING HIV/AIDS
Advances in antiretroviral treatment and the lessons learnt from research and experiences around
the world means that you can live with HIV and learn how to best maintain your wellbeing.
During the early years, living with HIV was more challenging because not much knowledge,
expertise and resources were available. AIDS is a progressive disease that generally gets worse
or more severe over time. In some people, AIDS gets worse quickly whilst others progress more
slowly.
Some otherwise a progressive disease such as HIV infection can quite often be halted by
treatment.For most people the first time they are told they have a progressive disease is the news
of diagnosis. But news, whether good or bad, can also come at other times, whether it is when
HIV infection develops into AIDS, when cancer recurs, or the good news when someone is told
that their treatment has worked. On hearing they have AIDS many people assume that they are
likely to die much sooner than they previously expected. But it is possible that their life is not
going to be significantly shortened at all. For example, if a person has been newly diagnosed
with cancer a complete cure may be possible, or if a person has been diagnosed with HIV and
antiretroviral drugs are available, they may go on to eventually die of old age.
Sometimes people will ask a direct question such as: Am I going to die? Or how long have I got?
Faced with the possibility of a premature death, they want to know how long the rest of their life
is likely to be. But whilst some people may want a prognosis, others may not want such further
information at all. No doctor or any other health professional can tell exactly how long the rest of
your life is going to be. But you can be given a prognosis, which medically is a forecast of the
likely outcome of an illness or disease. However, a prognosis is only based on the average length
of time people with a similar condition usually live. Many people can expect and indeed will live
for longer than the average, whilst some people will live for a shorter time than the average.
Nobody knows when death will strike but you may well die of old age. Many health
professionals find it very difficult to answer patients' queries about prognosis, and some will try
to evade such questions. But they should be prepared to answer if asked directly as some people
do find a prognosis helpful in planning the next part of their life. You might receive the answer:
―You may well die of old age― This means they think you will be cured, or your cancer will be in
remission or that with HIV/AIDS that you should be able to lead a good quality of life for many
years if you take antiretroviral drugs.If the news is not quite as good, a helpful prognosis is still
likely to be given as an approximate number of months or years, rather than anything more
specific, for example: ―five years or maybe it could be ten‖, although sometimes a doctor will
need to give the reply: “a year, or possibly two.―But a prognosis is only an average and is never
going to be exact. You may realize at that moment that life as you knew it would never be the
same.
There are many different emotions that you may feel. You may feel angry, afraid, sad, worried,
scared, lonely, fearful, or even relieved. You may want to scream, shout, or cry. People react in
many different ways when they are given bad news, and there is no one right way to react. Over
time you will find a way of dealing with it that suits you, but it might be quite different to the
way other people cope. When you first get the news, it is like you have been hit in the stomach
and you are so full of fear and apprehension and, ‗What do I do? What do I do? What do I do?
32
Most people will be shocked and upset, and many will be fearful and possibly angry, particularly
if the news was unexpected. You need to take whatever time you need to think about what you
want and need to do. If you give it a couple of days and let it settle in, then you can begin to
absorb the information and deal with it. Hang on during that awful, awful, overwhelmed period.
Establishing an HIV/AIDS Doctor
Finding the right doctor is one of the most important health care decisions you will make. This
person will work closely with you, guiding you through many treatment decisions. Although it's
important to seek care as soon as possible, do not rush into making a choice. The relationship
with your doctor is an important piece of your health. You are a team: you tell the doctor about
how you feel day to day, and the doctor provides information to keep you as healthy as possible.
Identifying the best doctor and communicating honestly with that doctor is essential.
The HIV/AIDS doctor you choose should be knowledgeable about HIV and have experience
treating patients with AIDS (acquired immunodeficiency syndrome). You will also want to find a
person with whom you feel at ease and can talk comfortably -- and one who shares your basic
philosophy about health care. Do not downplay the importance of this. How you feel about your
doctor's personality, approach, and responsiveness may greatly affect your feelings about
treatment.You may want to interview several doctors before deciding on one. Consider factors
such as these:
Do you want a doctor who will allow you to take an active part in decision-making? Or
do you prefer a more traditional doctor-patient relationship, where the doctor takes the
lead?
Do you want a doctor who is aggressive about treatment -- encouraging you to try new
drugs or participate in research trials?
Are you interested in trying complementary care, such as homeopathy or vitamin
therapies? If so, will the doctor support this approach?
Being honest and talking to your doctor is very important. Doctors can seem intimidating, but do
not assume that they know each and everything. They need complete information from you for
your own benefit. Spell out things that might affect your health, including stressors, lifestyle
challenges, alcohol and drug use. Always demand for typed information in order to avoid wrong
medication especially if on referral, do not rely on the doctors own handwriting because it might
be misinterpreted by another doctor.
Ideally, you can openly talk to the doctor about your questions and concerns. When it comes to
HIV treatment, you are the one who has to take it, not your doctor. Making sure you have all the
answers you want before you start a safe and inspiring place to go for answers once you have
started is vital. While ART is the best bet for improving your health overall, there are things you
can do to improve your health if you feel you are not ready yet. If you are not happy with your
doctor, you can improve or strengthen confidence and communication? Try to be open and do
what you can do and leave what you cannot. If you get your health personnel at a drop in clinic,
it can be tough to have a consistent relationship with one doctor. Some clinics do make
appointments, so try to see the same doctor each time.
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Contemplating about your own death
There may come a time when it is very clear that your illness is probably going to cause a
premature death. This may happen because you are told this by a doctor, but it may also be a
more gradual realization that this is likely to happen. It is very difficult for most people to talk
about death and dying. ―The days go by; we talk about anything and everything. Everything that
is except the things that we should talk about: what is going to happen at the end? What do you
want for your funeral?‖ But if you can talk it can be a help, not only in respect of talking about
the emotions, the grief and the sadness, and maybe even the fear, but also talking about practical
matters.There is a fear of death; mine and yours. Experience teaches us that few people can bear
to discuss death, your possible death and mine.
The fear is so great even for discussion. .. We seem able to talk about sex more nowadays,
money, religion, politics, and all the old taboos. But death still scares us witless. You might have
come a long way thinking about death. You know that you do not want to be put on a ventilator
or resuscitated if you become seriously ill. You know where you would like the funeral service
to be held, and you would like flowers and everyone to dress up, wear bright colors and would
like lots of people to stand up and say nice things about you. ―In some cases it is possible to
prepare a ―living will‖ which describes when life-saving treatment should and should not be
given. Also a ―durable power of attorney‖ may allow you to name a person who will be able to
make decisions about your treatment when you are not able to decide for yourself.
Not everyone wants to talk in advance about the arrangements they would like for their funeral,
and indeed how it is to be paid for, although there is more discussion about this in some families,
than many people might think. But make sure that you have made a will, and put important
papers where they can be found. In this increasingly electronic age in which many people live, it
can also be helpful to make sure that you are not the only person knowing the password to online
files. It is also important to make arrangements for the care of children or other dependent
relatives. The other parent will often be the choice for the care of children, but this may not
always be possible or appropriate.
Consider who you think would be able to offer love, warmth, stability, patience, continuing
contact with friends and relatives, and seek the agreement of your chosen guardian. It can also be
helpful to write down your wishes in a will. For the children it can be helpful to make a ―memory
box‖, containing books, letters, photos and other mementoes. But making a memory box for
children, and doing other practical things, is not a reason for not talking to them, whatever the
disease, the circumstances, or the children‘s age. And if you do not talk to them they may find
out the information some other way. When a person is likely to live for only a few more weeks
or months, it is often referred to as the period when someone is terminally ill.
Terminal care‖or―ends of life care are expressions sometimes used to refer to the care that a
person needs at this period. It is best to ask your family doctor or whoever is responsible for your
medical care, what local services are available. Do not presume they will tell you if you do not
ask. The period when someone is terminally ill is a particularly fearful time for everyone
involved. Sometimes this fear may result in the person being moved to a hospital or hospice, or
they may be moved because they have a reversible problem such as an infection, for which
hospital treatment is desirable and should be provided, or it there may be no other way that
sufficient nursing and social care can be provided.
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It is vitally important that the person, if at all possible, is fully involved in any discussion about a
move, particularly if they had earlier been against it. If the person appears to agree to a move, it
is crucial that it is what they really want and not something that they are agreeing to for some
other reason (perhaps because they do not want to upset their relatives for example).Once a
person is in hospital it can be difficult to arrange for them to be discharged, as health workers
can be nervous about whether the person will have sufficient care. It may be necessary to express
your wishes quite clearly.There can be considerable pressure on the relatives and difficulties for
them as well. As you become sicker you may move in with relatives, in order for your family to
provide more help.
Although such moments can be extremely helpful for both the person and their family, the effect
on everyone needs to be considered before such a commitment is made. But sometimes if there is
insufficient help from other people, relationships can be stretched to breaking point, and beyond.
It is crucial for everyone that providers are offered and indeed accept extra help before they start
to feel this way. Sometimes providers are encouraged to continue without extra help because ―it
is not going to be long now‖, but it is never possible to be sure how long it is actually going to
be. There can be particular benefits to the last few days being at home, and some of these
benefits can also arise if the person is in a hospice.
Once you are free of the hospital, the tension and pressure begins to fall away, and the last days
are suddenly free of fear. Time is incredibly valuable. All the crushing worries, torments and
pain of the preceding months simply float away. They no longer touch you. Your daily routine
relaxes. When dying you may not want the dressing on your thin body changed? It does not
matter anymore. Instead, you may have lots of time to exchange memories, to be closed together,
undisturbed by the noise and inevitable hectic environment of a hospital death.It is impossible to
be certain how long you are going to live, because even with a progressive illness, death can be
unexpected and sudden if the illness causes a major failure in some part of the body. This is why
it is so important to plan ahead, and say those things which need to be said whilst you have the
chance, because you never know which conversation might turn out to be the last.
More often though with a progressive disease, death will be a gradual and slower process, and
there will often be signs that it will probably not be too long before death will occur. These signs
do of course vary greatly, not only from illness to illness but from person to person, but may well
include the person becoming gradually but noticeably weaker and perhaps less interested in
things which are happening around them. You may also become quite sleepy during the day, and
possibly a little confused about what day or time it is.When dying you may often be fearful and
lonely. Most of us fear the unknown, and no one else can tell what it will be like. As a relative or
provider you may also be fearful, fearful for the grief that you know is coming, and fearful of the
actual moment of death and the period leading up to it. You might have never been present when
someone is dying. There is no “right” answer about what you should do or say, and there is not
always a need to talk.
Many people are particularly afraid of the physical aspects of death. Much can be done by a
doctor or nurse to ensure that neither the person dying nor other people present are unduly
distressed by any additional physical symptoms. If such symptoms are likely to occur they can
usually be controlled with medication. If a person is in hospital, and even more so if no relatives
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or friends are present, a doctor can provide very important help at this time, as this patient
explained a few moments before she died.― Though I am sick, I am more worried for the other
patient with a severe cough. He is likely to die this night.‖ Within a few moments, this patient
passed away and the one she tried to predict survived for more than two years.
Coping with death
From a sadness which is with us frequently to a sadness that is always part of us but no longer
gets in our way, we can begin to be happy and move on in our lives. But in due course the grief
finds a place, and you find support, and continue with your activities and lives. If you are
fortunate and you live much longer than expected, then it won‘t matter if the practical things
have been done. But if you do die without doing them it can cause unnecessarily difficulties and
indeed suffering for those left behind.As a relative or friend, this is what you can say about the
demise of your loved one. ―You took a long breath and stopped, after a minute you took another
long, long breath, like a sigh.
So peaceful, no pain, no loss of dignity. We had promised you that. You equally trusted us all
and we did not let you down. You took two further breaths with everyone there and then your
body was at peace. How peaceful and beautiful death can be when it is a gentle release from a
progressive disease? Then death has been accepted, as you had accepted it, without fear.‖ We
shall meet in eternity.
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MANAGINGHIV/AIDS DIAGNOSIS
Getting an HIV diagnosis can feel like the worst news in the world. It is common to feel anger,
fear, confusion, shock, grief, depression, or other painful emotions. Even after you have known
for some time and think you are coming to terms with the news, it may suddenly hit you all over
again. The first step in getting through this difficult period is to understand that these feelings are
normal responses to your diagnosis. Ignoring them will not make them go away. Allow yourself
to feel what is inside you. It is ideal to cry if you feel like it. Anger, fear, and sadness are
emotions that most people with serious illnesses experience. You are facing the possibility of
getting sick or dying.
You may be scared that you will not see the children in your life grow up. Or maybe you are
afraid that you will not achieve your life goals. In the beginning, it may seem that testing positive
is a death sentence, but this is not true.
There is life after a positive test. In fact, many people living with HIV (HIV positive) lead full
and healthy lives. You may also feel that you are now damaged in some way and that no one will
want to love you because you are HIV positive. Or you may blame yourself for getting HIV and
ask yourself, "How could I have let this happen to me?" Try not to be too hard on yourself.
Guilt and shame can be destructive. Forgive yourself if you need to. If possible, try to have some
compassion for yourself. You have just gotten bad news and must face changes and challenges
ahead. Remember that you are still the same person you always were, as capable of giving and
receiving love as ever.
Being diagnosed with HIV may present many challenges. Building a support network can help
you learn to cope. Take your time and do not feel that you have to tell everyone right away. It is
important not to let fear of being judged cause self-isolation and not talk to anyone. If it is hard
to tell family and friends at first, you may want to turn to HIV organizations.
Many newly-diagnosed people want to speak with others in the same situation. This can decrease
isolation and help overcome stigma. There are many AIDS service organizations (ASOs) that
offer support and information to HIV positive people.
ASOs are great places to find helpful, non-judgmental people to talk with, and many offer
support groups. Joining a support group and talking about your feelings in a safe space may
reduce fears and concerns. Finding networks or others who are in similar situations might also
help you not feel so alone.
As upsetting as testing positive can be, you are better off knowing. Once you know you are HIV
positive, you can take charge of your health and have the best chance to slow or prevent disease
progression. Getting informed about HIV and its treatment will help you make the best of your
situation. An important factor in getting good care and treatment is to find the right health care
provider.
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Look for a health care provider who specializes in treating HIV. Even though there is no cure for
HIV disease, there are many treatments that help keep HIV under control. You will need to get
information and work with your health care provider to decide what treatments are best for you.
There are many good places to get information including ASOs, hotlines, and websites. But be
careful about the information you are getting. Check it out with your health care provider or
other reliable sources to make sure it is accurate.
Remember, there are no "miracle" cures. If it sounds too good to be true, it probably is not true.
Learning that you are HIV positive may make you feel you have lost control over your life. Try
not to let this rush you into making decisions when you are still coming to terms with your
diagnosis.
You are in charge of your own life. You can decide which treatments and when to use them.
Take time and learn about your options. Unless you are very ill and need to make treatment
decisions quickly, you have time to think things through.
Aging with HIV: Get prepared
Your body wears out as you get older. As you get older, your skin wrinkles because it becomes
thinner and less elastic. It gets drier too as it makes less oil and sweat. Your bones become more
visible as you store less fat beneath your skin. Inside the body your bones and muscle become
weaker. Your memory gets worse, and your immune system cannot fight AIDS as easily.
Never limit yourself!! Dream big!! Believe in yourself! No matter what cards you are dealing
with, make the best out of any situation. LOVE BIG!! LIVE INTENSELY!! Accept the struggle
and overcome it with dignity and without the need of being bitter or selling yourself or your soul.
Nothing lasts forever so embrace everything and everyone.
Everyone ... good or bad is a teacher. Evolve spiritually and do not only focus on having material
things. No one has a perfect life or is immune of problems!! The difference is the attitude that we
have with negative situations and seeing the glass full and not half empty. You have a wide
breadth of talents and always put them into practice. So far, you have known very little and the
rest is unknown. Remember, life is a path full of roses filled with thorns.
Being diagnosed with HIV is life changing. Once you are positive, it will never become
unknown again. Learn to see yourself as a person living with HIV, not a victim. You can do this
by getting informed, taking charge of your health care, and learning how to manage HIV. There
are many resources for help on this new path. You may find that some of the priorities in your
life now change.
This can be a good thing. Facing a serious illness can prompt people to make their lives better.
Many positive people make favorable changes such as breaking bad habits like drinking too
much or smoking.
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As serious as the diagnosis is, there is good reason to have hope that your life will be full and
healthy. Do not give up on yourself or your dreams.There are many things you can do for
yourself to stay healthy. Make sure you have a health care provider who knows how to treat
HIV. Begin treatment promptly once your doctor tells you to and keep your appointments
effectively.
Follow your doctor's instructions. If your doctor prescribes medicine for you, take the medicine
just the way he or she tells you to because taking only some of your medicine gives HIV
infection more chance to fight back. If you get sick from your medicine, call your doctor for
advice; do not make changes to your medicine on your own or because of advice from
friends.Get immunizations (shots) to prevent infections such as pneumonia and flu. Your doctor
will tell you when to get these shots. Practice safe sex to reduce your risk of getting a sexually
transmitted disease (STD) or another strain of HIV. If you smoke or use drugs not prescribed by
your doctor, quit. Eat healthy foods. This will help keep you strong, keep your energy and weight
up, and help your body protect itself. Exercise regularly and have enough time to sleep and rest.
Take time to relax. Many people find that meditation or prayer, along with exercise and rest; help
them cope with the stress of having HIV or AIDS.
There are also many things you can do to protect your health when you prepare food or eat, when
you travel, and when you are around pets and other animals.
Paying your first visit to a doctor
Waiting in your doctor‘s office can make you feel nervous, impatient, or even scared. You might
worry about what is wrong with you. You might feel annoyed because you are not getting other
things done. Then when you see your doctor or nurse, the visit seems to be so short. You might
have only a few minutes to explain your symptoms and concerns. Later that day, you might
remember something you forgot to ask. You wonder if your question and its answer matter.
Knowing how to talk to your doctor, nurse, or other members of your health care team will help
you get the information you need. During your first appointment, the doctor will ask questions,
examine you, take a blood sample, and do some other tests. Your doctor also may do a skin test
for tuberculosis and give you some immunizations (shots). Tell your doctor about any health
problems you are having so that you can get treatment. You also should ask your doctor any
questions you have about HIV or AIDS such as;
what to do if the medicine makes you sick
where to get help for quitting smoking or using drugs
how to create a healthier diet
And how to minimize the chances of spreading HIV to your partners etc.
Your blood sample is used for many tests, including the CD4 cell count and viral load. Your
CD4 cell count tells how many CD4 cells you have in your blood. If you are getting treatment,
your CD4 cell count indicates how well it is working. If your CD4 cell count rises, your body is
better able to fight infection and vice versa. Viral load testing measures the amount of HIV in
your blood. Your viral load helps predict what will happen next with your HIV infection
especially if you do not get treatment.
Keep your follow-up appointments with your doctor. At these appointments you and your doctor
will talk about your test results, and he or she may prescribe medicine for you.
Antiretroviral medicines. Because HIV is a certain type of virus called a retrovirus, the
drugs used to treat it are called antiretroviral medicines. These powerful medicines
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control the virus and slow progression of HIV infection, but they do not cure it. You need
to take these medicines exactly as your doctor prescribes.
HAART. This treatment for HIV is a combination of three or more medicines. This
regimen of medicines is called Highly Active Antiretroviral Therapy (HAART). How
many pills you will need to take and how often you will take depend on which medicines
your doctor chooses for you? Remember, each HAART regimen is tailored for each
individual patient. There is no one best regimen. HAART may cause some side effects.
You and your doctor should discuss potential side effects so that you will know if they
occur. If you experience any side effects, even those that may seem minor, you should
talk about them with your doctor.
Other medicines. Your doctor may also prescribe other medicines for you, depending on
your CD4 cell count. Always discuss any side effect with your doctor. Never change the
way you are taking any of the medicines without first talking with your doctor. If you do
not take your medicines the right way, they may not be as effective as expected.
Treating other infections. If your HIV infection gets worse and your CD4 cell count
falls to worrying levels, you are more likely to get other infections. Your doctor may
prescribe medicines to prevent particular infections, such as PCP. The most important
thing you can do after learning that you have HIV is by working closely with your doctor.
Because HIV and HIV-related illnesses vary from person to person, your doctor will
design a medical care plan specifically meant for you. To help the doctor make the best
choices for you, you must tell the doctor about any side effects or symptoms you have.
Other diseases you may get. Because HIV damages the immune system, you may have
a higher chance of getting certain diseases, called opportunistic infections. They are so
named because an HIV-infected person‘s weakened immune system gives these diseases
the opportunity to develop. Fortunately, people with HIV who take HAART can go a
long time before their immune system is damaged enough to allow an opportunistic
infection to occur. That is why it is so important to get tested and start treatment early.
You may be infected and do not know that you have HIV until AIDS or when an
opportunistic infection surfaces.
Certain symptoms can occur with opportunistic infections
Breathing problems
Mouth problems, such as thrush (white spots), sores, change in taste, dryness, trouble
swallowing, or loose teeth
Fever for more than two days
Weight loss
Change in vision or floaters (moving lines or spots in your vision)
Diarrhoea
Skin rashes or itching
Tell your doctor right away if you have any of these problems. Your doctor can treat most of
your HIV-related problems, but sometimes you may need to go to a specialist. Visit a dentist at
least twice a year, more often if you have mouth problems.
One of the most important relationships for a person living with HIV is the one you have with
your doctor. (This might also be a nurse practitioner, or physician assistant, or other person on
your health care team.) This relationship can have a big impact on your well-being and how well
40
you will do with your treatment. The doctor can work with you to create the best treatment plan
for you. He or she can give support and help you face challenges. Your regular doctor or trained
HIV counselor can help you find a specialist with experience treating HIV and AIDS. A doctor
who specializes in HIV/AIDS can provide comfort during this time. He or she may also give you
referrals to programs offering social support, housing, case management, and other services.
The specialist may have a team at the clinic that can help you with some of these issues. When
choosing an HIV doctor, you should feel comfortable with her and have faith in her abilities. If
you are pregnant or planning to become pregnant, this is especially important. Even though you
will find a doctor to help you with your HIV, over time you will still need to see a doctor for
other health issues. If you do use multiple doctors, they must work as a team and communicate
with each other. Some questions you may want to ask a doctor who specializes in HIV include:
Are you an HIV specialist? Ideally if you are infected with HIV, you need to be treated by HIV
specialists.
Have you treated many people with HIV? It is important to find a doctor who has experience
with the unique issues people with HIV and AIDS face.
What do you think about me participating in treatment decisions? Try to find a doctor who
wants you to participate in treatment decisions, such as when to start medications and the use of
complementary and alternative therapies.
What other services and providers does your clinic have? Try to find a clinic or office that
has many kinds of health care workers. Whether all your doctors are in one place or not, your
HIV doctor should serve as a link to other people on your HIV care team. Other important
members of the care team may include:
1. Nurses and nurse practitioners
2. Physician assistants
3. Pharmacists
4. Dentists
5. Social workers
6. Psychologists
7. Dietitians
8. Case managers
Building a good care team is just one step in improving your health with HIV/AIDS. Being a
proactive patient is vital. Always give your doctor as much information as you can. Be honest
about whether you are taking your medications on time. Tell your doctor about your side effects.
Be honest about sex and whether you are using protection. Come prepared to each doctor
appointment.
Protecting other people from infection
Things you SHOULD do
Abstain from sex. The surest way to avoid transmission of STDs, including a different strain of
HIV, is to not have sexual intercourse.
Use condoms correctly and consistently. Correct and consistent use of the male latex condom
can reduce the risk for STD transmission. However, no protective method is 100% effective.
Condom use cannot guarantee absolute protection against any STD. If you are allergic to latex,
41
you can use polyurethane condoms. Condoms lubricated with spermicides are no more effective
than other lubricated condoms in protecting against the transmission of HIV and other STDs. If
you use condoms incorrectly, they can slip off or break, which reduces their protective effects.
Inconsistent use, such as not using condoms with every act of intercourse, can lead to STD
transmission because transmission can occur with just one act of intercourse.
Use protection during oral sex. A condom or dental dam (a square piece of latex used by
dentists) can be used. Do not reuse these items.
Regular health monitoring
To make sure that you receive the most appropriate treatment and care, it is very important to
visit a clinician for regular check-ups. During your regular check-ups at a clinic, there are a
number of ways your doctor can check for your health. The most common are: It is important to
be honest with your doctor about how you are feeling, any problems or concerns you have, or
any symptoms and side-effects you are experiencing. The doctor will ask questions, such as
whether you are having any problems taking any anti-HIV drugs you are on or how they make
you feel. But it‘s ideal to come prepared with anything you have noticed, or are worried or
curious about. If you mention any symptoms, part of your check-up will involve looking at your
body and examining any unusual signs or symptoms. Your doctor, or another member of the
healthcare team, will also regularly check your weight and blood pressure. Samples of blood will
be taken and these will be examined in a laboratory. These tests are used to assess how HIV is
affecting you and how well any treatment is working, and to check your general health.
Often your doctor will order several different blood tests. It may look like you are having a lot of
blood taken, but only about a teaspoon of blood is taken in each test tube. Occasionally, you may
have other types of tests as well. If you have some specific symptoms, then you may need to
have tests such as X-rays, scans or ultrasounds that allow your doctor to see inside your body.
For some investigations, it may be necessary to remove a small sample of body tissue for
examination in a laboratory. This is called a biopsy and it‘s normal to have this done using a
local anaesthetic. Your clinician will closely monitor all aspects of your health that are related to
HIV.
However, it is also important to register with a doctor (family doctor), who will be able to look
after your general health needs that are not related to HIV. For example, Doctors are well-placed
to help with other long-term conditions such as hay fever, asthma and high blood pressure,
mental health problems and conditions related to getting older. Your doctor may prescribe
medication to deal with these conditions; it‘s important to discuss the possibility of interactions
between these and any HIV treatment or other medication you are on. You may have your
cardiovascular risk checked at your doctor surgery, your annual cervical screening done there, or
get any vaccinations you need, including the annual flu vaccination recommended for people
with HIV.
Living a healthy lifestyle is an important way of staying well with HIV. Your doctor can help
with crucial things such as eating well and losing weight, doing exercise, and stopping smoking
and cutting down on alcohol and drug use. Community pharmacies can also offer advice on
healthy living, losing weight and how to stop smoking. Telling your doctor that you are HIV
positive will help them have a full picture of your health to ensure you get the best possible care.
For example, they will be able to take HIV into account in assessing any symptoms you have.
And, if you are taking anti-HIV drugs, your doctor will consider potential interactions with any
other medications you need.
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HIV TREATMENT
Treatment with anti-HIV drugs is sometimes called combination therapy, because people usually
take three different drugs at the same time. It is also known as antiretroviral therapy, or highly
active antiretroviral therapy - HAART for short. HIV treatment does not cure HIV. But it stops
the virus reproducing in your body. It can reduce levels of the virus in the blood to such low
levels that it is not able to cause damage to your immune system. Once you start HIV treatment,
you are likely to be taking it for the rest of your life. The essence of HIV treatment is an
undetectable viral load. This means that the level of HIV in your blood is so low; it cannot be
detected by the tests used to measure viral load. But it does not mean there is no HIV at all. The
risk of a person living with HIV, who is taking effective antiretroviral therapy (ART), passing
HIV on to sexual partners through vaginal intercourse is extremely low, provided the following
conditions are fulfilled:
There are no other sexually transmitted infections in either partner
The person who is HIV positive has a low viral
Viral load testing should be undertaken regularly (three to four monthly).
From a heterosexual perspective, successful ART use can provide similar levels of protection in
relation to other sexual practices, including unprotected anal intercourse between men or
between men and women. However, it is expert opinion that a similarly extremely low risk of
transmission can also be anticipated for these practices, provided the same conditions stated
above are met. Before you make any decision about not using condoms, get advice from your
HIV doctor or nurse practitioner.
Not on treatment
Not everybody with HIV needs to take HIV treatment straight away. It is different for different
people, but it usually takes several years after infection before it is required. If you are not on
effective HIV treatment, HIV can attack and weaken your immune system (the body‘s natural
defense against infections). When HIV has done a lot of damage to the immune system, you are
likely to become vulnerable to infections that you would normally be able to fight off. HIV also
causes inflammation in various parts of the body. This can increase the risk of a number of
illnesses. These include cardiovascular disease (for example, heart attack and stroke), kidney or
liver problems and some cancers.
The damage that HIV causes happens slowly, often over a number of years. It is often the case
that a person feels well during this time but even if you‘re in good health, HIV is likely to be
causing damage to your immune system and, possibly, other parts of your body. Even if you do
not need to start treatment, it is very important that you have regular check-ups at a specialist
clinic. This could be once every three to six months, depending on the status of infection. Checkups provide an opportunity for HIV doctors and other healthcare professionals to monitor the
effect of HIV on your body. This will involve a number of blood tests. Two of the most
important are a CD4 cell count and viral load test. Looking at the results of these and other tests
will help you and your doctor makes a decision about starting HIV treatment. One situation
where you will need to start treatment, even if you don‘t yet need it for your own health, is if you
become pregnant. With good medical care, it is possible for women with HIV to give birth to
healthy, uninfected children. HIV treatment can be used so you can have a safe pregnancy and
birth.
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Thinking about treatment
Your physical health is an important factor, but the 'right' time to start HIV treatment also
depends on your feelings – it is your own decision. Some people find starting HIV treatment a
difficult commitment to make. Starting treatment can often mean that you have to think through
how you will manage the aspects of your day-to-day life. Before starting treatment, you should
give yourself enough time to talk through all your options. As well as talking to your doctor, you
could speak to other people with HIV (perhaps at a support group) and advisors at local HIV
organizations. If there‘s a friend or family member who is supportive, they may also help to
make your mind up.
The advantages of starting early treatment of HIV:
You may have less illness, if HIV has been making you ill.
The treatment will stop HIV reproducing.
Your immune system will be strengthened.
You will become less infectious. This could be particularly important to you if your
partner is HIV negative.
The disadvantages of starting HIV treatment:
You may get side-effects from the drugs you are on.
You will have to take your drugs every day at the right time.
There is the risk of developing drug resistance.
Unless you are already ill, it‘s best to only start combination therapy when you feel you are ready
for it. You need to be sure that you will be able to take it exactly as prescribed.
Here are some questions to ask yourself about fitting HIV treatment into your life:
Do I know enough about HIV treatment, how it will affect me and what benefits it can
have for my health?
Starting treatment will involve making changes to my life and routine. Can I concentrate
on that at the moment?
The first few weeks on a treatment are often the most difficult. Can I make my health a
priority and give myself extra time to adjust? For example, could I take time off work?
Have I found it difficult to take medicines in the past? If I had problems, what were the
reasons for this? How can I avoid these problems in the future?
If I have problems remembering to take my drugs on time, who could I talk to for
support? Could I ask somebody to remind me - a friend or a housemate?
Are there people who I wouldn‘t want to see me taking my drugs – people at work,
people I live with, friends or family?
What about people I might meet in the future - like a new partner? How will I deal with
them knowing I‘m taking anti-HIV drugs? Will this put pressure on me to tell them I‘m
HIV positive?
Starting treatment
There are several factors you should consider when you are thinking about starting HIV
treatment, including how you feel about starting and taking treatment. The results of the regular
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blood tests you have as part of your HIV care can help you and your doctor decide whether you
should start treatment. But there will be other factors to take into account. It is unlikely that you
will have to make a quick decision - you will probably have an opportunity to consider the pros
and cons over a period of time. If your CD4 cell count is already very low or you are ill with an
infection, you may need to make a decision more quickly. Taking HIV treatment reduces the
amount of virus in your blood and other body fluids, including semen and vaginal fluids.
This reduces the risk of HIV being passed on to others. You may want to consider starting
treatment earlier if you have an HIV-negative partner, for example. Your doctor may talk to you
about this, or you could raise it with them. If your doctor recommends that you start treatment
but you decide that you would rather not start yet, it is very important that you stay in touch with
your clinic and have your health monitored regularly. There are some tips you can use to help in
taking your treatment:
To get into the routine of pill-taking, you could practice for a few weeks before starting.
Try having mints or vitamin tablets at the times you‘ll be taking your treatments.
Learn from this and work with your healthcare team to come up with a schedule that is
right for you. Keep your medication in a place where you will remember to take it and try
to link your pill-taking times with other daily routines – getting up, meal times, taking the
children to school, a particular radio or TV program, or tea breaks at work.
Ensure you collect your new prescription in plenty of time to ensure you have a good
supply of drugs and make sure you keep your drugs in a safe, dry, cool place, away from
children.
Bathrooms are not ideal because of the humidity. You can probably get pill containers or
dosette boxes from your clinic.
They have compartments where you can divide up your tablets according to when they
need to be taken.
They can help if you forget which pills to take, or if you‘re not sure whether you‘ve
already taken your pills.
Keep a note, a picture or some other reminder on the back of your front door to remind
you to take medication with you before leaving home.
You can also set an alarm on your mobile phone or watch to ring when your doses are
due, although this can draw the attention of other people.
If you keep a diary or pill planner you can tick off the dose once you‘ve taken it, and if
you use a computer at work, you can use the calendar or task program to automatically
send you reminders. You could use a code word to mean anti-HIV drugs.
Plan for weekends, holidays or other times when you don‘t have your usual routine.
Make extra efforts to remind yourself and, if appropriate, ask the people you‘re with to
remind you. Take extra medication in case your scheduled return is delayed.
Keep a bottle of water in your bag, so you can take your treatment wherever you are.
If you don‘t want people to see you taking your treatment, excuse yourself to go to the
toilet or to make a phone call.
Avoid running out of your medication by renewing your prescriptions in advance.
Ask a partner, trusted family member or friend to remind you to take your doses.
Keep an emergency dose close at hand – for example, in your bag, glove compartment of
a car or at a partner‘s or friend‘s home.
If you have to go to an Accident and Emergency department at a hospital, take sufficient
HIV medication with you in case you are admitted. If you are having problems taking
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your treatment, talk to a member of your HIV healthcare team – help and solutions will
be provided.
ANTIRETROVIRAL DRUGADHERENCE
In order for HIV drugs to do their job properly, you need to do yours! Your job is to take drugs
exactly as they are prescribed. That means taking the correct amount (dose) at the right time, and
as directed (e.g., with any food or medication restrictions). Adherence means taking your
medications correctly. If you do not, HIV might multiply out of control. However, the fewer
doses you miss, the better the chances of keeping HIV under control and the lower the risk of
developing viral resistance. The HIV virus can make millions of copies of itself every day.
Antiretroviral drugs (ARVs) cannot kill the virus, but they can almost stop it from multiplying.
Despite the improvements in HIV drug treatment (such as reduced side effects, fewer
restrictions, and easier dosing); taking HIV drugs is a daily, lifelong commitment. While this can
make adherence challenging for many people living with HIV, the benefits are well worth the
effort. Staying on top of your treatment every day is not an easy task. Annoying side effects,
being disorganized and the hustle and bustle of life can stand in your way.
The essence is to find out what works for you and stick to it. Have a friend or family member to
remind you to take your meds. Remembering to take your meds is one of the hardest things to
do, especially when you are not used to taking medication. The best tool to support adherence is
extra encouragement and support, in particular from friends, partners and families. Lifelong
adherence to HIV meds is tough but with trusted support in your life taking HIV meds can
become more manageable.
Ask friends, partners, or family members to give you a call and remind when to take your
medications, help you how to fill your pill box, or cheer you on when you are having a bad day
and just don't feel like taking your meds.As we know, better adherence leads to less
inflammation in the body and this, in turn, will not only prevent HIV from wearing down on the
immune system but also protect the heart, brain and kidney from the damaging effects of HIV.
And when you decrease inflammation, you greatly slow down the aging process -- looking
younger and healthier! You may have your own little routine. You may take meds when you eat
dinner.
And that is what you might do every single day. So, it is fine to take your medication when
you're less stressed, like when you're at home. If you are working, there is so much going on in
the office that it may not be a good time. Breakfast might not be a good time, because you might
have to deal with side effects that will impact you throughout the entire day. Just adhere to your
medications.
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A pillbox is critical. Many people think pillboxes are only for people who take a lot of
medications, but even if you're just taking one pill a day, you should use a pillbox that separates
your pills by the day of the week. With a pillbox, you never have to wonder whether you took
your meds or not. Link medication doses with daily activities. If you take your meds with food,
choose the meal you eat every day, preferably at home, and store your pills in the kitchen. If you
take your meds in the morning or at bedtime, put your pills next to the toothpaste and take them
when you brush your teeth. In most cases, it's better to take your medications late than to skip
them completely. That may mean taking a dose at breakfast if you forget the dose you usually
take at dinner.
Finally, do not panic if you accidentally miss a dose once in a while. Most of the drugs we use
last longer (time) in the blood, so the occasional missed dose won't cause you to fail therapy or
develop resistance. That's especially true once your viral load becomes undetectable; skipping
doses is riskier during the first few months of therapy. Missing multiple consecutive doses is
worse than missing a single dose, so don't go away on vacation without bringing enough pills,
and don't wait until Saturday night to find out that you need a refill on Sunday. One of the
difficulties to adhering is admitting that, for the rest of my life, I am going to have to take meds.
People sometimes worry about hitting the bull's-eye every time, every dose. It's not necessary
with today's medications. What is essential is to find the easiest, or most reliable, part of the day
(or night) and stick with it (give or take a few hours). Try a pillbox, or clock reminder. Some
folks use their email or text messages to help. Link taking your medication to a routine, daily
activity: brushing teeth, checking email, going to the bathroom, eating, etc.
The rationale for Adherence
When you take a drug, it gets processed by your body and enters your blood stream. The HIV
drugs need to stay in your blood at certain levels to fight HIV. If the level falls too low, the drugs
do not work well. When you take your pills on schedule, you keep the right level of the drug in
your body.
If you do not take your HIV drugs on schedule, drug levels in your blood will drop and HIV will
be able to make copies of itself (multiply).
When HIV multiplies, your viral load increases and your CD4 cell count goes down. When HIV
makes copies of itself, it sometimes makes changes, called mutations. These mutations can help
the virus survive, even when you are taking your HIV medication. This is called resistance.
When HIV becomes resistant to a drug you are taking, that drug will stop working. At that point,
you will probably have to switch HIV drugs. Resistance to one drug can sometimes cause
resistance to other drugs you have not taken. This is called cross-resistance. Resistance can affect
your treatment choices in the future because fewer drugs will work well against your virus. The
best way to prevent resistance is to stick closely to your medication schedule. Taking your HIV
drugs exactly as prescribed about 95 percent of the time is needed to get the most benefit from
HIV treatment. That means missing very few doses.
Starting and Choosing HIV Drugs
There are a number of things to think about when deciding whether to start HIV drug treatment.
Two of those things are your CD4 count and viral load. It is also important to think about
whether you feel able to commit to taking your drugs correctly. If you do not feel ready, discuss
it over with someone who knows about HIV. Your health care provider or the staff at the AIDS
service organization (ASO) can give accurate information to answer your questions and address
your concerns.
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Barriers to Adherence
Many people find it difficult to be adherent to their HIV medication for the following reasons:
A busy lifestyle
Not having disclosed your HIV status to work colleagues, friends, lovers, or family
Depression, a leading cause of non-adherence, is more common in HIV+ women than
HIV+ men
Other life stressors, such as childcare or parenting issues
Current or past problems with side effects
Active substance use or problems with alcohol
Overcoming Barriers
Even though it may be embarrassing, it is important to tell your health care provider about the
number of times you have missed doses or did not take your HIV drugs correctly. He or she may
suggest a change in your dosing schedule or drug regimen that makes it easier.
Newer HIV drugs require fewer pills per day and have fewer food restrictions. There are also
new ways to combine older drugs that make them easier to take.
Key issues to consider in adherence
Understand that the medications will help you fight the virus and stay well. If you do not
think they will, you will not bother taking your pills correctly. If you have any doubts,
speak to your health care provider or staff from any AIDS service organization (ASO).
Use a daily activity, one that you do every day without fail (like waking up in the
morning, walking your dog, or going to bed at night), to remind you to take your pills.
When it‘s time to do that activity, you will know that it is also time to take your pills.
If you do not want others to see you taking your pills, quietly slip away to a private area
or the bathroom. If that will not work, say the medications are for another health problem
or that they are vitamins.
If you think substance use or mental health issues are preventing from taking your
medications correctly, talk to your health care provider or case manager so they can get
you help. There are good treatments available.
Take advantage of tools available from your clinic or pharmacy such as pillboxes,
calendars, diaries, and beepers to help you remember to take your medications on time.
Plan ahead for refills or trips so you do not run out of any medications. Adherence means
taking your pills in the prescribed doses at the right time, in the right amount and in the
right way.
Missing doses or not taking doses correctly can lead to your HIV becoming drug
resistant. This will cause your treatment to fail and limit the drugs you can take in the
future.
A high level of adherence is needed for your HIV treatment to work effectively and you
should aim to take every dose.
Everyone taking HIV treatment should be offered support and advice with adherence.
You might find adherence easier to manage if you feel ready to start treatment, and if
your treatment fits in with your lifestyle. Keeping a diary, using a pill box, or using an
alarm might help you to adhere.
Resistance is an important reason why HIV treatment stops working.
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Developing resistance is less likely if your viral load is undetectable and you take your
HIV treatment correctly. The more you miss doses, the more likely it will be that your
drug combination will fail.
Some people contract a strain of HIV which is already drug resistant.
Resistance tests will be used to help choose the best drug combination for you.
Taking your HIV treatment properly is often called ‗adherence‘. You will get the most benefit
from your HIV treatment if you take it exactly as it is prescribed. This means:
Taking the correct dose.
Taking your pills at the right time.
Following any advice about food and drink.
Checking for any interactions with other prescribed drugs, over-the-counter medicines,
herbal or alternative treatments and recreational drugs.
Ideally, the aim should be to take all your doses in the right way. Taking less than 95 per cent of
doses properly has been linked to increases in viral load and the development of resistance. What
does 95 per cent adherence mean?
If you are taking your HIV treatment once a day, then 95 per cent adherence means
missing no more than one dose per month.
If you are taking your HIV treatment twice a day, then 95 per cent adherence means
missing no more than three doses per month.
If you do forget a dose of your combination therapy, try not to panic or feel guilty – we are all
human! As a very general rule, if you realize you have missed a dose, take it as soon as you
remember. But if you only realize when you are going to take your next dose, do not take a
double dose.
You are likely to find treatment easier to take if it fits in with your daily routine and the way you
live your life. So it makes good sense to talk about this with your HIV doctor or another member
of your healthcare team when you are deciding which combination of drugs to take.
Dealing with side effects
Like all medicines, the drugs used to treat HIV can cause side-effects. However, it is not
inevitable that you will experience side-effects. Like all medicines, the drugs used to treat HIV
can cause side-effects. However:
It is not inevitable that you will experience side-effects.
Most of the side-effects caused by the anti-HIV drugs are mild.
Many side-effects lessen or go away with time.
How often a side-effect occurs varies, but for many side-effects the risk is quite (or very)
low.
It is almost always possible to do something about side-effects, including changing
treatment.
Some side-effects are more common. These include:
Diarrhea.
Feeling or being sick (nausea or vomiting).
Headache.
Tiredness.
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Rash.
If you are especially worried about a particular side-effect, you may want to talk to your HIV
doctor about these concerns when you are deciding which anti-HIV drugs to take. It may be
possible to select a combination of drugs that avoids the risk of the side-effect that you are
worried about. In most cases, these side-effects are worst in the first few weeks after treatment
with a drug is started. They can often be controlled with other medications (for example,
paracetamol for headache or Imodium for diarrhea), and many people find that the side-effect
lessens or goes away completely with time.
Some people feel drowsy or dizzy, find they cannot concentrate, have changes in their mood
including sadness or depression, or have sleep problems, when taking this drug. These sideeffects are most likely to occur when treatment with the drug is first started. Often, they then
lessen or go away. Some people find that they can reduce the problem by taking their medication
two hours before going to bed, and by not taking the drug with fatty food. Anti-HIV drugs can
sometimes cause longer-term side-effects. For example, some cause increased cholesterol and
other blood fats, or disturbances in the functioning of the liver. Lipodystrophy (body fat changes,
such as losing some fat from your face, legs, arms or buttocks, or gaining fat elsewhere) is a
side-effect of some of the anti-HIV drugs.
These drugs are avoided as much as possible for long-term use. You will be monitored for these
and other side-effects as part of your routine HIV care. Your HIV treatment is meant to improve
your health, so it is important to remember that you do not have to put up with side-effects. It is
nearly always possible to do something about them. But for this to happen, it is important that
your HIV doctor knows that you are experiencing problems. So it makes good sense to tell your
doctor if side-effects are making your life difficult. In rare cases, people can develop a serious
allergic reaction to a drug. You will be told about the sort of allergic reaction that might occur
and what symptoms to look out for before you start treatment with the drug. Contact your HIV
clinic immediately, or go to the Accident and Emergency department of your local hospital, if
you develop any of these symptoms. Although it may be tempting, do not stop taking your
medication, skip doses, or reduce the number of pills that you take without first speaking to your
doctor. You could develop resistance to several drugs that way. It is better, with your doctor, to
plan how you can safely switch to a different treatment.
Staying proactive
Taking HIV treatment is just one of the things you can do to help keep yourself healthy. Looking
after your general physical and mental health, and your emotional wellbeing, is also very
important. If you stay in touch with your HIV clinic, you will get regular medical monitoring.
This can help spot any potential problems, so you can receive the most appropriate treatment and
care. Try and be as honest as you can with your doctor about any symptoms you are experiencing
and about your lifestyle. This will help ensure that you get the care that you need. If you are
living with HIV try to establish with a doctor (GP). You will still get your HIV treatment and
care from your clinic but GPs are often best placed to look after your other day-to-day health
needs, are experienced in looking after people with long-term health conditions. GP
practices often provide services that your clinic does not.
On a day-to-day level, you can help look after your health by:
Eating a good diet – this should include plenty of fresh fruit and vegetables, but only
moderate amounts of fats and sugars.
Getting enough sleep.
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Exercising regularly.
Talking to someone about your feelings and the issues in your life.
Stopping (or not starting) smoking.
Watching how much alcohol you drink. If you use recreational drugs, be careful about
their use.
Looking after your sexual health.
Both your HIV clinic and your GP can provide information, advice and help about living a
healthier life. It is good to know that a lot of emotional and mental health support is available,
either through your clinic, your GP or through local HIV organizations.
Changing your treatment
You might find that you need to change your HIV treatment but before you do make sure that
you talk to a health professional. There may be a problem with the drugs you are currently on if:
They are not keeping your viral load down.
Your virus is resistant to them.
The side effects are too difficult to deal with.
The drugs have to be taken at times that don‘t suit you.
The rules about taking the drugs with or without food are hard to follow.
They don‘t interact well with drugs you take for another condition.
In these circumstances there is probably a better combination available - in other words, one that
will suit you better and give better results. But to find the right one, you will need to work
closely with your doctor. Now more than ever, it is essential that you talk honestly with your
doctor about any problems you have had with taking the drugs at the right time.If your doctor
understands your lifestyle, it will be easier to choose a combination that is not too difficult to
take. It is likely that your doctor will carry out a resistance test, to check which drugs will work
best against the virus you have. Before you switch, make sure you know about the side effects
that new drugs could have. There is no point changing treatment if the new drugs are even harder
to take. When changing drugs, you normally change all the drugs in the combination, not just
one or two.
HIV treatment and taking other drugs
Taking two or more different drugs together (whether they be prescription or over the counter)
can affect the way one or more of the drugs works in your body. This includes combinations of
prescribed drugs with other prescribed drugs, medicines you can buy over the counter, herbal and
other alternative remedies, and recreational drugs.
Some of these interactions can happen with anti-HIV drugs. These interactions can mean that
you do not have enough of a drug present in your blood for it to work properly. If this happens
with anti-HIV drugs, it can risk the development of resistance. Or it can mean that you have too
much of a drug - then there's more of a chance of side effects developing. Some interactions can
be very dangerous, making one or both of the drugs toxic. Interactions are one of the reasons
why it makes very good sense for your doctor and pharmacist (and any other medical
professional who provides you with medicines) to know about all the medicines and drugs you
are taking.
There are interactions between some anti-HIV drugs and every day, over-the-counter medicine
that it is important to be aware of. These can include indigestion remedies, antihistamines and
cold and flu remedies. It always makes good sense to read the leaflet that comes with all
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medicines as this will include information about possible drug interactions. You can also ask a
pharmacist about possible interactions. Just like conventional medicine, herbal and other
alternative remedies can interact with anti-HIV drugs. You should check with your HIV doctor
or pharmacist before taking any herbal remedies. Some recreational drugs can interact with some
anti-HIV drugs. It is also wise to consider how recreational drug use could affect adherence to
your HIV treatments as sleeping patterns and routine may well be disturbed.
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PHYSICAL FITNESS
Exercise is the best way to improve your cardiovascular health, and for people living with HIV,
looking after the heart should be an important long-term goal. Let us start with a few questions –
have you ever, or do you currently experience any of the following:
Lack of appetite due to anxiety or as a side effect of medication?
Regular upper respiratory tract infections (chest infections)?
Fatigue performing daily activities, whether caused by medication, stress or being out of
condition after an illness?
Difficulty getting a satisfying night‘s sleep?
Muscular wasting and/or a decrease in strength?
Increase in fat and/or high cholesterol/lipid levels?
High blood pressure?
Stress, anxiety or mild depression?
Negative feelings about yourself or your body?
Decreased bone mineral density (osteoporosis?
If you have answered yes to any of the above then you should know that exercise could benefit
you in all these areas! Exercise can restore a person to a better state of health than before the
onset of a chronic illness, can help alleviate medication side effects, and can lead to longer
survival time. If you are an older adult you may find that some of the issues above are common
amongst your age group, whether HIV-positive or not. However, age should not be a barrier to
taking up an exercise program to combat these issues, as exercise is a great way to maintain or
improve your current levels of health and fitness. It is always worth checking with your
doctor whether there are any forms of exercise that would not be good for you, or for any reasons
that you should not exercise.
However, unless you have other conditions which might impact on your ability to exercise (joint
problems, heart problems etc.), people with HIV are able to exercise exactly the same way as
anyone else, and do not really need any specialist advice. Exercise does not have to be a painful
experience or an annoying chore; in fact a good workout should be exhilarating and enjoyable.
So instead of wondering "why exercise?" ask "why not?‖ One of the most useful things to
remember is that training in a gym is not the only way to stay healthy. Instead, you can adopt the
'lifestyle approach', by incorporating your fitness routine into your daily activities. Adopting the
'lifestyle activities' approach is not about building muscles and getting ‗gym fit‘, but just means
that you are able to easily manage your day-to-day activities such as carrying heavy bags of
shopping or running for a bus when you need to. As long as you follow some basic guidelines,
you can exercise when and wherever you like. This level of activity is purely for maintaining
health and to stop the body from getting weaker, we need a minimum of 30 minutes a day
moderate activity, 5 times a week.
This is not as much as it sounds, given that this includes doing housework, gardening, walking
the dog, playing etc. It does not have to be taken in one 30-minute session; you can break it up
into 10-minute chunks if that is more manageable for you. Try modifying your daily routine to
introduce some extra light exercise - walk or ride a bike instead of using public transport or a car,
and walk up escalators instead of standing. We often forget that dancing is a great activity for
health (as long as you do not drink so much while you are out that you negate the health benefits
of dancing!). As an intermediate step, for those of you that would like more health benefits but
still are not interested in going to the gym, you could consider taking up a dance class or joining
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a walking group. These basic changes can yield great benefits for anybody, and you can then
look at a more structured routine at the gym if you like, which will yield far greater long term
benefits for your health and fitness. One common reason people with HIV give for not
embarking on an exercise program is fatigue or lack of energy. Whilst it is true that HIV
infection, medication and coinfections can cause a drop in energy levels, it is also important to
remember that (clinically-related fatigue aside) the more energy you use, the more your body
provides you with. If you have little motivation in your day-to-day life and do little, your body
gets used to this and develops an idea of what levels of energy are needed to manage your
limited day-to-day activities.
The more you rest and sleep, the more your body will come to realize that this is what is needed.
However, if you start to increase your activity levels slowly, your body will start using its energy
stores more efficiently and increase its reserves to accommodate the increase in need. You will
also find that the endorphins that exercise releases improves your mood and give you a postexercise high which can help you maintain the practice. A common problem is that people often
throw themselves into unrealistic programs of exercise and end up injuring themselves or
wearing themselves out. This in turn makes them too anxious to try again. Starting gently and
easily is the best way forwards, slowly building and increasing your activity bit by bit. A good
way of checking this out is to set yourself a small goal to start with, check out how long it takes
you to do it and how you feel. Then, continue to do this, either going further in distance or time
as you progress, until you can see the improvement you have made and feel the benefits.
Once you have started exercising, maintaining it can sometimes be a challenge, so it is very
important to find something you enjoy doing (or at least do not actually dislike!). If you are a
sociable person, try including a friend or partner in the activity to keep you company and
motivate each other while you walk, jog or cycle. Often, although self-commitment may fizzle
out, you are less likely to quit if there is a commitment to someone else involved. Group
activities and classes can be a good way of making and keeping a self-commitment. Having a set
time and day where you play tennis or go to a yoga, aerobics or dance class provides structure
and routine, and you will meet others who are trying to improve their health, and feel supported
and more motivated.
Finally, if you have a period where you stop exercising, the trick into getting back on track is
just to do it! People often say "I will go back after my holiday", or "when the nights get darker"
and use any number of excuses not to re-start. Try writing up a list of what you liked about
exercising and how it made you feel, and then write another list from the negative perspective
and see which one carries more weight (always remembering that the long-term benefits of
exercise are not instantly noticeable, and that better health should be at the top of that benefits
list!).
The Essence of fitness
Before you start exercising, think about what you are trying to accomplish. Setting realistic and
measurable goals is a useful tool in starting and maintaining an exercise program. For example,
telling yourself you are going to "start exercising and lose weight", does not give you anything
precise and clear to work with, which can often be the cause of letting it drop. However, if you
say "I will do 20 minutes of moderate cardiovascular exercise such as biking or walking, 3 times
a week for the next 3 months, in order to lose 10 kilos", you have a clearer plan in mind. You can
then adjust the goal if it seems you might not manage it exactly as hoped.
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Better to adjust a goal and keep on going than just feel defeated and pack it in! If you find
yourself breathless at relatively low levels of activity, a cardiovascular workout would be
beneficial to your heart and lungs. To be considered cardiovascular, an activity must be rhythmic
and continuous over a prolonged period of time (ideally around 20 minutes at a time), such as a
brisk walk, jog, swim, bike ride etc. For improvements in cardiovascular fitness, a minimum of
three 20-minute sessions per week is ideal, although you can train as often as you like.
Incorporating music can help you get into the workout groove and fend off boredom. If increased
strength and/or muscle size is the focus then resistance/weight training is the path to follow. This
encourages the body to adapt by placing an increased demand on your muscles. Your body‘s
response to this new demand is an increase in strength and muscle size. This can be achieved by
simply contracting a targeted muscle for five seconds or by using weights or everyday items such
as paint or soup cans to contract the muscle fully.
In order to achieve continued gains you need to increase the resistance or weight used over time,
since your body will become accustomed to the initial starting weight and need to be constantly
challenged.
An important thing to remember with resistance training is that unlike cardiovascular exercise,
you should not work the same muscles every day. If you work a specific muscle or a set of
muscles one day, you should not work those same muscles the next day. Always take a day‘s rest
between resistance training sessions so that the body has time to rest and recover. However, if
you are determined to see big improvements in your body shape, you can work different muscles
on different days so that daily training is possible. In order to improve overall fitness levels it is
best to do a mixture of both cardiovascular and resistance training. However, please remember
that if you are unwell, you should not do any strenuous exercise. Finally, flexibility is a major
component of physical fitness that is often overlooked. Overworked and tight muscles are
uncomfortable and can eventually cause postural problems, which is why you should always
stretch muscles thoroughly (10 to 20 seconds for each muscle group) after every exercise
session. This will help keep your muscles in healthy balance with a full range of movement.
Whilst fat loss tends to be the main exercise goal for much of the general population, for people
with HIV, there is more focus on gaining and maintaining weight than losing it. First of all, if
you are still taking any of the older drugs, changing medications should stop things getting any
worse. Other than this, exercise is the most effective intervention that tries to reverse the
progress of lipodystrophy in relation to general body shape. Cardiovascular exercise and
resistance (weight) training reduces the appearance of fat around the stomach area in men.
Whilst it may not be possible to get rid of all the fat that accumulates (depending on how severe
the lipodystrophy might be), reducing some of the fat and building muscle in the areas where it
has been lost (arms, legs, buttocks) can reduce the severity of the condition and improve your
body proportions and appearance. As exercise is an extremely effective way of reducing bad
blood fats and increasing the good fats, not only does it combat the outward signs of
lipodystrophy, but it also improves the inner fat issues which, although invisible, are the greater
health concern in the long term. Doctors often prescribe drugs to reduce cholesterol and
triglyceride levels, and whilst these are effective, they can have their own side effects and are yet
more pills to take. Exercise on the other hand does the same job and provides you with a health
investment for the future in terms of cardiovascular risk factors, improves appetite, sleep, bone
density, mood and self-esteem. If there is a better answer than this, it has yet to be found!
Physical activity, exercise, and HIV
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Physical activity is any activity that gets your body moving. It includes any activity that is part of
your daily life – from sweeping and cleaning to carrying groceries, gardening, walking, dancing,
riding a bicycle, lifting weights at the gym, stocking shelves in a store, or playing soccer with
friends. Exercise is a type of physical activity that is planned and done on a regular basis (e.g.,
several times a week) for enjoyment or for improving any aspect of physical fitness – strength,
flexibility, or endurance.
There are two main types of physical activity or exercise for adults: aerobic (cardiovascular or
―cardio‖) and muscle-strengthening (resistance). Labeling something a physical activity or an
exercise is not nearly as important as understanding that the human body was designed to move
and stays healthier when it does.
In other words, being active with your body – whether it is through small amounts of activity
throughout the day or scheduled blocks of time for more strenuous movement – contributes to a
longer, healthier life. Even small changes woven throughout the fabric of your normal life can
greatly enhance your activity level and your health: taking the stairs instead of the elevator,
carrying instead of wheeling groceries through the store, walking a short distance instead of
driving the car. It is important to know that neither expensive equipment nor complicated
techniques are necessary in order for you to be physically active. Aerobic activity can be as
simple as walking or cleaning your home with some added zest. If it is unsafe or uncomfortable
outside, try walking the stairs in your building or stepping up and down off the first step of a
sturdy step-stool.Muscle-strengthening activities can be simple, too. All it takes is your body and
a floor – for sit-ups, push-ups, or deep-knee bends. If you want to lift weights, try cans of food,
jugs of water, or a spare brick. There are many ways to be safely physically active without
spending a lot of money or going special places.
Benefits of Exercise and Being Physically Active
There are many ways in which physical activity can improve your health – it can build and
maintain muscle, increase your endurance, and strengthen your heart. In addition, there are many
benefits of exercise that are especially helpful for people living with HIV. Being physically
active and having an exercise routine can:
Increase muscle mass and prevent muscle loss. It is important to note that women rarely
‗bulk up‘ or build large muscles without serious weight training regimens over long
periods of time. Women‘s bodies have low levels of testosterone – the hormone that can
lead to bulky muscles. Also, many exercises can tone existing muscle without adding
bulk.
Reduce fat around the waist.
Lower total cholesterol and LDL (the ―bad‖ cholesterol)
Raise HDL (the ―good‖ cholesterol)
Lower triglycerides (a type of fat in the bloodstream)
Help control blood sugars
Reduce depression
Strengthen bones (help prevent bone disease)
Strengthen the immune system
Improve sleep quality
Reduce stress
Give you more energy throughout the day
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There is also a connection between muscle mass and immunity. People who exercise often have
higher CD4 counts and fewer side effects from HIV and HIV drugs. Because powerful HIV
drugs allow many HIV+ people to live long, full lives, many of the medical problems facing
people living with HIV have more to do with diseases of aging than HIV-related illnesses. Being
physically active is important in preventing aging-related health issues. In addition to the benefits
listed above, being physically active lowers your risk for:
Breast cancer
Heart disease
Stroke
High blood pressure
Metabolic syndrome (including diabetes)
Colon cancer
Types of Physical Activity
There are two types of physical activity that adults need each week to improve their health –
aerobic and muscle-strengthening activities.
Aerobic (Cardiovascular, “Cardio”) Activity
Aerobic exercise uses oxygen to burn fat in your body. This is why people who are trying to lose
weight often do a lot of aerobic exercise. It is also called cardiovascular exercise, because it
raises your heart rate and makes your heart stronger. Besides burning fat, it can increase your
endurance so that you do not get tired as quickly when you are active. Aerobic exercises can also
lower cholesterol, triglycerides, and blood sugars. Aerobic activity is often described in terms of
its intensity, or how much effort it takes to do something. During moderate intensity activity,
your breathing and heart rate become a bit higher and you will likely be a bit sweaty at the end.
Another way to think of moderate intensity activity is any activity during which you can talk but
not sing. During vigorous intensity activity, a person cannot say more than a few words without
pausing for a breath, since vigorous effort causes your heart rate and breathing to increase
substantially.
Examples of moderate aerobic activity include:
Brisk walking (> 3 miles per hour, but not race walking)
General gardening (e.g., weeding, raking leaves)
Biking (< 10 miles per hour)
Water aerobics
Examples of vigorous aerobic activity include:
Running, jogging, or race walking
Swimming laps
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Jumping rope
Aerobics (including dancing)
Heavy gardening (e.g., digging holes, hoeing)
Cross-country skiing
To see substantial health benefits, adults need to do at least:
150 minutes (two hours and 30 minutes) of moderate intensity aerobic activity per week
OR
75 minutes (one hour and 15 minutes) of vigorous intensity aerobic activity per week OR
an equivalent combination of moderate and vigorous intensity aerobic activities
Aerobic activity should be done for at least ten minutes at a time; however, how you reach your
total weekly goal is up to you. For example, if you aim for 150 minutes of moderate activity per
week, you could do 30 minutes of activity five days a week or ten-minute periods of activity 15
times throughout your week. It is important to ask your health care provider if you have any
conditions that might make it a bad idea to do aerobic activity – especially muscle wasting or
very little body fat.
Muscle-Strengthening Activities
Muscle-strengthening activities, also called weight-bearing exercise or resistance training,
involve moving or resisting the movement of weight with your muscles. For most people, it is
normal to have mildly sore or tired muscles after weight or resistance training. This occurs
because these activities actually cause very small muscle tears that take two or three days to heal.
When the muscles heal, they heal stronger. Therefore it is important for you to wait for two to
three days after having exercised a part of the body before strengthening it again. This is usually
the amount of time it takes for any soreness to go away.
For health benefits, adults need to do muscle-strengthening activities at least two days a week at
moderate to high levels of intensity. These activities should work all the major muscle groups,
including the arms, legs, chest, back, and abdomen.
There are several types of muscle-strengthening activities:
Exercises that use body weight as resistance (push-ups, sit-ups, deep-knee bends)
Working with resistance bands
Lifting weights
Muscle-strengthening exercise can be especially helpful for HIV+ persons because it can help
prevent both muscle and bone loss. If you have had muscle loss, weight-bearing exercise is
probably good for you. However, if you have osteoporosis (bone disease), weight-bearing
exercise could be dangerous. It is important to ask the health care provider if weight-bearing
exercise is good for you.
Exercise and nutrition
A healthy diet is an essential building block in making health improvements, and should be the
foundation for the entire program. Exercise improves appetite and increases your need for
calories, so having a healthy balanced diet is crucial. A person can be extremely advanced in
their workout but not receive the full benefits because of the fuel they are using – you wouldn‘t
expect a high performance sports car to run on diesel, so why would you ask your body to do the
same? The general advice on what kinds of food to eat and in what proportions is exactly the
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same for people living with HIV as they are for anyone else. If you are looking to reduce fat then
lowering your daily calorie intake and increasing your activity levels will help get rid of those
extra inches.
Try especially to eat less fats, sugars and processed foods (which often contain quite a lot of
both). On the other hand, if you are looking to increase weight and build muscle, then you need
to ensure you‘re taking in enough calories to fuel your muscle growth. Since protein is needed to
build muscle, some people buy supplements such as protein shakes, to help do this. However,
independent research shows that a healthy balanced diet contains enough protein to build muscle
and that supplements are not really necessary. If you want specific recommendations on healthy
eating, ask at your clinic to speak to a dietician.
Generally, you should allow at least an hour after a large meal before exercising, unless you are
taking the 'lifestyle activities' approach of moderate exercise, in which case a walk after a meal
would be a great idea. It is equally important not to exercise on a completely empty stomach,
though. Eating a light snack or some fruit before exercising is fine and will help maintain your
energy levels. You should also have a snack afterwards to replenish your energy levels. You will
hopefully already know the importance of drinking fluids, especially when on medication.
However, given the increase in body temperature during exercise, you will need to drink more to
hydrate your body, which means drinking more fluid than your recommended 1.2 liters (6-8
glasses) a day. Always ensure that you have water before, during and after a workout - try not to
wait it until you are thirsty before having a drink.
Other Types of Physical Activity
There are other types of exercise or movement that can improve your health as well. Activities
that improve flexibility are important, especially as we age. Things like stretching and yoga can
help prevent stiffness and increase the range of motion in joints. Flexibility exercises can help
your joints, decrease back pain, increase the flow of blood and nutrients to the tissues, and
decrease the likelihood that you will injure yourself doing other forms of exercise. Yoga is a
form of physical activity that combines movement with poses and attention to the breath. It can
improve physical qualities such as strength, flexibility, balance, and endurance. It can also
reduce stress, anxiety, and depression. T‘ai chi is another activity that involves movement and
attention to the breath. T‘ai chi is a low-impact, self-paced system of gentle physical activity and
stretching. It can reduce stress, improve balance, and foster serenity.
Starting a New Physical Activity Program
Speak to your health care provider about what types of physical activity are best for you
Record your weight and the measurements of your arms, legs, chest, stomach, and hips
before starting your exercise program.
Set realistic goals for yourself. Setting and achieving small, measurable goals is a good
way to build toward larger goals.
Find an exercise buddy. Becoming physically active with a friend can keep you
motivated and less likely to skip workouts.
Start slowly. Do what you can, but do not overdo it. Be patient with your body and your
workout.
 When starting aerobic activity, walk or jog at a pace where you can talk but are not out
of breath. You may walk/jog for ten minutes and slowly add five minutes to your work
out until you are up to 30 minutes or more several times a week.
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 When starting muscle-strengthening activities, use slow, controlled movements. Lifting
or dropping weights quickly can be dangerous and will not help build muscle.
Stay hydrated! Remember to drink a lot of water before, during, and after your workout.
Eat well! Good nutrition is important to staying healthy and giving you the energy you
need to be physically active. Wait two hours after a full meal before exercising.
If you are able, try hiring or talking to a certified fitness trainer to help you develop a
good program
Do not exercise when you are feeling sick (feverish, vomiting, dizzy, diarrhea, etc.)
Becoming physically active requires commitment. It may take a while for you to reach your
weekly goals, but do not give up! You and your health – and those who depend on it – are worth
the time and effort it takes.
SMOKING AND TOBACCO USE
Smoking and using smokeless tobacco products like dip, snuff, or chew can seriously harm your
health. Quitting smoking or other tobacco products can stop, and in some cases reverse, these
harmful effects. While quitting smoking or smokeless tobacco is not easy, it is often the single
biggest thing you can do to improve your health. You can do it – and there are many resources
available to help you. Cigarette smoking is a dangerous habit even for you in perfect health.
However, the risks involved with smoking seem greater for one living with HIV. Many people
living with HIV rarely worry about the serious illnesses that smoking might cause because they
do not expect to be alive long enough to get them? Now that HIV positive people live longer,
healthier lives, it is important to pay attention to issues that affect your long-term health.
Smoking cigarettes may affect HIV in several ways:
 Less successful HIV drug therapy: smoking may cause HIV drugs not to work as well as
they should
 More likely to experience side effects of HIV drugs
 Lower CD4 counts
 Greater chance of developing opportunistic infections (OIs)
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 Higher rates of HIV transmission: damage to blood vessels caused by smoking can create
tiny cuts in the mouth, making it easier for the smoker to get HIV from another person
Smoking is very bad for your heart. Smoking causes your blood vessels to constrict, or get
smaller. This reduces oxygen flow to the rest of your body, raises your blood pressure, and
makes your heart work harder. Many HIV positive people have high levels of lipids (fats or fatlike substances) such as cholesterol and/or triglycerides in their blood because of HIV disease
and certain HIV drugs. If you have too much cholesterol in your blood it can build up in your
arteries, forming plaque. Smoking also makes your blood vessels stickier. These smaller, stickier
blood vessels are more likely to get clogged with plaque than healthy blood vessels. Clogged
blood vessels can cause a heart attack or stroke. Smoking uses up your body‘s levels of vitamins
and minerals called antioxidants. These micronutrients are responsible for protecting the body
against heart disease and cancer. Of the several thousand chemicals in tobacco smoke, at least 69
are known to cause cancer.
There is a strong link between cigarette smoking and lung cancer. Lung cancer is very serious
and usually fatal. Lung cancer is much more common in HIV+ smokers than HIV-negative
smokers. HIV drugs may play a role in increasing lung cancer risk, or that HIV attacking the
immune system may leave the body less able to fight off cancer. In addition to lung cancer,
smokers are also at higher risk for:
Cervical cancer
Uterine cancer
Cancer of the mouth, throat, voice box, and many more
Smoking damages the small air sacs in the lung called alveoli. It is therefore the main cause of
chronic obstructive pulmonary disease (COPD), which includes emphysema and chronic
bronchitis. Smoking can also make asthma worse, and can increase the risk of respiratory
infections. This is especially important for people with low CD4 counts. Smokers are more likely
to get certain OIs than non-smokers. Smoking increases your risk for developing:
Pneumocystis pneumonia (PCP)
Tuberculosis (TB)
Cryptococcal meningitis
Thrush
Cervical cancer
Anal cancer
There are additional concerns that women who smoke may face. First of all, smoking increases
the likelihood that a woman will have trouble getting pregnant. It also decreases a man‘s sperm
count and leads to abnormally-shaped sperm. If a woman smokes during pregnancy, she
increases the chances of miscarriage, prematurity (born too early), having a low birth weight
baby, and stillbirth (born dead). Smoking may also increase a woman‘s chances of giving HIV to
her baby during delivery. Children born to women who smoked during pregnancy or are exposed
to smoke in the home (second-hand smoke) are more likely to develop sudden infant death
syndrome (SIDS). Children who are around parents who smoke are more likely to suffer from
asthma, colds, and ear infections. Also, smoking is a major risk factor for osteoporosis (bone
disease). This is in addition to the risk of bone disease already associated with being HIV+ and
being a woman.
Finally, smoking can put a damper on your love life by causing impotence (inability to maintain
an erection) in men who smoke or breathe secondhand smoke. No matter how long you have
been smoking, quitting can greatly improve your health. Within 24 hours your blood pressure
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and heart rate drop, and your risk of heart attack and stroke begin to go down. Within several
months, you can have better circulation and lung function. Over several years, you can greatly
reduce your risk of lung cancer and heart disease. Women who quit at age 35 will live an
estimated eight years longer than continuing smokers. People who quit at age 50 are half as
likely to die early of smoking-related causes than those who continue to smoke. Quitting
smoking or going tobacco-free has other benefits as well:
Improved sense of smell and taste
Healthier-looking skin
Whiter teeth, healthier gums, and fresher breath
Increased ability to participate in physical activities (exercise, playing with your children,
home projects)
Economic savings: no more money spent on tobacco products; money saved on health
insurance premiums
No more restrictions: as more places ban smoking (restaurants, airports, malls, parks),
smoke-friendly spaces are harder to find
Tools for quitting smoking
There are several things that are helpful to understand if you are thinking about quitting smoking
or smokeless tobacco. The first has to do with why it is so hard to quit and to stick with it once
you have quit. Nicotine is a naturally occurring substance in the tobacco plant. It is addictive,
just like heroin and cocaine. After smoking regularly for some time, people become physically
and emotionally dependent on nicotine. In order to quit, both the physical and emotional
dependency must be addressed. The physical dependence causes uncomfortable withdrawal
symptoms such as anxiety, irritability, impatience, restlessness, trouble concentrating, dizziness,
trouble sleeping, depression, headaches, and increased appetite. These symptoms usually are at
their worst 2 to 3 days after quitting and gradually get better over several weeks. It may be easier
to stay quit if you know in advance how you may feel and how long you may feel that way.
Overcoming the emotional dependence on tobacco use can be just as difficult for some people
trying to quit. For many, smoking becomes part of their daily routine, whether it is a means of
relaxing or handling anxiety, boredom, or stress. Often, smoking or using smokeless tobacco is
associated with triggers – particular emotions (e.g., anxiety) or activities (e.g., having a cup of
coffee, socializing with friends) that give you the urge to smoke. Knowing your triggers and how
to avoid them can be a key part of successful quitting. Quitting smoking and smokeless tobacco
products is not just a matter of willpower. It is important to discuss your plan to quit with your
health care provider. She or he should be encouraging, identify local resources, and suggest
appropriate medical therapies to help you quit.
There are several tools available to help you quit:
Nicotine replacement therapy: this is used to help ease withdrawal symptoms while
breaking the smoking habit. Afterwards, the dose is gradually reduced and eventually
stopped. Nicotine replacement therapy is available in several forms:
 Transdermal patches (Habitrol, Nicoderm, Nicotrol): patches are worn on the arm or
torso, and nicotine is absorbed through the skin
 Gum (Nicorette): nicotine is absorbed through the lining of the mouth; recommended
dose is dependent on the amount of tobacco used
 Lozenges (Commit): hard candy that is sucked slowly and absorbed through the lining of
the mouth
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 Inhaler: a puff from the inhaler puts nicotine into a vapor that is absorbed in the mouth;
some smokers find it helpful that this method is the most like smoking a cigarette;
available by prescription only
 Nasal spray: spray of nicotine into nostrils; available by prescription only
Anti-smoking medications:
Zyban (buproprion): originally an anti-depressant named Wellbutrin, this drug reduces
the urge to smoke; available by prescription only
 Chantix (varenicline): reduces withdrawal symptoms and the pleasure associated with
smoking; available by prescription only
Acupuncture: an alternative therapy that involves placing very small needles around the
outer ear to reduce cravings and promote relaxation
Hypnosis: or hypnotherapy, involves reaching a state of deep relaxation in which one is
open to suggestions for behavioral change (such as quitting smoking
Counseling and Support: many people find it helpful to have professional counseling or
the organized support of others when quitting. Many places have organized support
groups and smoking cessation classes.
Cigarette smoking is a health risk that you control, and quitting smoking is probably the single
biggest thing you can do to improve your health. Smoking is a hard habit to break. It gets more
difficult the longer and more that you smoke. If you tried to quit before and began smoking
again, do not worry.
It takes many people several tries before they quit for good. If you feel you are unable to quit,
just cutting down the number of cigarettes you smoke can be beneficial to your health.
Even though giving up smoking may be one of the hardest things you ever do, it can also be one
of the best things to do for yourself, your health, your finances, and your family and friends. You
deserve to be supported through this difficult time. Talk to your health care provider and choose
the method(s) that work best for you.
Injection drug use and HIV transmission
Sharing needles, syringes, and drug injection equipment or "works" (including cookers and
cotton) allows HIV to be spread from one person to another. Blood from a person living with
HIV (HIV+) can remain in or on a needle or syringe and then be transferred directly to the next
person who uses it. HIV-infected blood can also find its way into drug solutions through:
Using blood-contaminated syringes to prepare drugs
Reusing water
Reusing bottle caps, spoons, or other containers ("cookers") used to dissolve drugs in
water and to heat drug solutions
Reusing small pieces of cotton or cigarette filters ("cottons") to filter out particles that
could block the needle
Injection drugs users can reduce the risk of HIV infection in the following ways:
Using drug treatment programs to get help with quitting
Using a new, sterile needle and syringe every time and not sharing needles, syringes,
cookers, or cotton with others
Using needle exchange programs to get new unused needles and syringes, etc.
If new, unused needles and syringes are not available, cleaning the ones that have been
used thoroughly before using them again with another person.

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Stopping injection drug use altogether is probably the best thing you can do for your health. This
may be an incredibly hard thing to do and it may not work for everyone. However, it will get rid
of all the risk of HIV infection that comes from sharing contaminated needles, syringes, cookers,
and cottons. If you do inject drugs, it is best to use a new, sterile needle and syringe every time
you inject and do not share needles and syringes with others. You might not think of yourself as
having "shared" a needle and syringe if you shared it with a close friend or acquaintance. But
sharing needles and syringes with friends can be as dangerous as sharing with strangers. Street
sellers", of needles and syringes may repackage used needles and syringes and sell them as
sterile when they are not. Do not assume a needle and syringes are new, even if they seem to be
packaged as new. Obtain needles and syringes from reliable sources of sterile needles and
syringes, such as pharmacies.
In many parts of the globe, you can purchase sterile needles and syringes without a prescription
from a local pharmacy. If you must share needles and syringes because new, unused ones are not
available, the risk of infection can be reduced by cleaning them in bleach and water immediately
after use and just before reuse. Keep in mind that cleaning with bleach does not make re-using
the equipment risk-free. However, it is an important tool to reduce the risk of infection.
For effectiveness, you must be consistent and careful while in accordance with the cleaning
procedures listed below:
You can substitute hydrogen peroxide or rubbing alcohol if you do not have any bleach.
Use hard alcohol, not beer or wine, if that's all you have.
You can improve cleaning effectiveness by taking the set apart, removing the plunger
from the barrel and soaking them in bleach for at least 30 seconds.
Never shoot or drink the bleach.
If the cooker (spoon) must be reused, soak it in bleach for at least 30 seconds and then
rinse it with clean water.
Since bleach loses its effectiveness with exposure to light, store all bleach for cleaning
needles and works in a container that does not let light pass through.
Injection drug users are also at a high risk for contracting hepatitis B (HBV) and C (HCV), both
of which are diseases spread through blood that damage the liver. Hepatitis is easily spread
through sharing needles and other injection supplies, such as cookers, cotton, and ties. Cleaning
your skin prior to injecting is important. Also make sure you throw away alcohol pads and cotton
wipes so that no one else touches them. Wipe down surfaces when possible before injecting.
Cleaning your injection drug equipment with bleach according to the directions listed above can
kill HBV; it is unclear if it can kill HCV. The best way to prevent hepatitis is to use a new needle
and syringe each time, and never share any part of your works. Get vaccinated against hepatitis
A and B to prevent infection with these two types of the virus; there is no vaccine to prevent
hepatitis C.
Sharing a needle, syringe, or any related equipment for any use, including skin popping, injecting
steroids, tattooing, and body piercing, can put you at risk for HIV and other blood-borne
infections. If you plan to have body piercing or get a tattoo, make sure you go to a qualified
technician who uses sterile equipment. If you use needles for any reason, think about ways to
reduce or get rid of the risk of spreading diseases.
The safest thing to do is to stop injecting drugs altogether. If this is not possible right now, get
new, sterile needles each time you shoot up or find a needle exchange program. If you have to
share, thoroughly clean your needles and works with bleach and water after each use and before
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reusing. If you are at risk through injecting drugs either now or in the past, get an HIV and
hepatitis test. You can also put your sex partners at risk if you have unsafe sex, so remember to
use condoms and practice safer sex.
STRESS MANAGEMENT
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We all experience a certain amount of stress every day. But if you are living with HIV, stress can
become overwhelming. Long periods of high stress can damage your immune system and cause
physical and emotional illnesses. In one way or another, stress can accelerate the progression of
HIV. You will be able to manage stress better if you recognize the symptoms. Below is a list of
some common symptoms.
Physical Symptoms
Allergies
Change in appetite
Back pain
High blood pressure
Breathlessness
Chest pain
Clammy hands
More colds than normal
Constipation
Diarrhea
Dizziness
Fatigue
Headaches
Racing heartbeat
Muscle tension
Nightmares
Rashes
Restlessness
Sleeping problems
Stomach aches
Emotional Symptoms
Anger
Anxiety
Denial of a problem
Difficulty making decisions
Loneliness
Nervousness
Feeling powerless
Feeling rejected
Feeling trapped
Feeling unhappy for no reason
Being easily upset
Worrying frequently
Behavioral Symptoms
Increased use of alcohol, tobacco or other drugs
Neglecting your physical appearance
Arguing with friends or family on minor issues
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Avoiding tasks and responsibilities
Difficulty concentrating
Crying easily
Being late to work
Eating too much or not enough
Snapping at people
Watching more TV
Withdrawing from family and friends
Tell your health care provider if you experience any of these symptoms, since some may have
causes other than stress (e.g., side effects of HIV medications).
Common Causes of Stress
What are some of the things that can make you feel stressed?
Health problems in the family
Dealing with HIV drugs
Financial difficulties
Children and childcare issues
Substance use
Social isolation
Disclosure issues
Insurance worries
Housing concerns
Fatalism (focusing on death and dying)
Chronic impatience
Grief
Absence of purpose and goals
Lack of self-assertiveness
Lack of support
Poor coping skills
Poor eating habits and nutrition
Sleep disturbances
Inadequate exercise
Limited ability to care for yourself when sick
Limited understanding of HIV-related health issues
Poor relationship with your health care provider
Dealing with Stress
Stress often results from feeling that things are out of control. A key to stress management is to
understand the need, help, and finding the resources that can help. That way, even if you have a
lot on your plate, you will feel better able to cope with it. Make a list of the following:
Areas in which you feel overwhelmed and need help
Who or what can help
How to access and utilize available services
Some ministries publish books on resources and agencies that are available to the public. Some
organizations have an information and referral service that can help. Often a caseworker or
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advocate at the AIDS service organization can help to sort through the information. What kinds
of free or low cost services can help with stress? It depends on where you live, but some of them
include: medical services, counseling and psychological help, child care, taxi rides, bus passes,
acupuncture, yoga classes, community college classes, massage, support groups, HIV positive
dating services, free computers, legal services, drug and alcohol programs, etc.Apply as many
programs, agencies, or services as you can and do not feel guilty about accepting money for
services. That is what they are there for. If there are limits to the number of services you can
receive from a certain agency, choose the most important or necessary services first. It may take
some time to fill out and process all the paperwork, but it will be worth it in the long run.
Do not forget about friends and family. If someone offers help or asks you what you would like
for a holiday or your birthday, speak up! If what you really need is someone to look after the kids
for a weekend or help pay your rent, ask. The worst that can happen is they will say no. Another
key to dealing with stress is learning the value of self-care. You may consider taking time to
exercise, getting a massage, or talking with friends too selfish. But if you become overwhelmed
by stress, who will tend to your responsibilities? Many HIV positive people are too busy caring
for kids or partners to notice that they ―burning out‖ mentally, physically, or emotionally.
Depression
Long periods of high stress can lead to depression. Sleep problems, changes in appetite, low sex
drive, decreased energy, loss of interest in activities, feelings of guilt or worthlessness, difficulty
concentrating, and thoughts of killing yourself are all symptoms of depression. Depression is
often undiagnosed and untreated in HIV+ people because many of the symptoms are common to
HIV disease or HIV drugs.
Over half of all people living with HIV experience depression at some point in time.Women are
twice as likely as men to become depressed, regardless of their HIV status. Making sure you are
mentally healthy is important, as depression can be a major reason that you do not take your HIV
drugs regularly. Depression can be treated through therapy (individual or group), medications, or
alternative therapies. If you think you are depressed, talk to your health care provider. Everyone
has different stressors in their lives and everyone finds different methods effective in dealing
with those stressors. Look for stress-reducing techniques that work for you.
Here are some ingredients for consideration:
Talk about it: a friend or family member may help you sort out your feelings and get a
new perspective on problems
Join a support group like for HIV positive persons
Get regular exercise
Change your own outlook and actions, rather than trying to change others
Keep a journal
Practice assertive communication (learn how to say no to things you do not want to do
and yes to things you do want to do)
Get enough sleep: most people need about six to nine hours of sleep at regular times
Take a break and treat yourself
Practice hypnosis, biofeedback or massage to relieve tension
Listen to music
Try relaxation techniques such as meditation, deep breathing, or visualization:
Mindfulness meditation may prevent CD4 cells from decreasing when experiencing
stress.
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Eat healthfully: fuel your body with good foods that will help it to remain strong.
Remind yourself of your accomplishments
Try to find the positive aspects of change
Try to look back on a crisis as a learning opportunity
Alternatively, try to approach your health care provider to talk about stress and how it affects
you. It is not a sign of weakness to care for you mentally or physically. Consider seeing a
therapist or counselor if stress gets out of hand.
Depression, women and HIV
In general population, women are two times more likely to be depressed than men. While it is
not clear why women suffer from depression so much more than men, there are several potential
contributing factors. One reason used to explain the high rate of depression among women is the
burden many women bear as the primary caregiver of family members. Often, women care for
others and not care properly for themselves. Other factors that may lead women to feel depressed
include having a lower household income, less education, less social support, and a greater
chance of being physically and/or sexually abused. Women living with HIV are even more likely
to suffer from depression than women in the general population.
Although many HIV+ people live long, healthy, and full lives, learning that you are HIV
positive is life-changing news that can be very difficult to hear. Some people feel overwhelmed,
helpless, or unable to cope with an HIV diagnosis. Others are afraid for their future health, or of
disclosing their HIV status to friends and family. The stigma that many HIV+ women experience
may lead to social isolation and feelings of loneliness. All of these feelings – helplessness,
anxiety, and loneliness – are key components of depression. Many HIV positive women
experience large life stressors such as racial discrimination, poverty, violence, and single
parenthood which can contribute to depression. An HIV diagnosis can simply add the burden to
the chances of developing depression. There is a direct connection between depression and
reduced health for those living with HIV. Specifically, HIV positive women who are depressed
seek HIV care less often, have more trouble sticking with their HIV drug regimens, and have
more rapid disease progression. If you are experiencing symptoms of depression, you may miss
doses, take the wrong dose, or take the dose with the wrong food or at the wrong time. Not
taking your HIV drugs regularly can lead to the development of resistance, which makes HIV
medications less effective at fighting the virus. This can cause your CD4 cells to go down and/or
your viral load to go up. Even among HIV+ women with similar CD4 counts and viral loads,
being depressed can double the likelihood of dying compared to having few or no symptoms of
depression.
For women who make contact with a mental health provider, the risk of death is halved. It is
important that depression be diagnosed and treated as quickly as possible to avoid serious
problems. Being depressed, in everyday language, occurs when someone feels down, sad, blue,
unhappy, or hopeless. These are all normal feelings, and almost everyone experiences them at
one time or another. Receiving and living with a diagnosis of HIV can be stressful,
overwhelming, and fearful at times. So it is not unusual for HIV positive people to feel down or
anxious sometimes.If these feelings are overpowering, disabling, or long-lasting, however, they
may be a sign that you are experiencing a condition known as depression. Compared to sadness,
depression is more intense, lasts longer (more than two weeks), and interferes with your day-today ability to function. In medical language, depression is a diagnosis based on having a certain
number of specific symptoms. Depression is not a normal part of being HIV positive and can
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cause some serious health problems. If you have any of these symptoms or are unsure if what
you are experiencing is normal, it is important to talk to your health care provider.
Symptoms of depression include:
Changes in appetite or weight
Aches or pains for no clear reason
Feelings of sadness, guilt, hopelessness, and/or worthlessness
Irritability; getting into arguments easily
Lack of interest or pleasure in activities that usually interest you
Low sex drive
Difficulty making decisions or concentrating
Changes in sleep patterns
Fatigue or loss of energy
Thoughts of harming oneself or committing suicide
If you are thinking of hurting yourself by committing suicide, please tell someone
immediately. In addition to the symptoms listed above, you may also notice yourself doing some
of the following if you are depressed:
Not taking care of yourself in terms of grooming, dressing, and personal hygiene
Skipping or not going to work; calling in sick
Being very critical and down on yourself
Not talking to or going out with friends
Not pursuing-doing your usual social activities, hobbies, or recreations
Crying or feeling like crying more often than normal, and often without knowing why
Using alcohol or other recreational drugs more than usual
Sometimes substance use hides depression. This happens when people try to ―self-medicate‖ by
using drugs or alcohol to try not to feel the pain of what troubles them. If you feel that an issue,
such as depression or anxiety, causes or adds to your substance use, ask your health care provider
or AIDS service agency for a referral to a mental health provider.
Treatment Options-Depression
The good news is that depression is treatable. Treatments include psychotherapy, social support,
medication, alternative therapies, or any combination of these. While it is true that depression
can get better on its own, this can take months or even years. Treatment will likely shorten the
time it takes for you to feel better and may help to stay on your HIV drugs, and keep from losing
a job, a relationship, or even your life. Various mental health professionals can provide
psychotherapy, also known as ―talk therapy‖ or personal counseling. Psychotherapy involves
talking to a trained professional about what you are experiencing. The therapist provides support
and helps you to understand what is troubling you. While most psychotherapy occurs one-onone, group therapy is also helpful for some people. Some of the mental health professionals who
provide psychotherapy include: psychologists, psychiatrists, social workers, marriage and family
therapists, mental health counselors.
It may also be helpful to seek the support of other HIV+ persons through support groups or peer
counseling from friends and family to avoid depression or cope better with it. Contact with
others helps prevent feeling lonely and isolated. Friends and family can also provide emotional
support, which is very important for people living with a serious illness like HIV. Members of a
social support network can help with chores like shopping or housework and act as caregivers if
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you get sick.Antidepressant medications are often prescribed for depression or anxiety and
reduce symptoms in some people. Care should be used when taking antidepressant medications
with HIV drugs. Many of the popular kinds of antidepressant and anti-anxiety drugs can interact
with some HIV drugs. It is important to talk to your health care provider before starting any new
medications. Meditation, massage, yoga, breathing, and relaxation exercises are all alternative
therapies that may help you feel better. Acupuncture and acupressure therapies may help reduce
stress and improve your mood.
Mindfulness techniques help get back in touch with what makes life worth living and avoid
going into downward mood spirals. Good nutrition and exercise are beneficial, no matter which
treatments you choose. Talk to your health care provider about depression, especially if you are
experiencing symptoms or having trouble sticking to your HIV drug regimen. If you are
suffering from depression, ask for a referral to see a mental health care provider. Mental health
care (including psychotherapy, social support, medication, and alternative therapies) can not only
improve your adherence to HIV drugs, but also improve your health and quality of life.
Many people do not believe in the value of mental health treatment. You or those you love may
have heard that people who see therapists or take antidepressants are ―crazy,‖ or weak. Try not to
let these judgments keep you from getting treatment that will make you feel and live better.
When we experience physical problems, it is best to get treatment. If someone breaks her leg, we
encourage her to see a health care provider to get the leg checked and treated so it heals properly.
Similarly, when we experience emotional difficulty, there is no need to suffer when effective
treatment is available.
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SOCIAL & LEGAL ISSUES IN HIV/AIDS
Lasting Power of Attorney (LPA)
When you become too ill to make decisions about your health, welfare or finances, this
responsibility can be delegated to another individual. Any person, with or without HIV, could
need someone else to make important decisions on your behalf if you lose consciousness due to
illness or injury.
In a person with HIV or AIDS, this may become necessary if psychiatric complications occur.
Better treatment means this is far less common than in the past but you, living with HIV may still
develop subtle difficulties with logic, memory, concentration and communication or more
serious psychiatric problems such as HIV-related dementia. You may therefore wish to appoint
someone to look after your interests in the future, in case this becomes necessary at some point.
You can identify this person (or more than one person) by granting them Lasting Power of
Attorney (LPA).
There are two types of LPA:
Health and welfare
Property and financial affairs
Personal welfare-LPA
Even if you have granted someone else LPA for your health and welfare, you still retain the right
to make your own decisions about these matters for as long as you are able to do so. Doctors are
obliged to ascertain your ability to consent to treatment and to obtain your views as far as is
possible. If you lose the capacity to make your own choices the attorney may then make
decisions regarding medical treatment.They might also make choices about the care environment
(for example, deciding whether you need to go into a nursing home), visitors, and everyday
matters such as diet. If you wish to give your attorney the power to make decisions about lifesustaining treatment, this must be explicitly stated in the LPA application form. Life-sustaining
treatment means interventions that, if withdrawn, would be expected to lead to your death.
Property and financial affairs-LPA
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This type of LPA can cover matters such as paying bills, collecting income or selling property.
As with a health and welfare LPA, the appointed attorney may take responsibility for your
finances if you become incapable of making your own choices. However, one important
difference is that you can also choose to have the financial and property LPA take effect at any
time, even if you are still capable of making your own decisions. You might choose this path if,
for example, you are finding your routine financial responsibilities too burdensome because of
declining health. The person holding this type of LPA does not have the authority to make
decisions about your health and personal welfare, although they may be consulted as part of a
wider discussion about your best interests.
Absence of LPA
Sometimes you may clearly lack the capacity to make decisions when LPA is not in existence.
No relative has an automatic right to make medical decisions for another adult but doctors can
talk to your family and seek consent from the next of kin. There are no clear-cut rules on who is
the next of kin, but it is usually considered to be your husband, wife or civil partner of the
person, or your nearest blood relative. Alternatively, an application must be filed to the Court in
the following cases:
property and financial decisions
decisions about life-sustaining medical treatment
disagreements that cannot be resolved in other ways
Where on-going decisions must be made about someone who lacks capacity.
The Court can make decisions or appoint a deputy, who may be a family member or someone
close to you. If this is not possible, the Court can appoint a professional deputy. Many people
will be involved in making decisions for you – carers, family, professionals, and an attorney or
deputy. Everyone has a duty to work together in the best interests for you. Family members –
including civil partners – have a right to be consulted in such decisions. If considering preparing
a LPA, then consult a solicitor. Always talk to your doctor when considering a health and
welfare LPA, especially if you are thinking about giving your attorney the authority to decline
life-sustaining treatment.
Guardianship
Although it can be an emotionally-difficult task, if you are the parent of minor children, you
should make arrangements for their future care. With proper planning, you can make sure that
your children will have good care in the event that you become too ill to provide for them.
Arrangements for the future care of children require formal legal procedures. Therefore, you
should consult the legal department at a local AIDS service organization or a private attorney.
The most common ways of making plans for the future care of children are the following:
Guardianship is a legal arrangement that allows you to appoint someone else to care for
your children in case you become disabled.
The legal guardian has the right to act as the children‘s parent and can make important
decisions for the children, including decisions about health care, education, and housing.
A parent should choose a guardian who is dependable and capable of providing a high
level of care and stability in the children‘s life.
Making someone a legal guardian of your children requires a court hearing. At the hearing, you
must explain to the judge why you want someone else to take care of your children. The person
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you want to name the guardian is called the designated guardian. The designated guardian must
also appear in court and demonstrate that he or she is a person over 18 years old and has never
had a felony conviction. The court will investigate the designated guardian to determine if he or
she is qualified to provide care for the children. The court will legally recognize the guardian of
your children once it is convinced that it would be in the best interest of the children.
In making these arrangements, you must understand that both parents may have parental rights to
care for the children, even if one parent has never been involved in the children‘s life. If you
believe that placing your children with their other parent would be bad for them, you obtain a
court hearing to testify why your selected guardian would be a better caregiver than the other
parent. The court can make the legal decision, based on the evidence, as to which person would
make a better guardian. The guardianship arrangements you make now do not have to be
permanent. You can make changes in the future if you decide you would like different
arrangements for your children.
Standby Guardianship
Standby guardianship allows a parent to take care of his or her children until he or she can no
longer do so. Once the parent becomes incapable of providing care to the children, the standby
guardian can take responsibility and has legal authority for some days after the parent becomes
incapacitated. Within some days the standby guardian must make a legal request for
guardianship of the children in order to maintain legal authority. To make standby guardianship
arrangements for your children, you need to go to court. You must tell the court that you have
HIV, which is a potentially-debilitating illness that could cause you to be unable to care for your
minor children. You must also tell the court who you wish to name as the standby guardian. If
the court approves of the guardian, the standby guardianship will be legally recognized. You can
designate a guardian in your Will to make plans for the care of your children after you die.
However, you should not rely on your Will to make this determination because it is not legally
binding on the court. While the court would view the designation as strong evidence of your
intention, it‘s possible that the court would make a guardianship decision different from the one
you wanted. In most cases a parent should make formal guardianship arrangements in addition to
designating a guardian in the Will. Parents can also arrange for future care of their children
through adoption. With adoption, the biological parents give up all of their legal rights to their
children.
The adoptive parents take full parental rights and obligations, which are legally recognized and
enforced. For this reason, many parents are reluctant to arrange for adoption of their children. An
adoption decree would terminate the biological parents‘ rights to custody and visitation. The
adoption process can be time consuming. Both biological parents, if still alive, must consent to
an adoption and the court must conduct investigations regarding the suitability of the adoptive
parents. If you are living with a potentially-debilitating illness like HIV, it‘s wise to make formal
arrangements for the future care of your children as soon as possible. A parent‘s failure to make
these arrangements will result in the state having to make decisions about the future care of the
children in the event of the parent‘s incapacity or death.
Unfortunately, it‘s possible that a state decision, though well-intentioned, could go against a
parent‘s wishes or cause unintended confusion and disruption to the child. Look into the pros and
cons of the various methods. It may help to talk to a social worker or counselor about the
emotions and concerns that these issues bring up. In order to save your family, your children and
yourself difficult decisions during an acute illness, it is best to make your wishes known
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concerning your children‘s care sooner rather than later. If you have HIV, you have higher risks
than most other people. You risk having times when you are too ill to work or manage your own
affairs. You risk dying younger than others of your own age. If you do not make clear statements
in advance about the sorts of health care you want to receive, what you would like done with
your belongings, and whom you would like to take care of your business, your personal affairs,
and your children, chances are your wishes will not be honoured. Get help. You need to know
what you want to accomplish, but to be effective you should get help from a professional, usually
a lawyer, to sign the right documents in the right way.
Each country has different rules about what can be done, and each country has different rules
about how documents have to be signed in order to be valid. If you do not have, or cannot afford
a lawyer, there are plenty of ways to get help. Many AIDS service organizations (ASOs) have
legal staffs trained to help you or to get you in touch with free lawyers. Each country has rules
about who will inherit your property if you do not have a will. If your wishes differ from the
state's rules, you almost certainly need a will. If you have children and you want to name the
person who will be their guardian after your death, you also probably need a will.
In a will, you can give different items of property to different people or organizations. You can
name trustees to take care of property until someone is old enough to receive it. You can name
the guardian for your children. You can name the person who will collect and distribute your
property after your death (your "executor"). You can also state how you want your funeral and
burial conducted. Medical directives, sometimes called a living will, are your statement of what
kind of medical care you would like to receive. At times when you are unable to state yourself
what you want done, doctors can look at the document to understand your wishes. Some people
do not want to receive any care that will prolong their lives if they are in a permanent coma, have
lost most of their mental functions, or will die anyway in a short period of time. Some people
object to certain types of treatment or want maximum pain relief. Others want extraordinary
measures taken to keep them alive, or to allow them to see loved ones before they die. All of
these wishes can be put in medical directives. You can talk to your doctor about what kinds of
situations you might face and try to get an idea of what you would like to be done. The best way
to insure your wishes are carried out is to sign medical directives. A clear statement in writing
will be given a lot more weight than any comment you may have made to a friend or even to a
doctor or nurse.
A health proxy, sometimes called a medical power of attorney, is a document you can use to
name someone to make medical decisions for you when you are unable to make decisions
yourself. It is often combined with medical directives, because you may have a clear idea what
you want in some situations but may want someone you trust to step in if you face a situation
you did not expect. A health proxy can also be used to say who should have first priority to visit
you in the hospital, and who you want to be able to get medical information about you from your
doctors. A power of attorney is a document that names someone to act as your agent to take care
of many different sorts of business while you are alive. The power you grant to that person, who
does not have to be an attorney, can be very broad or very narrow. You can name someone to act
on your behalf for almost all your affairs, or only in specific areas like insurance or managing
your bank accounts.
The power you grant will be good only during your life. You can give the person power to act
immediately, or you can say that the agent cannot exercise the power until a doctor says you are
unable to act for yourself. The power of attorney can be very useful if you become too sick to
manage your own affairs. A court may appoint a guardian if you become mentally incompetent
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or otherwise unable to make your own decisions. In some cases you can sign a document that
specifies whom you would like the court to appoint. This may be important if you fear that a
court might appoint a family member to manage your affairs who you do not think would be the
right choice.Even though it is difficult to think about serious illness and death when you are
feeling well, all HIV+ people should make arrangements for the future by completing documents
that express their wishes. Making plans for the future while you are healthy and clear-headed
will help you keep control over your own life and protect your loved ones.
HIV AND LONG TREKS
Many of the-approved HIV drugs have fairly easy dosing schedules. Compared to the ―old days‖
when people took handfuls of pills three and four times a day, some people are now fortunate
enough to be able to take one or two pills just once or twice a day. Whether you are taking one
pill or many, it is still important to stick to your assigned dosing schedule at home or away.
Travelling with your HIV drugs – and staying on your schedule – can seem a bit daunting at first,
but HIV should not "ground" anyone who needs to travel for work or wants to see old friends or
new places. And once you get the hang of it, it is really quite easy to manage your meds while
you are on the road. It is one thing if you forget your socks, or your shaving kit, or even your
address book. You can replace those items when you reach your destination or you can get along
without them. You cannot get along without your medications, not even for a day, so pack them
first – and pack them carefully. Count out your pills for how long you will be away and transfer
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them to appropriate containers. It's wise to take a two-day backup supply of your HIV drugs with
you.
At home you may use a subdivided seven-day plastic pillbox to hold all your drugs, but for travel
it is often more convenient to carry your pills in something smaller, like relabelled film canisters,
sturdy, resealable plastic bags, or even a pocket-sized plastic tackle box. However, if you are
travelling internationally or anywhere by plane, you should carry your meds in their original
bottles clearly marked with the prescribing information so that security or customs will not give
you too much trouble. Pack your pills in a carry-on bag – and nowhere else.There is no guarantee
that your flight will depart on time or arrive on time or that checked baggage will be waiting for
you at your destination. If you carry your pills on board, you can take any doses you need while
on the plane and you will be prepared to take additional doses later if there is any sort of travel
delay. The airline may not be able to keep to its posted schedule, but you will be able to keep to
your dosing schedule and that's the important thing.
Food and Water
The HIV drug regimen you are on may impose dietary restrictions: certain pills should be taken
on an empty stomach, others must be taken with a meal or snack, and all of them should be taken
on schedule. Not all airlines offer food on flights these days, and even if they do, there is no way
of knowing when you will get fed on an airplane, or whether the meal will be anything you want
to eat. It‘s best to carry food with you if you need to eat when you take your medicine. The same
is true for water. If you are driving or taking a bus or train, you should bring your own. However,
with some of the latest airport restrictions you may have to ask for water rather than take it on
board with you. Asking for water as soon as you board the plane is a good plan. If you have ever
flown across the country, you may have marvelled at the time it takes a pack of flight attendants
to get down the aisles of a 747 with a three-ounce beverage for each passenger. By the time your
mouth turns to dust and all 32 of your pearly whites have put on their wool socks, you may as
well forget trying to swallow even a single pill, unless you have had the good sense to ask for
water in advance! Beyond that, it's good to drink plenty of fluids because flying is dehydrating.
To varying degrees, dehydration affects all passengers on long flights, and HIV+ people need to
be especially careful that they do not allow themselves to get dehydrated. So take every
opportunity to get a beverage and make a point of drinking throughout the flight, not simply
when you feel thirsty. Adjust your dosing schedule according to the number of time zones you
cross. This sounds tricky, but it's actually quite simple. Do a little research about your
destination. If you are going to another country, check if there are restrictions about HIV+
visitors or travelling with medications. You may also want to take a set of written prescriptions.
If you travel to fragile countries; you may be at a greater risk of getting cryptosporidiosis (an
infection caused by a parasite). Foods and drinks, in particular, raw fruits and vegetables, tap
water or ice made from tap water, unpasteurized milk or dairy products, and items purchased
from street vendors may be contaminated. It is best to drink filtered or boiled water. Talk with
your health care provider about other precautions you may want to take when you travel abroad,
especially in vulnerable countries (i.e. getting vaccines, bringing antibiotics). It is relatively easy
to stick to your daily schedule of pill-taking when you are at home. You are in your usual place,
your pills are in their usual place, and your routine is a familiar one.
It is not so easy to remain fully compliant with your HIV regimen when you travel, especially
when you travel to an unfamiliar destination. To guard against missing any of your doses, or
leaving your medications behind, it helps to travel with fluorescent Post-It notes. Stick them on
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the bathroom mirror, on the dresser top, on your suitcase, on your car keys, on your hotel or
motel room key. Those flashes of bright colour will remind you to take every dose of every one
of your medications every day and they will remind you to take your pills with you when you
leave.Emergencies may make it hard for you to get and take your HIV medications on time. To
avoid missing any doses, you should always have a 10 to 14-day supply of medications with you
at all times. Also, natural disasters can affect air and water quality, which can be hard on people
with HIV/AIDS. Make sure you adhere to safe food and water guidelines. Stock up on bottled
water, non-perishable food (such as canned food), and regular first aid supplies before facing an
emergency. In the event of an outbreak or epidemic, such as the flu, ask your doctor if you need
to take special precautions.While planning ahead how to stick to your regimen may seem like a
hassle, it will make it easier when you are on the road. Even if you are on vacation, your pills
still need to keep working! So, don‘t leave home without them!
EMPLOYMENT AND HIV/AIDS
Most HIV treatments allow many people to live longer, healthier lives. Some people who give up
their jobs because of their illness later on feel well enough and consider returning to work.
Returning to work and feeling productive can improve your self-image and feel better about
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yourself. However, the idea of re-entering the workforce can also trigger fears and concerns.
Before you start, here are a few simple questions to help assess where a job fits into your life:
What does your health care provider think about you and a job? Hint: the answer will
involve trends in your CD4 count and viral load.
How have you tested your stamina (energy level)? If you volunteer for an organization
that you like, you might be offered a job there in future. Start with a limited schedule and
build.
Why do you want to have a job? ―I need money‖ is a good reason to job hunt, but not the
only one. Many working HIV positive people report that the structure of a job helps with
adherence to medications and maintaining a healthy lifestyle. What do you want it to do
for you?
Do you have enough support at home, or in your close circle of friends? If work makes it
more difficult to fit in some of your daily chores, will you have help from family or
friends?
How will work affect your eligibility for benefits, i.e., Social Security?
Start with an attitude check. If you expect to drag yourself to a hateful job with hateful people,
you will probably get that. If you expect to learn, expand your skills, and enjoy the benefits of
working, you will probably get that. Some considerations:
The work you enjoy is energy giving-work you dislike is energy robbing.
Talk with other HIV+ working people – ask about their jobs, their routines, their
challenges.
You might be feeling better but not well enough to return to your usual line of work.
Think about returning to school or being retrained.
Applying for a Job
Your HIV status is confidential information. You have no obligation to disclose to a prospective
or present employer. Here are the potential bumps in the road:
The application form. It may provision whether you have any medical condition that
might interfere with your job. Check that impulse to ―confess!‖ Many people work
productively for years without HIV becoming an issue. The application form is meant for
conditions that would prevent you from doing the job. Do not apply for a job you cannot
do. For all other jobs: the answer is ―no.‖
The interview. A sloppy interviewer asks: ―Tell me about any medical conditions.‖ A
reasonable interviewer asks, ―Why were you out of the workplace for five years?‖
Questions that dig for specific information about a diagnosis are not ethical. Reply that
there is no barrier for your doing the entire job. Questions about an employment gap are
scary, but you can manage. Simply say, ―I was dealing with a family health problem.‖
The pre-employment health survey that asks to list all medications. Take the form to
your doctor and ask him or her to complete it. Encourage your doctor to write something
like, ―(Your name) is under my care and takes no prescription medications that would
interfere with her fulfilling the essential functions of this job.‖ Do not list all your
medications. They are none of the employer‘s business.
The pre-employment physical. If your new job requires a pre-employment physical or
lab test, it is probably because the employer is trying to find out if you use street drugs.
An HIV test would require your written consent and be a pointless expense. Talk with
your pharmacist before you have the physical. Ask whether any of your HIV drugs would
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yield a false positive drug test. If so, ask for the name of an alternate test. Tell the tester
that you need the alternate test for a valid result. Do not disclose the medication or your
diagnosis.
Signing up for employee benefits. If you find a job with benefits, do not lie on
application forms for health, life, or disability insurance. That is called insurance fraud. If
you find a direct question about HIV or other diagnosis questions, ask how your privacy
is protected. Turn in the form when you get a satisfactory answer.
Once you find a job, remember that you were hired for your skills. Whatever you believe about
disclosing your HIV status at work, keep the focus on your performance. Many HIV+ people
who want to disclose at work keep a lid on the information for a few months. That gives you
time to figure out how you will be treated if you do disclose. There are no automatic triggers for
disclosing your HIV status at work. You are not required to disclose at work, even if:
You are bleeding.
You need a reasonable accommodation.
Side effects made you late for work.
You are up for a promotion.
You need leave time to adjust to new medications.
Surprised? Here are the disclosure rules.
1. You do not have to disclose.
2. A supervisor or manager is bound to keep your information private. But that is not a
guarantee that he or she will obey.
3. The HR director, a shop steward, or the company officer in charge of employee relations
must by ethics keep your diagnosis private. But not everyone in those roles follows the
rules.
4. If you tell a co-worker, you might as well post the information on the company bulletin
board. Tell all co-workers or none.
You can do a lot to prevent HIV discrimination at work by learning your own rights and
responsibilities. Here are some tips for employees with HIV:
Requesting for a reasonable accommodation
If side effects or symptoms interfere with work, you might ask for changes in your working
conditions that would allow you to continue doing a good job. Suppose your medication makes
you nauseated in the morning. Suppose your job could be done just as well if you came in an
hour later and stayed an hour later. A change like that is called a ―reasonable accommodation‖
and there‘s a right way to ask for one. Think like an employer: what documentation and attitude
would you want to see?
Name the specific functional limitation you want your employer to accommodate, such as
fatigue.
Be specific about the change you need (rest breaks every 90 minutes).
Back up your request with a physician‘s note that supports the functional limitation – but
doesn‘t state the diagnosis!
Make it clear that you understand the purpose of the accommodation: you still have to be
able to do the whole job, even if you have to work longer hours.
Give the request to the person who arranges reasonable accommodation for all other
conditions. Usually that person is not your supervisor. It may be the company nurse, HR
(human resources) representative, shop steward, or an officer of the company.
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If you cannot do the whole job even with the accommodation, you need to think about
short-term leave.
Facing serious diarrhea for more than two hours when you get up in the morning
The diarrhea may be an adjustment to new HIV drugs. Other than getting up two hours earlier,
you could:
Ask for an accommodation (later arrival time) until you and your physician can resolve
the diarrhea. Back up your request with a physician‘s note.
Offer to change your shift to start and end two hours later. Sometimes this is a benefit to
an employer with customers in other time zones.
Advise your supervisor that you have a new medication and will need frequent bathroom
breaks while you adjust.
Raising a complaint against discrimination
Start with your own supervisor, who is responsible for stopping discriminatory behavior. No
results? Go to the Human Resource Manager/Administrator or the person responsible for
employee relations. No results? Go to the company Director/Manager, in writing. No results? Go
to any other relevant agent like police. Document your claims and responses.
Injured and bleeding and someone is trying to help
Everyone should be using universal precautions by now. People administering first aid can
respond to you safely if they use latex gloves and assume that you are infectious for all blood
borne diseases. If you know your employer hasn‘t provided first aid training for a long time, be a
pest for updated first aid training at work. You have your rights as an HIV+ person at work:
Taking Care of Yourself at Work
Keep track of all of your performance reviews. (You will need them if someone learns
your HIV status and suddenly begins giving you poor reviews.)
Think very carefully before disclosing your HIV status at work. Have realistic
expectations about the possible outcome.
Refuse to discuss other employees‘ medical conditions.
Focus on doing a great job.
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LOSING A LOVED ONE, DEALING WITH DEATH, LOSS & GRIEF
Dealing with death is a life experience that no one wants to face. Life can often seem like
swimming in the ocean during high tide. Even if we know how to swim and jump over the big
waves at just the right time, when we least expect it-wham! We are broadsided, and find
ourselves spinning and bouncing off the bottom of the ocean with a mouth full of sand. If we
fight, it takes longer to get to the surface.
But if we float with the current, we come right to the top. Floating when we are frightened is
difficult. It takes trust and concentration.
Dealing with death of a loved one is similar. In order to cope, it takes trust. Death is nearly
always accompanied by questions - especially "why." Whether we are facing our own death, or
death of someone we love, we want answers. Why is this happening? What did I do to deserve
this? Is there life after death? The sooner we learn to float - to trust - the easier it is to discover
the answers we are seeking. When dealing with death, the solution is the same whether death is
our own or that of a loved one.As hard as it is to accept, we must understand that death is part of
our life. It is the only thing in life that comes with 100% guarantee. It is helpful to realize that
while our bodies are mortal, all human beings are eternal - our soul and spirit will never die. Our
spirits - the essence of who we are - will live forever!
Dealing with Death - No greater Love
Dealing with death was not a problem for Adam and Eve-the first man and woman who ever
lived. However, once they sinned against God, things changed. Dying was a result of Adam's sin
of disobedience. We may think of death as final, but there is no end in the plan of God. We are
eternal beings in His sight. Have you ever wondered why, even though your body might be
aging, you do not feel "older" inside? It is because your spirit is eternal.
The scriptures say that God has placed eternity in our hearts. God desires for us to spend eternity
with Him, yet He has left that choice up to us. God has made all the provisions for us to be with
Him forever. He has no greater love than His love for us. Dealing with death is largely
influenced by what we think of Jesus Christ. It also affects where we will spend eternity. In His
infinite love, God sent His Son Jesus to die for us. When we believe in Jesus Christ who died as
a payment for our sins, we are guaranteed eternal life with Him forever. If you are a child of
God, dying is a promotion. Do you want to be with God forever? Do you understand that the
only other option is to be separated from Him forever? Jesus said, "…I am the resurrection and
the life. He who believes in me will live, even though he dies; and whoever lives and believes in
me will never die. Do you believe this?‖ How we respond to the gift of Jesus Christ will
determine where we spend eternity.
God the Father loves all His creation and He waits on high to bless and redeem us. Precious in
the sight of the LORD is the death of his saints. If we know Christ as our personal Savior, we
need not fear dying. As for those we love, it becomes our responsibility as believers to pray for
the salvation of those who do not know Him. For those who do, death is a celebration - a
homecoming! As we begin to think of ourselves as eternal beings, the realization that there is a
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future will help us cope with the present circumstances. We begin to ask specific questions
concerning eternity. We will be separated from our earthly body and separated from loved ones?
Will we see them again? How do we define separation? How do we deal with separation in life
and in death? God has a plan for us here on earth. God has a plan for eternity - He reveals it to us
through death.
Losing someone or something you love or care deeply about is very painful. You may experience
all kinds of difficult emotions and it may feel like the pain and sadness you are experiencing will
never let up. These are normal reactions to a significant loss. But while there is no right or wrong
way to grieve, there are healthy ways to cope with the pain that, in time, can renew and permit
you to move on.
Grief
Grief is a natural response to loss. It is the emotional suffering you feel when something or
someone you love is taken away. The more significant the loss, the more intense the grief will
be. However, even subtle losses can lead to grief. For example, you might experience grief after
moving away from home, graduating from college, changing jobs, selling your family home, or
retiring from a career you loved. You may associate grief with the death of a loved one—which
is often the cause of the most intense type of grief—but any loss can cause grief, including:
Being diagnosed with HIV/AIDS
Death of a pet
Loss of financial stability
Loss of a cherished dream
A miscarriage
A loved one‘s serious illness
Retirement
Loss of a friendship
Losing a job
Loss of safety after a trauma
Divorce or relationship breakup
Selling the family home
Everyone grieves differently, grieving is a personal and highly individual experience. How you
grieve depends on many factors, including your personality and coping style, your life
experience, your faith, and the nature of the loss. The grieving process takes time. Healing
happens gradually; it cannot be forced or hurried – and there is no “normal” timetable for
grieving. Some people start to feel better in weeks or months. For others, the grieving process is
measured in years. Whatever your grief experience, it is important to be patient with yourself and
allow the process to naturally unfold.
Myths and Facts about Grief
MYTH: The pain will go away faster if you ignore it.
Fact: Trying to ignore your pain or keep it from surfacing will only make it worse in the long
run. For real healing it is necessary to face your grief and actively deal with it.
MYTH: It’s important to be “be strong” in the face of loss.
Fact: Feeling sad, frightened, or lonely is a normal reaction to loss. Crying does not mean you
are weak. You don‘t need to ―protect‖ your family or friends by putting on a brave front.
Showing your true feelings can help them and you.
MYTH: If you don’t cry, it means you aren’t sorry about the loss.
Fact: Crying is a normal response to sadness, but it‘s not the only one. Those who don‘t cry may
feel the pain just as deeply as others. They may simply have other ways of showing it.
MYTH: Grief should last about a year.
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Fact: There is no right or wrong time frame for grieving. How long it takes can differ from
person to person.
Stages of grief
The five stages of grief are based on the feelings of a patient facing terminal illness; do not
generalize them to other types of negative life changes and losses, such as the death of a loved
one or a break-up.
The five stages of grief:
Denial: ―This cannot be happening to me.‖
Anger: ―Why is this happening? Who is to blame?‖
Bargaining: ―Make this not happen, and in return I will ____.‖
Depression: ―I‘m too sad to do anything.‖
Acceptance: ―I‘m at peace with what happened.‖
If you are experiencing any of these emotions following a loss, it may help to know that your
reaction is natural and that you will heal in time. However, not everyone who grieves goes
through all of these stages – and that‘s okay. Contrary to popular belief, you do not have to go
through each stage in order to heal. In fact, some people resolve their grief without going
through any of these stages. And if you do go through these stages of grief, you probably won‘t
experience them in a neat, sequential order, so don‘t worry about what you ―should‖ be feeling
or which stage you are supposed to be in. These stages should not serve as a rigid framework to
everyone who mourns. The five stages of grief are never meant to help tuck messy emotions into
neat packages. They are responses to loss that many people have, but there is not a typical
response to loss, as there is no typical loss. Our grieving is as individual as our lives.‖
Grief can be a roller coaster
Instead of a series of stages, we might also think of the grieving process as a roller coaster, full
of ups and downs, highs and lows. Like many roller coasters, the ride tends to be rougher in the
beginning; the lows may be deeper and longer. The difficult periods should become less intense
and shorter as time goes by, but it takes time to work through a loss. Even years after a loss,
especially at special events such as a family wedding or the birth of a child, we may still
experience a strong sense of grief.
Common symptoms of grief
While loss affects people in different ways, many experience the following symptoms when
they‘re grieving. Just remember that almost anything that you experience in the early stages of
grief is normal – including feeling like you‘re going crazy, feeling like you‘re in a bad dream, or
questioning your religious beliefs.
Shock and disbelief – Right after a loss, it can be hard to accept what happened. You
may feel numb, have trouble believing that the loss really happened, or even deny the
truth. If someone you love has died, you may keep expecting him or her to show up, even
though you know he or she is gone.
Sadness – Profound sadness is probably the most universally experienced symptom of
grief. You may have feelings of emptiness, despair, yearning, or deep loneliness. You
may also cry a lot or feel emotionally unstable.
Guilt – You may regret or feel guilty about things you did or didn‘t say or do. You may
also feel guilty about certain feelings (e.g. feeling relieved when the person died after a
long, difficult illness). After a death, you may even feel guilty for not doing something to
prevent the death, even if there was nothing more you could have done.
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Anger – Even if the loss was nobody‘s fault, you may feel angry and resentful. If you
lost a loved one, you may be angry with yourself, God, the doctors, or even the person
who died for abandoning you. You may feel the need to blame someone for the injustice
that was done to you.
Fear – A significant loss can trigger a host of worries and fears. You may feel anxious,
helpless, or insecure. You may even have panic attacks. The death of a loved one can
trigger fears about your own mortality, of facing life without that person, or the
responsibilities you now face alone.
Physical symptoms – We often think of grief as a strictly emotional process, but grief
often involves physical problems, including fatigue, nausea, lowered immunity, weight
loss or weight gain, aches and pains, and insomnia.
Coping with grief and loss tip 1: Get support
The single most important factor in healing from loss is having the support of other people. Even
if you are not comfortable talking about your feelings under normal circumstances, it‘s important
to express them when you are grieving. Sharing your loss makes the burden of grief easier to
carry. Wherever the support comes from, accept it and do not grieve alone. Connecting to others
will help you heal. Finding support after a loss, turn to friends and family members– Now is the
time to lean on the people who care about you, even if you take pride in being strong and selfsufficient. Draw your loved ones close, rather than avoiding them, and accept the assistance that
is offered. Often times, people want to help but don‘t know how, so tell them what you need –
whether it is a shoulder to cry on or help with funeral arrangements.
Draw comfort from your faith – If you follow a religious tradition, embrace the comfort its
mourning rituals can provide. Spiritual activities that are meaningful to you – such as praying,
meditating, or going to church – can offer solace. If you are questioning your faith in the wake of
the loss, talk to a clergy member or others in your religious community. Join a support group –
Grief can feel very lonely, even when you have loved ones around. Sharing your sorrow with
others who have experienced similar losses can help. To find a bereavement support group in
your area, contact local hospitals, hospices, funeral homes, and counseling centers. Then try
talking to a therapist or grief counselor– If your grief feels like too much to bear, call a mental
health professional with experience in grief counseling. An experienced therapist can help you
work through intense emotions and overcome obstacles to your grieving.
Coping with grief and loss tip 2: Take care of yourself
When you are grieving, it is more important than ever to take care of yourself. The stress of a
major loss can quickly deplete your energy and emotional reserves. Looking after your physical
and emotional needs will help you get through this difficult time. You can try to suppress your
grief, but you cannot avoid it forever. In order to heal, you have to acknowledge the pain. Trying
to avoid feelings of sadness and loss only prolongs the grieving process. Unresolved grief can
also lead to complications such as depression, anxiety, substance abuse, and health problems.
Express your feelings in a tangible or creative way. Write about your loss in a journal. If you
have lost a loved one, write a letter saying the things you never got to say; make a scrapbook or
photo album celebrating the person‘s life; or get involved in a cause or organization that was
important to him or her. The mind and body are connected. When you feel good physically, you
will also feel better emotionally. Combat stress and fatigue by getting enough sleep, eating right,
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and exercising. Do not use alcohol or drugs to numb the pain of grief or lift your mood
artificially.
Never allow anyone tell you how to feel, and do not tell yourself how to feel either. Your grief is
your own, and no one else can tell you when it is time to ―move on‖ or ―get over it.‖ Let yourself
feel whatever you feel without embarrassment or judgment. It is okay to be angry, to yell at the
heavens, to cry or not to cry. It is also okay to laugh, to find moments of joy, and to let go when
you are ready. Planning a head for grief ―triggers.‖ Anniversaries, holidays, and milestones can
reawaken memories and feelings. Get prepared for an emotional wallop, and know that it is
completely normal. If you are sharing a holiday or lifecycle event with other relatives, talk to
them ahead of time about their expectations and agree on strategies to honor the person you
loved.When grief does not go away, it is normal to feel sad, numb, or angry following a loss. But
as time passes, these emotions become less intense as you accept the loss and start to move
forward. If you are not feeling better over time, or your grief is getting worse, it may be a sign
that your grief has developed into a more serious problem, such as complicated grief or major
depression.
Complicated grief
The sadness of losing someone you love never goes away completely, but it should not remain
center stage. If the pain of the loss is so constant and severe that it keeps you from resuming your
life, you may be suffering from a condition known as complicated grief. Complicated grief is
like being stuck in an intense state of mourning. You may have trouble accepting the death long
after it has occurred or be so preoccupied with the person who died that it disrupts your daily
routine and undermines your other relationships.
Symptoms of complicated grief include:
Intense longing and yearning for the
deceased
Intrusive thoughts or images of your
loved one
Denial of the death or sense of disbelief
Imagining that your loved one is alive
Searching for the person in familiar
places
Avoiding things that remind you of your
loved one
Extreme anger or bitterness over the loss
Feeling that life is empty or meaningless
The difference between grief and depression
Distinguishing between grief and clinical depression is not always easy as they share many
symptoms, but there are ways to tell the difference. Remember, grief can be a roller coaster. It
involves a wide variety of emotions and a mix of good and bad days. Even when you‘re in the
middle of the grieving process, you will have moments of pleasure or happiness. With
depression, on the other hand, the feelings of emptiness and despair are constant.
Other symptoms that suggest depression, not just grief:
Intense, pervasive sense of guilt
Slow speech and body movements
Thoughts of suicide or a preoccupation
Inability to function at work, home,
with dying
and/or school
Feelings
of
hopelessness
or
Seeing or hearing things that aren‘t there
worthlessness
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The significance of antidepressants to grief
As a general rule, normal grief does not warrant the use of antidepressants. While medication
may relieve some of the symptoms of grief, it cannot treat the cause, which is the loss itself.
Furthermore, by numbing the pain that must be worked through eventually, antidepressants delay
the mourning process. If you recognize any of the above symptoms of complicated grief or
clinical depression, talk to a mental health professional right away. Left untreated, complicated
grief and depression can lead to significant emotional damage, life-threatening health problems,
and even suicide. But treatment can help you get better.
Contact a grief counselor or professional therapist if you:
Feel like life is not worth living
Wish you had died with your loved one
Blame yourself for the loss or for failing to prevent it
Feel numb and disconnected from others for more than a few weeks
Are having difficulty trusting others since your loss
Are unable to perform your normal daily activities
HIV/AIDS CARE
We all know that it is important to take care of ourselves. When we eat right, get good rest and
exercise, we feel better! It is easy to know this, but harder to live by it when you are HIV
positive. HIV drugs can have debilitating side effects, or simply make you tired. When you are
sick, it is often even harder to take good care of yourself than when you are well. Your family
needs you, your job needs you – and have a habit of putting yourself last. Learn to put yourself at
the front of the line. If not first, at least nearly first! You will feel better and you will have more
to give everyone else. Addiction is a serious problem in the HIV community.
Using drugs or alcohol can lead to exposure to HIV, but they can also cause severe physical,
social, emotional, and psychological problems after infection.Some people get infected directly
through addiction behaviors, such as re-using a needle that was contaminated with HIV. Some
get infected indirectly as a result of drugs or alcohol, like getting drunk, going home with a
stranger, and forgetting about safer sex. Do you have a problem with addiction? Take a quick
quiz to find out: The questions ask about drinking, but you can substitute the words ―drug use.‖
Have you ever felt you should cut down on your drinking?
Have people annoyed you by criticizing your drinking?
Have you ever felt bad or guilty about your drinking?
Have you ever had a drink first thing in the morning (an eye-opener) to steady your
nerves or get rid of a hangover?
If you answered yes to one question, you might have a problem with drug or alcohol abuse. If
you answered yes to two or more, chances are good that you are addicted to drugs or alcohol.
Some HIV positive people get defensive about their drug or alcohol use. They say it is tough
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living with a life-threatening disease, that they need something to help them relax, etc. But the
truth is that the combination of HIV and either drugs or alcohol can be deadly, either in the short
run or the long run. Why?
Overdose
HIV infection can make your body more fragile. You may lose muscle mass and/or body fat.
You may not be able to handle the same amount of drugs or alcohol you could tolerate in the old
days – and can end up in the Emergency Room or worse as a result.
Non-Adherence
If you are overusing drugs or alcohol, chances are high that you are not taking your medications
correctly. Remember, if you take your HIV drugs incorrectly, you take the risk that your virus
will mutate and become resistant to the medications. Eventually, you could end up in a situation
where none of the HIV medications will work for you.
Drug Interactions
Have not been honest with your physician about what counter drugs you use, or how much
alcohol you drink? You can end up with drug interactions. These can affect the levels of other
drugs in your system – and make normal doses of medication end up as super-high or super-low
in your system. Some combinations can even result in a heart attack or stroke.
HIV Acceleration
Some drugs, like cocaine and crack, cause HIV to progress much faster than normal. It is like
stepping on the gas pedal. There drugs also make it easier for HIV to enter your brain, causing
memory and other cognitive problems.
Risk Behaviors
When people get high or drunk, they use good judgment less often and are more likely to make
bad decisions. Such poor decisions may put you in more dangerous situations (like physical or
sexual assault), or lead to activities that put you at higher risk of spreading or getting sexually
transmitted diseases (like forgetting to practice safer sex or use clean needles).
Taking Care of Yourself
So if you know you have a problem with addiction, what do you do? There is no one right
answer for everyone. Each person is different. But there are two basic steps:
1. Talk to your doctor -Even if you are not ready to cut down or stop using drugs or
alcohol, your HIV physician needs to know what you are doing in order to be able to treat
you.
2. Consider your treatment options -Inpatient or outpatient? A mental health professional,
case manager, peer counselor, physician, nurse, or substance abuse professional can help
you sort through the options and make healthy decisions.
Many free or low cost recovery programs are available that you may not know about.
Whatever options you choose, taking the first step towards beating your addiction can be
the healthiest decision you ever make!
HIV/AIDS: Do’s And Don’ts
When dealing with a person living with HIV / AIDS (PLWHA) the bottom line is that you must
treat them, the same way out you would like it to be treated if you were infected with HIV.
DOs:
Sympathize and empathize with them.
Provide them family and social support.
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Allow them to be a part of the family as he / she was prior to disclosure of the infection.
Allow them to get back to their work as soon as he / she is physically fit, since HIV
infection does not require special rest.
Keep them engaged in some activity, as an empty mind is a devil‘s workshop.
Make efforts to reduce their stress.
Encourage them to exercise and meditate as these help prolong the life span.
Provide them with a high protein, high vitamin diet and clean potable water (boiled).
Convince them to stop all addictions such as tobacco cigarettes, alcohol or other
psychotropic / recreational drugs.
Register them with a health care facility for regular checks and follow up.
Take immediate steps to treat even minor ailments. However, it is not necessary to
disclose their HIV status to their family physician.
Dispose off blood stained tampons and bandages properly, either by flushing or by
disinfecting them first with detergent.
Advise them to use safe sex (condoms) with their sex partner, even if partner is already
HIV positive.
Pursue them at any appropriate time, to make a will.
Provide foster care to their children.
Help fight the discrimination meted out to them by hospitals, doctors and employers.
Educate family members and friends about HIV / AIDS, especially if they already know
the HIV status of the patient.
DON’TS:
Do not accuse them for getting infected, it does not help. It only worsens the situation.
Do not try to probe into when, where the person got infected.
Do not make them feel guilty.
Do not isolate them in their home / workplace.
Do not separate them from spouse or children, since they are the best support for them. It
is important for them to spend quality family time together.
Do not use gloves in feeding the infected person or to wipe off his saliva, sweat, nasal
secretions and tears.
Do not share razors, tooth brush and other sharp objects with infected person or for that
matter with anybody else.
It is not necessary to wash their clothes separately.
Do not disclose the HIV status of infected person to friends, employer and insurance
company.
Do not humiliate the infected person, his / her spouse or children
Do not scare them of suffering and death. In the terminal stage, prepare them for a
smooth journey to death.
Do not get conned by the fake claims, false cures, witch hunters and faith healers. Wait
for declaration of the noble prize for the real cure.
Do not spend the entire available money limit in the first bout of illness; it may be the
first of such illnesses in the pipeline. Make a proper planning of your spending capability.
Do not take many relatives to visit the patient admitted in hospital.
Do not test for HIV repeatedly, once the presence of infection is established it remains
there forever.
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Getting Ready to Take Care of Someone at Home
One of the best places for people with AIDS to be cared for is at home, surrounded by the people
who love them. Many people living with AIDS can lead an active life for long periods of time.
Most of the time, people with AIDS do not need to be in a hospital. Being at home is often
cheaper, more comfortable, more familiar, and gives them more control of their life. In fact,
people with AIDS-related illnesses often get better faster and with less discomfort at home
provided by their friends and loved ones. If you are taking care for someone at home, remember
that each person is different and is affected by the virus in different ways. You should get regular
updates from the person's doctor or nurse on what kind of care is needed.
Many times what is needed is not medical care, but help with the normal chores of life:
shopping, getting the mail, paying bills, cleaning the house, and so on. Also remember that AIDS
causes stress on both the person who is sick and on you the care taker. Caring for someone with
AIDS is a serious responsibility. You will have to work with the person with AIDS to decide
what needs to be done, how much you can do, and what additional help is needed. But, by rising
to the challenges of caring for someone with HIV infection and AIDS, you can share emotionally
satisfying experiences, even joy, with those you love. You can also find new strengths within
yourself. But you need to take care of yourself as well as the person with AIDS.
Every situation is different, but here are some tips to get you started.
1. First, read the available HIV/AIDS literature. Has the person living with HIV or
AIDS read and fully understood it. The information in this book is for both people with
diagnosed AIDS and people with HIV infection who are sick and need care, and even
those who are at the risk of infection. If you have trouble understanding any of the words,
see the glossary section.
2. Take a home care course, if possible. Learn the skills you need to take care of someone
at home and how to manage special situations. Your local health officer, Visiting Nurses,
government health department, or HIV/AIDS service organizations can help you find a
home care course.
3. Talk with the person you will be caring for. Ask them what they need. If you are
nervous about caring for them, say so. Ask if it is advisable for you to talk to their doctor,
nurse, social worker, case manager, other health care professional, or lawyer when you
need to. Together you can work out what is best for both of you.
4. Talk with the doctor, nurse, social worker, case manager, and other health care
workers who are also providing care. They may need the patient's permission,
sometimes in writing, to talk to you, but you need to talk to these people to find out how
you can help. Work with them and the person you are caring for to develop a plan for
who does what.
5. Get clear, written information about medicines and other care you will give. Ask what
each drug does and what side effects to look out for.
6. Ask the doctor or nurse what changes in the person's health or behavior to watch for. For
example, a cough, fever, diarrhea, or confusion may mean an infection or problem that
needs a new medicine or even putting the person in the hospital.
7. You also need to know whom to call for help or information and when to call them. Make
a list of doctors, nurses, and other people you might need to talk to quickly, their phone
numbers, and when they are available. Keep this list by the phone or hand book.
8. Talk to a lawyer or AIDS Support Organization. For some medical care or life support
decisions, you may need to be legally named as the care coordinator. If you are going to
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help file insurance claims, apply for government aid, pay bills, or handle other business
for the person with AIDS, you may also need a power of attorney. There are many
sources of help for people with AIDS, and you can help the person with AIDS get what
they are entitled to.
9. Think about joining a support group or talk to a counselor. Taking care of someone
who is sick can be hard emotionally as well as physically. Talking about it with people
with the same kind of worries helps sometimes. You can learn how other people cope and
realize that you are not alone.
10. Take care of yourself. You cannot take care of someone else if you are sick or upset.
Get the rest and exercise you need to keep going. You also need to do some things you
enjoy, such as visiting your friends and relatives, going for worship and so on. Many
AIDS service organizations can help with "despite care" and send someone to be with the
person you're caring for while you get out of the house for a while.
Helping patients feel comfortable at home
Encourage the patients, to take care of themselves as much as they can for as long as they could.
They need to be and feel as independent as possible. They need to control their own schedules,
make their own decisions, and do what they want to do as much as they are able. They should
develop their own exercise program and eating plan.
In addition to regular visits to the doctor, let them stay healthy by eating properly, sleeping
regularly, doing physical exercises, praying or meditating, or other things. If the person you are
caring for finds something that helps them, encourage them to keep it up. An exercise program
can help maintain weight and muscle tone and can make a person feel better if it is tailored to
what the person can do. Well-balanced, good-tasting meals help people feel good, give them
energy, and help their body fight illness. People with HIV infection are better off if they don't
take alcoholic drinks, smoke, or use illegal drugs. Updating yourself on new treatments and
understanding what to expect from treatments the person is taking are also important.
There are some simple things you can do to help someone with AIDS feel comfortable at home.
Respect their independence and privacy.
Give them control as much as possible. Ask to enter their room, ask permission to sit with
them, etc.; saying "Can I help you with that?" let them keep control.
Ask them what you can do to make them comfortable. Many people feel shy about asking
for help, especially help with things like using the toilet, bathing, shaving, eating, and
dressing.
Keep the home clean and looking bright and cheerful.
Let the person with AIDS stay in a room that is near a bathroom.
Leave tissues, towels, a trash basket, extra blankets, and other things the person might
need close by so these things can be reached from the bed or chair.
If the person you are caring for has to spend most of their time in bed, be sure to help them
change position often. If possible, a person with AIDS should get out of bed as often as they can.
A nurse can show you how to help someone move from bed to chair without hurting yourself or
them. This helps prevent stiff joints, bedsores, and some kinds of pneumonia. They may also
need your help to turn over or to adjust the pillows or blankets. Medication over the bed can help
the patients shift position by themselves if they are strong enough. If they are so weak they
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cannot turn over, have a health worker show you how to use a sheet to help roll the person in bed
from side to side.
Usually a person in bed needs to change position at least every 4 hours. Bedsores or other broken
skin can be serious problems for someone with AIDS. In addition to changing position in bed
often, to help keep skin healthy, put extra-soft material (sheepskin, "egg crate" foam, or water
mattresses) under the person, keep the sheets dry and free from wrinkles, and massage the back
and other parts of the body (like hips, elbows, and ankles) that press down on the bed. Report
any red or broken areas on the skin to the doctor or nurse right away. Even in bed, a person can
do simple arm, hand, leg, and foot exercises. These are usually called "range of motion"
exercises. These exercises help prevent stiff, sore points and help keep the blood moving. A
doctor, nurse, or physical therapist can show you how to help. If someone is having trouble
breathing, sitting them up may help.
Raise the head of a hospital-type bed or use extra pillows or some other soft back support. If they
have severe trouble breathing, they need to see a doctor. A good back rub can help a person relax
as well as help their circulation. A nurse, physical therapist, or book on massage can give you
some tips on how to give a good back rub. Put books, remote controls, water, tissues, and a bell
to call for help within easy reach. If the person can't get up, put a urinal or bedpan within easy
reach. You are caring for a person, not just a body; their feelings are important too. Since every
person is different, there are no rules about what to do or say, but here are some ideas that may
help.
Keep them involved in their care. Don't do everything for them or make all their
decisions. Nobody likes feeling helpless.
Have them help out around the house if they can. Everybody likes to feel useful. They
want to be part of the group, contributing what they can.
Include them in the household. Make them part of normal talk about books, TV shows,
music, what is going on in the world, and so on. Many people will want to feel involved
in the things that are happening around them. But you don't always have to talk; just
being there is sometimes enough. Just watching TV together or sitting and reading in the
same room is often comforting.
Talk about things. Sometime they may need to talk about AIDS or talk through their
own situation as a way to think out loud. Having AIDS can make a person angry,
frustrated, depressed, scared, and lonely, just like any other serious illness. Listening,
trying to understand, showing you care, and helping them work through their emotions is
a big part of home care. A support group of other people with AIDS can also be a good
place for them to talk things out. Contact any person who is a member of the Association
of People with AIDS for information about support groups in your area. If they want
professional counseling, help them get it.
Invite their friends over to visit. A little socializing can be good for everyone.
Touch them. Hug them, kiss them, pat them, and hold their hands to show that you care.
Some people may not want physical closeness, but if they do, touch is a powerful way of
saying you care.
Get out together. If they are able, go to social events, shopping, riding around, walking
around the block, or just into the park, yard, or porch to sit in the sun and breathe fresh
air.
Guarding Against Infections. People living with AIDS can get very sick from common
germs and infections. Hugging, holding hands, giving massages, and many other types of
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touching are safe for you, and needed by the person with AIDS. But you have to be
careful not to spread germs that can hurt the person you are caring for. When providing
care, you risk getting infected if you get stuck with a needle containing infected blood or
splashed with infected blood in the eyes, nose, mouth, or on open cuts or sores. If you are
taking care of a person with HIV infection, carefully follow the steps on how you can
protect the infection. Washing your hands is the single best way to kill germs. Do it
often! Wash your hands after you go to the bathroom and before you fix food.
Wash your hands again before and after feeding them, bathing them, helping them go to
the bathroom, or giving other care. Wash your hands if you sneeze or cough; touch your
nose, mouth, or genitals; handle garbage or animal litter; or clean the house. If you touch
anybody's blood, semen, urine, vaginal fluid, or faeces, wash your hands immediately. If
you are caring for more than one person, wash your hands after helping one person and
before helping the next person. Wash your hands with warm, soapy water for at least 15
seconds. Clean under your finger nails and between your fingers. If your hands get dry or
sore, put on hand cream or lotion, but keep washing your hands frequently. If you have
any cuts or sores, especially on your hands, you must take extra care not to infect the
person with AIDS or yourself.
If you have cold sores, fever blisters, or any other skin infection, don't touch the person or
their things. You could pass your infection to them. If you have to give care, cover your
sores with bandages, and wash your hands before touching the person. If the rash or sores
are on your hands, wear disposable gloves. Do not use gloves more than one time; throw
them away and get a new pair. If you have boils, impetigo, or shingles, if at all possible,
stay away from the person with AIDS until you are well. If it‘s you or anybody else
becomes sick, stay away from the person with AIDS until you're well. A person with
AIDS often can't fight off colds, flu, or other common illnesses. If you are sick and
nobody else can do what needs to be done for the person with AIDS, wear a well-fitting,
surgical-type mask that covers your mouth and nose and wash your hands before coming
near the person with AIDS.
Chickenpox can be severe for people living with HIV (especially those with AIDS) and
can even cause death. Chickenpox is caused by varicella zoster virus and spreads very
easily. This virus also causes shingles. People with shingles can spread chickenpox to
others who have never had chickenpox. If you are living with HIV and have never had
chickenpox and you are not vaccinated, avoid contact with people deemed to be having
chickenpox or shingles. People living with HIV who have already had chickenpox
probably won't get this disease again. But, just to be on the safe side, here are some
recommendations:
Check with your healthcare provider to see if you have evidence of immunity to
chickenpox and if you need the varicella (chickenpox) vaccine. Certain groups of people
living with HIV can be vaccinated for protection against chickenpox.
If you do not have evidence of immunity to chickenpox
stay away from people with chickenpox or shingles, at least until all their blisters have
completely crusted over
Stay away from people who have never had chickenpox and are not vaccinated and who
were recently exposed to someone with chickenpox or shingles. Avoid contact with the
exposed person 8 to 21 days after they were exposed. This is the time period after
exposure when someone is at risk of developing chickenpox rash. Also, it‘s possible for a
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person exposed to chickenpox or shingles to be infectious 1-2 days before the rash
develops.
If you do not have evidence of immunity to chickenpox and you are exposed to someone
with chickenpox or shingles, call your healthcare provider as soon as possible. There is a
medicine that can make the disease less severe. The medicine must be given within 4
days after the person was exposed.
Call the doctor as soon as possible if you develop symptoms of chickenpox or shingles.
There is a medicine that can be given, but it must be given very soon after the person
develops symptoms.
If you are going to care for someone living with HIV who does not have evidence of
immunity to chickenpox, check with your doctor to see if you have evidence of immunity
to chickenpox and if you need the varicella (chickenpox) vaccine.
If you have chickenpox or shingles, you should not care for someone living with HIV
who does not have evidence of immunity to chickenpox until your blisters have
completely crusted over.
If you have been exposed to someone with chickenpox or shingles, ask a healthcare
provider about protective measures you should take when caring for someone living with
HIV infection and does not have evidence of immunity to chickenpox. These measures
may include vaccination and/or avoiding contact with the person with HIV for 8-21 days
after exposure.
Protecting Yourself
A person suffering from AIDS may sometimes have infections that can make you sick. You can
protect yourself, however. Talk to the doctor or nurse to find out what germs can infect you and
other people in the house. This is very important if you have HIV infection yourself. For
example, diarrhoea can be caused by several different germs. Wear disposable gloves if you have
to clean up after or help a person with diarrhoea and wash your hands carefully after you take the
gloves off. Do not use disposable gloves more than one time. Another cause of diarrhoea is the
cryptosporidiosis parasite. It is spread from the faeces of one person or animal to another person
or animal, often by contaminated water, raw food, or food that is not cooked well enough.
Again, wash your hands after using the bathroom and before fixing food. You can check with
your local health department to see if cryptosporidiosis is in the water. If you hear that the water
in your community may have cryptosporidiosis parasites, boil your drinking water for at least 1
minute to kill the parasite, and then let the water cool before drinking. You may want to buy
bottled (distilled) water for cooking and drinking if the cryptosporidiosis parasite or other
organisms that might make a person with HIV infection sick could be in the tap water. If the
person with AIDS has a cough that lasts longer than a week, the doctor should check them for
TB. If they do have TB, then you and everybody else living in the house should be checked for
TB infection, even if you aren't coughing. If you are infected with TB germs, you can take
medicine that will prevent you from developing TB.If the person with AIDS gets yellow
jaundice (a sign of acute hepatitis) or has chronic hepatitis B infection, you and everybody else
living in the house and any people the person with AIDS has had sex with should talk to their
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doctor to see if anyone needs to take medicine to prevent hepatitis.
All children should get hepatitis B vaccine whether or not they are around a person with AIDS. If
the person with AIDS has fever blisters or cold sores (herpes simplex) around the mouth or nose,
do not kiss or touch the sores. If you have to touch the sores to help the person, wear gloves and
wash your hands carefully as soon as you take the gloves off. This is especially important if you
have eczema (allergic skin) since the herpes simplex virus can cause severe skin disease in
people with eczema. Throw the used gloves away; never use disposable gloves more than once.
Many persons with or without AIDS are infected with a virus called cytomegalovirus (CMV),
which can be spread in urine or saliva. Wash your hands after touching urine or saliva from a
person with AIDS. This is especially important for someone who may be pregnant because a
pregnant woman infected with CMV can also infect her unborn child. CMV causes birth defects
such as deafness. Remember, to protect yourself and the person with AIDS from these diseases
and others, be sure to wash your hands with soap and water before and after giving care, when
handling food, after taking gloves off, and after going to the bathroom.
Wearing gloves
Because the virus that causes AIDS is in the blood of infected persons, blood or other body fluids
(such as bloody faeces) that have blood in them could infect you. You can protect yourself by
following some simple steps. Wear gloves if you have to touch semen, vaginal fluid, cuts or
sores on the person with AIDS, or blood or body fluids that may have blood in them. Wear
gloves to give care to the mouth, rectum, or genitals of the person with AIDS. Wear gloves to
change diapers or sanitary pads or to empty bedpans or urinals. If you have any cuts, sores,
rashes, or breaks in your skin, cover them with a bandage. If the cuts or sores are on your hands,
use bandages and gloves. Wear gloves to clean up urine, faeces, or vomit to avoid all the germs,
HIV and other kinds that might be there.
There are two types of gloves you can use. Use disposable, hospital-type latex or vinyl gloves to
take care of the person with AIDS if there is any blood you might touch. Use these gloves one
time, and then throw them away. Do not use latex gloves more than one time even if they are
marked "reusable." You can buy hospital-type gloves by the box at most drug stores, along with
urinals, bedpans, and many other medical supplies. For cleaning blood or bloody fluids from
floors, bed, etc., you can use household rubber gloves, which are sold at any drug or grocery
store. These gloves can be cleaned and reused. Clean them with hot, soapy water and with a
mixture of bleach and water (about 1/4 cup bleach to 1 gallon of water). Be sure not to use
gloves that are peeling, cracked, or have holes in them. Don't use the rubber gloves to take care
of a person with AIDS; they are too thick and bulky.
To take gloves off, peel them down by turning them inside out. This will keep the wet side on the
inside, away from your skin and other people. When you take the gloves off, wash your hands
with soap and water right away. If there is a lot of blood, you can wear an apron or smock to
keep your clothes from getting bloody. (If the person is bleeding a lot or very often, rush to the
doctor or nurse immediately.) Clean up spilled blood as soon as you can. Put on gloves, wipe up
the blood with paper towels or rags, put the used paper towels or rags in plastic bags to get rid of
later, then wash the area where the blood was with a mix of bleach and water.Since HIV can be
in semen, vaginal fluid, or breast milk just as it can be in blood, you should be as careful with
these fluids as you are with blood. If you get blood, semen, vaginal fluid, breast milk, or other
body fluid that might have blood in it in your eyes, nose, or mouth, immediately pour as much
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water as possible over where you got splashed, then call the doctor, explain what happened, and
ask what else you should do.
Needles and Syringes
A person with AIDS may need needles and syringes to take medicine for diseases caused by
AIDS or for diabetes, hemophilia, or other illnesses. If you have to handle these needles and
syringes, you must be careful not to stick yourself. That is one way you could get infected with
HIV.Use a needle and syringe only one time. Do not put caps back on needles. Do not take
needles off syringes. Do not break or bend needles. If a needle falls off a syringe, use something
like tweezers or pliers to pick it up; do not use your fingers. Touch needles and syringes only by
the barrel of the syringe. Hold the sharp end away from yourself. Put the used needle and syringe
in a puncture-proof container.
The doctor, nurse, or an AIDS service organization can give you a special container. If you don't
have one, use a puncture-proof container with a plastic top, such as a coffee can.
Keep a container in any room where needles and syringes are used. Put it well out of the reach of
children or visitors, but in a place you can easily and quickly put the needle and syringe after
they are used. When the container gets nearly full, seal it and get a new container. Ask the doctor
or nurse how to get rid of the container with the used needles and syringes. If you get stuck with
a needle used on the person with AIDS, don't panic. The chances are very good (better than 99%)
that you will not be infected. However, you need to act quickly to get medical care. Put the
needle in the used needle container, then wash where you stuck yourself as soon as you can,
using warm, soapy water. Right after washing, call the doctor or the emergency room of a
hospital, no matter what time it is, explain what happened, and ask what else you should do.
Wastes
Flush all liquid waste (urine, vomit, etc.) that has blood in it down the toilet. Be careful not to
splash anything when you are pouring liquids into the toilet. Toilet paper and tissues with blood,
semen, vaginal fluid, or breast milk may also be flushed down the toilet. Paper towels, sanitary
pads and tampons, wound dressings and bandages, diapers, and other items with blood, semen,
or vaginal fluid on them that cannot be flushed should be put in plastic bags. Put the items in the
bag, then close and seal the bag. Ask the doctor, nurse, or local health department about how to
get rid of things with blood, urine, vomit, semen, vaginal fluid, or breast milk on them. If you
cannot have plastic bags handy, wrap the materials in enough newspaper to stop any leaks. Wear
gloves when handling anything with blood, semen, vaginal fluids, or breast milk on it.
Sexual intercourse
If you used to or still do have sex with a person with HIV infection, and you didn't use latex
condoms the right way every time you had sex, you could have HIV infection, too. You can talk
to your doctor or a counsellor about taking an HIV antibody test. The idea of being tested for
HIV may be scary. But, if you are infected, the sooner you find out and start getting medical
care, the better off you will be. Talk to your sexual partner about what will need to change. It is
very important that you protect yourself and your partner from transmitting HIV infection and
other sexually transmitted diseases. Talk about types of sex that don't risk HIV infection. If you
decide to have sexual intercourse (vaginal, anal, or oral), use condoms. Latex condoms can
protect you from HIV infection if they are used the right way every time for sexual intercourse.
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Extra help you can provide
Dealing with hospitals or insurance companies, filling out forms, and looking up records can be
difficult even if you are well. Many people with AIDS need help with these tasks. Getting a ride
to the doctor's office, clinic, drug store, or other places can be a problem. Don't wait to be asked,
offer to help. Keeping a diary of medical events and other information for the person you are
taking care of can help them and any other people who are helping. Be sure the person you are
caring for knows what you are writing and helps keep the diary if they can. Keeping a record of
medicine and other care for the doctor or the other people providing care can help a lot.
Make sure you know what drugs the person is taking, how often they should take them, and what
side effects to watch out for. The doctor, nurse, or pharmacist can tell you what to do. People
who are sick sometimes forget to take medicine or take too much or too little. Divided pill boxes
or a chart showing what medicines to take, when to take them, and how much of each to take can
help. If the person you are caring for has to go into the hospital, you can still help. Take a special
picture or other favorite things to the hospital. Tell the hospital staff of any special needs or
habits the person has or if you see any problems. Most of all, visit often.
Infants and children with HIV infection or AIDS need the same things as other children -- lots of
love and affection. Small children need to be held, played with, kissed, hugged, fed, and rocked
to sleep. As they grow, they need to play, have friends, and go to school, just like other kids.
Kids with HIV are still kids, and need to be treated like any other kids in the family. Kids with
AIDS need much of the same care that grown-ups with AIDS need, but there are a few extra
things to look out for. Watch for any changes in health or the way the child acts. If you notice
anything unusual for that child, let the doctor know. For a child with AIDS, little problems can
become big problems very quickly. Watch for breathing problems, fever, unusual sleepiness,
diarrhea, or changes in how much they eat. Talk to the child's doctor about what else to look for
and when to report it.
Talk to the doctor before the child gets any immunizations (including oral polio vaccine) or
booster shots. Some vaccines could make the child sick. No child with HIV or anyone in the
household should ever take oral polio vaccine. Stuffed and furry toys can hold dirt and might
hide germs that can make the child sick. Plastic and washable toys are better. If the child has any
stuffed toys, wash them in a washing machine often and keep them as clean as possible. Keep the
child away from litter boxes and sandboxes that a pet or other animal might have been in. Ask
the child's doctor what to do about pets that might be in the house. Try to keep the child from
getting infectious diseases, especially chickenpox. If the child with HIV infection gets near
somebody with chickenpox, tell the child's doctor right away. Chickenpox can kill a child with
AIDS. Bandage any cuts or scrapes quickly and completely after washing with soap and warm
water. Use gloves if the child is bleeding. Taking care of a child who is sick is very hard for
people who love that child. You will need help and emotional support. You are not alone. There
are people who can help you get through this.
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Changing symptoms
Peoplewith AIDS seem to get very sick, then get better, then get very sick, then better, and so on.
Sometimes they get sicker and sicker. You cannot always tell if they are going to live through a
particular illness or not. Such times are very rough on everyone involved. If you know what to
expect, you can deal with these rough times better. Dementia (having trouble thinking) can be a
problem for a person with AIDS.AIDS can affect the brain and cause poor memory; short
attention span; trouble moving, speaking, or thinking; less alertness; loss of interest in things;
and wide mood swings. These problems can upset the person with AIDS as well as the people
around them.
Mental problems can make it hard to follow the planned routines for care and make it difficult to
protect the person with AIDS from infections. Be prepared to recognize these problems,
understand what is happening, and talk to the doctor, nurse, social worker, or mental health
worker about what to do.
If the person you are caring for does developmental problems:
Keep important things in the same place all the time, a place that is easy to reach and
easy to see.
If you need to, remind the person you are caring for where they are and who you are.
Put a clock and a calendar where the person you are caring for can see them. Mark off the
days on the calendar. Write in what will happen each day.
Put up pictures of people who might be in the house with their names on the pictures
where the person with AIDS can see them.
Speak in short, simple sentences.
Don't be afraid to be firm. Remove things like dangerous objects from reach.
Keep the sound from TVs, radios, and other noises down so the person doesn't get
confused by unexpected sounds.
Talk to a health care worker who deals with people with dementia about how to handle
problems.
As AIDS Progresses
Here are some of the things to expect as AIDS enters its final stages and ways to try to cope.
Like other people nearing death, a person with AIDS is also near death:
Sleeps more and more and is hard to wake up. Try to talk to them and do things during
those times when they do seem alert.
Becomes confused about where they are, the time or date, or who people are. Tell them
where they are, what time and day it is, and who people are. Don't scold them for
forgetting, just tell them.
Begins to wet their pants or lose bowel control. Clean them, using gloves, and use
powder or lotion to prevent rashes. A catheter for passing urine may become necessary.
Has skin that feels cool to the touch and may turn darker on the side of their body
touching the bed as the circulation slows down. Keep them covered with warm blankets,
but do not use electric blankets because they can burn a person with poor circulation.
May have trouble seeing or hearing. Even so, never talk to other people as if the person
with AIDS cannot hear you. Always talk to the person with AIDS or anyone else in the
room as if the person with AIDS hears you.
May seem restless, pulling at the sheets on the bed or acting as if they see things that you
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do not. Stay calm, speak slowly, and reassure the person. Comfort them with gentle
reminders about who you are and where they are.
May stop eating and drinking. Wipe their mouth often with a wet cloth. Keep their lips
wet with lip moisturizer.
May almost stop urinating. If there is a catheter, it may need to be rinsed or flushed to
keep it from getting blocked. A nurse can show you how to do this.
Has noisy breathing because they can't cough up the fluids that collect in the back of their
throat. Talk to their doctor; the doctor may suggest raising the head of the bed or putting
extra pillows under their head.
Turning them on their side may also help. If they can swallow, feed them some ice chips. If they
have trouble swallowing, a cool, wet washcloth on the lips can keep their mouth and lips moist
and may satisfy their thirst. If they begin to have irregular breathing or seem to stop breathing for
a minute, call the doctor.
Hospice Care
Many people find hospice care (programs for people who are dying and their caregivers) for
adults and children a big help. Others feel that hospice care is not right for them. Hospice
services help caregivers, family, and other loved ones, as well as help the dying person deal with
the concerns and fears that may come near the end of their life. You should be able to find
hospice centres for help.
Final Arrangements
A person with AIDS, like every other adult, should have a will. This can be a difficult subject to
discuss, but a will may need to be written before there is any question of the mental competence
of the person with AIDS. You may want to be sure the person you are caring for has a will and
that you know where it is. Living wills, which specify what medical care the person with AIDS
wants or does not want, also have to be written before their mental competence could be
questioned. You, as the caregiver, may be the person asked to see that the doctors follow the
wishes of the person with AIDS. This can be a very hard experience to deal with, but is another
way of showing respect for a dying person. You may want to be sure the person you are caring
for knows that they can control their medical care through living wills.
Often, people who know that they will die soon choose to make their own funeral or memorial
arrangements.
This helps make sure that the funeral will be done the way they want it done. It also makes things
easier for those left behind. They no longer have to guess what their friend or loved one would
have wanted. You may be asked to help the person with AIDS plan the funeral, make
arrangements with the funeral home, and select a cemetery plot or mausoleum. You may be able
to help the person with AIDS decide how they wish to be buried or if they want to be cremated.
After death, there will still be things to do. Programs that have been providing help, such as
clinical follow-ups, will have to be officially informed of the death. Some money already sent or
received may have to be returned. The will may name you, a relative, or another person as the
one to handle these tasks.
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Dying at Home
Whether or not to die at home is a big decision, but it may not have to be made right away. As
the health of the person with AIDS changes, you and they may change your minds several times.
However, it is something you should talk about with the person with AIDS ahead of time. Plans
should be made; legal papers may need to be signed. What the dying person wants and needs, the
needs and abilities of the caregivers and other loved ones, the advice of the doctors and other
medical professionals, the advice of clergy or other spiritual leaders, may all need to be
considered in deciding what is best.
Consideration must be given to everyone living in the home.
Small children and others may not be ready to cope with death in their home. Others in the home
may prefer to face the final moments of the person with AIDS in familiar surroundings. Just be
sure the person with AIDS knows that they will not die alone, that the people they love will try to
be with them, wherever they choose to die. You also should get help to deal with your own grief
after the death.
Extra help for You
Taking care of someone who is very sick is hard. It wears you down physically and emotionally
and creates stress. You can get very angry watching a person you love get sicker and sicker no
matter how hard you work or how much you care. You have to do something with this anger.
Many people can talk out their anger with other people who have the same problems or with
counsellors, ministers, rabbis, friends, family, or health workers.Many AIDS service
organizations can help you find people to talk to. Do not try to be the only person taking care of
someone with AIDS. You need some time for yourself. The sicker the person you are taking care
of becomes, the more important this is. If you try to do everything lonely, you will wear yourself
out and not be able to go on. You are not alone. Other people have done this before. Learn from
them.
AIDS, STIGMA & DISCRIMINATION
AIDS-related stigma and discrimination refers to prejudice, negative attitudes, abuse and
maltreatment directed at people living with HIV and AIDS. The consequences of stigma and
discrimination are wide-ranging: being shunned by family, peers and the wider community, poor
treatment in healthcare and education settings, an erosion of rights, psychological damage, and a
negative effect on the success of HIV testing and treatment. People with HIV enjoy full lives and
there are very few things that you cannot do just because you have HIV. Crucially, most people
with HIV find that they are loved, accepted and supported by those close to them. But we do not
live in a perfect world. People with HIV do still come across stigma, prejudice and
discrimination. This can often be the worst part of living with HIV. It is worth knowing that
stigma and discrimination are taken seriously by the organisations that work for the rights and
wellbeing of people with HIV.
To deal with stigma and discrimination, it can be helpful to understand what causes them, to
work out ways of responding to them, and to find out where you can go for help and support.
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What is stigma?
Stigma
means
different
things
to
different
people:
“Theshameordisgraceattachedtosomethingregardedassociallyunacceptable.” There may be a
feeling of ‗us and them‘. People who are stigmatised are marked out as being different and are
blamed for that difference. HIV is an infection which many people have fears, prejudices or
negative attitudes about. Stigma can result in people with HIV being insulted, rejected, gossiped
about and excluded from social activities. Fear of this happening can lead to people with HIV
being nervous about telling others that they have HIV or avoiding contact with other people.
They may end up suffering silently instead of getting the help they need.
Stigma can also result in people with HIV believing the things that other people say about HIV.
For example, they may think it‘s true that HIV is a death sentence or that most people with HIV
are immoral or irresponsible. Stigma is often attached to things people are afraid of. Ever since
the advent of AIDS in the early 1980s, people with HIV are relentlessly stigmatised. There are a
number of reasons for this:
HIV is a serious, life-threatening illness. There is a long history of illnesses being
stigmatised– cancer and tuberculosis are two other examples.
People who do not understand how HIV is transmitted may be afraid of ‗catching‘ it
through social contact.
Some people have strong views about sexual behaviour. They may think that there are
situations in which sex is wrong or that certain people should not behave in particular
ways.
The way people think about HIV depends on the way they think about the social groups
that are most affected by HIV.
Some people already have negative feelings about women, gay men, immigrants, black
people, drug users and others.
Stigma leads to people not being treated with dignity and respect.
Discrimination
While stigma is sometimes hard to pin down (it may be found in people‘s attitudes or beliefs),
discrimination is a little easier to describe. It‘s about actual behaviour. Discrimination means
treating one person differently from another in a way that is unfair – for example, treating one
person less favourably simply because he or she has HIV. Here are some examples of things
which would normally lead to discrimination:
A dental surgery that refuses to register people with HIV as patients.
A company which pays a lower salary to employees with HIV.
A mandatory HIV test before getting a visa to a specific country.
All people with HIV need to be treated fairly, in the same way as people who are discriminated
against because of their race, sex, age, sexual orientation or religion. For the purposes of these
perceptions, people with diagnosed HIV are defined as having a ‗disability‘. Some people with
HIV do not feel disabled and prefer not to be described in this way.
Myths and facts
When thinking about stigma and discrimination, a good place to start might be to consider how
irrational and wrong they are. Stigma and discrimination are usually based on ignorance and
prejudice. There are some common misconceptions about HIV, and it is worth reminding that
these views are factually incorrect. In fact, HIV is difficult to catch. It cannot be picked up
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during day-to-day contact and good hygiene practices are enough to protect healthcare workers.
You can prevent passing on HIV to sexual partners by using condoms. Mother-to-child
transmission of HIV can be prevented in nearly all cases with the right treatment and care.
HIV is not fatal apart from AIDS and it takes a number of steps for one infected with HIV to
develop AIDS. And HIV/AIDS treatment is highly effective. Most people who receive HIV
treatment at the right time, take it as prescribed, and look after their health always live longer.
Having AIDS is no longer a death sentence as it used to be. HIV treatment is highly costeffective and enables people to live full and productive lives. Without treatment, people with
HIV eventually become extremely ill. They then need medical care that is much more expensive
than HIV drugs.Being diagnosed with HIV may change your life. Some people with HIV
experience health problems, loneliness, exclusion, poverty or unhappiness. All too often, such
experiences are related to the discrimination that people with HIV experience from others, the
fear of being rejected, or because they blame themselves for the situation they are in. But in time,
many HIV-positive people maintain and form new close relationships, have the support of their
families, have children without putting others at risk of infection, have fulfilling love and sex
lives, maintain and develop careers, and make plans for the future.
Stigma is one of the reasons that some people end up having quite negative feelings about
themselves and about having HIV. In society, a lot of negative and inaccurate ideas are spread
about HIV. It can be difficult for anybody, including people with HIV, to ignore all these ideas
and not be influenced by them. Before you found out that you have HIV, perhaps you looked
upon people with HIV in a rather negative way yourself. Or perhaps HIV was not a topic that
you had thought too much about. But without realising it, you may have taken on board some of
those inaccurate ideas. When you find out that you have HIV, it can be difficult to shake these
ideas off. For example, some people with HIV believe that they deserved to get it, that they are
not worth looking after, or that having HIV is a death sentence. If you feel this way, it‘s
important to question and challenge these thoughts and feelings. HIV support organisations can
help you do this. If you think carefully about all the things you have ever heard about HIV and
then compare that with what you know about your own life, you may find that a lot of what you
have heard was just plain wrong. Some people find it useful to meet other people with HIV and
to hear their experiences. This may give you a better idea of how people live with HIV and what
it means to them.
Connecting with others
You do not need to deal with problems on your own. Talking to someone close to you about how
you feel about HIV and its effect on your life can really help. But if you do not feel able or ready
to tell friends, family or loved ones that you have HIV or about your feelings, there is support
available from organisations which can help. Even if your family and friends are supportive, you
may find it helpful to meet other people who are living with HIV. It may be good to talk to
someone who is going through similar things to you or has been through them before.
Many HIV organisations host groups for people with HIV to meet, talk, and provide mutual
support. Some people find it helpful to dip into a group when they are feeling under pressure or
dealing with a particular problem. Others use them as a source of long-term support and feel they
are part of a positive community. Some groups are open to all people with HIV, while others are
only open to people from certain communities. Some organisations also offer courses for people
who have recently found out they have HIV or for people who want to learn more about living
well with HIV. These are also good opportunities to meet other people with HIV. ―When you are
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being told of your status, you go through those stages of feeling anger, you blame yourself, and
you feel ashamed. But as you go along to these meetings, meeting people with the same
condition, you build up your confidence.” Not everybody finds these courses and groups useful,
so do not think that there‘s something wrong with you if you try one and it does not suit you.
There is nothing to stop you trying another one, or coming back at some stage in the future.
Support groups have strict rules about confidentiality, so you should not have to worry about
people finding out that you are going to one. On the internet, you can also get support and
information from HIV-positive people. There are some specialist websites which have discussion
forums and which aim to create an online community. There are other websites which will put
you in touch with other people with HIV, either for dating or for friendship. While most of the
people you contact through these websites will be genuine, it is advisable to take care when
exchanging personal information or arranging to meet in person. ―Everybody can keep on telling
you to „think positive.‟ Being HIV-positive is not something to be positive about and you
shouldsaythat – it is what you feel. You have managed to live a full life with HIV, but to do this
it was important to acknowledge what having HIV meant to you.”
Dealing with stigma and discrimination
Experiencing stigma and discrimination can be very painful. Try not to bottle up your feelings
about these experiences. First of all, do not blame yourself. Remind yourself that stigma and
discrimination are wrong. If you can, talk to somebody close to you that you trust, or make
contact with an HIV support organisation so that you can safely talk through your experiences
and feelings. If it feels safe, and you have the confidence to do so, it may be worth speaking to
the person who has said or done something that you think is stigmatising or discriminatory. ―If I
am upset, the only way I can get relief is telling someone that is very close to me. It is best to
stay calm and open-minded when doing this. It is possible that the person did not mean any
offence or that you have misinterpreted their words or actions. If you fear stigma or
discrimination, it is sometimes possible to misinterpret quite innocent episodes. You could ask
the person why they said or did the thing that has upset you. You could then calmly explain your
point of view.
This gives the person an opportunity to put things right. But if the person‘s response is not
satisfactory, you may want to take things further. For example, if he or she works for a business
or an organisation, you could speak to someone more senior. There are often more formal ways
of challenging discrimination. This may involve using complaints procedures or the law. Going
through these processes can be emotionally draining and time-consuming, with no guarantee of a
satisfactory result. Discrimination against people with HIV is taken seriously by the government,
its agencies and organisations that work for people with HIV. Everybody with HIV needs to go
to a specialist clinic to get the best possible treatment and care. It is also important to have a GP
and from time to time you will probably have to see other health specialists.
Sometimes people with HIV experience difficulties with healthcare workers. But there are
similar rules and codes of ethics in all healthcare services, so you ought to be treated with respect
whether you are at the HIV clinic, other hospital service, GP or dentist. Professionals work to
codes of ethics to make sure that their personal prejudices do not interfere in the kind of
treatment they offer to patients. There are strict rules about the confidentiality of medical
information and medical records. Although it is normal for healthcare workers to have access to
your medical records, professionally this information is not shared with others or otherwise.
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Some medical procedures involve contact with blood and other body fluids. To avoid infection
or onward transmission, healthcare workers should follow ‗universal‘ infection control
procedures. No extra precautions are required when the healthcare workers know that their
patient has HIV. Unfortunately there are occasions when healthcare workers don‘t live up to the
standards that we expect. Sometimes it‘s a simple mistake or oversight, or ignorance, but sadly it
can be because a healthcare worker is prejudiced. If you have tried discussing the problem with
the healthcare worker concerned or with a manager and have not had a satisfactory response,
then you may want to deal with the matter in a more formal way.
In most areas, a hospice has a Patient Advice and Liaison Service Officer who should help you to
sort out the problem or, if necessary, make a complaint. You could also tell an HIV organisation
about what you have experienced –they may be able to help you make a complaint and offer
practical and emotional support. ―Some staff lack adequate knowledge and when it comes to
handling HIV it is a mess. They think just by touching your body they can get it. The standard of
care you receive should not be affected because you are making a complaint. You do not have to
tell your employer you have HIV. Having confidential medical information is part of your right
to privacy. The only situation you may need to reveal your status is on the application for Family
and Medical Leave, which must remain in a private file to which only the director of human
resources or you have access. If it is shared with anyone else and discrimination results, the
employee could sue the employer.
Before disclosing to an employer for benefits purposes, contact a benefits counselor or legal
advocate before disclosing. Most people with HIV will never experience any problems at work
because they have HIV. But stigma and discrimination can occur in the forms of breaches of
confidentiality, gossip, being left out of activities, or even losing your job after your employer
finds out you have HIV. You are entitled to recruitment, terms and conditions of employment,
the way you are treated at work, and opportunities for job development and promotion. People
with diagnosed HIV have a disability and cannot be discriminated against because of their health
status. But there are two important exceptions. Healthcare workers with HIV can be excluded
from jobs such as surgery and dentistry. Also, people with HIV can be excluded from the armed
forces. When applying for a job, you may be asked to complete an equal opportunities
monitoring form which asks if you have a disability. The form should be handled separately from
your job application and treated in confidence.
Nonetheless, you are not obliged to complete this form or answer this question. In most cases,
the employer is not permitted to ask more detailed questions about your health before making a
job offer. If an employer asks your doctor for a medical report, you need to give permission
before a report is sent. Your employer is also legally obliged to protect the confidentiality of
private information that it holds about you. Most people find that having HIV does not make any
difference to their ability to do their job at all. But if having HIV does make doing the job more
difficult, then you can ask for what‘s called a ‗reasonable adjustment‘. Unfortunately, some
personal finance products are not available to people who know they have HIV. This includes
most life insurance policies, private medical insurance, critical illness cover and income
protection.
Insurance application forms should be filled in honestly and accurately – if they are not, the
policy will not be valid and the company may refuse to pay out if a claim is made. On the other
hand, if you took out a policy before you found out that you have HIV, it may continue to be
valid. You need to check the small print of the policy, in particular the list of ‗exclusions‘. If an
insurance company asks your doctor for a medical report, you need to give permission before a
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report is sent. In terms of travel insurance, policies often exclude cover for pre-existing medical
conditions, including HIV. Nonetheless, it may be worth taking out cover just in case you have
an illness that is unrelated to HIV, have an accident, lose your luggage or have something stolen.
In addition, some specialist companies do provide cover for people with pre-existing medical
conditions, including HIV. Having HIV should not prevent you from getting a mortgage or a
pension.
It is unjust to discriminate against people with HIV in the provision of goods and services, such
as when finding housing or when using shops, restaurants and hotels. This means, for example,
that a business cannot refuse your custom or treat you less favourably because you have HIV.
Similarly, a landlord cannot refuse to let a property to you because you have HIV. This sort of
harassment is illegal, whatever its motive. In addition, if you are harassed or attacked because
you have HIV (or because of your race or sexuality), this is classed as a crime and authorities can
handle it immediately if reported. HIV sometimes gets good coverage in the media. At other
times the media uses clichés, is inaccurate and expresses prejudice. It can be annoying to find
HIV described as a ‗death sentence‘ or to see people with HIV being represented as
irresponsible.
One way of coping with stigma in the media is to ignore it. If you know that an article in a
newspaper or a programme on the TV or radio is going to upset you or make you angry, then you
do not need to read, watch or listen to it. Try and develop a strategy for dealing with inaccurate
or stigmatising media items. For example, tell yourself how poor it is that a journalist is so bad at
their job that they cannot get basic facts right. Or try reminding yourself that the stigma or
prejudice that an item reflects is simply wrong. You might want to write a letter of comment or
complaint, pointing out the item‘s faults and inaccuracies. News-based websites usually have a
response page where you can point out errors and inaccuracies. Any reputable TV or radio
station will have a department to respond to viewers‘ and listeners‘ comments and complaints,
and newspapers and magazines have a separate page for letters.
So if you do not feel confident complaining to the media yourself.
One of the biggest stigmatising things is the way the media presents those criminalisation cases.
That the whole issue is turned into innocent victim horror, you know a horrid evil character that
is going out and doing it. In engaging with the media to try and make sure that HIV is accurately
reported and that inaccuracies are challenged. Should you become the focus of media attention,
think very carefully before speaking to a journalist and consider asking an HIV agency with
experience of media work for support. There are a lot of agencies to turn to if you feel
stigmatised or have experienced discrimination. There are also organisations which can help
make your voice heard or who lead campaigns against unfair treatment of people living with
HIV. Try one if necessary.
Making a complaint
Before you lodge a complaint, it is worth thinking about what you would like to happen as a
result of your complaint. Perhaps you want an apology, an explanation or a decision to be
changed. On the other hand you might want to be sure that the same thing should not happen to
anyone else again. It is helpful to keep detailed notes about the incident you wish to complain
about. Do not be abusive or threatening – try to remain calm. Official complaint procedures can
be lengthy and can be emotionally demanding. When making a complaint, it is important to
contact the right agent.
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DRUG INTERACTIONS
In order for a drug to work properly, a person must take the correct dose so that the right amount
of drug enters the bloodstream. Before an HIV drug is approved, researchers study different
doses and choose one that is both safe and effective. The dose has to be high enough to stop HIV
from making copies of itself, but not so high that it causes a lot of side effects. All people living
with HIV who are on treatment take more than one HIV drug, even if they only take one pill.
Some pills contain more than one drug. Many HIV positive people take other types of
medications as well. Some prescription, over-the-counter, and recreational drugs, as well as
herbs, vitamins, and supplements, can cause changes in the amount of HIV drugs in your
bloodstream, even if you take the correct doses. Eating certain foods and beverages can also
change drug levels in the blood. When one drug affects the level of another drug it is called an
interaction.
Some drug interactions do not cause problems, but some interactions can be harmful. It is
important to discuss the possibility of drug interactions with your health care provider when
choosing a new HIV drug combination or when adding or removing any drug from your
regimen.
Drug Metabolism
The body metabolizes (breaks down) the drugs you take. This process involves the liver and
kidneys:
Proteins in the liver called enzymes break down the drug
The kidneys filter the drug out of the bloodstream and into the urine
The drug is removed from the body in urine or faeces
Sometimes, one drug affects the way another drug is metabolized by speeding up or slowing
down the action of liver enzymes. This can cause big changes in the blood levels of other drugs
that are broken down by the same enzyme.
Drugs That Slow Down Metabolism
Some drugs inhibit (slow down) the liver enzymes. This causes other drugs to be metabolized
and eliminated from the system more slowly, which:
Increases the amount of other drugs in the body
Increases the length of time other drugs stay in the bloodstream
This can be useful in HIV therapy. Unfortunately, increased blood levels of drugs can also cause
overdoses or increase side effects. If you are taking a drug that slows down liver enzymes, your
health care provider may need to adjust the doses of your other medications.
Drugs That Speed Up Metabolism
Some drugs induce (speed up) the action of the liver enzymes. This causes other drugs to be
metabolized and flushed out of the system more rapidly, which:
Decreases the amount of other drugs in the body
May cause other drugs to be less effective
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Some drugs used to treat HIV-related conditions speed up liver enzymes. This can be a serious
problem if it causes the HIV drugs to be metabolized too quickly. If HIV drug levels drop too
low:
HIV can make more copies of itself
Viral load can go up
Resistance can develop
HIV drugs can stop working
Some drugs speed up enzymes and get some other drugs out of the system more quickly. If you
are taking a drug that speeds up liver enzymes, your health care provider may need to increase
the doses of your other medications.
Drugs and Other Substances that May Interact with HIV Medications
There is a long list of prescription, over-the-counter, complementary, and recreational drugs that
may have significant interactions with HIV medications. Food and beverages can also change the
way HIV drugs are broken down in the body. Below are a few examples:
Birth Control Pills
Some birth control pills containing can interact with HIV drugs. This can make the pills less
effective and increase the chances of pregnancy. If your HIV drugs affect the levels of your birth
control pills, talk with your provider about switching to or adding another form of birth control.
Complementary Therapies
Many HIV+ people use complementary therapies such as vitamins or herbs. It is important to tell
your health care provider if you take any vitamins, herbs, or supplements.
Recreational Drugs and Alcohol
Interactions between ecstasy or amphetamines (crystal meth, speed) and PIs are particularly
dangerous. Alcohol affects body processes and is often responsible for drug interactions.
Combining alcohol and certain HIV drugs can put you at risk for developing pancreatitis
(inflammation of the pancreas).
Methadone
Methadone can interact with many HIV drugs. It is important to tell the health care provider
what you are taking. This way necessary adjustment can be made to insure you get enough
methadone to prevent withdrawal symptoms and enough HIV drugs to fight the virus effectively.
Other Types of Drugs That May Interact with HIV Drugs
There are certain classes of drugs to treat different medical conditions that are more likely to
interact with HIV drugs. Not all drugs in these classes cause problems. If you take any of the
following types of drugs, talk to your health care provider about the specific drugs you take and
if there are any possible interactions. Note: this is not a complete list; other classes of drugs may
also cause interactions.
Antifungal drugs
Antibiotics
Antacids
Drugs that prevent convulsions or seizures
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Drugs to treat depression
Antihistamines (allergy medications)
Drugs to control heart rhythm
Opium-based pain killers
Drugs that increase bowel activity
Sedatives (medications to calm your nerves)
Drugs to thin the blood
Drugs to treat erectile dysfunction
Drugs to treat tuberculosis
Food and medication
Any pills that you take go through your stomach. What you eat can affect how much of your
drugs get into your system. Most drugs are absorbed faster if your stomach is empty. For some
drugs, this is a good thing, but it can also cause more side effects. Some drugs need to be taken
with food so that they are broken down more slowly, or to reduce their side effects. Others
should be taken with fatty foods because they dissolve in fat and are absorbed better. Check your
drug labels and follow the food instructions carefully. If you have any questions, it is important
to ask your provider or pharmacist.
HIV+ people often have to take many different drugs.
Sometimes taking more than one medication can cause drug interactions. This can lead to the
drugs not working as well or an increased risk of side effects. Because there are so many possible
drug interactions with the HIV drugs, it is very important for you and your health care provider
to go over all your medications (including over-the-counter, prescription, street drugs, and
complimentary therapies), even if you only use them occasionally. Your health care provider
may need to adjust the doses of your drugs to avoid under- or overdosing or change the drugs
you currently take. To get the best results, it is a good idea to:
Keep a list of all your drugs and ask your health care provider to review it for possible
interactions
Give a copy of your drug list to all of your health care providers
Discuss all your medical conditions with your health care provider
Each time you are prescribed a new medication, check with your health care provider to
see if it can be combined safely with your other therapies
Review the information that comes with each medication ask for this information for
each drug that you are taking
Have all your prescriptions filled at one pharmacy
Learn about all the possible side effects of your drugs
Learn how, when, and with what to take your drugs
Do not stop or change your drugs without talking to your health care provider
Report any side effects to your provider
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DRUG RESISTANCE
The outlook for people with HIV has never been better. The right treatment and care can mean
that you have a good chance of living a long and healthy life, with a near-normal lifespan. Drug
resistance is a major problem in HIV infections. If patients do not adhere perfectly to their drug
regimen, the virus rapidly eliminates its vulnerability. Once it has evaded one drug combination,
others are less likely to work as well.However, treatment with a combination of these drugs can
reduce the amount of HIV in your blood (your viral load) to such a low level that it cannot be
detected using laboratory tests. This is called an ‗undetectable‘ level.
An undetectable viral load is the aim of HIV treatment. Having an undetectable viral load means
that your immune system is still strong and fighting off infections. Not taking your HIV
treatment properly can mean that the levels of the drugs in your blood are not high enough to
properly fight HIV. If this happens, HIV will be able to replicate. The strains of HIV that
reproduce when you are taking HIV treatment can develop resistance to the drugs you are taking.
Resistance can mean that your HIV treatment won‘t work properly. Your treatment not working
is likely to mean that your viral load will increase and your CD4 cell count, an important
indicator of the health of your immune system, will fall. This situation increases your chances of
becoming ill because of HIV and eventual death. If your viral load increases to detectable levels,
then you will need to change your HIV treatment. You may also become resistant to drugs
similar to those you are currently taking. This is called cross-resistance and the risk varies
between different classes of HIV drugs. When taken properly, HIV treatment can also lower viral
load in genital fluids to undetectable levels. This can reduce the risk of HIV transmission during
sex.
A consequence of not taking your HIV treatment properly can be that the amount of virus in your
genital fluids increases, therefore increasing the risk of passing on HIV to your sexual partner(s)
and the type of HIV which you pass on may be resistant to one or more of the drugs.
Taking your drugs properly is often called adherence. Adherence to your HIV treatment means:
Taking all the medicines that make up your HIV treatment combination in the right
quantities.
Taking your medicines at the right time. Taking your medication too late can be as bad as
not taking it at all.
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Following any instructions about food. Some medicines need to be taken with food so
they are absorbed properly, but others need to be taken on an empty stomach.
It is also important to know that some herbal and alternative medicines can interact with some
anti-HIV drugs, as can some recreational and illegal drugs. The best results of HIV treatment are
seen in people who take all or nearly all of the doses of their drugs in the right way. Modern HIV
treatment has a very powerful anti-HIV effect, but nevertheless taking fewer than 95% of your
doses correctly is associated with an increase in viral load, a fall in CD4 cell count, and an
increased risk of resistance. A wide range of factors can have an influence on how well you
adhere to your HIV treatment. These differ between people and can change over time.
This means that there‘s no single magic solution that can guarantee the best possible adherence
for everyone. Instead, it‘s important to think about the factors that are likely to affect you. If you
miss a dose, you should try and make an effort to take every dose of your medication at the right
time and in the right way. But most people taking HIV treatment occasionally forget to take a
dose of their treatment. What you should do about missed doses will depend on circumstances.
You should still take the dose if you remember within a few hours. But do not take your
medicine if it would mean taking the dose very late. It is a good idea to discuss this with your
doctor or pharmacist; as how late you can take a dose will vary, depending on the drugs you are
taking. You should not take a double dose to compensate for the one you have missed. It is
important to remember that taking doses late can be as bad as not taking them at all. If you are
regularly missing doses of your medication, or taking them late, it‘s a good idea to mention this
to your doctor. A reliable clinic should be able to offer advice and support to you. If you are
involved in decisions about starting or changing your HIV treatment, and feel comfortable about
what you have decided, then you will be more likely to take your treatment properly. Your
doctor should take time to talk with you why you need to start or change HIV treatment. You
should also be given written information to take away and read about any treatment you are
considering.Other members of the healthcare team at your clinic, particularly HIV pharmacists,
health advisers or health trainers, and nurses are also good sources of information and support
when starting or changing treatment. You can get help from a health trainer through HIV Health
Support Services. Health workers work in HIV clinics, community centres or can pay a visit in
your home and provide information, advice and support about living with HIV, treatment and
managing your condition. You can ask for a health worker at your clinic, or community.It is a
good idea to ask questions if you are unclear about anything and to keep on asking questions
until you understand. You will probably have an opportunity to think about starting treatment
over a number of weeks or even months. There‘s a good chance that your adherence will be
better if you start taking treatment when you are ready to do so. It‘s important to know, however,
that you are likely to be advised to start taking HIV treatment soon if you are ill because of HIV.
HIV treatment is also recommended for people even if they have no symptoms when their CD4
cell count falls to lower levels. If you need to change treatment because your current HIV
treatment is not controlling your viral load, it is important that you do this as soon as possible to
reduce the risk of resistance.Often people who understand the benefits of HIV treatment take
their treatment properly.
It is good to know that the amount of illness and death caused by HIV falls dramatically with
effective treatment. If you take your treatment properly, you will live a near-normal lifespan. If
you have questions or concerns about the effectiveness of HIV treatment or its possible sideeffects, it makes sense to discuss these with your HIV doctor or another member of your
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healthcare team. Mental health problems such as depression may be as a result of not taking HIV
treatment properly. Depression is quite common in people with HIV.
However, it can be successfully treated and a lot of support is available through your clinic as
well as through HIV organisations if you have emotional or mental health problems. Therefore it
is a good idea to tell your HIV doctor if you think you are depressed, particularly if this means
that you are having problems taking your treatment. Feeling isolated or alone, or having worries
about money, housing, immigration or employment, can all make it harder to take your HIV
treatment properly. These concerns may seem more pressing and important than prioritising or
taking your treatment. HIV organisations can be a good place to turn to for support if you are
facing any of these issues. Your HIV clinic may have a specialist social worker who can help, so
it‘s a good idea to tell your doctor about any problem you have. If you are starting HIV treatment
for the first time, then it‘s likely that you will be able to choose from a number of once-daily
combinations. There is even an HIV treatment that consists of just one pill, once a day. Even if
you have taken a lot of HIV drugs in the past, it‘s very unlikely that you will have to take your
treatment more than twice daily. If you have a preference for once- or twice-daily treatment you
should discuss this with your doctor.
Some people have difficulty taking large numbers of pills. However, HIV treatment for most
people consists of a few pills once or twice a day. If you have a choice, choosing the simplest
combination with the fewest pills is likely to boost your chance of taking your treatment
properly. Some HIV drugs need to be taken with food to work properly, whereas others should
be taken on an empty stomach. However, for some drugs, it does not matter if they are taken
with or without food. Some people find it difficult to take their HIV treatment on an empty
stomach because this means not eating for a certain amount of time before or after taking their
medicines. Other people prefer not to take their anti-HIV drugs with food because this can
reduce the amount of flexibility they have about the time they take their treatment. If you have a
preference or concerns about food restrictions it makes good sense to let your doctor know this
so that you can be prescribed the most appropriate treatment. Some HIV clinics have dieticians
who can make sure you are eating enough food for your medication to be absorbed properly.
Like all medication, HIV treatment can cause side-effects, and these can be a reason why people
don‘t take their treatment properly. The risk of side-effects can vary between individual drugs. It
is not inevitable that your HIV treatment will cause side-effects, and the medicines used may
generally only cause mild side-effects that either become more tolerable or go away completely
with time.
However, side-effects do happen. If you are concerned about the risk of developing a particular
side-effect, then mention this to your HIV doctor. You will then be able to discuss your
concerns, and it may be possible to choose a treatment that doesn‘t cause the side-effect you are
worried about. It also makes good sense to speak to your doctor about any side-effects that you
develop after starting treatment. It‘s nearly always possible to do something about side-effects.
Do not miss doses of your treatment in an attempt to avoid side-effects. If you develop a sideeffect, you shouldn‘t stop taking your HIV treatment without speaking to your doctor first.
Dieticians can give advice on how to minimise side-effects like nausea and diarrhoea.
To reduce the risk of potentially harmful interactions between drugs, it makes good sense to tell
your HIV doctor or pharmacist about any other medicines, supplements or drugs you are taking.
This includes medicines prescribed by another healthcare professional, as well as medicines
bought over the counter, some nutritional supplements, herbal and alternative drugs, and illegal
and recreational drugs. Sometimes people feel uncomfortable telling their healthcare team about
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drug use. Your HIV doctor is more likely to be concerned about avoiding potentially dangerous
interactions than telling you off about the use of recreational drugs. It‘s also good to know that
support and information will be available from your clinic if you are concerned about your drug
use. Simple forgetfulness is a common reason for missing doses of anti-HIV drugs. If you do
forget to take your medication do not be too hard on yourself, but do try to learn from the
experience about what it was that caused you to forget. If you are missing doses regularly, then
discuss this with your doctor. It may be possible to make your schedule easier, or to change to a
more suitable combination. Where this is not an option, talking through your concerns with your
healthcare team may provide you with the support you need to manage your treatment better.
Practicing to take doses of sweets or multivitamins for a few weeks in the same quantities, and at
the same time, as you will have to take your anti-HIV drugs regimen and taking account of any
dietary or other restrictions, helps to adhere to the actual regimen when you start it. Confusion
over which pills to take when, and what times to eat or avoid food, may be a problem when
starting a new combination.
To avoid this, your doctor or pharmacist can provide a written daily schedule with your
prescription, which you can tick off after taking your dose. Some pharmacists offer stickers for
medication containers, which have the same function. Partitioned containers that you fill once a
week or every few days with the individual daily doses are available. With some versions you
can take out a single day's dose or several if you may be away for some time. Your pharmacist
should be able to provide one of these boxes. Make sure that the box you are getting is big
enough and that you have checked with your pharmacist that all your drugs are suitable for
storing out of their original container. Some pills may deteriorate if not kept correctly.
Setting an alarm on your mobile phone or watch can serve as a useful reminder to take your pills.
Keeping spare doses of pills in your bag, jacket pocket, at work or college, at a friend‘s or in the
glove compartment of your car can mean that you have a dose available if you forget to take your
pills or are unexpectedly away from home. If you need to take your HIV treatment on an empty
stomach, try taking your pills just before you go to bed. It‘s normally necessary to have a twohour gap between eating and taking your medication, to take your pills on empty stomach. You
should then wait at least 30 minutes before eating again. If you have to take your HIV treatment
with food, it‘s useful to know that it‘s usually not necessary to eat a full meal. A bar of chocolate
or a bowl of cereal is often sufficient.
Think about how going away for a break or on holiday could impact on your adherence. This
could include the effect of travel on the times you take your medication, particularly if you are
travelling a long way involving a changed time zone. You should try and ensure that you take
your medication at the same intervals. Make sure that you take enough medication with you, as
securing more supplies might be impossible. You should also travel with your medication in
your hand luggage as this is less likely to get lost and means that your medication is close at
hand should you need to take any during your journey. If you are flying or travelling across
borders consider getting a letter from your doctor giving the name and doses of the medications
you are taking and explaining that you need to have the medication with you at all times. This
will help ensure that you are allowed to carry the medication in your hand luggage (in case the
airline is imposing any restrictions on what can be carried) and it may help you with customs
officials should you be stopped. This letter doesn‘t have to mention HIV.Breaking your routine
may also have an impact on adherence as you may be away from prompts that helped you
remember to take your medication.
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Think about what these might be and how to overcome them. Taking your medication away from
home may mean that there is an increased chance that you will have to take it with people who
do not know about your health, or who you do not want to know about it. Plan in advance how
you might manage this. Simple things such as having a bottle of water by your bed might give
you the privacy you need to take your medication. If you are going out for the night and think
that there is a chance that you may not go home before your next medication dose or doses, then
take enough medication with you to cover that period. Be aware that door staff may not be able
to recognise prescription medication and some people are asked what their anti-HIV drugs are or
have had them taken away when trying to get into some clubs. Also if you are going out and are
planning to drink alcohol or take drugs which might affect your memory, then try to plan in
advance how you might overcome this. This could involve setting an alarm on your watch or
telling a friend to remind you when it is time to take your medication. If you are concerned about
possible interactions between your HIV medications and recreational drugs then speak to your
doctor or another member of your healthcare team. They should be able to offer advice on safely
minimising interactions. Do not skip doses. If you are having on-going difficulties taking your
medication, or are worried, ask for help immediately. Staff members at your HIV clinic are there
to help, and there are other sources of support.
As already mentioned, one of the possible consequences of not taking HIV treatment properly is
that your virus will develop resistance to anti-HIV drugs. HIV reproduces itself very quickly,
making billions of new viruses every day. Because the virus often makes mistakes when copying
itself, each new generation differs slightly from the one before. These tiny differences are called
mutations. Some mutations occur in the parts of HIV which are targeted by anti-HIV drugs.
This can result in strains of HIV developing that are less easily controlled by drugs. These HIV
strains are called drug-resistant. Drug-resistant strains vary – some may be highly resistant to
anti-HIV drugs while others may be less so. When an anti-HIV drug is started, HIV that is fully
susceptible to that drug disappears rapidly and drug-resistant viruses remain. If the HIV
replication is not fully suppressed, these resistant viruses can continue to reproduce themselves
despite the drug's presence. Resistance is an important reason why HIV treatment can fail. Viral
load, which should drop when you start a new drug combination, will increase again if drugresistant HIV is able to emerge.
Taking your HIV treatment in the correct doses, at the right time, observing any food restrictions
and avoiding interactions reduces the risk of resistance from developing. Before you start HIV
treatment for the first time, or change treatment because your viral load is detectable, you should
have a resistance test. The results of a resistance test help you and your doctor to choose the
combination of drugs that is likely to be most effective against your virus. It is important to be
honest with yourself and your doctor about the way you live your life. If it is probable or likely
that you will not take your HIV treatment properly, then it is important that your doctor knows
this. This will allow your doctor to prescribe a combination of anti-HIV drugs that has a lower
risk of resistance. The aim of HIV treatment is an undetectable viral load. If you have an
undetectable viral load, your HIV cannot become resistant to the anti-HIV drugs that you are
taking. However, resistance can develop if your viral load becomes detectable and you continue
to take anti-HIV drugs. If your viral load is still detectable six months after starting HIV
treatment, or falls to undetectable levels and then becomes detectable again in two consecutive
tests, you should change HIV treatment. Changing HIV treatment promptly can reduce the risk
of drug resistance.But before you change treatment, you should have a resistance test to help
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select the most effective combination of anti-HIV drugs. If you are changing HIV treatment
because of resistance, it‘s very likely that you will need to start a new combination of drugs.
Once resistance to one anti-HIV drug has developed, this may mean that your HIV is also
resistant to other, similar anti-HIV drugs you have not yet taken. This is called cross-resistance.
Cross-resistance can affect all the currently available anti-HIV drugs to some extent. However,
cross-resistance is not inevitable if you develop resistance to one drug, and the use of resistance
tests will help you and your HIV doctor select the anti-HIV drugs that are likely to be most
effective against your virus if resistance does develop.
Resistance tests
There are blood tests that can detect whether the HIV in your body is resistant to anti-HIV drugs.
Drug resistance tests are used when a person is first diagnosed with HIV in case they have been
infected by a virus which is already resistant to one or more drugs. It is also ideal for everybody
who is about to start HIV treatment for the first time to have a resistance test. You should also
have a resistance test whenever you are changing treatment because your viral load is
detectable.Resistance tests also help to guide the choice of treatment in women who are
pregnant, and in children. Resistance tests will also be more accurate if done while you are still
taking a failing combination rather than after you have stopped it. Once you stop taking a drug,
the sensitive viruses start to grow rapidly as they are usually more ‘fit‘ than the resistant viruses.
The test may give the wrong answer as it may not be possible to detect the smaller number of
resistant viruses. There are two main methods of testing for HIV drug resistance:
Genotypic tests which look for specific mutations in HIV's genes that are known to be
linked with resistance to anti-HIV drugs.
Phenotypic tests which measure the concentration of a drug required to reduce viral
replication by a set amount. When resistance to a drug begins to develop, higher levels of
that drug will be required to stop HIV growing.
A significant proportion of people contract HIV that is already resistant to one or more anti-HIV
drugs. This can happen either through sexual transmission, through contact with infected blood
(e.g. through injecting drugs), or from an HIV-positive mother to her baby. Becoming infected
with a drug-resistant strain may limit your treatment options in the same way as developing
resistance while taking treatments does, narrowing down the range of drugs you might benefit
from. If you have a detectable viral load and drug-resistant virus, then there‘s a risk that you
could pass on a drug-resistant strain of HIV to someone else.
The reason why taking HIV treatment properly (adherence) is so important is because poor
adherence can lead to the development of resistance. This is a term doctors often use. It means
that the type of HIV you have is, or has become, resistant to some anti-HIV drugs. In other
words, the drugs don‘t work well any more. Every time HIV makes a new copy of itself, it is
slightly different.Often these differences are not important but sometimes the new copy is
different in a way that is ‗resistant‘ to the drugs you‘ve been taking. This means that it will be
able to reproduce again, even when you take the drugs. It is possible to have resistance to some
drugs even before you start HIV treatment. You may have been infected with a strain of the virus
that is already resistant to some anti-HIV drugs. If you are taking combination therapy, it is
important to make sure that enough of the drugs are in your blood all the time to do their job
properly. Missed or late doses could mean there are reduced levels of the drugs in your blood.
This could allow the virus to make more copies of itself, including drug-resistant copies. Drugresistant HIV could lead to the treatment not working, and you not being able to use the same
drug (and, sometimes, other drugs in the same class) again in the future. The next combination of
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drugs you are given might be more complicated to take, or cause more side-effects. If you are
able to take each dose of the combination therapy at the right time each day, then the
development of drug-resistant HIV is unlikely. That means the drugs will work for many years.
If you do develop resistance to some drugs, do not panic - there will still be other treatment
options available to you. There are other drugs that are effective against drug-resistant strains of
HIV. However, it is very important that these drugs are taken properly. If not, you may develop
resistance to them, and this could mean that your HIV becomes very hard to treat.
Properly using condoms are a very good way of preventing sexual transmission of HIV. If you
are already HIV-positive, you can be infected with another strain of HIV that could be drugresistant. This is called super infection. If you would like to discuss any concerns you may have
about this, such as how it might affect the sex you have, a health adviser or health trainer at your
HIV clinic or another member of your healthcare team should be able to help.
CLINICAL TRIALS
HIV spreads most commonly through unprotected sexual contact with an infected partner. It can
also spread through contact with infected blood, usually through needle sharing amongst drug
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users. Mothers can pass HIV on to their babies, though the risk of this is much lower if anti-HIV
drugs are taken during pregnancy. It is very difficult to produce a vaccine against HIV as the
surface of the virus constantly changes. So the only way to prevent infection is to avoid
contracting the virus.
The term clinical trial is used to describe many different types of research studies. There are five
main types of clinical trials:
Treatment
trials
Study new medications, new combinations of existing medications, or new types of
therapies
Prevention
trials
Look for better ways to prevent disease—sometimes with medicines, sometimes with
behavior changes
Diagnostic
trials
Test the best way to detect disease or changes within the body
Natural
History
trials
Study the natural progression of disease in the human body
Quality
of
Life
trials
Study ways to improve aspects of life for people living with illnesses
A vaccine fools your body's immune system. You are injected with a harmless version of the
bacterium or virus that usually causes the illness: it is either dead, or modified - attenuated - so
that it cannot attack your body. But your defender cells still learn what it looks like. If you ever
encounter the real thing, they will remember, and respond immediately to destroy it.
The Basic Components of Clinical Trials
The scientists and health care providers who manage clinical trials are usually called
investigators. The people who join clinical trials are usually called participants, but may be
referred to as volunteers or study subjects. ALL clinical trials are voluntary – you never have to
participate in a clinical trial unless you want to. Each clinical trial has a written plan, or study
protocol, that describes the goals of the study, how long the study will last, which people are
eligible to participate (also called inclusion and exclusion criteria), and what tests and procedures
are required of each participant.
Inclusion and exclusion criteria are the guidelines used to determine who can and cannot
participate in a specific clinical trial. Inclusion criteria are requirements that a person must meet
to participate (such as CD4 cell count, viral load, or age). Exclusion criteria are factors that
prevent a person from participating either for his or her safety or to make it easier to understand
the study results. For example, people might be excluded for having liver problems, or if they
have already used a drug that is being studied. Each participant in a clinical trial must sign an
informed consent. When you sign this document it means that you understand the details of the
study and you agree to participate. You may also want to take the document with you and talk
about the study with your health care provider, family, or friends before you decide to
participate.If your native language is not applicable, you may ask if translation is available. It is
important that you truly understand the study and what you will be asked to do. If you have any
questions, be sure to ask the study staff. It is their job to make sure that, when you sign, you are
making an informed choice. You may be paid for travel expenses to and from the study site and
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for your time. Childcare may also be provided. You can choose to drop out of a study at any
point.
Stages of Treatment Trials
The most common type of clinical trial in HIV is a treatment or drug study. There are four
stages, or phases, of clinical trials for new treatments. With each phase, a little more is known
about the treatment being studied. Each phase has a different purpose and helps researchers
answer specific questions about the drug in trial.
Phase
I:
Is
the
drug
safe?
A Phase I trial tests a drug in a small number of participants (usually less than 80) to find
a safe dose and to record the side effects of the drug. Phase I trials usually last a few days
to a few weeks. Scientists study body systems and interventions which can spring the
body into protecting itself against HIV/AIDS.
Phase
II:
Is
the
drug
effective?
A Phase II trial tests a drug in a larger number of participants (on average 100 to 300) to
see if the drug works. Phase II trials may also test different doses of the drug to find
which dose works best. A Phase II trial usually lasts six months to one year. The most
promising models are tried out in laboratories to determine HIV neutralizing antibodies
that shield shells against infection from a wide array of HIV strains collected from
infected people worldwide. Drugs which trigger off antibodies help scientists to design
vaccine candidates.
Phase III: Is the drug safe and effective in larger groups of people for longer periods
of
time?
A Phase III trial tests a drug in a very large group of participants (typically 1,000 to
3,000). Phase III trials gather more information about the safety and effectiveness of the
drug by comparing it to an existing medication. Successful models are then tried in
animals to check for safety and efficacy. Phase III trials generally last two to three years.
Phase
IV
or
Post-Marketing
studies:
If successful, the drug is licensed for trial in human beings. The first phase is done on a
few people to test the safety of a new vaccine. If proved safe, the sample size is increased
to test both the safety and immune response in the body. If these provide the desired
result, the final phase is done on a bigger sample of people.
Once a drug trial has completed the first three phases of research, the company that makes the
drug submits the study data to other authorities like the ministry of health and world health
organization for approval. If the candidate passes all these tests, it is licensed for use in
humans.Accelerated approval happens faster than regular drug approval and it may put special
restrictions on how the drug can be used. However, even if a drug gets accelerated approval, the
drug company must continue doing long-term research on the drug for it to get full approval.
Who should participate in a Clinical Trial?
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Choosing to participate in a clinical trial is a big decision. There are risks and benefits to
consider when making the choice.
Risks
Unpleasant or serious side effect
You may have to stop all current medications, including any HIV medications
You may receive a placebo (sugar pill)
There is no guarantee that the experimental drug will be an effective treatment for you
Benefits
You may experience health benefits from a new treatment that is not yet available to the
general public
Most trials provide free laboratory tests and expert care for the purpose of the study
You are contributing to the development of a new medication or increasing understanding
of HIV disease
It is important to participate in research because HIV and some of the HIV drugs act differently
in our bodies. More information is needed on correct drug doses for persons, differences in lab
tests such as CD4 cells and viral load, how opportunistic infections and gynecologic conditions
affect HIV positive people, and what side effects are likely to affect people. The only way to find
out this information is to join clinical trials.
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YOUNG PEOPLE -FEELINGS, SEX & RELATIONSHIPS
Working out who you are, what sex means to you and what you think a good relationship should
be is a complicated business! But, it is a massive and really important part of growing up. Being
attracted to someone can be exciting but you may feel quite anxious, wondering if they feel the
same for you. If you ask them out and they refuse you may feel rejected. You may be concerned
that if people find out who you are interested in, they may tease you about it. Some people are so
worried about this that they find it difficult to start having a relationship. You may find that you
are only attracted to people of the same sex or only to people of the opposite sex - you may be
attracted to both. When it comes to asking someone out / asking someone on a date / asking
someone you fancy if they would like to spend more time with you or any similar question, the
main thing to remember is that if you do not ask, you will never know'. What is the worst that
could happen? They say "no." Well, that is not the end of the world - and anyway, they might say
"yes", you won't know until you ask.
There is no exact formula to follow when asking someone out - it can be different in every
situation. There are lots of different types of relationship, from casual sex to marriage. People
from some backgrounds often get married to someone they have only met a few times, and then
begin the process of getting to know them and loving them through time. In other contexts,
people try relationships out with different people, and it can take a while for them to find out
what they want and what works. Some people have lots of relationships. Some people have a few
or one long one. Some people do not want a close relationship at certain times in their life.All
relationships are different, but they usually all have one thing in common - when you are in a
relationship with someone it usually means that you both like each other (and fancy each other!)
more than anyone else. It is completely fine not to be in a relationship until you are ready.
Being in a relationship should be a great experience for you and your partner. There may be
some ups and downs, but there are a few important things that should be there:
Respect – It is really important that you understand and value the person that you are
with and respect them for who they are.
Honesty – You also need to be able to show them who you are – let him or her know
how you‘re feeling and what you think about things. Good relationships involve speaking
openly to each other.
Trust – Relationships shouldn‘t make you worried or anxious about what the other
person is doing, you should be able to trust them, and feel secure that they want to be
with you.
Your own separate lives, with other people you can trust – You shouldn‘t cut out
friends, family or other important people in your life because you‘re in a relationship.
Make time for your friends and don‘t give up on things that you do independently from
your partner.
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Equality – Relationships should be fair, with both people sometimes making
compromises for each other. You shouldn‘t feel as if your partner has power over you, or
like you can boss your partner around.
Unhealthy relationships
If the person you are in a relationship with is making you feel bad in some way, this is not a great
relationship! If your partner ever says things to insult you, tries to control you, forces you into
anything sexual that you are not comfortable with, tries to isolate you from the other important
people in your life or disrespects you, then you should not have to be with them. Having a
monogamous relationship means that for as long as you stay together, you will only be physical
with each other-you won't do anything sexual with anyone else. The advantage of this is that you
are less likely to catch any sexually transmitted infections, if you stay with just one partner (as
long as they don't have any other partners or STIs!). If you have multiple sexual relationships,
with more than one partner at once, you are more at risk of catching and passing on sexually
transmitted infections, if you do not use a condom. Sex is an important part of our relationships.
Not just sexual intercourse ('going all the way') but kissing and touching each other for
pleasure.Although, just because you are in a relationship with someone, it does not mean that
you have to have sexual intercourse or do anything else that you do not feel comfortable with. If
you are thinking of having sex with someone, always try to make a decision about what you do
and do not feel comfortable with.
Ending a relationship
Relationships break up for lots of reasons. For example, because one person felt that the
relationship was unhealthy. Sometimes just because they become less close or want to do
different things. It can be difficult to break up because you may feel upset and feel like you are
hurting someone. But sometimes it may be a relief for both of you. Talking about your feelings
can help. It can stop a lonely feeling and chances are you will discover other people have had the
same feelings. Realizing other people have been in the same position helps and you may learn
from their experience. Choosing who you talk to and when is important. It may be someone you
fancy or someone you are going out with. If these people are connected with the feelings you
have, it can sometimes make it more difficult. The person you talk to should be someone you
feel easy and relaxed with and can trust. It might be a parent or guardian, especially if you have a
good relationship with them. Or it might be that a sister or brother or other relative would be
better. Some of your friends' parents might be approachable or you might have a friend who
would listen.
Talking to people who are a bit less close to you might be good too like a teacher or someone at
a youth group or a medical person such as a doctor. Talking about things can be hard especially
if they bear difficult feelings. But it is worth remembering that very often the reaction you get
will be helpful and understanding. You may wonder why you got so worked up in the first place.
If you are thinking of having sex, or being intimate (doing any sexual stuff), it's up to you to
decide when the time is right.
Whether it is your first time or you have had sex before, it is perfectly natural to wonder whether
you are ready to have sex with somebody, or whether you want to continue having sex with him
or her. You can ask yourself these questions to help you decide: Is this your decision, or are you
thinking about having sex because someone else wants you to? Maybe you are not sure you are
ready, but your partner is keen? Or perhaps there's a bit of ‗peer pressure‘ – all your friends seem
to be having sex, so you feel you should be too? Remember that if you do decide to have sex, it‘s
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completely fine to stop at any point, or not to do it again if you don‘t want to. If you recognize
any of these phrases, then you should think carefully!
These are not the right reasons to have sex. A partner who says things like this is probably trying
to put pressure on you and might not really care whether you are ready or not – this person
doesn‘t respect your feelings, and they‘re probably not the right person to have sex with. Many
of your friends will only be saying this sort of thing because they think everyone will laugh at
them if they admit they‘ve never really done anything! Besides, being sexually experienced at a
young age doesn‘t necessarily make someone mature. If you‘ve only just met your partner, or
don‘t really know them, then sex may not be a good experience because there won't be much
trust between you. Sex can leave you feeling vulnerable afterwards in a way you might not be
prepared for. Usually, you will have better sex with someone you know really well, are
comfortable with, and who you can talk to openly about relationships and feelings. If you don‘t
trust your partner enough not to laugh at you or you don‘t feel you can tell them whether you‘ve
had sex before, then it‘s far better to wait until you can. And if you think you‘ll have to drink a
lot of alcohol before you do it, so you feel relaxed enough, or you only find yourself thinking
about having sex when you‘re drunk, then that suggests you‘re not ready. Being honest about
how you‘re feeling will make it better for both of you, and will make sex better in the future.
Sometimes talking about these things can take a little practice, but you need to talk about your
worries and concerns and also what you want! It is really important that you know how to protect
against pregnancy, HIV and other sexually transmitted infections or diseases. Again, this is
something you need to talk to your partner about before the event, so you are both okay about
what you are going to use.
It is important to get your facts straight as well, a girl can get pregnant the first time she has
sex!You may decide that you are ready to have sex, or ready to do something sexual, but it might
be that your partner isn‘t, even if they have had sexual partners before. For sex to work, you both
have to be willing to do it.Don‘t ever pressure anyone to have sex if they‘re not sure – this is
very wrong, and it‘ll cost you your partner‘s respect and the respect of other people. Also there‘s a fine line between pressuring someone to have sex and forcing someone to have sex – if
you put too much pressure on someone, it can become force – and if you force someone into sex,
you can be prosecuted for rape. Sex has to be consenting from beginning to end - if your partner
changes their mind half way through and you keep having sex with them, this is assault. All over
the world and probably even just on the street that you live on; people have really different
attitudes to sex. For some people sexual feelings are bound up with love and close relationships.
Some people think sexual intercourse should only happen within marriage. For other people sex
and love are two different things. Your views on sex could be informed by your faith, beliefs or
religion. You may have a different attitude to sex than that of your family. Even if everything
goes well, keeping sex (and all the emotions that go with it) a secret can be very hard – so, if
possible, you should make sure you have someone else to talk to that you trust. But remember,
the decision to have sex should be an agreement between you and your partner, and while other
people may help or influence your decision, they shouldn‘t make it for you.
The age of consent differs between countries. In most countries, it ranges between 16 and 18. So
why do countries have a legal age for having sex? Because this is the age when the government
believes young people are mature enough to handle the responsibilities that come with having
sex. All too often people think they are ready when they‘re not. Age of consent laws are also
designed to prevent older people from taking advantage of children and young teenagers who
may not understand the consequences of having sex, or even what sex is. It‘s natural to feel a
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little embarrassed and awkward both the first time, and afterwards, when you have sex. But it‘s
more important to feel good and trust your partner, than to know a lot about how to do it. Don‘t
worry if your first time doesn‘t go completely smoothly, so long as you and your partner are
comfortable with each other you can practice together. However, if you are feeling worried
because you don‘t know enough about good relationships, your body and protecting yourself
against STI‘s and pregnancy then make sure you get knowledgeable first! A 'virgin' is
traditionally seen as someone who has never had sexual intercourse before. However, people
have different ideas about what 'losing your virginity' means. For some, it's having heterosexual
sex for the first time. For others, it can mean having any sort of sex – including gay or lesbian
sex – for the first time. Does oral / fingering / anal / hand jobs count as losing your virginity?
Whether you think these things 'count' or not, don't forget that all of them can transmit STD‘s.
And whatever you think 'being a virgin' means, remember that the most important thing is
making sure you are ready before you do anything sexual, whether it‘s the first time or not.
There's nothing wrong with being a virgin and you shouldn't feel like you have to go further then
you are comfortable with because of peer pressure. Be honest with your partner. There's nothing
embarrassing about telling them that you haven‘t been with anyone else. If you're close enough
to someone to be thinking about having sex, you should be close enough to be able to talk
honestly to him or her. Again, it is usually better to have enough of a trusting relationship to chat
openly about your experiences. You deserve not to be judged. If anyone makes you feel bad for
things that have happened in your life, they are probably not good enough to give your time to.
Remember that there is no definite way of knowing if a girl is a virgin or not, a lack of bleeding
is not proof. In some countries, it‘s common for young people to get married. Sometimes
families arrange the marriage, sometimes not. You may have already been in a relationship with
your partner, or you may not know your partner very well. Whatever the situations, talk to your
partner before sex, and do not rush into it on your wedding night.
First-time sex can hurt and some girls or young women do bleed a little bit. The bleeding usually
occurs because the girl has a hymen which breaks the first time she has sexual intercourse. The
hymen is a small piece of thin skin which goes across the opening of the vagina and protects it
when she is young. It has some gaps in it where the blood can come out when she has her period.
Sometimes a girl might already have broken her hymen without knowing about it. For example,
this can happen as a result of playing sports or horse riding. Sex the first time shouldn't hurt for a
boy, but he can make it easier for his partner by being gentle and taking it slowly - try to make it
special for you both. Some couples say that on their first time they both enjoyed it; other couples
say that neither of them had an orgasm. It's an individual thing, just try not to expect too much
from your first time - like anything else, it takes a while to learn about your body and about your
partner's. Just make sure that you're ready and you've got contraception sorted out.
Being unsure
Many people continue to question who they are attracted to, and whether this makes them gay or
straight or bi or something else. Some people may decide that they don‘t need a label for their
sexuality at all! Remember that whatever you decide, it doesn‘t have to define who you are.
Make a list of all the things about you that you can possibly think of. Who you are attracted to
will probably be one of many, many things that make you, you! Many young people who have
alternative sexual identities face stigma and discrimination. Remember that there will be others
out there who have experienced similar issues. Please take care of yourself, educate yourself
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about HIV, protect your partners, honor and cherish them. And never let anyone make you feel
inferior for being who you are.
Choosing the right time
There is no best way to come out to friends and family. Different approaches are right for
different people, depending on their situation and relationship with the person they want to tell.
Some people, for example, find it easier to write everything down in a letter, so that they can
explain fully what they want to say. This can also give others the time and space to react and
come to terms with initial feelings of shock. However, open and frank conversation is a vital part
of coming out, and helps to move a relationship forward toward a point of mutual understanding
and acceptance. These conversations need time and commitment, so it is best to choose a
moment when neither of you will feel rushed or distracted. Being tired or emotional can also
make talking more difficult, and lead to people saying things they may otherwise not have said.
Coming out does not mean that you have to tell everybody. Many LGBT people chose to come
out first to people who they think are more likely to react positively. This not only helps them get
an idea of how people may react, but often means that they will have someone to support them
when they come out to others. LGBT people often say that they have been surprised by the
positive reactions they have received when coming out.
It is common for people to be honored that you feel close enough to share this important part of
yourself with them. This acceptance can be a valuable source of strength and helps many LGBT
people to have the confidence to express their sexual or gender identity more openly. However,
many LGBT people also have to cope with negative reactions when they come out, which can be
very painful, particularly when it is someone who you care about. It is important to be prepared
for someone to be shocked; they may feel uncomfortable and not know how to react. This doesn't
mean that they will not, with time, accept the news. Try to encourage them to ask questions, as
this can help them to understand. Some people may never be able to accept your sexuality or true
gender identity. This is not something that you can change, and it can be very hard to feel
rejected by someone you are close to. It is important not to let negative reactions stop you from
coming out to others, as everyone will react differently. Reminding yourself why you have
decided to come out can help you stand by that decision. There will be people who hate you
because you have discovered who you truly are but know that you have the confidence to finally
stop pretending. Some people will love you for who you are, these people have confidence. They
know who they are and you know who you are.
Timing for intercourse
Wondering whether to have sex or to do other sexual activities with someone can be tricky, and
people have really strong, varied views on it. Sometimes young people‘s views on sex are
influenced by their background, sometimes by their friends. As a young person, it‘s good to learn
about why people have sex, how young people can make decisions about their lives and what can
happen after sex. Sex - or sexual intercourse - can result in pregnancy or sexually transmitted
infections (STIs) such as Chlamydia, HIV or Herpes. There are many STIs that you can get
through penetrative or oral sex. Sex can also impact on your emotions and happiness, both in a
positive way and a negative way.Being knowledgeable will make it easier to make decisions
about your body, having sex or not having sex, your sexual health and your relationships. Have a
look through the different topics listed on this page to learn more about sex, sexuality and
looking after yourself and your body. You will find information about puberty, having sex for
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the first time, sex and alcohol, using condoms and many other topics aimed at helping you to
protect your sexual health and stay happy and confident. Many people have questions about how
to have sex, but it isn't always easy to get good advice. Having sex can sometimes mean a
number of different sexual activities, but usually it means sexual intercourse.
The most common definition of sexual intercourse is an act that involves a man putting his erect
penis inside a woman's vagina. Sexual intercourse might also be used to refer to sex acts between
two men or between two women. Sexual intercourse between a man and a woman usually starts
with them both getting sexually excited. This is sometimes referred to as foreplay, and might
involve kissing and cuddling, touching each other and other sexual activities. Foreplay is
important as it means a woman's vagina begins to get moist and a man gets an erection. If the
woman's vagina does not get moist enough, then having sexual intercourse could be difficult or
painful for her. If a man and woman are having sexual intercourse, then using a contraceptive
properly, every time, will prevent the woman becoming pregnant. If two people have sex and one
of them has a sexually transmitted disease (STD) then they could pass it on to the other person.
Using a condom is the best way to prevent any infection from being passed from one person to
the other. If a couple is going to use a condom for protection against pregnancy or infections,
they should put it on the man's penis as soon as he gets an erection. Some men say they worry
about using condoms in case they lose their erection or have difficulty putting the condom on.
You could get some condoms and practice beforehand. Condoms come with instructions in
words and pictures which show exactly how to use them. After the condom is on, the man or
woman can guide his penis into her vagina. The couple then moves their bodies so that his penis
moves up and down inside her vagina. This usually rubs the penis and makes the man sexually
excited so that he has an orgasm. The movement might also rub the woman's clitoris (or sensitive
areas inside her vagina) so she can have an orgasm. But this often takes practice and a bit of
experimentation to get it right! Having sex does not usually hurt, though first time sex may be a
bit uncomfortable for a woman because her hymen (a thin layer of skin that partially covers the
entrance to the vagina) may be stretched or torn.
Some girls are born without a hymen and some tear theirs when inserting tampons or during
sport. A torn hymen may cause a little bleeding, but it does not usually last long. Sex is not
usually painful for a man. The best way to ensure pain free sex is for both partners to relax and
take their time. After the first time, sex should become more comfortable. The vagina is very
stretchy and will usually accommodate a penis (even a large one) with ease. However, a woman
may experience pain when having sexual intercourse if her vagina does not produce enough
natural lubrication. Extra vaginal fluids are usually produced when a woman becomes sexually
excited to allow the penis to enter the vagina easily. If a woman is tense or rushing when she has
sex, her vagina may not become moist enough to allow the penis to move in and out smoothly.
Stress can also cause the muscles in the vagina to involuntarily tense up, making penetration
difficult and painful. The best way to ensure pain free sex is for both partners to relax and take
their time. Extra lubrication might also help, and can be bought from many chemists and some
supermarkets. When using a condom, it is very important that a water-based lubricant (like KY
jelly) is used, as oil-based lubricants like Vaseline can cause the condom to disintegrate.
Different people have different opinions on this, and some say there are different types of
virginity. But most people generally agree that if a man or woman has had penetrative sex, that is
sexual intercourse, then they are no longer a virgin. There are quite a lot of different positions for
sexual intercourse. One of the most common is the missionary position, where a woman lies on
her back and a man lies on top of her. A man and woman might also lie on their sides, the
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woman may sit on top of the man, or she may kneel on all fours while the man puts his penis into
her vagina from behind. If a couple is in a position where the woman's clitoris is not being
stimulated, they can do this with their fingers.
Similar things happen to most people's bodies when they have sex - they get sensitive and warm
and excited and may have an orgasm. Enjoying sexual activities with another person is possible
whether you have an orgasm or not. Not being able to have an orgasm with another person does
not mean that you do not fancy them or love them. Your emotions might be different each time
you have a sexual experience, depending on the circumstances. Having sex can be one of the
most intense and pleasurable physical and emotional experiences a person can have. But it won't
always be wonderful. When sexual excitement builds up and reaches a peak a person might
experience an orgasm, also called a climax, or 'coming'. The sexual excitement might start from
someone masturbating on their own, or through kissing, masturbating or having sex with another
person. Sexual excitement usually grows gradually and a person feels more and more pleasure
and a kind of exciting tension. All the feelings of tension then disappear when the orgasm
happens, and the person experiences feelings of intense pleasure. The feeling can be so strong
that a person might not be able to see, or hear or think about anything for a moment. They might
even groan and call out with the pleasure. Orgasms usually last only a few seconds but the
feelings might last a lot longer. When a man has an orgasm he ejaculates. This means that sperm
mixed with semen comes out of the end of his penis in a sticky white fluid. After a man has
ejaculated he loses his erection and usually needs to stop for a while. When a woman has an
orgasm, her vagina often becomes very wet, but she can continue being sexually aroused as long
as she likes. Some women can experience more than one orgasm without stopping. If a person
doesn't have an orgasm, it doesn't mean anything is wrong.
In fact, worrying about reaching an orgasm or being nervous is quite likely to make it hard for a
person to relax enough to have one. The time people devote to doing sexual things can last from
a few minutes, to several hours, or even a whole day! The actual act of sexual intercourse will
often last until a man has an orgasm (ejaculates or comes), although there's nothing wrong with
stopping before this point. A man might find he comes very quickly the first time he has sexual
intercourse.Usually sexual intercourse lasts longer as people get more experienced and know
what to expect. But with a new partner it can take time for people to get used to each other. Sex
will usually be different every time - it depends on how a couple feels and what they want. Only
if you want it to be! Some people do make noises when they have sex. They might moan or
groan with pleasure or even cry out.Some people talk to each other. Others don't speak or make
any noises. But your body might make noises that you can't help - squelching and squishing.
These might be embarrassing or funny, but they are perfectly normal. Sexual appetite is entirely
a matter of personal taste.
Some people have sex once or twice a day and others once a month. It probably varies for most
people depending on whether they are in a relationship, how busy they are and how they feel.
Most people think about sex far more often than they do it.
Masturbation
There is no physical reason why you should or should not masturbate. It is not true that you will
go blind if you masturbate or that you will become weak or lose your health. A woman usually
masturbates by rubbing, stroking or squeezing her clitoris. The clitoris is the most sensitive
sexual part of a woman. She might also touch her breasts and other sensitive areas of her body. A
man usually masturbates by stroking, rubbing or 'pumping' his penis, and may concentrate
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particularly on the tip, which is the most sensitive part. Masturbation is sometimes referred to as
playing with yourself, or, especially with men, jerking off, a hand job, or wanking. People do not
necessarily begin masturbating when they reach puberty. Some people hardly ever masturbate,
and others masturbate a lot. It varies according to how a person feels.
Many people masturbate even when they are in a relationship with someone. Masturbation can
last as long as you want, but generally people masturbate for between a few minutes and half an
hour. It is not possible to masturbate too much, though you should stop if you start to make
yourself feel sore. Some people think that if a man doesn't masturbate his testes will fill up with
sperm. This is not true; the sperm are just absorbed into his body. It is also not true that women
who think about sex or masturbate are 'easy'. These are some useful things that would be worth
thinking about if you want to remain active, healthy and having sex! Respect yourself and
respect your body
Only you can do this.
Unprotected sex will put your body at risk.
The risks involved can have very serious consequences.
Respect others you meet
Make sure you are in it for the same reasons as each other.
Make sure all involved are happy with the situation.
Think not just about your emotions but the other person's also.
Have the confidence to make the right choices
Don't do anything that you don't want to do.
If you're not comfortable with something don't do it.
Protect yourself; be confident enough to suggest using a condom.
If you follow these simple suggestions you are more likely to be able to continue having fun and
enjoyment.
Sex, Fun & Safety
One of the most important ways to protect your sexual health is to be knowledgeable. It is
important to know how to prevent pregnancy and STIs, but also to understand the law, know
your sexual rights and watch out for how alcohol and drugs can be a risk! The more you know,
the better you will be able to make decisions about your body and your life. New technology
creates loads of new ways to make friends and talk to them. For many young people, chatting to
mates on Facebook, by text, by Blackberry messaging, on forums or on Skype to name but a few,
is as important as hanging out face to face. You can increase the number of friends you have and
link up with more people.
Lots of people like to do sexual things through messaging, or through talking on the phone. It
could be through writing things, saying things or sending pictures to someone else. This may be
something that you choose to do at some point in life. Even if it sounds a bit strange – ‗cybering‘
is a form of safe sex - you won't get any STDs from cybering with someone! As online networks
get larger, it‘s good to be sure that you know who‘s a real friend and who‘s just a part of your
network. ‗Sexting‘, that is sending sexual images or messages to others, is quite common among
some groups of young people. But you should never feel under pressure take part in ‗sexting‘
with anyone if you don‘t want to, whether that‘s your partner or a person in your wider network.
There is always the option of saying no if you don‘t feel completely comfortable or are worried
about ‗exposure‘. Also, it is important to be aware that being in possession of a sexual photo of
someone who is underage can be illegal, even if it is a photo of yourself. This is because in the
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eyes of the law it‘s basically child pornography. Make sure you know how to block people on
Facebook, blackberry messenger or other messaging devices. That way, you don‘t have to put up
with unwanted requests or abusive people. Some older people can even lie about their age just to
connect with young people online, so be smart and tell a friend, family member, or the police no one should judge you for being smart and keeping safe. Exposure is when someone shares or
lets other people see sexual images of someone, without their permission. If you decide to send a
sexual image or message to someone through the Internet or a phone, remember that they could
do anything with it, at any time.
Even if they keep it to themselves forever, consider that their phone could get stolen or looked at
by a friend. If your partner has sent you sexual images or messages, before you let anyone else
see them, stop and think about how it could make your partner feel, or what could happen to
them. ‗Exposing‘ somebody is a serious form of bullying.
Even if you are not actually giving the images or messages to other people, showing them can
still cause a lot of harm. Remember also that owning these images in the first place may be
highly illegal, so you may be putting yourself at risk by showing them to others. If you have
taken a picture, then you legally own it. Therefore, if it‘s been used in a way you don‘t like
online, you can report it to the website and get them to take it down. And depending on the law
in your country, an explicit picture of somebody who is underage can be taken down by the
police. Try to find an adult, such as a teacher, youth worker or parent, to talk to if you are in a
situation where somebody has messages or images that you don‘t want them to own. Some
people meet their boyfriends or girlfriends online or through other technology. But this is an area
where you have to be really careful - get it wrong and it could cost you your life! Look below at
tips for staying safe.
Meeting people through the internet safely
It‘s never completely safe to meet people you know only from the internet!
If you do decide you're going to meet someone anyway, take a friend with you and make
sure your parents or an adult know where you're going and who you're with.
Make sure the person you're meeting knows that you've told an adult what you're doing.
Go somewhere where there are lots of other people around - a busy mall, for example.
Don't give out personal information over the internet - don't tell anyone your name and
address, for example. If you use social networking sites, make sure that this information
isn't on your profile and that you know what your privacy settings are.
If someone you know from a chartroom or board wants you to send them pictures or
personal info – stop and think! Why are they asking, and can you be sure they're who
they say they are?
Pornography
Whatever your views or feelings are, as a young person it is good to get clued up about porn:
'Porn' can come in the form of sexual pictures, writing, photos, films or even chartroom
talk.
There are lots of different types of porn on the internet, and it ranges from quite mild
stuff to things that are illegal.
Porn actors are acting!
Sometimes young people feel like pornography effects how people think that they should
look or act during sex. The people in porn are actors, and as in any film, images are
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manipulated to make their bodies look a certain way. The way men and women in porn
look do not represent real bodies. In real life, men and women don‘t always wear makeup or sexy outfits.
You should never expect your partner in real life to do something just because you‘ve
seen it within porn.
Porn videos take hours of footage, and edit them down to make the film look like the
producers want, so you imagine how different the scene ends up being from real sexual
experiences!
Porn does not show you how to have safe sex.
It is different to real sex!
Girls have complained that porn can make it seem like sex is all about the man‘s
enjoyment. For instance, it often ends after the man ejaculates (cums). In real life, sex has
to be about both people, equally, to be good.
Some of the best aspects of sex are often missed out in porn: kissing, cuddling, trust,
communicating properly with your partner and getting to know them first! With real sex,
you might have a chat and a laugh, and chat about what you like or dislike during sex.
Some things are shown so often in porn that if you learn about sex through porn you may
think they happen every time. Some people like anal sex or ejaculating on their partner,
but they‘re not as essential as porn can make them out to be.
Whatever you see in porn, real sex needs to be mutually consensual! This means
everyone involved in any sexual act, whether that‘s kissing, touching, oral sex or
penetrative sex, needs to want to be involved.
People have different views on it:
Lots of people find it offensive – so don't show it to other people or leave it where other
people can find it. Deliberately showing it to people to harass them, or because you know
that they don‘t like it, is a form of bullying.
You do not have to see it if you do not want to:
There's loads of porn on the internet, but if you don't like it, you don't have to look at it.
Filtering software can be used to stop your computer from showing porn sites.
If someone's showing or sending you porn, and you don't feel comfortable, ask them to
stop. If they don't, then you should think about asking a teacher or parent for advice. This
can be a type of abuse.
There are laws about porn that might affect you:
In some parts of the world, there are age limits on looking at porn, so make sure you're
over the legal age. In many countries, if you are under the age of consent, it may be
illegal for you to view all pornography, whatever type; pictures, films or written.
In many parts of the world, some types of pornography are illegal, and you can get in
trouble if it's found on your computer. The laws about what is legal are different in
different countries, but pornography involving children or animals is illegal in most
countries. People who have been found to have large quantities of illegal pornography on
their computers have been sent to prison.
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Whilst some people use porn to find out about sex, there are other ways that you can learn about
sex through the internet that can be more related to real life. You might find the internet
especially useful if you‘re living in an area where sexual health information is scarcer– Websites
about sex can be really useful, especially if you want to find out about things that you're not
taught in sex education classes at school, or that you can't talk to your parents about. There are a
few things you need to watch out for, though...
Make sure you‘re sure that the information is accurate, and double-check it on a couple
more websites if you‘re not sure. Anyone can put up a web page claiming that you won't
get pregnant if you have sex standing up, for example - but that doesn't make it true! (It
isn't true, by the way!)
A good way to find a reliable website can be to ask a teacher, or your doctor to
recommend a good one.
To find what you want using a search engine, you have to use the right keywords. For example,
if you just type "teen sex" into the search box, you'll probably notice that there are a lot of
websites about 'teen sex' that don't give any advice at all – and, unless you're looking for
pornography, they won't be any help to you. Try using different words, as well as teen or sex words like advice, help, or information.Some computer programs have special filters that are
meant to stop pornography – they often look out for words about sex, and if they find those
words, they might not display the website that uses them. The trouble is, this can sometimes
mean that they also accidentally stop you from accessing advice about sex on the internet.
Most public computers, in schools and libraries for example, use filters. Often, filters can be
programmed to let certain sites through, so if you find that you can't access any useful site at
school, ask your teacher if it can be allowed through. Filters can be turned on or off, whatever
suits you. Most search engines have a button saying 'preferences' allowing you to put the filter on
or off. Microsoft Windows TM also has a filter option that you can turn on or off.To change this,
ask the owner of the computer. Okay, so there are dangers on the internet.
You can find false information, you can lose control of the things that you upload and people
aren't always who they say they are. But do not let this put you off! The web can also be a really
valuable resource for sexual health information. Almost anything you could possibly need to
know is out there somewhere, all the things you wanted to ask but couldn't go to your teachers or
parents about.If you go to anything in real life that you found about from the web, you have to be
really careful that it's safe.
As well as sexual health information, the web can put you in touch with other people – if you're
going through a difficult time, you can find other people who've had the same experiences and
can help. Or maybe you have been through a difficult experience and want to use that to help
other people.
Alcohol, Drugs & Sex
Sex, drink and drugs. Sound like fun? Well, they can be. But they also carry risks, especially
when they‘re mixed together. People often have strong opinions about sex, drink and drugs –
whatever your views, you will find that knowing more about the issues will help you to make
your own choices. ―We had sex at New Year, which was very blurred as we were both extremely
drunk... I do remember that we did not use anything and I was not on the birth control pill.‖ said
a 15year-old girl. Sex can be nerve-wracking and people sometimes find that having a few drinks
can relax them: For instance, your boyfriend may prefer having sex but the only way you can
manage is when you get drunk because otherwise you are too scared or embarrassed. Drink and
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drugs might make you feel less nervous about sex – but then if you need these things to feel
comfortable, you are probably not with the right person, you may not be ready to start having sex
yet, or maybe you just need to work on being more comfortable with yourself. If you want to
have sex, you don‘t need to rely on alcohol and drugs to enjoy it, but you may need to practice
talking to your partner about what you both want. Sexual ‗performance‘ can actually diminish
after a night out.
Alcohol can make someone less coordinated. And it is an anaesthetic. It numbs the genitals'
nerve cells, making it more difficult to reach orgasm. Alcohol can also make it harder for boys to
achieve an erection and for girls‘ vaginas to become lubricated. Drugs can have a similar effect.
Some people take drugs to make them more sexually excited, to make them 'last longer' in bed,
or because they think they will have a more pleasurable orgasm. However these drugs can
actually cause erection and orgasm problems. You may hear stories about people having sex for
hours while taking drugs, but that is probably because they cannot reach orgasm – it does not
necessarily mean that they're having better sex! Drink and drugs can make you think less clearly.
You may forget (or simply do not bother) to use a condom, which could lead to unwanted
pregnancy, or a sexually transmitted infection (STI) being passed on. If you and your
boyfriend/girlfriend want to experiment with touching one another, or try pleasuring each other
without having full on sex, this is safe (you still need to make sure that you are both comfortable
with what you are doing through). You may plan not to go further than this, but once again, drink
and drugs can make you think less clearly about the decisions that are right for you.It is good to
decide what you feel comfortable with when you are sober and can think for yourself! In many
countries, it is against the law to have sex with someone if they are too drunk to make a decision
about it. Sex has to involve the consent of everyone involved from beginning to end, and
somebody who is drunk or has taken drugs may be more likely to change their mind half way
through, and therefore no longer be consenting.
Many people are sexually assaulted when they are drunk or on drugs. This could be because
somebody has encouraged the person they attack to get drunk, or spiked their drink with stronger
drinks. Or they may have just taken advantage of a person who got drunk of their own accord. It
is vital that you know how to keep yourself and those around you safe:
Keep an eye on your friends. If you go out, it is a good idea to have one person who stays
sober for the night.
Never leave a drink unattended in a public place.
If somebody you are with is suddenly unwell or very tired, go home as a group.
Have a plan for how you will get home safely at the end of the night.
A lot of young people feel pressured into trying alcohol, drugs and sex by their friends,
schoolmates and other people of the same age group – their peers. When this happens, it‘s called
peer pressure. Peer pressure is the pressure that you feel to be like everyone else and fit in. It can
be about all kinds of things, from fashion to dating and beyond. It is not always a bad thing, and
it plays a big role in helping to shape our identities, how we talk, act and dress. But peer pressure
can also cause people to do things that go against their will or beliefs – and with drink, drugs and
sex, this is often what happens. You can be in control. You may have your own reasons for
wanting to try drink, drugs or sex, but if you‘re only doing these things because of peer pressure,
then this is the wrong reason. It‘s not always easy to say ‗no‘, but if the people you‘re with are
really your friends, they‘ll respect your decisions.
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Stand your ground and do what feels right for you, not anyone else. Ultimately, it is up to you to
assess the risks and make decisions. If you are going to drink, take drugs or have sex, be aware
of the problems they can cause and take measures to minimize the risks to yourself and those
around you.
If you are going to drink, do it responsibly and make sure you‘re around people you can
trust.
If you‘re going to do drugs, the same applies, and you should also make sure that you
know the score about what you‘re taking.
With sex, make sure that you use a condom to prevent STIs and pregnancy, or if you‘re
with a regular partner who you‘re certain doesn‘t have an STI, other birth control
methods that can prevent pregnancy.
Keep in mind the law. Almost all recreational drugs are illegal, and they usually carry
heavy penalties. The legal drinking age varies between countries but is generally at least
18, so make sure that you know the age of consent.
Combining drink and drugs with driving is illegal in almost every country and is always a
bad idea.
Don‘t let peer pressure dictate your decisions. Work out what‘s best for you as an
individual, and stand up for yourself. If you don‘t want to drink, take drugs or have sex,
then that‘s perfectly fine, and you shouldn‘t let anyone tell you differently.
Teens, Sex and the Law
It seems too many teens that adults are always making a big deal about people having sex under
the age of consent. Many young people think that if they feel ready to have sex and they use
protection, it is nothing to do with anyone else. But everyone needs to know what the law says
about having sex and why we have laws about sex at all! The age of consent is the age when the
law says you are mature enough to be able to agree to have sex. In most countries, until you
reach this age you cannot legally have sex with anyone, however old they are, even if you want
to. Sometimes the law is slightly different when the partners are of a similar age, but there is
usually still a minimum age below which sex is always illegal. Teens cannot get around the laws
for smoking, drinking or driving because their parents say so, and it's the same with sex. The age
of consent laws always apply; whether you're in love, have been together for ages, and even if
you've had sex before. Although some young people are mature enough to know how to deal
with it if someone tries to get them to have sex, many teens are not grown up enough to know
what to do.
Age of consent laws are there to protect young people from being exploited by adults. What the
age of consent is depends on where you live - there are different age limits in different places,
and in some places the age of consent is different for boys and for girls. The law can also change
depending on how old your partner is, and whether they are in a ‗position of authority‘ – for
example a teacher.
If you are under the age of consent and you choose to have sex with someone who is over the age
of consent, then they can be charged with the crime of 'statutory rape'. Some countries have
different names for this crime, and some call it 'unlawful sexual penetration' or just 'rape'. This is
when a person is pressured into any type of sexual contact that they do not agree to. This can
include ‗direct abuse‘, such as inappropriate kissing, fondling of a person‘s genitals or other area
of their body that they wouldn‘t want to be touched, or when a person is made to touch another
person in a way that they are not comfortable with. It can also include ‗indirect abuse‘ which
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includes a person knowing that another person is being mistreated, but not doing anything about
it. If you know anyone who is being pressurized in this way, you should tell an adult who you
trust about what's going on. A forced marriage is where one or both partners have not or cannot
give their consent to getting married. This should not be confused with ‗arranged marriage‘
where parents or family arrange a marriage, but both partners decide whether they want to get
married or not. Forced marriage is against the law in many countries, and it is a human rights
violation under international law. Child marriage is considered to be forced marriage, because
children are not considered capable of making an informed decision. It is really important to
know the laws that are in place to protect you. If you are at risk or have been affected by any of
the issues mentioned above, talk to an adult that you trust, or get in touch with an advice
organization.
Teens-Condom Tips
When it comes to HIV infection, it is not trust that matters, but protecting oneself. People live
long with the AIDS virus without showing any signs. Using condoms in a sexual relationship
indicates awareness and responsibility to protect oneself ad care towards one another. Condoms
are not for prostitutes, they can be used by anyone who wants to have a healthy risk-free
relationship.
Because if you want to have sex with someone, they are important! Sex can be great, but there
are risks involved. Aside from all the emotional issues, you can catch infections, and a woman
can become pregnant. So if you do not want to deal with these really tough situations, a condom
is vital! Some people think it's the man's job to make sure he uses a condom; some people think
contraception is up to the woman. They're both wrong - it takes two to have sex, so both partners
should make an effort. If you're not responsible enough to sort out contraception, you're not
responsible enough to be having sex. If you are sleeping with someone, you should have enough
respect for them to protect you. Buying condoms can seem frightening or embarrassing,
especially for a young person, but it is not really. You can get them in most pharmacies or
drugstores and a lot of supermarkets sell them.
In some countries, young people are entitled to free contraceptive advice and contraceptives from
their doctor. But you don't need a prescription to get them, and often health clinics, family
planning centers, and even schools have supplies of free condoms for teenagers. In most places,
you can buy condoms whatever your age. If you are still too embarrassed to go and buy them,
you can sometimes get them from vending machines (often in public toilets) or over the internet.
Assuredly, you should put the condom on before there is any contact between the penis and your
partner's body. Fluids released from the penis even very early on in sex can cause pregnancy or
transmit an STI. So, when the penis is erect, open the condom wrapper. Do not do it with your
teeth! This can cause tiny rips in the condom which you might not notice. Unroll the condom a
little over the top of the penis - make sure that the roll is on the outside - if it's backwards then
the condom won't unroll. If there's any air trapped in the condom, this can cause it to break, so
make sure you pinch the end to squeeze any air out. Then just firmly roll the condom down as far
as you can. If you want to use any lube, put it on the outside of the condom and make sure it's
water-based lubricant.
Oil based lubricants can weaken the condom and make it break. If a condom breaks while you're
having sex, then stop right away and put a new condom on. While you're having sex you can
sometimes feel if a condom has broken, but not always, so you should check occasionally that
it's okay. If you think some semen has escaped from the condom you might want to think about
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talking to your doctor about getting emergency contraception and an STD test. Some sexually
transmitted diseases and infections (such as herpes) can be passed on by oral sex. When you use
a condom for oral sex, you should change condoms before having vaginal or anal sex, because
teeth may have made little holes in it. After he has ejaculated, a man using a condom needs to
stop and take the condom off. If you carry on having sex, it can burst. If you want to carry on,
that's fine, just put a new condom on again, and away you go.
Never re-use a condom. When the man pulls his penis out, he should hold the base of the
condom to make sure that it comes out, too. And when taking a condom off, don't just pull on the
end. Roll it back from the base and throw it away safely - do not flush it down the toilet. You
might also want to tie a knot in the end to stop it leaking.
There are a lot of different kinds of condoms, but don't worry. Here are the variations you can
get:
Material - Most condoms are made from latex or polyurethane. The latex ones are a little
stronger, so they give slightly better protection from STDs and pregnancy. A very small
amount of people are allergic to latex, though, so they use polyurethane ones.
Size- Condoms come in lots of different sizes. You can get longer or shorter or wider or
narrower ones. If a packet of condoms says 'large' or 'small', this is usually talking about
the width of the condom, not the length. Be honest! A condom that is too big may come
off, and a condom that's too small might break. Most condoms that you buy in shops and
vending machines will be a standard size.
Lubricated- Some condoms are not lubricated at all, some have silicone-based
lubricants, and some have water-based lubricants. Some condoms are lubricated with a
spermicide (see below).
Spermicidal - Some condoms have a spermicidal lubricant, which can help to reduce the
likelihood of pregnancy. One of the most common spermicides is something called
nonoxynol-9. This is a chemical that some people are sensitive to, and if it's used
regularly it can cause irritation and increase the chance of HIV infection. Condoms
lubricated with Nonoxynol 9 should not be used for anal sex.
Ribbed - These condoms have little ridges running around them. These can make sex
more pleasurable for both partners, and if they're used correctly (see below) then they're
just as safe as ordinary ones. Ribbed condoms are the answer for people who complain
"But I can't feel anything if I put on a condom..."
Coloured - The natural colour of latex is a creamy white, so lots of condoms have
different colours - some of them even glow in the dark. Again, if they're used properly,
they're fine.
Flavoured - Some sexually transmitted infections can be passed on orally, so it's a good
idea to put on a condom for oral sex. Sometimes, people don't like the smell and taste of
latex, so they use flavoured condoms.
Reservoir tipped - Most condoms have a reservoir tip to catch semen, some have a plain
tip. If they have a reservoir tip, be sure to pinch the end when putting them on - if they
have air inside them, they can break when you're having sex.
Then if you want to be safe, you will have to get one. Some types of contraception (such as the
pill) are more effective than condoms for avoiding pregnancy, but won't reduce your chances of
contracting a sexually transmitted infection. And if you are single, it does not hurt to carry
condoms with you - just in case, and make sure that when you are not on a night out, you store
your condom somewhere cool and dry to make sure it lasts well. They also have a sell-by date on
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the packet – do not use condoms that are too old. It is scary enough having sex for the first
without having to worry about using condoms, too.
Contraception for Young People
'Birth control' is a term that describes things that stop a woman or girl from becoming pregnant,
or giving birth. Birth control can mean a wide range of things – from 'contraceptives' (used to
reduce the chances of a woman becoming pregnant) to other ways of avoiding pregnancy, like
not having sex. If you don‘t want to have a baby, there are two main options – either do not have
sex, or if you are going to have sex, use contraception. Well, here we are talking about having
sexual intercourse, where a man inserts his penis into a woman‘s vagina. There are other forms
of having sex – like oral sex, for instance – but the only one that‘s likely to get a girl pregnant is
sexual intercourse. You might be thinking ‗yeah ok, I already know that girls get pregnant
through sexual intercourse‘. But are you sure that you really know the facts about pregnancy?
There are a lot of myths out there. Despite what you may have heard, a girl can become
pregnant:
The first time she has sexual intercourse.
Even if she has sex before she‘s had her first period.
Even if she has sex during her period.
Even if a boy pulls out (withdraws his penis) before he comes.
Even if she has sex standing up.
Even if she forgets to take her pill for just one day.
The only 100% effective way to avoid having a baby is to not have sexual intercourse. Many
young people around the world choose this option. For some, this means not having sex until
they are married. For others, it can mean different things, like waiting until they have found a
stable partner who they feel comfortable with. You need to decide what is best for you
personally – do not feel pressured into having sex just because others are. It is important to feel
that you are ready before you start having sex. ―Do not feel pressured into having sex just
because others are. ―Some people believe that you should not start having sex (be abstinent) until
you are married. People also have different views about having sex in marriage; some think you
should only have sex if you want to have a baby, whilst others think that once you are married,
it‘s ok to use birth control if you still don‘t want a baby.
Many religious beliefs object abortion. A lot of people; on the other hand, don't think that there's
anything wrong with having sexual intercourse when you don‘t want a baby, and many do not
believe that you have to be married, or even in a serious relationship, before you start having sex.
It is good to think about where you stand on this issue. As much as abstinence is the right route
for some people, a lot of teens do not want to wait to have sex until they are ready to have a
baby. Puberty brings with it a lot of sexual feelings, and many choose to have sex for the first
time during their teenage years. If you do choose to have sex (and you should only have sex
when you're sure that you are ready), make sure that you use contraception. There are a lot of
contraception options, and you should choose one that suits you and your relationship. Some
women and girls don‘t want to have a baby, but become pregnant because they‘ve had sex
without using contraception, or because the contraception that they‘ve used has failed for some
reason. In these situations, women may decide to have an abortion. This is where a woman
becomes pregnant, but the embryo or foetus (unborn baby) is removed, stopping pregnancy.
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As with birth control in general, there are many different arguments about whether abortion is
right or wrong, and whether it should be allowed. If you have sex, you need to consider how you
feel about this issue, and how your life would be affected if you had to make such a decision. It
is important not to confuse arguments about whether abortion is right or wrong with facts about
the medical procedure. Different countries have different laws about abortion, and in many
countries it is illegal. In many places where abortion is legal, it is a safer medical procedure than
childbirth, and having a safe abortion does not affect your future ability to have children. Where
abortion is illegal and not performed in a medical setting, it can be very dangerous.
Teenagers and Contraceptives
Contraceptives work by preventing a man‘s sperm from fertilizing a woman‘s egg, and this can
be done in several different ways. There are two main types of contraception:
Barrier methods - which physically prevent sperm from swimming into the uterus and
fertilizing the woman‘s egg
Hormonal methods - which alter a woman‘s hormonal cycle to prevent fertilization.
These are the main types of contraception that are generally used by teenagers. Other types of
contraception, which are generally not used by young people, include natural methods such as
only having sex at certain times of the month (these are often not effective enough to prevent
pregnancy), and sterilization, which is a permanent surgical procedure. The intrauterine device
(IUD) and intrauterine system (IUS), also known as 'the coil', are generally not used by young
people although in some countries, they are now considered suitable for all age groups. Different
methods of contraception have their individual advantages and disadvantages. There is no single
‗best‘ method of contraception, so you have to decide which is most suitable for you. Whatever
your situation, there should be a contraception option that works for you. For many people,
barrier methods of contraception are best, because they not only prevent pregnancy, but also
prevent HIV and other STI‘s from being passed on during sex. It depends which type of
contraceptive you are looking for.
Barrier methods such as condoms and spermicides are widely available from drug stores and
other shops in many countries. They are also available from many healthcare providers.
Hormonal methods are only available on prescription from doctors. There are three main barrier
methods of contraception used by teens: the male condom, the female condom, and spermicides
in the form of foams or gels. The male condom is the only method of contraception that boys can
use. It is really just a rubber tube. It is closed at one end like the finger of a glove so that when a
boy puts it over his penis it stops the sperm going inside a girl's body. An advantage of using
male condoms is that a boy can take an active part in using contraception – it is not just the girl's
responsibility.
The female condom is not as widely available as the male condom and it is more expensive. It is
however very useful when the man either will not, or cannot, use a male condom. It is like a male
condom, except it‘s bigger and worn inside the vagina. It is a good idea to practice with condoms
before having sex. You can get used to touching them, and it might help you feel more confident
about using them when you do have sex. Spermicides are chemical agents that both kill sperm
and stop sperm from travelling up into the cervix (the lower part of the uterus, or womb, where
babies develop). Spermicides come in different forms including creams, foaming tablets, gels
and foam (which is squirted into the vagina using an applicator). Young people who use
spermicide mostly choose foam. Spermicides are not very effective against pregnancy when used
on their own, but are very effective if used at the same times as a male condom. When used
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together, the male condom and spermicide can be a great combination for effectively protecting
against both pregnancy and sexually transmitted diseases such as HIV. Some condoms also come
lubricated with spermicide (Nonoxynol 9). A spermicidal lubricant aims to provide an additional
level of protection if some semen happens to leak out of the condom. This can help to reduce the
likelihood of pregnancy, but regular use of Nonoxynol 9 can cause an allergic reaction in some
people resulting in little sores that can actually make the transmission of HIV and other sexually
transmitted infections more likely. Nonoxynol 9 is only a suitable spermicide when both partners
are HIV-negative. It should only be used for vaginal sex.
There are two main types of hormonal contraceptive which can be used by teens: the
contraceptive pill, and the injectable hormonal contraceptive. If used properly, both are
extremely effective in providing protection against pregnancy – but they provide no protection
at all against sexually transmitted diseases. For very good protection against both pregnancy
and sexually transmitted diseases like HIV, a hormonal method should be used at the same time
as the male condom. People often talk about being 'on the pill'. This means they are using the
oral contraceptive pill as a method of contraception. This has nothing to do with oral sex, and
just means that the contraceptive is in pill form which is taken orally (swallowed). The pill
contains chemicals called hormones. One type of pill called ‗the combined pill‘ has two
hormones called Oestrogen and Progestogen. The combined pill stops the release of an egg every
month – but doesn't stop periods. The other type of pill only has Progestogen in it. It works by
altering the mucous lining of the vagina to make it thicker. The sperm cannot then get through,
and as the sperm can't meet the egg, the girl can't get pregnant. Usually a girl has to take one pill
every day for about three weeks. She then takes a break for seven days while she has her period,
before starting the cycle again (or instead, she may take ‗sugar‘ pills for those seven days, i.e.
pills that don‘t actually have any affect, but which are taken purely so she keeps in the routine)
for seven days.
It is very important not to forget to take these pills. If this happens, protection against pregnancy
is lost. The Progestogen-only pill also has to be taken at the same time every day. It's a very
effective method of contraception if it is taken correctly. If the pill is taken exactly according to
the instructions, the chance of pregnancy occurring is practically nil. But if a girl forgets a pill, or
is very unwell, its effectiveness is reduced. Another disadvantage of the pill is that it does not
provide any protection against STDs. For very good protection against both pregnancy and
STDs, the birth control pill should be used at the same time as the male condom.
Injectable Hormonal Contraceptive
The most popular form of this type of contraception, Depo-Provera, involves the girl having an
injection once every twelve weeks. The injection is of the hormone Progestogen. The injection
works in the same way in the body as the Progestogen only pill, but has the advantage that you
do not have to remember to take a pill every day. It does however have the same disadvantage as
the hormonal pill, in that it provides no protection against STDs.
The Contraceptive Implant
The 'implant' is a newer form of contraceptive, It is a small tube, a little over an inch long, which
is inserted under the skin on the inside of a girl's arm. The implant works in a similar way to the
contraceptive pill, but instead of taking a pill every day, hormones are steadily released into a
girl's body from the device. This is seen as an advantage, particularly for girls who have trouble
remembering or don't like having to take a pill every day. However, the implant can cause
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unwanted side effects, and like the other hormonal contraceptives, the implant does not protect
against STDs.
The morning after pill
If a girl has had unprotected sex, but doesn‘t want to have a baby, one option is ‗the morning
after pill‘ – an emergency contraceptive that can prevent pregnancy, when taken after sex. The
name is actually a little bit misleading, as it doesn‘t necessarily have to be taken ‗the morning
after‘ – it can work up to 72 hours after you‘ve had sex. However, it is most effective when taken
within 24 hours of sex, and the sooner you take it, the better. Although the morning after pill can
be an effective way to avoid pregnancy if you have had unprotected sex, you shouldn‘t rely on it,
or use it regularly. It is not as effective as other methods of contraception, and can have side
effects. What is more, it won‘t protect you from HIV or other sexually transmitted diseases.
STD’s & young people
STD stands for Sexually Transmitted Disease (sometimes called Sexually Transmitted
Infection). This is an infection which can be caught by having sexual contact with someone who
is infected. This can be vaginal, oral or anal sex, although other types of touching can pass some
STDs - for example, some STDs (such as Herpes and HPV) can be caught by touching the
infected areas of someone's body and then touching your own genitals (private parts). There are
quite a lot of different STDs. Knowing as much as possible about them is one of the best ways to
keep yourself sexually healthy. In fact, some STDs like chlamydia and gonorrhea are actually
more common among young people than among older men and women. And you do not have to
have sex with a lot of people to get an STD, although this can increase the likelihood. You
wouldn‘t necessarily. Sometimes STDs have no symptoms at all. Visible STD symptoms can be
found either on the genitals or in and around the mouth. If you think you have an STD you
should have a test and get treatment.
Many STDs are easy to cure and all are treatable. However, untreated STDs can be dangerous if you don't get help, you may not be able to have children later in life, or it can increase your
risk of cancer. You may also pass it on to your partner. It may help you to talk to an adult perhaps a parent, school nurse or teacher may be able to advise you where you can have an STD
test. Or you can ask your doctor about STD testing. It's much better to talk to someone than to
worry on your own. Most (but not all) clinics have a confidentiality policy, and will not tell
anyone, although some places will want you to bring a parent to give consent. You can phone the
clinic before you go and find out. If you think that you may already have passed on the infection
to someone else, it is important that you tell them so that they can have a test, too. They may take
a urine sample, a blood sample or a swab from the vagina or penis.
Not all STD testing requires you to have a physical examination, and you might not even have to
undress. Ask what they are testing for - it may be a good idea to be tested for everything, if you
can.
Some places can give you the results on the same day, in other places you may have to wait for a
week or more. While you wait, you shouldn't have sexual contact with anyone. If you find that
you do have an STD, it is important that you do not pass on the infection to anyone else. Ask the
clinician for advice about when it‘s safe to have sexual contact again. If you think that you may
already have passed on the infection to someone else, it is important that you tell them so that
they can have a test, too. If the clinic gives you antibiotics or medication, make sure that you
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follow the instructions and complete the course of treatment - otherwise the STD may come
back.
Using condoms during vaginal, oral and anal sex will help to protect you. You could also use a
female condom (although you shouldn't use both male and female condoms together). However,
some STDs (such as oral herpes) can be transmitted in other ways, such as kissing. You shouldn't
have sexual contact with anyone who has visible sores or genital rashes. You can only catch an
STD by having sexual contact with someone else who already has an STD, but remember that
this won‘t usually be obvious. This means that someone who does not have an STD cannot infect
you, and you cannot infect yourself by masturbation.
Young people & HIV
To be able to protect yourself, you need to know the facts, and know how to avoid becoming
infected. You also need to know how to challenge the major myths and misconceptions around
HIV and AIDS because they can lead to young people who live with HIV being stigmatized.
HIV is passed on in the sexual fluids or blood of an HIV-positive person, so if infected blood or
sexual fluid gets into your body, you can become infected. This usually happens by either having
sexual intercourse with an HIV-positive person without using a condom or by sharing needles
used to inject drugs with an HIV-positive person. People can also be born with HIV if their
mother has HIV or get HIV through breastfeeding.A very small number of people get HIV by
having medical treatment using infected blood transfusions. HIV cannot be caught by kissing,
hugging or shaking hands with a person living with HIV, and it cannot be transmitted by sneezes,
door handles or dirty glasses. Lots of sexual activities are completely safe. You can kiss, cuddle,
massage and rub each other's bodies.
Nothing you do on your own can cause you to get HIV - you cannot get HIV by masturbating.
Using a condom is not absolutely safe as condoms can break, but condoms can be very effective
if they are used correctly. Oral sex (one person kissing, licking or sucking the sexual areas of
another person) does carry a small risk of infection. If a person sucks the penis of an infected
man, for example, infected fluid could get into the mouth. The virus could then get into the blood
if you have bleeding gums or tiny sores somewhere in the mouth. The same is true if infected
sexual fluids from a woman get into the mouth of her partner. But infection from oral mouth
alone seems to be very rare. If you are using drugs you may take risks you normally would not
take, and you may have unsafe sex when you would normally be more careful. If you take drugs,
you might find it more difficult to use a condom or you might forget altogether. One of the most
common drugs this can happen with is alcohol - if you are drunk, you might not always know
what you're doing, or you might not care. ―If you are drunk, you might not always know what
you're doing, or you might not care. ―If you inject drugs, you should always use a clean needle,
syringe and spoon, water, etc. each time you inject, and never share any of these with anyone
else. If you snort drugs, and you use a note or a straw to snort through, you should not share it
with anyone else, as blood can be passed from the inside of one person's nose to another. If you
have a tattoo or a piercing, you should make sure that the needles and equipment used are sterile.
Ask the staff at the place you have it done about what precautions they use. If you have sex with
a partner who has HIV, you can be infected with it, whether it's your first time or not, so use a
condom! If it is the first time you have sex or the first time with a new partner, it can be scary
enough without having to worry about condoms. But using condoms can be quite sexy - try
getting your partner to unroll it for you. You may find it helpful to talk to an adult - perhaps a
parent, school nurse or teacher may be able to advise you where you can have a test. It is much
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better to talk to someone than to worry on your own. The clinic will suggest that you wait three
months after your last risky sexual contact before having a test. This is because the virus is
difficult to detect immediately after infection. The clinics in different places have different
policies.
Most (but not all) clinics have a confidentiality policy, and will not tell anyone, although some
places will want to bring a parent to give consent. You can phone the clinic before you go to find
out. Before they do anything, the doctor or nurse will ask if you are sure you want to have a test.
They will usually take a sample of blood for examination. If you also want to be tested for
STD‘s, they may take a urine sample, or they might ask if they can take a swab from the vagina
or penis. Some places can give you the results on the same day, in other places you may have to
wait for a week or more. While you wait, you should not have sexual contact with anyone. Talk
to your doctor or the clinician where you got tested. They will give you more advice about how
to stay healthy. They will also be able to tell you if you need to have any other blood tests done,
and talk to you about medication.
Puberty and sexual organs
It is good to get really well-informed about bodies, both your own and others. This can help you
to be sexually healthy and confident. Not everyone fits simply into one of the categories ‗girl‘ or
‗boy‘, and there is help out there for young people who think they may be ‗transgender‘ where
they have a girl‘s body but feel like a boy, or the other way around. Between the ages of 10 and
14 most boys and girls begin to notice changes taking place in their bodies. These changes,
which occur over a number of years, are generally referred to as puberty.
The changes take place in all boys and girls but they will start at different times and take place at
different rates. Not everyone starts puberty between the ages of 10 and 14, some people start
younger, and some much later. Similarly, in some people all the changes take place in two years,
and in others they can take as long as four years. Generally they start between ages 7 and 13 in
girls and ages 9 and 15 in boys. Puberty starts when extra amounts of chemicals called hormones
start to be produced in the body. These hormones guide the changes that take place in the body.
As well as causing physical changes, these hormones also cause emotional changes. One of the
main physical changes of puberty is the growth and development of the sex organs – the parts of
the body that are used to have sex and make babies. Sex organs that can be seen on the outside of
the body are called ‗genitals‘ while those that are inside the body are usually called ‗reproductive
organs‘. Between a girl‘s legs there are three small openings. At the front is the urethral opening
which a girl urinates through, and at the back is the anus which she defecates from. In between
these two openings is a third, her vaginal opening. From the vaginal opening there is a small
passageway or tube, called the vagina, which leads to the reproductive organs inside the body.
When a girl has her period the blood comes out through her vagina. Inside the vagina there is a
small piece of thin skin called the hymen. The hymen partly covers the vaginal opening, but
there is still enough of a gap for blood to get through. Sometimes the hymen breaks and bleeds
slightly when a girl has sex for the first time. Some other important parts of a girl‘s sex organs
are:
The clitoris, which is at the front of a girl‘s outside sex organs and is about the size of a
pea. The purpose of the clitoris is to give sexual pleasure. It is very sensitive and
important for sexual activity.
The outer lips (labia) of a girl‘s sex organs
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The labia, clitoris and vaginal opening are together known as the vulva. The boy‘s sex organs
outside his body are his penis and testicles (testes). A boy‘s penis hangs down between his legs
at the front of his body. The main parts of a penis are:
The shaft - the main, long part of the penis
The glans - the tip or head of the penis
The foreskin - skin which covers the glans
The foreskin can usually be pulled back quite easily. If it is tight it can be stretched by gently
pulling it over the glans. All boys are born with a foreskin, but some have it removed when they
are young, or later in life. The removal of the foreskin is called circumcision. Circumcision
happens for religious or cultural reasons, or for health reasons, such as to reduce the likelihood of
becoming infected with HIV. Underneath the penis is the scrotum – a loose, wrinkly pouch of
skin that hangs down behind a boy‘s penis. It contains his testicles. As a boy goes through his
puberty his testicles move lower down his scrotum. One of the testicles usually hangs lower than
the other. Inside a girl‘s body are two small organs called the ovaries? Contained in these ovaries
are hundreds of tiny sex cells called eggs, each no bigger than the head of a pin. At some point
during puberty, the ovaries will begin to release these eggs. Usually one egg is released every
month. This process is called ovulation.
A boy‘s sex cells are called sperm and they are even smaller than a girl‘s eggs. At puberty a
boy's testicles will start making sperm. Sperm leaves a boy's body through his penis when it is
hard and erect. This is known as ejaculation and it happens when a boy reaches the height of
sexual excitement and has an orgasm. When a boy ejaculates, millions of tiny sperm are sent
from his testes, up through his penis and out through the end. The sperm are contained in a sticky
white fluid called semen. When a boy‘s sperm meets with a girl‘s egg they usually join together,
which is called fertilization. The fertilized egg may then become a fetus, the first stage in the
growth of a baby.
The most common way that sperm get inside a girl‘s body is through sexual intercourse. Sexual
intercourse is when a boy puts his hard penis inside a girl's vagina. It is also often called having
sex or making love. Having sex (which usually involves moving the penis in and out of the
vagina) is usually pleasurable for both a boy and a girl, and it will often result in an orgasm for
one or both partners. If a boy ejaculates while his penis is inside the girl‘s vagina (or if semen
gets inside the vagina any other way) then the millions of tiny sperm in the semen will swim up
the vagina, through the cervix (the entrance to the uterus) and into the uterus (also known as the
womb). From there they will swim into the fallopian tubes. In one of the fallopian tubes the
sperm may find an egg that has recently been released by the ovary. The sperm will surround this
egg and try to get inside it. Eventually just one sperm cell will succeed, and the egg and sperm
will join. This joining is also known as fertilization or conception. This joined sperm and egg
then travel back down to the uterus, where they will settle in the thick, blood-rich lining and start
to grow. Once the fertilized egg has settled in the uterus and is growing, we say a girl is
pregnant. On average, the whole menstrual cycle (from the first day of the period to the day
before the next) will last 28 days.
Girls generally only release an egg once a month and it will normally take a few days to travel
down the fallopian tube. If the sperm and the egg do not meet to become a fertilized egg during
this time, then she won‘t become pregnant. Without a fertilized egg to nourish, the thick lining of
the uterus is no longer needed. So, approximately 14 days after a girl‘s egg is released, the
bloody lining of the uterus will begin to come away, and will flow down through the cervix and
out of the vagina. This process is called menstruation, and this is the blood that a girl will notice
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when she has her period. During puberty, a girl‘s first period is a sign that she has released her
very first egg, and could now have children. Periods will usually last somewhere between 3 and
10 days. Around 14 days after the start of her last period, a girl will ovulate (release an egg)
again, and will once again have the chance to become pregnant. This process of period, then
ovulation, then period, is known as the menstrual cycle. On average, the whole menstrual cycle
(from the first day of the period to the day before the next) will last 28 days, although variations
between 21 and 35 days are quite normal. Though an egg is usually released about the same time
each month, this does not mean that a girl can predict exactly when she will (or won‘t) become
pregnant. This is because girls usually have no way of knowing exactly when they are ovulating.
Not only can the day of ovulation vary from girl to girl, it can vary from month to month in an
individual girl. In addition, sperm can survive for several days within the body, so they can ‗hang
around‘ waiting for an egg to be released if there isn‘t one there already.
All this means that if a girl wants to avoid pregnancy but still have sex, she and her partner will
need to use contraception.STD‘s, which can be passed on from one person to another during
sexual intercourse, are also something that both boys and girls need to consider if they decide to
have sex. Condoms are widely used because they help to prevent both pregnancy and sexually
transmitted diseases. Using contraception every time you have sex is very important if you want
to avoid pregnancy. It is also important to remember that a girl can become pregnant even if:
It is the first time she has sexual intercourse
She has sex before she has her first period (it could be that she is ovulating for the first
time)
She has sex during her period (sperm can stay alive for several days)
A boy withdraws his penis before he ejaculates (pre-come, the fluid that leaks out the
penis before a boy ejaculates, can sometimes contain sperm)
She has sex standing up (sperm can swim in any direction – up or down!)
Because periods stop during pregnancy, the first sign that a girl may be pregnant is usually a
missing period. If a girl does not start her period at the usual time, it is probably a good idea for
her to talk to her doctor or another adult as soon as she can.
Periods can come late for other reasons (for example when a girl is stressed, on a very strict diet
or has been unwell), but if she has had sex in the past month, then it may be a good idea to take a
pregnancy test to be sure. When boys get sexually excited, the main sign is that they get an
erection. For boys and girls when they are sexually excited or "turned on", extra blood comes to
the surface of the skin, particularly around the penis and vagina. This can cause areas of the body
to feel more sensitive, and some people find they get a warm sensation. A person can have
sexual feelings any time in their life, but these change around puberty. You might find some
sexual feelings just seem to happen to you. But sexual feelings mostly come about from things
you choose to do, either on your own or with someone else.
The main way that people express their sexual feelings is by touching their own genitals. Boys
can get pleasure from touching their penis, particularly the tip. This is called masturbation. Some
people masturbate very often, maybe every day. Some people do it less often, and some do not
masturbate at all. When a person is masturbating they become more and more sexually excited.
They may then reach a peak of sexual excitement which is called having an orgasm or "coming".
This is when all the tension and excitement that has built up is suddenly released. Boys ejaculate
when they have an orgasm and their penis will then go limp. Everybody has their own way of
masturbating that feels good for them. For much masturbation is their first sexual experience.
There are many myths about masturbation which make some people think it is wrong. However,
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masturbation is a normal and natural activity and is not bad for you unless you masturbate so
much that you make your genital area sore. Masturbation does not damage your health: it cannot
cause cancer, give you a sexually transmitted infection, affect your eyesight, or make you go
mad. It does not cause hair to grow on your palms or any other part of your body, and it does not
stunt your growth. If it did, the vast majority of people in the world would be very short and
unhealthy! People have strong views on it, but pornography is one way that some young people
explore their sexual feelings. In some settings, many boys search for answers to their questions
about sex and the body through watching porn.
As an infant, you may be newly diagnosed and wanting to find out more about life with HIV,
you may have lived with HIV all your life or you may have just found out about your status and
want to know more about what it means. It may be that you have always known that you have a
health condition, and now your family has told you more about it. It may be that you have
recently become infected with HIV and have just been diagnosed. Either way, finding out that
you have HIV is emotionally very difficult, and something that you will need support with. This
support can come from family, friends or professionals like doctors. It can also come from the
internet - you can connect with other people through sharing stories and experiences. What you
need to remember is that there are over a million other young people in the world who live with
HIV – you are not alone. It is a condition that affects your immune system, not who you are –
HIV does not have to stop living your life to the full! When you are young, there is going to be a
lot of stuff going on in your life – school, friends, weekends, your family – some of it great,
some of it difficult. Whilst most of issues that you face may be the same as many of your friends,
HIV can add some extra things that you need support with.
Telling people that you have HIV is known as ‗disclosing‘. It can be a big decision to share your
status with a friend. It can bring you closer and create another source of support, but it is good to
consider what could go wrong and to be very clear about how you will tell the person. If you
decide that this is something you want to do, you can make a personal plan – when will you tell
them? Where is a good place to be? How much do they already know about HIV? You could get
them to read 'HIV and AIDS for young people' so they know the facts. How much do you want
to tell them? Only that you have a blood condition, or do you want to name it? Asking questions
like ‗What do you think about HIV?‘ beforehand may help you to gauge how much they know
and how they may react. When disclosing, remind your friend that this is just something that
affects your immune system – it does not change who you are or your friendship. You may
decide that you do not want to tell anyone at your school, but to share your status with people
from a peer support group, where people will be in a better position to understand. These days,
many young people feel that they are part of a generation where HIV is NORMAL, but others
still feel isolated and unable to talk to anyone about their status.
One of the reasons for this is that unfortunately, HIV is sometimes connected with something
called ‗stigma‘. This is when people think that somebody is less valuable because of a certain
thing about them, like where they live, what language they speak, what colour hair they have or
their HIV status. It is very wrong, but is usually because people do not understand the thing that
they are passing judgement about. In the case of HIV-related stigma, if you experience it, it is
really good to talk to somebody – to try to work out a way to challenge it together.
Becoming an HIV/AIDS advocate
Problems with stigma sometimes are not helped by information about HIV not taking into
account the views and experiences of HIV-positive people: Getting involved in advocacy
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activities, which is about getting your voice heard as a young person living with HIV, can help
you to challenge stigma with other people who may have been through similar experiences.
Sharing your story or posting about how HIV affects you on Face book, twitter, LinkedIn inter
alia can link you to other people who understand that the issues that you discuss are important.
HIV is now considered to be a 'long-term chronic condition'. This is something that affects your
health over a long time.
Many HIV-positive people have a long life expectancy. With this in mind, it is really important
to keep thinking about your long-term goals, whether you are looking to join a university,
travelling, making new friends, getting an amazing job, seeing yourself married, shifting where
you grew up, or living somewhere else, or having children? (This IS possible without passing
HIV to your children or your partner). It is good to chat to your healthcare worker about what is
most important to YOU about YOUR FUTURE so that he or she can help you to make sure that
HIV does not hold you back! Living with HIV can be challenging, but it does not have to take
over your life. It is a good idea to identify the people that you know you can go to for support –
for some that is family, for others it could be a youth worker, somebody from your religious or
faith community, a friend or a teacher.
For many young people, your health worker or doctor is the main source of support. Ask your
healthcare provider – they may know of things like this in your country or area. A good way to
start feeling connected to people going through similar things to you is by reading about the
experiences of other HIV-positive young people. The really important thing is to make sure that
you feel able to take your medication properly. If you find this really hard, you are not alone –
and sometimes healthcare staff can make things worse by making you feel rubbish for ‗doing
badly‘ with your medication. Many HIV-positive young people do not experience problems with
taking medication – they find it easy to remember, they feel no side-effects and they have no
trouble working out how to fit taking their medication into their daily routine. Other people have
found it difficult because:
They experience side-effects like nausea
They find that pills are difficult to swallow/medicines can taste horrible!
They find that practical things like carrying medication, or water to swallow them, can be
hard to remember.
It is your healthcare provider‘s job to help you to do this. Try to explain any difficulties you have
faced with your medicine – even if it is something like staying over at a friend‘s house and
taking the medication without them seeing - they may be able to give you some good advice.
When you first start taking your medication it can be good to practice with swallowing sweets. It
can be difficult to look into the future and think beyond today – but focusing on your long-term
goals can help you to feel positive about taking your medication – remember that you have got
LOADS of potential. If you have trouble remembering to take your medication, it is a good idea
to ask a friend, family member or boyfriend/girlfriend to help you to remember. Some young
people find that the healthcare staffs they get seen by are always different, and this makes it
harder to build a positive relationship with them. See if you can request to see a particular person
that you like. Try to find a service you feel that the people there truly respect you. Ask at your
health center if there is a way of giving your health worker feedback on how well they
communicate with you! When you grow up with HIV, it can be really hard to change from child
health-services to adult-services. You may have had a nurse that you have known for a long time
and are close to. Sometimes the added responsibility of taking care of your own medication can
be hard. You may want to ask for extra support at this time, particularly with remembering to
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take your medication or coping with the general stresses of life. Try to find out how other people
have coped with this, if you are at a peer support group get advice from others. Never give up on
your medication!
Relationships and HIV-positive Young People
Many young people consider whether they would like to be in a relationship, and if so, what
makes a good relationship? Living with HIV does NOT mean that you cannot be in a
relationship. If somebody is unable to look beyond your status, they are not a great person to get
close to anyway. Whilst everyone has the right to choose who they have sex with, nobody has
the right to make you feel bad because of your HIV status. Sometimes you may feel that you are
with someone and it is not right. It can be hard to end something that is not right, especially if
you have strong feelings for a person, or if they are supportive of your HIV status. If you rely a
lot on your boyfriend or girlfriend for support, make sure that you seek out support from another
close friend if a relationship ends. Deciding to tell your partner can involve a lot of the same
considerations as telling a friend.
However, if you are thinking of having sex with a boyfriend/girlfriend, you will need to think
about what to tell them, and how to ensure that you do not transmit HIV. It can be a good idea to
tell them in advance, just in case a condom splits or something happens where HIV could be
transmitted. The difficulty is finding a way to tell them where they will understand the risk, but
do not panic or react badly! Lots of people are happy to be with somebody who is HIV-positive,
but sometimes disclosing your status can lead to regrets… remember that people who react in a
way that makes you feel bad are not necessarily worth your time. If you have a friend who
knows your status, it can be a good idea to plan this process with them and meet up with them
afterwards to chat about how it went.Condoms are GREAT because they stop HIV being passed
on from one person to another. If you want to have sex, or oral sex, you need to know how to use
a condom so as not to transmit HIV. Also, people living with HIV can be at more risk of
catching some STIs, so it is extra important that you use a condom for your own sexual health as
well.
Even if your partner also has HIV, you will still need to use a condom to ensure that you and
your partner don‘t get infected with HIV again, which can cause problems with your treatment.
HIV is more likely to get passed on if you have what‘s called ‗a high viral load‘. This is when
you have a lot of HIV in your body. If you are on HIV treatment, this can make your viral load
lower, which lowers the risk of passing on HIV. If something goes wrong with your condom – it
splits or you forget to use one – there is something that your HIV-negative partner can take to
help prevent them from getting HIV, but they will need to ACT FAST. Many young people who
are HIV-positive find that sex is more enjoyable if their partner knows their status – it helps you
to communicate well if you are open with each other and means that both people can share the
responsibility of safer sex more equally. Many countries have laws that affect people living with
HIV who have sex. Sometimes young people who live with HIV mistakenly believe that it is
completely illegal for them to have sex. However, laws are more likely to be about using
protection or informing your partner about your status.
Make sure you know the law in your country. Some of these laws are based on ignorance, and
can actually increase stigma rather than protecting people. If you feel strongly about this, it is a
good idea to get involved in advocacy activities. You may want to use other types of birth
control to further lower the risk of pregnancy, in case your condom splits. However, some types
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of birth control like the pill do not work with HIV medication, so speak to a health worker about
the best option for you.
Age of consent
There are some important laws regarding sex and young people, and these are usually known as
the age of consent laws. The age of consent is the age at which a young person is legally able to
understand and agree to consensual sex. In most countries, until you reach this age it is illegal for
somebody to have sex with you, however old they may be. Sometimes the law is slightly
different when the partners are of a similar age, but there is usually still a minimum age below
which sex is always illegal. There is no international age of consent and the age when a person is
legally able to consent to sex depends on a country's age of consent laws. Age of consent laws
are usually complex and, in many countries, the legal age to consent to sex is different depending
on certain conditions. These include, but are not limited to:
Male or female
Anal sex
Vaginal sex
Partner age difference
A partner that represents a position of authority
Existing state, territory and federal laws
If partners are married or unmarried
Being aware of global variations in the age of consent is important to avoid breaking the law in
countries that have laws different to your country of residence. Follow the individual links below
for information on the age of consent by country and any specific conditions that modify the age
of consent. Although some young people may feel that they are mature enough to engage in a
sexual relationship, others may lack the emotional development to deal with this or to feel
confident enough to say 'no'. Age of consent laws are there to protect young people from being
sexually exploited by adults. Sex before the age of 15 years and among partners where there is a
large age difference may increase the risk of HIV transmission. If you are a young person, and
you want to find out more, read our page on teens, sex and the law. You might also like to have a
look at our "Am I ready for sex?" Girls and young women who have relationships with men
much older than themselves are said to have a 'sugar daddy', also called a 'silver daddy'.
Boys and young men also have relationships with older women - known as a 'sugar mummy' or
'sugar mamas'. Sugar daddies and sugar mummies are much older than their partners, providing
them with money and gifts in exchange for company and sexual favours. Young men and women
often leave education early, with the belief that their needs will be met by their older partner.
This is common phenomenon in many countries, and where HIV prevalence is high, sex with a
sugar daddy or sugar mummy contributes to new HIV infections amongst young people. You
should always use a condom when having sex. Although it can be difficult to insist on using a
condom, especially if your partner gives you money and gifts, you risk becoming infected with
HIV plus other STI‘s if condoms are not used all the time. Statutory rape is the crime that
someone can be charged with if they have sex with a person who has not reached the age of
consent, but who agrees to have sex. Some countries have different names for this.
Some countries example calls it 'unlawful sexual penetration' or just 'rape'. Sexual abuse is the
term for an adult using their age or authority over a young person to have any type of sexual
contact. There is a difference between this and two young people who are in a consenting
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relationship. If you are a young person involved in an abusive relationship it is important to talk
to someone about this.
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ANTIRETROVIRAL DRUG TREATMENT
This is the main type of treatment for HIV/AIDS. It is not a cure, but it can stop people from
becoming ill for many years. The treatment consists of drugs that have to be taken every day for
the rest of life. The aim of antiretroviral treatment is to keep the amount of HIV in the body at a
low level. This stops any weakening of the immune system and allows it to recover from any
damage that HIV might have caused already. These drugs are often referred to as: antiretroviral
(ARVs), anti-HIV or anti-AIDS drugs. Taking two or more antiretroviral drugs at a time is called
combination therapy. Taking a combination of three or more anti-HIV drugs is sometimes
referred to as Highly Active Antiretroviral Therapy (HAART). If only one drug was taken, HIV
would quickly become resistant to it and the drug would stop working. Taking two or more
antiretroviral at the same time vastly reduces the rate at which resistance would develop, making
treatment more effective in the long term.
At the beginning of treatment, the combination of drugs that a person is given is called first line
therapy. If after a while HIV becomes resistant to this combination, or if side effects are
particularly bad, then a change to second line therapy is usually recommended. Alternative and
complementary medicine is quite popular among people living with HIV. Many HIV positive
people say they feel better after using alternative and complementary medicine, and it is likely
that some of these treatments are indeed beneficial, although unproven medically.Alternative and
complementary medicine is the name generally given to those medical and health care systems,
practices, and products that are not presently considered to be part of conventional medicine.
Well known examples include herbal and other nutritional supplements, acupuncture,
aromatherapy, homeopathy and yoga.
Alternative medicine is used in place of conventional medicine
Complementary medicine is used together with conventional medicine.
In relation to HIV, alternative therapies are most commonly used in areas where it is difficult to
access conventional medicine. In the absence of antiretroviral treatment, you may seek other
ways to delay the onset of AIDS, or to treat opportunistic infections. Traditional healers also
usually provide immediate treatment, whereas clinics may have lengthy waiting lists and tests for
eligibility. Most people living with HIV have ready access to antiretroviral therapy and
conventional treatments for opportunistic infections. Because these treatments are so effective,
there is less demand for alternative HIV medicine, except perhaps for addressing relatively minor
infections, or when antiretroviral treatment cannot any longer be taken, for example because of
drug resistance. Many instead look to complementary medicine as a way to prevent or relieve
AIDS treatment side effects, some of which are not easily treatable with conventional medicine.
The effect of alternative and complementary therapies on HIV/AIDS
Conventional medicine embraces all approaches shown to be safe and effective in rigorous
scientific trials. By definition, complementary and alternative medicine consists of therapies that
are unproven, at least by the standards of Conventional medicine. Given the many therapies in
existence, there can be little doubt that some of them do what they are supposed to. Many others
are likely to be ineffective or can even be harmful. In the absence of good scientific trials, it is
impossible to be certain of which is which. From a scientific point of view, some treatments are
more likely to work than others. Acupuncture, for example, appears to alter brain activity, and
there is quite good evidence that it can help relieve post-operative nausea. Herbal medicines, too,
are scientifically plausible: a number of modern drugs are derived from plants first used
traditionally. Initially, scientists identified one plant extract that acts like an antiretroviral drug; it
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is entirely possible that there are others. There are a number of reasons why complementary and
alternative therapies are delayed from being subjected to go thorough testing. For one thing,
major medical trials are highly expensive; if there is no prospect of a patent then there is less of
an incentive to invest in research. Reliable, ethical trials also require a considerable amount of
expertise. Many scientists with the necessary skills are reluctant to investigate therapies they
think are implausible. Although practitioners of complementary and alternative medicine
generally voice support for scientific research, they are often unwilling to accept negative
findings. At the other end of the scale are therapies that are not considered credible by the
scientific community at large. The most notorious of these is homeopathy. Yet even if a
medicine has no specific effects on an illness, this doesn‘t necessarily mean it is worse than
nothing.
It is widely accepted that patients‘ beliefs about a treatment, and the quality of the doctor-patient
relationship, can influence health outcomes. This is what is known as the placebo effect. ―Is it
possible that the alternative medical community has tended historically to understand something
important about the experience of illness and the ritual of doctor-patient interactions that the rest
of medicine might do well to hear? … The meanings and expectations created by the interactions
of doctors and patients matter physically, not just subjectively.‖ Even if it fails to ease
symptoms, the treatment experience may have non-specific effects such as boosting selfconfidence and relieving anxiety. Group therapies – such as yoga – are particularly good for
meeting new people, who may be able to share knowledge of other treatment options. Some
forms of complementary and alternative medicine can cause harmful side effects. Words like
―natural‖ and ―traditional‖ are certainly no guarantee of safety. Herbal or nutritional therapies
may also interact with other medications, making them less effective or worsening their side
effects. Even if a therapy carries little risk of direct physical harm, it may still turn out to be a
waste of time and money. Relying on alternative medicine instead of scientifically proven
treatment can have very serious consequences. Once HIV has severely weakened the immune
system, antiretroviral drugs are less likely to be life-saving. HIV positive people have a long
history of taking control of their own healthcare decision-making. Those interested in
complementary medicine can take steps to maximize their chances of success.
There are ten questions for assessing a new therapy:
What am I hoping to get out of this therapy?
Do other HIV positive people use it?
Am I able to talk to any of these other people about their experiences?
Is there any research or additional information about this therapy?
What are the side effects, if any?
What sort of commitment do I have to make to use this treatment?
Where can I get this treatment, and will it be regularly available?
How much of this treatment is too much and what are the early signs of taking too much?
Does this treatment interact with anything else I‘m taking?
How much does it cost?
Careful research is needed to answer these questions. Good sources of information include
reference books on complementary medicine (available in many libraries), medical journals, and
the publications of reputable health organizations. As already noted, all forms of complementary
medicine are unproven according to Western conventional medicine; each individual must make
their own assessment of likely risks and benefits based on the available data.
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The most reliable evidence comes from large human trials – preferably randomized trials in
which the treatment is compared to a placebo. Personal testimonies and laboratory findings
should be given less weight, especially if they appear only in promotional material. Anyone who
makes sensational claims (such as being able to cure many unrelated diseases with a single
therapy), or who attacks conventional treatment, is probably best avoided. If you have done your
research and wish to try a complementary therapy, the next step is to talk to your personal doctor
or HIV specialist. This is important because there may be a risk of interactions with other
medications. Some medical doctors are trained in complementary medicine. If your doctor lacks
such expertise then it may be sensible to also find a complementary practitioner, ideally one with
experience in treating people with HIV. Help finding a practitioner may be obtained from your
doctor, the AIDS service organizations. There are many practitioners available; it is worth taking
the time to find one you trust and feel comfortable with. Look for experience, qualifications and
references you can verify. When purchasing herbal medicine or nutritional supplement, try to
choose a reputable seller and manufacturer. Large, long-established companies are generally the
most trustworthy because they have more to lose from selling poor quality goods. If possible,
look for a company that submits its products for independent quality testing. Having started a
new treatment, it is a good idea to keep a diary of your symptoms. This helps to assess whether
the therapy is having the desired outcome, or whether it may be causing unwanted side effects.
Starting, monitoring & switching HIV treatment
Treatment of HIV is a balance of attitude and action. Learning how therapies work, possible side
effects and figuring out if you are ready can help when talking with your doctor. Until you need
medication, eating well, getting lots of rest and reducing stress go a long way. If you use drugs,
making it safer will help you stay healthy. There is no cure for AIDS, but there are a number of
different drugs that slow its progress. These drugs are called antiretroviral (shortened to ART).
ART can improve the quality and length of your life as well. Deciding when to start treatment
depends on the stage of HIV infection which is determined through clinical tests. Once it is
decided you should start treatment, a variety of factors must be considered when choosing the
right combination of drugs to use. When starting treatment, the effectiveness of your treatment
must be monitored so that if necessary, the treatment regimen can be switched. In order to decide
whether or not to start treatment, the clinical tests that need to be carried out will determine the
stage of HIV infection and your readiness for drug treatment, which may depend on a variety of
factors such as your medical history. Once you are initiated on HIV treatment, it is essential that
you adhere to your treatment. You will need to be monitored by a doctor to make sure that the
treatment is working for you.
The term adherence means taking drugs exactly as described. This includes taking all your
medication at the right time and exactly as the directions state. It also means ensuring that there
will be no interactions with other drugs being taken. Anything below 95 percent adherence may
increase viral load and drug resistance. Therefore adherence to antiretroviral treatment is
extremely important. This means missing no more than one dose a month, if taking antiretroviral
drug treatment once a day.
Viral load monitoring
Viral load refers to the amount of HIV in the blood. If the viral load is high, T-helper cells tend
to be destroyed more quickly. Therefore, the aim of antiretroviral treatment is to keep the viral
load as low as possible. In places where it is available, a viral load test is carried out shortly after
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antiretroviral treatment is started. With effective treatment, the viral load drops to undetectable
level – below 50 copies/ml. Mostly this happens within 24 weeks of starting treatment, but for
some people, it can take up to 3-6 months. On the other hand, some people never reach
undetectable level. Viral load tests are then carried out every few months. As some viral load
tests produce slightly different results on the same sample of blood, the results are monitored
over a period of time. Some side effects occur when the drugs affect the body in ways other than
those intended. Most of the antiretroviral drugs have known side effects, but this does not mean
that everyone who takes the drugs will experience them. You may only experience mild side
effects and find yourself easily manageable. But for some people the side effects occur so
strongly that they have to consider alternative drugs.
Immune Reconstitution Inflammatory Syndrome (IRIS)
IRIS is an illness that occurs for a small number of patients soon after treatment is started. It is
caused by an excessive response by the recovering immune system to opportunistic infections
that were already present, but were previously dormant and not producing symptoms. Although
the symptoms of IRIS are often mild, occasionally they can be life threatening. Generally those
with a severely damaged immune system before starting antiretroviral treatment are more at risk
of developing IRIS. IRIS does not indicate that treatment is failing. Usually the best response to
IRIS is to continue treatment; the symptoms normally disappear within a few weeks. In cases
involving severe opportunistic infections, such as cryptococcal meningitis or tuberculosis, it may
be necessary to stop antiretroviral therapy whilst the infection is treated. A change of treatment is
needed when drugs fail to slow down the replication of the virus in the body. This can occur as a
result of drug resistance, poor adherence, poor drug absorption or a weak combination of drugs.
Increased viral load or HIV-related illnesses are signs of treatment failure. If viral load testing is
available, change as soon as the viral load starts to rise, although this could mean running out of
treatment options more quickly. And also monitor the trend of the viral load before making a
decision to change. However, this approach may increase the risk of developing resistance to
certain drugs, which can limit future treatment options. Antiretroviral drugs slow the replication
of HIV in the body.
However the drugs cannot stop the replication completely, so some HIV is able to survive
despite ongoing HIV treatment. When HIV replicates it often makes slight mistakes, so each new
generation of HIV differs slightly from the one before. These tiny differences in the structure of
HIV are called mutations. Some of the mutations occur in the parts of HIV that are targeted by
antiretroviral drugs. So although there is some HIV that continues to be attacked by the drugs,
there are other strains of HIV that are less likely to be affected. This HIV is called drug resistant
HIV, and it is able to replicate while unaffected by the drugs. As soon as drug resistant HIV is
introduced in the body, the amount of HIV in the blood rises and the risk of becoming ill
increases. Drug resistance is one of the main reasons why antiretroviral treatment fails. If
resistance develops, usually the drug regimen needs to be changed.
The HIV virus is sloppy when it makes copies of itself. Many new copies of HIV are slightly
different from the original (mutations). Some mutations can multiply easily even though you are
taking drugs that stop "normal" HIV. This is called "developing resistance" to the drugs. If the
virus develops resistance, it will multiply faster and your HIV disease will probably get worse.
Sometimes, when HIV becomes resistant to a drug you are taking, it will also be resistant to
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other ARVs -- even if you have not used them yet. This is called "cross-resistance." Many ARVs
are at least partly cross-resistant. If the virus develops resistance to a drug, you might not be able
to use any other drugs of the same type. To avoid using up treatment options, take all your
medications according to instructions. There are certain things that can be done to reduce the risk
of developing drug resistant HIV.
Ensuring that the drug combination is strong to begin with will lessen the risk of
resistance developing. This usually means taking a combination of 3 or 4 drugs.
Taking medication exactly as prescribed is a very important part of avoiding resistance.
Missing doses or not taking them on time lowers the amount of antiretroviral chemicals
in the body, which means the virus, is not properly suppressed. The virus is then able to
replicate faster, increasing the chance of it becoming resistant.
Regular viral load testing is also important as the results can indicate whether a drug
resistant strain of HIV is developing. If the drug combination is working, the viral load
should be undetectable. An increasing viral load can be a sign of growing drug resistance.
Salvage treatment
Salvage therapy is the term often used to describe the treatment for those who are resistant to
drugs in the three original drug classes. In this situation it may be difficult to find a drug regimen
that suppresses the viral load to undetectable level. Many people start their salvage therapy with
a much higher viral load than when they started previous treatments. This puts more pressure on
the new combination to work. Each combination used lessens the chance of maintaining a low
viral load because of the possibility of developing resistance to the drugs. The choice of new
treatment should always depend on what caused the previous one to fail. Although antiretroviral
drugs suppress HIV they do not eliminate the risk of HIV transmission completely, even when
the viral load is undetectable. Antiretroviral treatment cannot make HIV disappear from the
blood completely. Unprotected sex between two HIV positive people is not a risk-free activity;
there are many different strains of HIV and it is possible to become infected with a different
strain more than once, which can complicate treatment. If taking antiretroviral drugs, you should
take as much care to minimize the risk of HIV transmission as you did before starting the
treatment.
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THE LINK BETWEEN DRUGS AND HIV
Recreational drug use could lead someone to practice risky sex which leads them to becoming
HIV positive, or they may use alcohol or drugs to deal with the stress of being HIV positive.
People have their own individual reasons for taking recreational drugs. This may be to relax, to
get excited, to enhance sexual pleasure or merely as a way of giving in to peer pressure. It is
important to remember that - apart from nicotine, alcohol and caffeine - virtually all recreational
drugs are harmful to our health. Once inside the body, most drugs go into your blood stream,
which takes the drug to your brain. There it triggers different responses, changing heartbeat,
blood pressure, liver or kidney function, mood and your vision, hearing or feeling things.
Reactions differ from person to person but you may be much more likely to take sexual risks that
you would usually avoid. If you are HIV positive and you are on combination therapy, then you
already have a constant amount of prescription drugs in your system. Adding recreational drugs
to that carries risks - your body is already processing your HIV medication so it cannot process
recreational drugs as easily as a person not on HIV medication. As your liver tries to deal with
both your HIV drugs and any other drugs you have taken, there can be a buildup of the
recreational drugs. Another danger of taking drugs when on HIV medication is you are more
likely to forget taking your medication most appropriately – or at all. It is always advisable to
check with your HIV doctor.
Risky combinations
There are possible interactions between recreational drugs (including alcohol) and HIV
medication - it is always safest to let your doctor or nurse know about any recreational drugs you
use. These can sometimes lead to fatal overdoses, as one drug acts with another to increase its
levels in your blood. The risk is greatest when the body (in particular the liver) processes
recreational drugs and HIV medication in the same way. The risk of an interaction could be
higher when you have just started to take HIV medication. In these first weeks and months the
body is getting used to processing them, so adding a recreational drug at this time could have
added risks. This is an introduction to the most common interactions well known about, but it is
by no means exhaustive. If you are using recreational drugs, it is advisable to tell your HIV
doctor who will explain any of the risks to you. Do not be nervous about bringing up the subject,
your doctor will be used to talking about recreational drug use with patients and would much
rather know about it in case it affects your HIV treatment.
Drug use and mental health
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If you are HIV positive, you are more likely to contend with mental health issues at some point
in your life than someone without the virus. Mental health' means your overall well-being, such
as your emotions and moods, and can often be overlooked when you are busy trying to stay
physically healthy. Mental health issues can be further complicated when we add drugs into the
mix. For example, if you suffer from anxiety or depression, using recreational drugs puts you at
higher risk of these getting worse or developing more serious mental health problems. If you are
prone to mental health problems, using drugs can trigger them; but you might not realize you are
vulnerable at the time and only discover this when drugs trigger a problem. It is also important to
keep in mind that the side-effects of some HIV medication can lead to depression.
The heavier and longer your drug use, the more likely you are to have mental health problems
which can result in even more dangerous problems, such as forgetting to take your HIV
medication or having very risky sex. Serious mental illness like psychosis (i.e. not knowing what
is real and what is not) can be the result of heavy use of some drugs. It is worth remembering
that alcohol is a depressant, so it makes someone with depression feel worse, especially if they
are a long term, heavy drinker. Early diagnosis of a mental health problem is essential to help
you get the best treatment and attention - particularly if you are HIV positive and using drugs.
Remember that sometimes your best source of help and support could be closer than you think –
talk to a trusted friend or family member about what you are experiencing. They can also support
you in looking for professional help. Some anti-depressants can interact dangerously with some
recreational drugs, boosting levels of the recreational drug in the body to dangerous levels.
A potentially life-threatening reaction called Serotonin Syndrome can also occur, where the brain
releases too much of its ‗feel good‘ chemical serotonin. Symptoms include a fast heartbeat,
sweating, muscle spasms, shivers, high temperature, feeling agitated and being unable to sleep.
Urgent medical help is required in this situation. If you are prescribed anti-depressants, check
with a doctor about any possible interactions with recreational drugs you may take. The doctor
may be able to give you a different type of anti-depressant, one less likely to have a bad reaction.
Problematic drug use
'Problematic' drug use is when you become dependent upon a drug and cannot function properly
without it, or it starts negatively impacting areas of your personal life such as finances, sex or
relationships. It might be time to stop if any of the following apply to you:
You use more than you planned and for longer
You feel guilty about your drug use
You need to take or drink more and more to get the same effect
You spend a lot of time looking for and taking drugs
You cannot enjoy clubbing or sex without drugs.
You stand a better chance of controlling your drug or alcohol use if you first think about what
you do and why, and the ups and downs of your drug use. It can be hard to change but there are
plenty of places you can get help from.
Here are some ten achievable steps to help you move away from problematic drug use:
Make a note of when, where and why you take drugs (and who with).
Ask friends for help, e.g. not to offer or use drugs or talk about them in front of you.
Set yourself small, achievable goals and accept that any change will come one step at a
time.
Be prepared for withdrawal symptoms (trouble sleeping, irritability, boredom, mood
swings) – these will ease over time.
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Get rid of drugs and drug-related objects - having them around can act as a trigger to use.
If cutting down, put them out of easy reach.
Avoid things that trigger your use (states of mind, places, people, objects, types of sex
etc.).
Stay busy – boredom is your biggest enemy. Overcome it with anything not linked to
drugs (exercise, hobbies, shopping, family, friends who do not use drugs).
Stay active – exercise (swimming, walking, and gym) gives you a natural high
(endorphins), relieves boredom, gives you energy and boosts the immune system.
Take care of your body – you need sleep, healthy food and to avoid stimulants like
caffeine, cola and energy drinks.
Get support – you do not have to do it on your own. Ask at your clinic for a counseling
referral or check out the links to the right for more information.
It is also worth remembering that, while not illegal, drinking alcohol and smoking to excess can
have serious health implications. Being HIV positive means that your body requires extra
support. Cutting back – or quitting – smoking or drinking can be a very healthy step.
Sleep and HIV
A positive status and any HIV medication may affect your sleeping pattern. A good night‘s sleep
is essential for physical and mental health and if you are not getting enough it can make you feel
pretty bad. There is no magic number for the amount of sleep we need as we are all different, but
most adults sleep for an average of seven to nine hours per night. You should listen to your body
to find out how much sleep is good for you. If you are not getting enough sleep you will feel
slow and tired all day, perhaps moody and you won‘t be able to perform as well at anything that
you need to use your brain for. We build up a ‗sleep debt‘ when we do not get enough sleep over
a period of time and that this can lead to serious problems when carrying out normal day to day
tasks. Insomnia is classified as a difficulty in getting to sleep and/or staying asleep.
Alongside fatigue, which you will feel if you often do not get enough sleep, insomnia is common
in HIV positive people throughout the course of the virus. If you have always found it difficult to
sleep, HIV could exacerbate the problem - so talk about this with your doctor.
Depression and anxiety can also affect your ability to sleep. Sleeping problems could also be a
side effect of your HIV medication, so it is worth talking to your doctor if you believe that this is
the case. If bothered with a poor sleep, always try a few simple things for self-benefit:
Is your bed comfortable? Many of us find that it's best if it is not too soft and not too hard
Is your bedroom with the right temperature and not too noisy or light?
Only go to bed when you are sleepy
Avoid caffeine, rich food, smoking, exercise or alcohol just before you go to bed
Only use your bed for sleeping and sex: don‘t watch TV or eat in bed.
By creating a space you can unwind and relax in, you are more likely to be able to fall asleep
naturally in it. Sleeping tablets can be taken a lot but some of them can be addictive and can
leave you tired and irritable the next day. They may lose their effect after some time, and should
only be used for a few nights at a time.
Medications and sleep
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HIV medications are more effective at controlling the virus and can help live a long, fulfilling
life. However, some of the drugs may cause side-effects. Adhering to your prescribed regimen is
extremely important but some people stop taking them because of the side effects. If you ever
think you are at risk of stopping your medication, speak to your doctor as soon as possible, as
changing medications could be a solution to the problem. One of the more common side effects
with many HIV drugs is problems with sleep. Some drugs can cause dizziness and nausea and so
you might decide to take them just before you go to bed. For many people this makes sense but if
the drugs begin to interfere with your sleeping pattern then it is worth exploring options to tackle
this. Insomnia can mean not being able to get to sleep, having trouble staying asleep or waking
up too early in the morning. It is important to address these symptoms, as getting a good night‘s
sleep is essential to long-term health as an HIV positive person. The amount of sleep that we
need is unique – each of us is different, so just try to get as much sleep as you had before you
began taking HIV medication. There are some simple steps you can take to help improve your
sleep pattern:
exercise regularly
avoid caffeine, alcohol or nicotine before going to bed
keep a regular sleep schedule
if you have been prescribed medicine to help you sleep, use it only when it is really
needed
don‘t go to bed hungry
eat eggs, cod, parmesan cheese or sesame seeds in your evening meal – they contain the
amino acid tryptophan, which can help aid sleep
Avoid napping during daytime.
Some HIV drugs are well-known for having sleep-related side effects. If you take any drug and
notice sleep problems, talk to your doctor. Sleep disturbances could also be a side effect of
depression. If you are feeling a little low, now is a good time to discuss both problems with your
health care team.
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BASIC THEORIES AND ORIGIN OF HIV/AIDS
Various alternate theories and other such hypotheses have arisen to speculate about the origins of
HIV/AIDS. These alternative ideas range from suggestions that AIDS was the inadvertent result
of experiments in the development of vaccines, to claims that HIV was developed by scientists
working for the U.S. government. While a few reputable mainstream scientists once investigated
some of these theories as reasonable hypotheses, this is no longer the case, as continuing
research has invalidated the alternative ideas. Where did HIV originate from? HIV could have
originated from an African green monkey. Purportedly the monkey virus "jumped species" and
entered the black population. From there it migrated to Haiti and Manhattan. After the virus
entered the black heterosexual population in the late 1970s, it rapidly spread to millions of blacks
because of transfusions with HIV-infected blood, dirty needles, promiscuity and genital ulcers —
or so .
Putting aside the aspect of a monkey story, AIDS is biological warfare. AIDS has nothing to do
with green monkeys, homosexuality, drug addiction, genital ulcerations, anal sex or promiscuity,
but it had to do with scientists experimenting on blacks: in short, AIDS is genocide. HIV is a
manufactured virus genetically-engineered to kill off certain people.AIDS is an ethno-specific
bio weapon designed in a laboratory to infect some people. Despite the general acceptance that
HIV came from monkeys and the rain forest, there is no scientific evidence to prove that HIV
and AIDS originated in Africa. What is true is that the first AIDS cases were uncovered in the
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U.S. in 1979, around the same time that AIDS cases were discovered in Africa. In addition, no
stored African tissue from the 1970s tests positive for HIV.
The Gay Hepatitis-B vaccine experiment
Conveniently lost in the history of AIDS is the gay Hepatitis-B vaccine experiment that
immediately preceded the decimation of gay Americans. A "cohort" of over a thousand young
gays was injected with the vaccine at the New York Blood Center in Manhattan during the
period November 1978 to October 1979.Similar gay experiments were conducted in San
Francisco, Los Angeles, Denver, St. Louis, and Chicago, beginning in 1980. The AIDS epidemic
broke out shortly thereafter. The experiment was run by Wolf Szmuness, a Polish Jew born in
1919. He was a young medical student in eastern Poland when the Nazis invaded the country in
1939. His entire family perished in the Holocaust. When Poland was partitioned, Szmuness was
taken prisoner and sent to Siberia. After the war, he was allowed to finish medical school in
Tomsk in central Russia. He married a Russian woman, had a daughter, and in 1959 was allowed
to return to Poland where he became an expert in hepatitis. Later on, Szmuness defected from
Poland with his family in 1969, arriving penniless in New York with $15 in his pocket. Through
scientific connections he found work as a laboratory technician at the New York Blood Center.
Within a few years he was given his own lab at the center and was also appointed Professor of
Public Health at Columbia University. By the mid-1970s, Szmuness was a world authority on
hepatitis, and was invited back to Moscow in 1975 to give a scientific presentation.
As a defector he was terrified to set foot back in the Soviet Union, but his colleagues assured him
he would have the full protection of the U.S. State Department. His return to Russia was a
scientific triumph. In the late 1970s, Wolf Szmuness was awarded millions of dollars to
undertake the most important mission of his life: the Hepatitis-B vaccine experiment. Szmuness
specifically wanted to use gay men to avoid serious legal and logistical problems. For his study
he did not want monogamous men, or men with lovers. He chose only healthy, young,
responsible, intelligent, and primarily white homosexuals. The experiment was costly and he did
not want any uncooperative or hard-to-find gays messing up his experiment. Involved in the
experiment were the Centers for Disease Control, the National Institutes of Health, the National
Institute of Allergy and Infectious Diseases, Abbott Laboratories, and Merck, Sharp &Dohme.
Szmuness‘ experiment was hugely successful, and his vaccine was hailed as having tremendous
global implications.
Three months after the experiment began; the first cases of AIDS reported to the Center for
Disease Control appeared in young gay men in Manhattan in 1979. The first San Francisco AIDS
case appeared in that city in September 1980, six months after the Hepatitis-B experiment started
there. In June 1981 the AIDS epidemic became "official." Were gay men given experimental
vaccines contaminated with the AIDS virus? The US government says no, but government
agencies have a long history of covert and unethical medical experimentation, particularly with
minorities. Was it simply a quirk of nature that a virus "out of Africa" would suddenly decimate
the most hated minority in America? Why did the U.S. government choose Wolf Szmuness, a
Soviet-trained doctor and a recent American immigrant to head this dangerous experiment?
Literally speaking, Szmuness had a painful life. Confined as a political prisoner in Siberia during
World War II, he was repeatedly interrogated and beaten by the Russian forces for refusing to
cooperate in spy activities. When he could not be broken, they warned him: "Say nothing of this
to anyone, but remember. We will reach you anywhere in the world. No matter where you go, no
matter where you try to hide, you will never be out of our grasp." The experimental Hepatitis-B
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vaccine was primarily manufactured by Merck. However, during the experiment Szmuness was
concerned about possible vaccine contamination. It was no theoretical fear, contamination
having been suspected in one vaccine batch made by the National Institutes of Health, though
never in Merck‘s. After the Hepatitis-B experiment ended, Szmuness insisted that all thirteen
thousand blood specimens donated by gay men be retained at the Blood Center for future use.
Due to space requirements, it is highly unusual for any laboratory to retain so many old blood
specimens.
However, several years later when this blood was retested for the presence of HIV antibodies, th
US government epidemiologists were able to detect the "introduction" and the spread of HIV
into the gay community. When asked why he was keeping so many vials of blood, Szmuness
replied, "Because one day another disease may erupt and we shall need this material.‖ A few
months after the Hepatitis-B experiment began at the Center, the first AIDS cases began to
appear in gay men living in Manhattan. And the retesting of gay blood at the Blood Center
proved that HIV was first introduced into the gay population of New York City sometime around
1978-1979, the same year Szmuness‘ gay Hepatitis-B experiment began. Was Szmuness psychic
in his prediction that a new disease would appear in the gay community? Or did he actually
know or suspect that a new, deadly virus was being introduced into the gay volunteers?
Unfortunately, the answers to these questions can only be summarized by an intellectual mind. In
June 1982 Szmuness died of lung cancer. In his eulogy, Aaron Kellner of the Blood Center
wrote: "It is the rare physician who, like Wolf Szmuness, is given the grace to touch the lives of
billions of people; those living on this planet and generations yet unborn." And indeed,
HIV/AIDS continues to touch billions of people‘s lives from generation to generation.
The contaminated vaccine meant for Africans
Was HIV introduced into millions of Africans in the late 1970s during the smallpox vaccine
eradication programs sponsored by the World Health Organization? It is known that animal and
human cells harbor all sorts of viruses, including viruses not yet discovered, and animal tissue
cell cultures are often used in the manufacture of viral vaccines. Therefore, the possibility of
vaccine contamination with an animal virus is a constant danger in the manufacture of vaccines.
Despite the most meticulous precautions in production, contaminating animal viruses are known
to survive the vaccine process. For example, during the 1950s, millions of people were injected
with polio vaccines contaminated with "SV-40", a cancer-causing green monkey virus. Such
vaccine contamination problems are largely kept hidden from the public. Yet in spite of the
known danger, drug companies and physicians always pooh-pooh any suggestion that AIDS
could have arisen from animal virus-contaminated vaccines.Animal cancer viruses are also
contained in fetal calf serum, a serum commonly used as a laboratory nutrient to feed animal and
human tissue cell cultures. Viruses in calf serum can be carried over as contaminants into the
final vaccine product. The problem of vaccine contamination by fetal calf serum and its
relationship to AIDS is the subject of concern. Bovine visna contamination of laboratory-used
fetal bovine serum may cause AIDS. Bovine visna virus is similar in appearance to HIV. The
seriousness of this becomes apparent when we consider the manufacture of vaccines requires the
growth of virus in cell cultures using fetal calf serum in the growth medium.
The contamination of vaccines with adventitious viruses has been of concern for many years and
the presence of virus-like structures in ‗virus-screened‘ bovine serum has been reported. It seems
absolutely vital that all vaccines are screened for HIV prior to use and that bovine visna virus is
further investigated as to its relationship to HIV and its possible causal role in progression
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towards AIDS. Millions of African blacks reportedly got infected with HIV. This large number
could never have been infected by the simple act of a monkey virus "jumping" over to infect one
African in the late 1970s. If that were the case, why don‘t we now have millions of AIDS cases
in the U.S.? One logical explanation for the millions of Africans infected is that the vaccines
used in the World Health Organization‘s mass inoculation programs were contaminated. Was the
contamination accidental or deliberate? It is well-known in vaccine circles that the vaccinia
(cowpox) virus used in the manufacture of the smallpox vaccine works well in genetic
engineering. It is possible to splice genes coding for the surface coats of other viruses, such as
influenza, hepatitis, and rabies into vaccinia virus DNA. The result: a ‗broad spectrum‘ vaccine
with a coat of many colors.
In 1985, the Russians caused an international furore by claiming that AIDS was caused by
experiments carried out in the USA as part of the development of new biological weapons.
Responding to this Soviet accusation, Pillar and Yamamoto admit that "although no evidence has
been presented to support this claim, manipulating genes to defeat the body‘s immune system is
quite feasible." During the years 1966-1977, the WHO utilized "200,000 people in forty
countries — most of them non doctors trained by seven hundred doctors and health professionals
from over seventy participating countries — spent $300 million, and used forty million
bifurcated vaccinating needles to administer 24,000 million (2.4 billion) doses of smallpox
vaccine."On May 11, 1987, The London Times, one of the world‘s most respected newspapers,
published a front-page story entitled "Smallpox vaccine triggered AIDS virus." The story
suggests that African AIDS is a direct outgrowth of the WHO smallpox eradication program.
The smallpox vaccine allegedly awakened a "dormant" AIDS virus infection in the black
population. Robert Gallo, the co-discoverer of HIV, said, "The link between the WHO program
and the epidemic is an interesting and important hypothesis. I cannot say that it actually
happened, but I have been saying for some years that the use of live vaccines such as that used
for smallpox can activate a dormant infection such as HIV (the AIDS virus)." The Times story is
one of the most important stories ever printed on the AIDS epidemic; yet the story was killed and
never appeared in any major U.S. newspaper or magazine.
Despite covert human experimentation, vaccine contamination problems, and the genetic
engineering of new and highly dangerous viruses, the medical establishment ignored the AIDS
bio-warfare issue.
For example, in the prestigious British Medical Journal (May 13, 1989), Myra McClure and
Thomas Schultz wrote a paper on the "Origin of HIV" and quickly disposed of the idea that
AIDS is connected to germ warfare. They simply state: "Lack of supporting evidence precludes
serious discussion of such a bizarre hypothesis. This review deals with the theories on the origin
of HIV that are scientifically plausible." Thus, medical science ignores evidence suggesting
AIDS originated as a secret experiment.
Most physicians and microbiologists steadfastly hold on to the illogical and improbable green
monkey theory of AIDS.
And the major media remain silent, often dismissing the bio-warfare theory as communist
propaganda of the most malicious sort. Forgotten is the connection between the National
Academy of Sciences and the military bio-warfare establishment in the development of
biological weapons for mass killings.
Creation of a super germ
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A decade before the first cases of AIDS, Dr. Donald M. MacArthur, a spokesman for the U.S.
Department of Defense, told a Congressional Hearing that a "super germ" could be developed as
part of our experimental bio-warfare program. This genetically engineered germ would be very
different from any previous microbe known to mankind. The agent would be a highly effective
killing agent because the immune system would be powerless against this super-microbe
(Testimony before a Subcommittee of the Committee on Appropriations, House of
Representatives, Department of Defense Appropriations for 1970, dated July 1, 1969). A
transcript of this meeting on "Synthetic Biological Agents" records the following comments of
Dr. MacArthur:
1. All biological agents up to the present time are representatives of naturally occurring
disease, and thus are known by scientists throughout the world. They are easily available
to qualified scientists for research, either for offensive or defensive purposes.
2. Within the next 5 to 10 years, it would probably be possible to make a new infective
microorganism which could differ in certain important aspects from any known diseasecausing organisms. Most important of these is that it might be refractory to the
immunological and therapeutic processes upon which we depend to maintain our relative
freedom from infectious disease.
3. A research program to explore the feasibility of this could be completed in approximately
5 years at a total cost of $10 million.
4. It would be very difficult to establish such a program. Molecular biology is a relatively
new science. There are not many competent scientists in the field, almost all are in
university laboratories, and they are generally adequately supported from sources other
than the Department of Defense.
However, it was considered possible to initiate an adequate program through the National
Academy of Sciences — National Research Council (NAS-NRC). The matter was discussed
with the NAS-NRC, and tentative plans were made to initiate the program. However, decreasing
funds in CB (chemical/biological) research, growing criticism of the CB program, and our
reluctance to involve the NAS-NRC in such a controversial endeavor have led us to postpone it
for the past two years. It is a highly controversial issue and there are many who believe such
research should not be undertaken lest it lead to yet another method of massive killing of large
populations... Should an enemy develop it, there is little doubt that it is an important area of
potential military technological inferiority in which there is no adequate research program. Was
HIV or other so-called ―emerging viruses such as Ebola and Marburg viruses, created in biowarfare laboratories during the 1970s? During the 1970s, the U.S. Army‘s bio-warfare program
intensified, particularly in the area of DNA and gene splicing research. Renouncing germ
warfare except for "medical defensive research," President Richard Nixon in 1971 ordered that a
major part of the Army‘s bio-warfare research be transferred over to the National Cancer
Institute (where HIV would be discovered a decade later by Gallo). That same year, Nixon also
initiated his famous War on Cancer, and offensive bio-warfare research (particularly genetic
engineering of viruses) continued under the umbrella of orthodox cancer research. Cancer
virologists learned "to jump" animal cancer viruses from one species of animal to another.
Chicken viruses were put into lamb kidney cells; baboon viruses were spliced into human cancer
cells; the combinations were endless.
In due process, deadly man-made viruses were developed, and new forms of cancer,
immunodeficiency, and opportunistic infections were produced when these viruses were forced
or adapted into laboratory animals and into human tissue cell cultures. As predicted by the bio161
warfare experts, new cancer-causing monster viruses were created that had a deadly effect on the
immune system. In one government-sponsored experiment reported in 1974, newborn
chimpanzees were taken away from their mothers at birth and weaned on milk obtained from
virus-infected cows. Some of the chimps sickened and died with two new diseases that had never
been observed in chimps. The first was a parasitic pneumonia known as Pneumocystis Carinii
pneumonia (later known as AIDS); the second was leukemia.
Monkey business
Most people still believe the green monkey story; and AIDS educators teach that HIV originated
in Africa. However, a few cracks in the monkey theory appear in the print. A story entitled
"Research refutes idea that human AIDS virus originated in monkey," appeared in the Los
Angeles Times (June 2, 1988). In the process of decoding the genetic structure of the monkey
virus and the human AIDS virus, Japanese molecular biologists discovered that the gene
sequences of the two viruses differed by more than 50% — indicating absolutely no genetic
relationship between the green monkey virus and HIV.
The Japanese investigators specifically criticized Myron Essex and Phyllis Kanki of Harvard
Medical School, who "discovered" a second AIDS virus in African green monkeys that was
widely heralded in the media. Essex and Kanki‘s "second" AIDS virus was later proven to be a
contaminant monkey virus traced back to the Harvard researchers own laboratory.
More than a decade earlier, in 1975, Gallo reported the "discovery" of a "new" and "human" HL23 virus he cultured from human leukemia cells. Eventually the virus was proven to be three
contaminating ape viruses (gibbon-ape virus, simian sarcoma virus, and baboon endogenous
virus). Gallo claimed he had no idea how these animal viruses contaminated his research. If HIV
is not related to a green monkey virus, what is its origin? On November 13, 1988, The Orange
County Register devoted an entire section of the newspaper to AIDS in Africa. Several African
officials were interviewed; all were adamant that AIDS did not originate in Africa. The theory
"is false and has never been scientifically proved, so why should Africa be the scapegoat?"
declared Dr. DidaceNzaramba, director of the AIDS prevention program in Rwanda.
The Register commented: From early on, scientists have speculated that the disease might have
begun in Africa. Researchers in Africa tested old blood samples and said they found HIVinfected serum that went back years.
In 1985, Harvard researchers, Phyllis Kanki and Myron Essex, announced the discovery of a new
virus isolated in green monkeys that seemed similar to HIV. Eventually, researchers concluded
that early blood tests used in Africa were not reliable, and Kanki and Essex said their blood tests
probably had been contaminated and that their results were invalid. But the perception of an
African link was established.
Media disinformation
With the publication of And the Band Played On in 1987, the media became obsessed with
author Randy Shilts‘ "Patient Zero" story. In the popular, award-winning book, a young
Canadian airline steward named GaetonDugas is portrayed as the promiscuous gay man "who
brought the AIDS virus from Paris and ignited the epidemic in North America." Shilts, who later
died of AIDS, never explained where or how Dugas got his infection. After a year of swollen
lymph nodes and a rash, Dugas was finally diagnosed with AIDS-associated "gay cancer" in
June 1980 in New York City. What Shilts probably did not know is that when Dugas was
diagnosed in 1980, over twenty percent of the Manhattan gays in the Hepatitis-B experiment
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were HIV-positive. This 20% infection rate was discovered after the HIV blood test became
available in 1985, and after the stored blood at the New York Blood Center was retested for HIV
antibodies.
Remarkably, these gay men had the highest recorded incidence of HIV anywhere in the world for
that time! Even in African populations, where AIDS had been theorized to exist for decades, or
even millennia, there were never reports of such a high incidence of HIV in 1980.Shilts‘
sensational Patient Zero story quickly became "fact." Even the AMA-sponsored American
Medical News (October 23, 1987) fell for the ludicrous story, claiming that Dugas "may have
brought AIDS to the United States." The media continued to promote unlikely stories about the
origin of AIDS, always avoiding discussion of the idea that HIV came out of a laboratory, and
always pointed the finger to black Africa.
In late 1987, the media widely reported an "old AIDS case" dating back to 1968. DNA testing of
the blood and tissue was reported as HIV-positive. For the last year of his life, "Robert", a 15year-old black boy from St. Louis, wasted away with a bizarre disease that severely bloated his
legs and genitalia. His sexual preference was unknown, but his doctors tried hard to insinuate the
dying boy was gay. At autopsy, internal Kaposi‘s sarcoma of the rectum was discovered, along
with anal warts and lacerations. And after fingering the dead boy‘s rectum, the pathologist noted
"a lax anal sphincter." When newer viral identification techniques were reapplied to Robert‘s
blood in 1990, his blood retested HIV-negative, proving that Robert never had AIDS.
In 1990 the media sensationalized another "old AIDS case," this time an unmarried English
sailor who died in Manchester in 1959. When his stored tissue remains tested positive for HIV,
major newspapers throughout the world used this case to again discredit the persistent rumor that
AIDS was a man-made disease. The New York Times (July 24) declared: The case also refutes
the widely publicized charges made by Soviet officials several years ago that AIDS arose from a
virus that had escaped from a laboratory experiment that went awry or was a biological warfare
agent. The human retrovirus group to which the AIDS virus belongs was unknown at the time.
Nor did scientists then have the genetic engineering techniques needed to create a new virus. In a
letter to the medical journal Lancet in January 1996, this 1959 case was ruled not to be AIDS
because the DNA tests were found to be contaminated due to a laboratory error.
Despite the denial of the Times regarding the laboratory creation of new AIDS-like viruses, it
was common practice during the early 1970s for virologists to alter animal viruses by inserting
them into other animal species and into human tissue cells in culture. Experiments performed at
Harvard in the mid-1970s by Max Essex and Donald Francis (two of the best-known AIDS
experts) produced AIDS in cats with the feline leukemia retrovirus. In addition, a decade before
the outbreak of AIDS in the U.S., Robert Gallo was engineering cancer-causing retroviruses and
studying the effects of viral mutants and their ability to suppress the immune system.
Biological warfare research
It is difficult, if not impossible, to determine the truth about global biological warfare capabilities
and their possible effects on world health. In most countries, the taxpayer is kept ignorant about
the government‘s chemical and bio-warfare programs. Scientists involved in bio-warfare
research are sworn to secrecy and silence. Thus, "classified" and "top secret" medical
experimentation continues to be promoted by powerful government agencies, such as the
Department of Defense, the military, and other institutions. Revelations of horrific radiation
experiments conducted on unsuspecting U.S. citizens during the Cold War years up until the
1980s shocked everyone. Some of this research was conducted at the most prestigious medical
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institutions. None of the perpetrators were brought to trial. In light of these revelations, it is
inconceivable to think that leading AIDS scientists would be unaware of the connections
between their institutional research and the bio-warfare establishment. Nevertheless, strange and
unprecedented diseases mysteriously surface in various parts of the world. The peculiar Persian
Gulf War Syndrome sickened over 50,000 of the vets who served in Desert Shield/Storm. Their
illnesses were largely dismissed by health experts as due to "psychological stress," even though
there was evidence that this new disease was contagious and sexually-transmitted.
Nevertheless, most health officials remained silent on such issues. A few scientists insisted that
some cases of Gulf War Syndrome were related to biological warfare agents. Dr. Garth
Nicholson and his wife Nancy, formerly scientists at the M.D. Anderson Cancer Center in
Houston, discovered in the blood of some sick reservists a new infectious microbe (a
mycoplasma) that had part of the AIDS virus spliced into its genetic material! The Nicholsons
said: "The type of mycoplasma we identified was highly unusual and it almost certainly didn‘t
occur naturally. It has one gene from the HIV-1 virus — but only one gene. This meant it was
almost certainly an artificially modified microbe — altered purposefully by scientists." (National
Enquirer, April 2, 1996).By censoring certain aspects of AIDS history, particularly the origin of
HIV, it gave way for dangerous medical experimentation to continue.
From 2009 on words, the New York Blood Center was testing a new vaccine made from a
"harmless" canary-pox virus that had been genetically engineered to carry parts of HIV, the
AIDS virus. The Center was recruiting HIV-negative gay men by funding Project Achieve, an
organization designed to test and sign-up young men for the new vaccine experiment.
Homosexual men were lured into the program by posters that featured cute, multi-ethnic gay
boys. According to Timothy Murphy of HX magazine, there was a waiting list for the Center‘s
vaccine experiment. Gay men were urged to sign-up with Project Achieve at (212) 388-0008.
The enigmatic Dr. Szmuness has been erased from AIDS chronicles. His name does not appear
in Shilts‘ Band, nor in MirkoGrmek‘s History of AIDS (1990), or in Laurie Garret‘s massive
tome on emerging viruses, The Coming Plague (1994). Although his untimely death went
largely unnoticed in medical journals, he was remembered and honored on May 11, 1984, by a
small coterie of medical power brokers and distinguished scientists who convened at a landmark
symposium in the U.S. capital. The meeting entitled "Infection, Immunity, and Blood
Transfusion" was sponsored by the American Red Cross.
Paying tribute to Szmuness were top government scientists in AIDS and cancer research, the
most well-known researchers in animal experimentation, the heads of the most prestigious
biomedical establishments in the country, and the chief executives of drug companies tied to
genetic engineering, vaccine production, and biological warfare research. Dr. Robert Gallo, who
had announced the discovery of the AIDS virus to the American public three weeks earlier, was
one of the most distinguished attendees. There is an ominous link between cancer and AIDS,
between animal experimentation and the genetic engineering of viruses, between biological
warfare technology and drug companies, between gay experiments and AIDS, between vaccine
programs and the contamination of the US‘s blood supply. Why else did all these people from
diverse areas of science attend this high level government conference?
There is also a connection between Szmuness‘ gay experiment and the outbreak of AIDS that
cannot be denied. This connection is not coincidental or a paranoid fantasy. It is time for a
serious study of the link between covert biological warfare research and the initial outbreak of
the "gay AIDS plague." Ignoring evidence pointing to AIDS as a man-made disease makes a
shame out of AIDS education.
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Finally, the genesis of HIV/AIDS remains a subject of debate. It is likely that we will never
know the first person to get infected with HIV, or exactly how it spread from that initial person.
But the point of concern is not based on how the virus originated, but how those it affects can be
treated, how the further spread of HIV can be prevented and how the world can respond proactively to ensure that a similar pandemic never occurs again.
MALE CIRCUMCISION
Male circumcision refers to the surgical removal of the entire foreskin (prepuce) from the penis.
Circumcision is a very painful operation which at times requires the application of a local
anesthetic for very young children although the individual will still experience pain. In hospitals,
the cutting process may take over 15 to 20 minutes. In older boys, the procedure is performed
under the influence of a general anesthetic that numbs the pain; it is injected at the base of the
penis or in the shaft but can also be applied as a cream. The procedure can be carried out at any
stage during infancy, childhood, adolescence or adulthood. In adult men a four to six weeks
period is necessary for the wound to heal fully compared to the one – week period when
circumcision is performed for babies.
Preparation for circumcision
The preparation process for adult men and post pubescent teenagers going for circumcision
differs from that of young children and new born babies. Those who intend to be circumcised
should seek for advice from hospitals or skilled personnel so that they know what to expect
beforehand. The ideal circumcision surgeon should possess the following qualities:An expert in sterilization techniques
Acquainted with surgical procedures
Have enough information on HIV infection
Pain management
Post operation care
Counseling about wound care
Timing is very important because one needs enough time to heal after the procedure, children
should be circumcised during school holidays. Basically one must know the risks involved and
talk to the doctor regarding the use of anesthetic and antibiotics that you may be allergic to.
Circumcision type
This is a time to discuss with the doctor any particular outcome that you require e.g. a ‗tight‘ or
‗loose‘ circumcision, ‗high‘ or ‗low‘ placement of the scar line, removal or retention of the
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frenulum. Always be specific and show the surgeon or doctor where you want the scar line
placed.
Before the Operation
At this stage, you should trim your public short. This is because long air strands can get tangled
with the bandage causing pain to you (the individual). If you are an adult, it is vital to note that
there is a six week healing period during which you will not be able to have sexual intercourse.
Therefore, you should be sexually satisfied before going for the operation. Do not take alcohol
prior to the operation because it reduces the effectiveness of the local anesthetic. The morning
before the procedure, have a thorough bath paying attention to the genitals. Retracting the
foreskin as far as you can and cleaning under it.
Operation Stage
Be calm as the operation may take less than 15 minutes. You will be advised to lay on bed and
your lower abdomen will be covered with a cloth. Your private parts will be washed with cold
water and patted dry. You may receive up to five shots of injection in the groin area. Here, you
can clench your teeth, let out a silent groan and blow out warm air to the blue screen that hung
above your chest, obstructing you from seeing what the surgeons are doing. After a few minutes,
all you will feel is the sound of scissors. The procedure takes about a quarter of an hour. Then
you will proceed to the resting room and rest on a mat for about three hours. You will be advised
on how to take care of the wound and also receive pain killers and condoms. The following day,
the morning erection causes little pain, but it is manageable. It will take about three weeks to
heal. And you do not have to go back to the hospital for review or to remove the stitches; they
dissolve on their own.
After the Operation
If you have just completed the procedure, their entire penis will be swollen and look very bruised
but this is normal and the swelling gradually reduces after a period of one to two weeks. It is also
important to wear underwear that protects the penis from rubbing against your clothes as this
may cause more pain. You may bandage only the immediate area of the cut but it is
advantageous to apply a bandage to the entire shaft. This bandage will normally be of a special
compression type or else be wound tightly around the penis. The bandage serves two purposes: Protecting the wound, and to contain and reduce the swelling. For the case of children, once the
foreskin has been cut off, healing takes up to seven days. Occasionally, there may be
complications after the operation, including infection and scaring. Try to be vigilant for such side
effects and get medical advice immediately.
After Surgery, recovery is characterized by;
A thin yellow film to form over the circumcision site the day after surgery. This is part of
the normal healing process and should disappear in a few days.
The baby to become irritable. Your baby may not sleep as well and may seem fussy while
the circumcision site heals. The baby to have pain while urinating.
It is painful when healing skin comes in contact with urine and stool. This pain fades
within three or four days but may persist for up to two weeks. The penis usually appears
better after three days, as it may become worse again. From 7-10 days the penis starts to
look better and this is the true journey to recovery.
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Stitches (sutures) are not used for infant circumcision. Sutures are used when circumcision is
done on a grown up child or an adult.
Care after Circumcision
You can help make the baby feel comfortable and heal more quickly by; gently washing the
penis with warm water after each diaper change. Do not use soap. Do not attempt to remove the
film that forms on the penis. The film will go away on its own as it dries. Apply petroleum jelly
such as Vaseline liberally to raw areas on the head and / or shaft of the penis during each diaper
change. The petroleum jelly prevents the scab from sticking to the diaper. Make sure diapers are
fastened loosely to decrease irritation of the penis.
Intervention of a doctor
Your son‘s penis will be examined during routine baby visits. However, it is important to call
your health worker should problems persist after circumcision.
Call the health worker immediately if your baby;
Is younger than three months of age and has a fever.
Develops signs of infection on the penis or around the circumcision site. Signs may
include, severe swelling, redness, a red streak on the shaft of the penis, or a thick, yellow
discharge.
Bleeds more than the doctor said to expect or has a blood stained area larger than the size
of a bottle cap on his diaper or on the circumcision site dressing.
Is extremely fussy or irritable, has a high pitched cry, or refuses to eat.
Has not passed urine within 12 hours after the exercise.
Benefits of male circumcision
At least half of all uncircumcised men develop one or more problems over their lifetime caused
by the foreskin. With surgical removal of the foreskin, such problems can be avoided. However,
circumcision must be done under hygienic conditions. This distinguishes it from cultural forms
of circumcision that may be mandatory, or may not be done under hygienic conditions. The
greatest advantage of circumcision is that it is a one – off procedure, with no ongoing costs or
supply issues to worry about.
Once a boy or man undergoes the procedure, he will benefit from the prevent effect for the rest
of his life.
Safe male circumcision offers partial protection to an HIV-negative male who goes on to
have unprotected sexual intercourse with an HIV-positive female. The part which
remains after cutting off the loose skin is left exposed and eventually dies resulting to an
insensitive skin (keratinization), which makes it hard for HIV virus to penetrate. Other
key strategies (like, abstinence, condom use and being faithful to your partner) that offer
partial protection should, however, be used to maximize the benefits of safe male
circumcision.
Bacteria and other micro-organisms proliferate under the foreskin, triggering infections in
the urinary tract. Safe male circumcision, therefore, offers men protection against various
sexually transmitted infections and their sexual partners from urinary tract infections.
Uncircumcised men are more likely to harbor the cancer-causing Human Papilloma Virus
(HPV) in their foreskin. Safe circumcision, therefore, offers protection from cancer of the
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penis. Circumcision also offers protection from ulcerative sexually transmitted diseases
including genital herpes, syphilis and chancroid.
Male circumcision reduces the risk of abrasion, bruises, and tears during sexual
intercourse which are direct routes for HIV infection.
Circumcision prevents balanitis and prosthitis .Balanitisis is a state of infection that
causes inflammation (reddening and pain) on the head of the penis, whereas prosthitis is a
similar condition that causes inflammation inside the foreskin. In babies, balanitis is
caused by soiled diapers, as well as playing or sitting in dirty areas.
Some uncircumcised men have a problem with retraction of the glans (head of the penis)
retracting. Circumcision also offers protection from this condition and other recurrent
infections of the foreskin which lead to loss of skin elasticity. Circumcised men do not
suffer from health problems associated with the foreskin such as phimosis and
paraphimosis.
Phimosis; is a condition characterized by the inability to retract the foreskin. It becomes difficult
and painful to move the foreskin on and off from the penis tip. In such a situation, there is a very
small opening for urine to pass through. This makes the urine to accumulate inside as the
foreskin becomes swollen and painful. Paraphimosis- is the swelling of the retracted foreskin
causing difficulty to return it to its normal position. Circumcision is also a solution for a tight
foreskin that becomes tighter during erections.
Circumcision eliminates a bad smell and infections that may be caused by smegma.
Smegma is a white substance that is concentrated under the foreskin of uncircumcised
men. In addition, some drops of urine may remain trapped inside the foreskin providing
a fertile ground for germs, bacteria and viruses to hide and possibly cause infections
At times, it is a solution for pre-mature ejaculations.
Benefits to a female partner
A female sexual partner of a circumcised man has fewer risks of acquiring cervical cancer
(cancer of the cervix). This cancer is mainly caused by the human papilloma virus, which is more
easily spread by uncircumcised men. As such, male circumcision also benefits women indirectly.
The benefits include protection from HIV, Cervical cancer, genital herpes and bacterial
vaginosis, a disease of the vagina caused by bacteria.
Demerits
It is a painful exercise coupled with prolonged illness.
The exercise may result into sexual insensitivity in some men.
Sometimes, the skin is cut too short and not stitched to the base.
In children, especially fat ones, the penis may retract inside as the skin heals, sealing off
the glens from inside.
Complications of traditional male circumcision
Circumcision outside health facilities may lead to;
Heavy bleeding and damage to other parts.
High risk of infection-sharing unsterilized tools
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Incomplete circumcision which may necessitate re-circumcision.
Excessive pain-when urinating.
Importance
Inadequate information-men are tempted into sex when their wounds have not healed;
this is an increased risk to HIV infection through their broken skin.
Myths surrounding Male Circumcision
Some people believe that the practice is barbaric and a degradation of one‘s human right
because it demeans the appearance and function of the male organ.
The right to consent is not taken into consideration especially when it is carried on a child
with little knowledge.
For one to qualify as a local surgeon he must be possessed with local spirits and this is
common among the Bamasaaba community dwelling in East Africa.
You may not be eligible for circumcision if;
You are sick, was born prematurely and still unable to go home.
Have a family history of bleeding difficulties.
Have a swelling in the spinal cord and an abnormal opening of the rectum.
Sexual pleasure and male circumcision
Sexual pleasure comes from many sources besides the impacts of male circumcision, these are;
The involvement of the brain
Sensitivity from the body parts in action
Emotional bond intensity between you and your partner
Sense of protection
Level of guilt and comfort etc.
COUNSELING PROCESS
HIV/AIDS counseling refers to the provision of support and strength to individuals, couples,
families or groups by, competent persons, to help them cope with knowledge that they are
infected or affected by HIV. It is an ongoing process that allows individuals to develop a sense of
responsibility in meeting challenges posed by their infection. When we seek, or accept, help with
an issue we have been unable to resolve on our own, there is often an emotional component in
the situation. We often feel bad about needing help. The problem may itself cause confusing
feelings "I like my boss but she/he drives me mad doing X, dare I level with her/him?" In the
latter case feelings of liking, irritation and anxiety are present together. It is extremely difficult to
think clearly when we are feeling strong feelings whether good or bad. The primary function of
counseling is to help people think clearly when feelings are present.
The feelings can arise from an experience in the present. Hearing "Your job is redundant" would
obviously generate negative feelings in most people. Someone who got into trouble with head
teachers at school might equally find meeting a senior administrator intimidating. This would
remind that person of the earlier painful experience. He or she would then find it hard to think.
HIV counseling has as its objectives, both prevention and care. A counselor is a person trained in
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the skills of the job: listening to the client, asking supportive questions, discussing options,
encouraging the client to make his or her own informed decisions, giving practical information
and suggesting follow-up.
Counseling skills
The speed and complexity of modern life continue to increase as do people's expectations from
it. Coping well requires autonomous and flexible thinking and clear decisions. Unfortunately
most of us have been conditioned to conform, not think for ourselves. Counseling skills help
people to change as they learn to think things through for themselves and make their own
decisions, free of the effects of past conditioning. The counselor‘s job is to help the other person,
the client, help him/herself. If the client is to feel safe enough to be open about her/his thoughts
and feelings, he/she needs to feel safe, respected and understood. Below is a table of some skills.
The counselor must
Listen
Not judge
Pay attention
Accept the client's feelings
So that the client can
Develop his/her thinking
Feel safe and respected
Know you care
Know he/she is not being
judged
Understand the client's world Know you are with him/her
and feelings; put yourself in
the client's shoes. Express
that understanding.
Think about the client
Get the best help possible
The counselor may
So that the client can
Ask questions
Develop her/his own thinking
Summarize
Hear her/his thoughts and
know she/he is understood.
Ask the client to try new Release blocking emotion
behavior in the counseling such as unexpressed anger or
session
sadness.
Counselors should not
This will make the client
Argue
Defensive
Dwell
on
their
own Withdraw
difficulties
Solve the problem for the Dependant
client
Give advice
Dependant or hostile
Belittle the clients' concern
Withdraw or attack
Avoid painful areas
Be frustrated
The rationale for counseling
Presumably all humans have immense potential and are intrinsically intelligent, powerful, cooperative, zestful and loving. Unfortunately, this basic nature is often obscured as we grow older.
Our nature is such that we are easily hurt and when hurting our thinking process shuts down.
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When we act without thinking, the consequences often cause further hurts (distress) which
reduce our capacity to think in the situation still further. We then behave in a rigid, stereotyped
way every time we experience a situation that reminds us enough of the original situation in
which we were hurt. This complex process develops rigid (patterned) responses to situations
rather than a flexible appropriate response. Fortunately, we had highly effective mechanisms for
discharging our hurts and thus recovering our ability to think in any situation. A child that is
experiencing, or has experienced hurt, will typically find someone, often an adult, and get this
person to pay attention to him/her.
The child will then talk actively, laugh, sweat, shake, and have a tantrum (storm), cry or yawn. If
the adult can stay in touch with the child, perhaps offer a warm hug or hold a hand, the child will
discharge the painful emotion exhaustively and then go back to playing etc. quite freely and with
no rigidities installed by the hurtful experience. The above describes the counseling process in its
natural state. Unfortunately most adults have had their discharge processes thoroughly interfered
with in their childhood so will suppress the exhaustive discharge required because it disturbs
them. Children quickly learn that discharging painful emotion is punished and learn further rigid
ways of controlling their feelings, when discharging them would be helpful.
In the counseling process the counselor provides the love, safety and attention necessary for the
client to feel her/his feelings and discharge them. The feelings that condition behavior in rigid
patterns may arise from present hurts or past hurts. It is necessary for the counselor to examine
many ways to identify and outwit the client's patterns, including the control patterns, so they can
discharge. Isolation is a component in almost all hurts so simple, warm, attentive listening is
often enough. Where it is not, the counselor has to listen well enough to understand where the
client is hurting. Then he or she must think how to show to the client that the rigid injunctions
he/she feels are distress not reality and do so. An example could be a client whose hurt is about
being accommodating and being exploited who says "I have to put up with it, I am lucky to have
a job". The counselor might ask the client to stand proudly and say in a confident tone "I am
NOT going to be a victim ever again". S/he would find this difficult to say and would laugh, cry,
sweat and perhaps get angry trying to do so. This would, when persisted in, discharge the hurts
that installed the victim pattern in the first place.
Following discharge, the client can think clearly about the painful experiences and decide what
to do freely without the compulsion of the "victim" pattern. There are literally hundreds of
techniques like the above to deal with particular distresses.
Types of counseling
1. Pre-test counseling
HIV counseling is often given in connection with a voluntary HIV test. Such counseling helps to
prepare the client for the HIV test, explains the implications of knowing that one is or is not
infected with HIV, and facilitates discussion about ways to cope with knowing one‘s HIV status.
It also involves a discussion of sexuality, relationships, possible sex- and drug-related risk
behaviors, and how to prevent infection. It helps correct myths and misinformation around the
subject of AIDS. Whenever resources permit, pre-test counseling should be made available to
those who desire it.
People who do not want or do not have access to pre-test counseling should not be prevented
from taking a voluntary HIV test, however. In contrast, informed consent is always required
before an HIV test where the individual‘s name will be linked to the result. To allay anxieties
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while awaiting the test result, some individuals may seek support not only from their own
families or a knowledgeable community worker.
2. Post-test counseling
Post-test counseling helps the client understand and cope with the HIV test result. Here, the
counselor prepares the client for the result, gives the result and then provides the client with any
further information required, if necessary referring the person to other services. The two usually
discuss ways to reduce the risk of infection or transmission. HIV test results should always be
given with counseling. The form of post-test counseling will depend on what the test result is.
Where it is positive, the counselor needs to tell the client clearly, and as gently and humanly as
possible, providing emotional support and discussing with the client on how best to cope,
including information on relevant referral services.
3. Ongoing counseling
Enables clients to accept their HIV status, and take a positive attitude to their lives. Through
ongoing counseling the infected person may choose to invite a trusted family member to share
confidentiality and participate in the counseling—enabling the family to start practicing family
level counseling. But counseling is also important after a negative result. While the client is
likely to feel relief, the counselor must emphasize several points. First, because of the ―window
period‖, a negative result may not mean absence of infection, and the client might wish to
consider returning for a repeat test after 3-6 months. Second, counselors need to discuss HIV
prevention, providing support to help the client adopt and sustain any new safer practices.
Counseling behavioral change
The availability of HIV counseling, even without HIV testing, may create a private environment
for discussing sexual matters and personal worries. Counseling augments AIDS education by
making HIV related information personally relevant.
Counseling - children
In many places, children are increasingly affected by the epidemic. Apart from those themselves
infected with HIV, they include children where one or both of the parents are either living with
HIV or AIDS or have died of AIDS. These children have special counseling needs, such as the
emotional trauma of seeing their parents being ill or die discrimination by other children and
adults, and emotional worries about their own continuing illness. Older children may need
counseling related to sexual issues, and on the avoidance of risk behavior.
Counseling pregnant women
Counseling can benefit pregnant women—or women wanting to become pregnant— who are
either HIV-positive or unaware of their HIV status. It facilitates their making informed decisions
about whether to become pregnant if HIV-infected; whether to take a test before pregnancy; and,
if pregnant, whether to terminate the pregnancy, where abortion is legally available. Where
possible, and when the woman agrees, it is advantageous to involve her male partner in the
counseling sessions. Ideally, women should have counseling available to them before they
become pregnant.
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Couple counseling
Counseling is sometimes provided to a pair of sex partners, who agree to attend sessions
together. It can help resolve misunderstandings between the two people—such as over worries
when one of them is tested HIV-positive— that can lead in some cases to violence, particularly
against women. Couple counseling can also be given to a client and his or her sex partner or
spouse, before or after an HIV test. It is also provided as part of premarital counseling.
Clinical Counseling7
An individual attending a health center with a confirmed HIV positive result will require
information on the HIV result and its implications. The attending clinician may wish to follow up
the individual or may delegate this responsibility to a trained counselor. The patient needs to be
involved in this decision so that issues of confidentiality are dealt with. Follow up of the patient
may be in the outpatient clinic or in the ward. During the initial meeting an assessment to
determine the circumstances that lead to an HIV test being performed should be done.Based on
the outcome of this the individual can then be provided supportive or problem solving counseling
or a combination of both. If there is an underlying medical condition that requires treatment, this
should be attended to first before HIV counseling is offered. Whether admitted or reviewed in
the clinic, the counselor should take the opportunity to plan with the patient how follow up
counseling will be provided. With the patients consent relatives may be involved in the
counseling process.
Based on the patient‘s needs, plans for referral to other health and social services can be made.
Home-based care as a complement to hospital care should be considered if it is available. An
individual with suspected HIV infection is admitted to the hospital with a medical condition
requiring treatment. The medical condition should be attended to without discrimination before
HIV testing is done. Appropriate treatment is given according to the presenting condition. The
patient is offered pre-test counseling by the attending clinician, or a trained counselor. This
involves the giving of information on the technical aspects of HIV testing and possible personal,
medical, social, psychological and legal implications of being found either HIV positive or HIV
negative.
The information is given in a manner that the individual understands and feels he/she can make
an informed decision about taking the HIV test. The issue of confidentiality surrounding test
results and subsequent counseling and follow up is also covered. If the outcome of pretest
counseling is favorable the individual is then tested using the approved testing procedure.
Post-test counseling is given by the clinician or a trained counselor. This involves discussing the
interpretation of an HIV result and whether it was expected or not. The focus of the discussion
will depend on whether the result is positive, negative or equivocal.
Psychological issues in HIV/AIDS counseling
Shock
of diagnosis
recognition of mortality
Loss of hope for the future
Fear and anxiety
uncertain prognosis
effects of medication and treatment/treatment failure
of isolation and abandonment and social/sexual rejection
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of infecting others and being infected by them
of partner's reaction
Depression
in adjustment to living with a chronic viral condition
over absence of a cure
over limits imposed by possible ill health
possible social, occupational, and sexual rejection
if treatment fails
Anger and frustration
over becoming infected
over new and involuntary health/lifestyle restrictions
over incorporating demanding drug regimens, and possible side effects, into daily life
Guilt
interpreting HIV as a punishment; for example, for being adulterous or using drugs
over anxiety caused to partner/family
Counseling can also be offered to clients and their partner together.
The worried well
There are some clients who come with multiple physical complaints which they interpret as sure
evidence of their HIV infection. Typically, fears of infection reach obsessive proportions and
frank obsessive and hypochondriacal states are often manifested. This group shows a variety of
characteristic features, and they are rarely reassured for more than a brief period after clinical or
laboratory confirmation of the absence of HIV infection. A further referral for behavioral
psychotherapy or psychiatric intervention may be indicated, rather than frequent repetition of
HIV testing.
Characteristics of the worried well
Repeated negative HIV tests
Low risk sexual history, including covert and guilt inducing sexual activity
Poor post adolescence sexual adjustment
Social isolation
Dependence in close relationships (if any)
Multiple misinterpreted somatic features usually associated with undiagnosed viral or
post viral states (not HIV) or anxiety or depression
Psychiatric history and repeated consultation with general practitioners or physicians
High levels of anxiety, depression, and obsessional disturbance
Increased potential for suicidal gesture
Coping strategies
The importance of encouraging and working towards coping strategies involving active
participation (to the extent the client can manage) in planning of care and in seeking appropriate
social support can be demonstrated clinically and empirically. Such an approach includes
encouraging problem solving, participation in decisions about their treatment and care, and
emphasizing self-worth and the potential for personal control over manageable issues in life.
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Many clients diagnosed with HIV some years ago are now feeling well enough to return to work
and to study and are, paradoxically, learning to readjust to living, as they had formally adjusted
to the possibility of dying. Clients also have to deal with the uncertainty which remains about the
long term efficacy of current medical treatment, and there are some who fail on combination
therapy. Even with the significant medical advances in client management, counseling remains
an integral part of the management of clients with HIV, and their partners and family.
Basic counseling principles
The advent of HIV/Aids in the world has forced all of us to accept a paradigm shift from curing
towards caring. Because we have no cure for HIV/Aids, we have to focus our interventions on
caring for the physical as well as the psychological welfare of the HIV positive individual and
his or her significant others. The HIV positive individual needs to find ways to live a
psychologically healthy life after diagnosis. The need for counselors to assist HIV positive
individuals and their loved ones are so great, that we need to equip everyone in the helping
professions with the necessary skills to be effective HIV/Aids counselors. The single most
important requirement to be an HIV/AIDS counselor is to have compassion for another person's
struggle to live beyond the confines of a disease, and the willingness and commitment to walk
the walk with this person and his or her significant others. The aims of counseling or helping a
client must always be based on the needs of the client.
The purpose of counseling is twofold: (1) to help clients manage their problems more effectively
and develop unused or underused opportunities to cope more fully, and (2) to help and empower
clients to become more effective self-helpers in the future. Helping is about constructive change
and making a substantive difference to the life of the client. But only the client can make that
difference: the counselor is merely an instrument to facilitate that process of change.
Qualities of an effective counselor
To be an effective counselor, you need the following qualities or values:
1.
Respect
The belief that every person is a worthy being who is competent to decide what he or she really
wants, has the potential for growth, and has the abilities to achieve what he or she really wants
from life. A counselor can show his or her respect to clients in the following ways:
Accept the client by showing unconditional positive regard. This means that you as
counselor accept the client as he or she is, irrespective of the client's values or behavior
and of whether you as a counselor approve of those values and behavior or not. If you
are judgmental who condemns clients or who makes clients feel that their sexual behavior
is offensive, you will not be able to facilitate healing, and will only do harm.
Respect the client's rights. Individuals have a right to be who they are, a right to their own
feelings, beliefs, opinions and choices.
Respect the uniqueness of each client.
Refrain from judgment. You are there to help your clients, not to judge or to blame them.
Since HIV infected individuals often already feel that they are ―guilty‖ or ―bad‖ before
counseling even starts, only nonjudgmental attitudes on your part will facilitate
understanding and growth.
Remain silent and imperturbable and never react with embarrassment, shock or
disapproval when clients discuss painful situations or their sexual practices with you.
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2.
Genuineness
and
congruence
you must be honest and transparent in the counseling relationship. A genuine or congruent
counselor demonstrates the following values or behavior:
Be yourself. Be real and sincere.
Be honest with yourself and your clients.
Don't be patronizing or condescending.
Keep the client's agenda in focus. Don't pursue your own agenda or inflict yourself on
others.
Don't be defensive. Know your own strengths and weaknesses.
Strive towards achieving openness and self-acceptance because these qualities will enable
you to accept people whose behavior conflicts with your own personal values. Remember
that it is impossible to hide negative feelings from clients. No matter how hard you try to
conceal them, clients will sense your incongruence.
When clients react negatively or criticize you, examine the behavior that might have
caused clients to think negatively.
3.
Empowerment
and
self-responsibility
You must have the desire to empower clients to take responsibility for themselves and to
identify, develop and use available resources that will make them more effective agents of
change in counseling sessions as well as in their everyday lives. The empowerment of clients
should be based on the following values:
Accept the principle that the client knows himself or herself better than anyone else, and
that he or she is therefore in the best position to explore, expose and understand the self.
Believe in the clients' ability to change if they choose to do so. Trust clients‘ ability to
manage their lives more effectively. It is the task of the counselor to help clients to
identify and use their resources.
Refrain from ―rescuing‖ the client. This means that you should not take responsibility for
another person's feelings, choices or actions. Allow the client to take responsibility for
him or herself.
Help clients to perceive counseling sessions as work sessions. Only the client can make
change happen. The counselor can merely make suggestions about how the client might
change.
Help clients to become better problem solvers in their daily lives.
Basic communication skills
Since counseling is a conversation or dialogue between the counselor and client, the counselor
needs certain communication skills in order to facilitate change. The counselor needs the
following basic communication skills to do effective counseling.
1. Confidentiality; always maintain the principle of non-negotiable. You may under no
circumstances disclose the HIV status or any other information to anybody without the
express permission of the client. Confidentiality is an expression of your respect for the
client.
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2. Attending; refers to the ways in which you can be with your client, both physically and
psychologically. Effective attending tells clients that you are with them and that they can
share their world with you. Effective attending also puts you in a position to listen
carefully to what your clients are saying. The acronym SOLER can be used to help you to
show your inner attitudes and values of respect and genuineness towards a client.
S: Squarely face your client. Adopt a bodily posture that indicates involvement with your client.
(A more angled position may be preferable for some clients - as long as you pay attention to the
client.) A desk between you and your client may, for instance, create a psychological barrier
between you.
O: Open posture. Ask yourself to what degree your posture communicates openness and
availability to the client. Crossed legs and crossed arms may be interpreted as diminished
involvement with the client or even unavailability or remoteness, while an open posture can be a
sign that you are open to the client and to what he or she has to say.
L: Lean toward the client (when appropriate) to show your involvement and interest. To lean
back from your client may convey the opposite message.
E: Eye contact with a client conveys the message that you are interested in what the client has to
say. If you catch yourself looking away frequently, ask yourself why you are reluctant to get
involved with this person or why you feel so uncomfortable in his or her presence. Be aware of
the fact that direct eye contact is not regarded as acceptable in all cultures.
R: Try to be relaxed or natural with the client. Do not fidget nervously or engage in distracting
facial expressions. The client may begin to wonder what it is in himself or herself that makes you
so nervous!
Being relaxed means that you are comfortable with using your body as a vehicle of personal
contact and expression and for putting the client at ease. Effective attending puts counselors in a
position to listen carefully to what their clients are saying or not saying.
3. Listening; refers to your ability to capture and understand the messages clients
communicate as they tell their stories, whether those messages are transmitted verbally or
nonverbally.
Active listening involves the following four skills:
Listening to and understanding the client's verbal messages. When a client tells you his or
her story, it usually comprises a mixture of experiences (what happened to him or her),
behaviors (what the client did or failed to do), and affect (the feelings or emotions
associated with the experiences and behavior). The counselor has to listen to the mix of
experiences, behavior and feelings the client uses to describe his or her problem situation.
Also ―hear‖ what the client is not saying.
Listening to and interpreting the client's nonverbal messages. You should learn how to
listen to and read nonverbal messages such as bodily behavior (posture, body movement
and gestures), facial expressions (smiles, frowns, raised eyebrows, twisted lips), voice
related behavior (tone, pitch, voice level, intensity, inflection, spacing of words,
emphases, pauses, silences and fluency), observable physiological responses (quickened
breathing, a temporary rash, blushing, paleness, pupil dilation), general appearance
(grooming and dress), and physical appearance (fitness, height, weight, complexion).
You need to learn how to ―read‖ these messages without distorting or over interpreting
them.
Listening to and understanding the client in context. The counselor should listen to the
whole person in the context of his or her social settings.
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Listening with empathy. Empathetic listening involves attending, observing and listening
(―being with‖) in such a way that the counselor develops an understanding of the client
and his or her world. The counselor should put his or her own concerns aside to be fully
―with‖ their clients. Active listening is unfortunately not an easy skill to acquire. You
should be aware of the following hindrances to effective listening:
Inadequate listening: It is easy to be distracted from what other people are saying if one
allows oneself to get lost in one's own thoughts or if one begins to think what one intends
to say in reply. Counselors are also often distracted because they have problems of their
own, feel ill, or because they become distracted by social and cultural differences
between themselves and their clients. All these factors make it difficult to listen to and
understand their clients.
Evaluative listening: Most people listen evaluative to others. This means that they are
judging and labeling what the other person is saying as either right/wrong, good/bad,
acceptable/unacceptable, relevant/irrelevant etc. They then tend to respond evaluative as
well.
Filtered listening: We tend to listen to ourselves, other people and the world around us
through biased (often prejudiced) filters. Filtered listening distorts our understanding of
our clients.
Labels as filters: Diagnostic labels can prevent you from really listening to your client.
If you see a client as ―that women with AIDS‖, your ability to listen empathetically to her
problems will be severely distorted and diminished.
Fact centered rather than person centered listening: Asking only informational or
factual questions won't solve the client's problems. Listen to the client's whole context
and focus on themes and core messages.
Rehearsing: If you mentally rehearse your answers, you are also not listening attentively.
Counselors who listen carefully to the themes and core messages in a client's story
always know how to respond. The response may not be a fluent, eloquent or ―practiced‖
one, but it will at least be sincere and appropriate.
Sympathetic listening: Although sympathy has its place in human transactions, the
―use‖ of sympathy is limited in the helping relationship because it can distort the
counselor‘s listening to the client's story. To sympathize with someone is to become that
person's ―accomplice‖. Sympathy conveys pity and even complicity, and pity for the
client can diminish the extent to which you can help the client.
4. Basic empathy
Basic empathy involves listening to clients, understanding them and their concerns as
best as you can, and communicating this understanding to them in such a way that they
might understand themselves more fully and act on their understanding.
To listen with empathy means that you must temporarily forget about your own frame of
reference and try to see the client's world and the way the client sees him or herself as
though you were seeing it through the eyes of the client.
Empathy is thus the ability to recognize and acknowledge the feelings of another person
without experiencing those same emotions. It is an attempt to understand the world of the
client by temporarily ―stepping into his or her shoes‖.
This understanding of the client's world must then be shared with the client in either a
verbal or non-verbal way.
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Some of the stumbling blocks to effective empathy are:
Avoid distracting questions. You may often ask questions to get more information from
the client in order to pursue your own agendas. You can do this at the expense of the
client, i.e. you ignore the feelings that the client expressed about his or her experiences.
Avoid using clichés. Clichés are hollow, and they communicate the message to the client
that his or her problems are not serious. Avoid saying: ―I know how you feel‖ because
you don't.
Empathy is not interpreting. You should respond to the client's feelings and should not
distort the content of what the client is telling you.
Although giving advice has its place in counseling, it should be used sparingly to honor
the value of self-responsibility.
To merely repeat what the client has said is not empathy but parroting. If you ―parrot‖
what the client said, do not understand the client, are not ―with‖ the client, and show no
respect for the client. Empathy should always add something to the conversation.
Empathy is not the same as sympathy. To sympathize with a client is to show pity,
condolence and compassion - all well intentioned traits but not very helpful in
counseling.
Do not confront or argue with the client.
5. Probing
or
questioning
Probing involves your statements and questions that enable the client to explore more
fully any relevant issue of his life. Probes can take the form of statements, questions,
requests, single word or phrases and non-verbal prompts.
Probes or questions serve the following purposes:
to encourage non-assertive or reluctant clients to tell their stories
to help clients to remain focused on relevant and important issues
to help clients to identify experiences, behaviors and feelings that give a fuller picture to
their story, in other words, to fill in missing pieces of the picture
to help clients to move forward in the helping process
to help clients understand themselves and their problem situations more fully
Keep the following in mind when you use probes or questions:
Use questions with caution.
Do not ask too many questions. They make clients feel ―grilled‖, and they often serve as
fillers when counselors don't know what else to do.
Do not ask a question if you do not really want to know the answer!
If you ask two questions in a row, it is probably one question too much.
Although close-ended questions have their place, avoid asking too many close-ended
questions that begin with ―does‖, ―did‖, or ―is‖.
Ask open-ended questions - that is, questions that require more than a simple yes or no
answer. Start sentences with: ―how‖, ―tell me about‖, or ―what‖. Open-ended questions
are non-threatening and they encourage description.
6. Summarizing
it is sometimes useful to summarize what was said in a session so as to provide a focus to
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what was previously discussed, and so as to challenge the client to move forward.
Summaries are particularly helpful under the following circumstances:
At the beginning of a new session. A summary of this point can give direction to clients
who do not know where to start; it can prevent clients from merely repeating what they
have already said, and it can pressure a client to move forwards.
When a session seems to be going nowhere. In such circumstances, a summary may help
to focus the client.
When a client gets stuck. In such a situation, a summary may help to move the client
forward so that he or she can investigate other parts of his or her story.
7. Integrating
communication
skills
Communication skills should be integrated in a natural way in the counseling process.
Continually attend and listen, and use a mix of empathy and probes to help the clients to
come to grips with their problems. Which communication skills will be used and how
they will be used depends on the client, the needs of the client and the problem situation.
Counseling principles and procedures
Help the survivor actualize the loss
Help the survivor to identify and express feelings
Assist living without the deceased
Facilitate emotional relocation of the deceased
Provide time to grieve
Interpret ―normal‖ behavior
Allow for individual and cultural differences
Provide continuing support
Examine defenses and coping styles
Identify pathology and refer
The impact of HIV infection on affected others can be summarized as follows:
The significant others in an HIV positive person's life often need help themselves to come to
terms with (1) their own fears and prejudices and (2) the implications and consequences of their
loved one's sickness and ultimate death.
The counselor can play a tremendous role in counseling the lovers, friends and family of the
HIV-positive person in the practicalities of physical and emotional care.
Affected significant others experience more or less the same psycho-social feelings as do their
HIV-positive loved ones – the same feelings of depression, loneliness, fear, uncertainty, anxiety,
anger, emotional numbness and, at times, hope. The impact summarized as:
Affected others often experience fear and anxiety about their own risk of infection.
They are often angry with the infected person for ―bringing this onto them‖.
They anticipate the loss of the HIV-positive person and issues of loss, bereavement and
uncertainty are introduced into the relationship.
They often feel unable to cope with the new demands that the infection place on them.
They feel incompetent, unqualified and powerless in their interaction with the HIVpositive significant other.
Responses to disclosure can range from involvement, caring and support on the one hand,
to abandonment, indifference, and antagonism on the other.
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Affected others suffer in many ways as a result of untimely deaths. People who die of
AIDS are usually young (between 20 and 35 years old), and this leads to the ―unnatural‖
situation where parents outlive their children. Grandparents who are preparing
themselves for a quiet and contented old age now often find themselves forced to nurse
and care for sick and dying children as well as grandchildren.
Children suffer tremendously when their parents are infected, and the needs of children
with infected parents are often neglected. There is no tradition of talking to children as
equals and on an intimate basis in many African societies, and caregivers often report
seeing ―the suffering of children, who are too often hovering in the shadows of a sick
room, seeing and hearing everything but never addressed directly‖.
Significant others often have to fulfill a role for which they are not trained, namely that of
caregiver. They have to look after serious ill loved ones.
Neurological complications and deterioration in mental functioning in the client can be
extremely disturbing to significant others. They may feel that they are already losing their
loved ones and this can precipitate an early grieving process.
Helping the client and significant others
The main function is to be supportive of his or her infected and affected clients, to listen to their
problems and empower them to solve self-problems and better their lives.
1. Support and empowerment
Compile, with each client, a list of their problems, and let them reflect on what they want.
Assist the client to identify possible solutions to these problems. Encourage clients to
come up with their own solutions because clients will be more likely to implement
solutions that they find feasible and practical.
Ask the client to make a list of his or her good qualities and possible limitations. He or
she should, for instance, list his or her coping skills, describe the level of his or her selfesteem, analyze his or her personality style, communication style, sense of humour - and
any other strengths and weaknesses that may be important.
Examine and discuss possible solutions to whatever problems the client may have
identified. Assess each solution in terms of the client's actual capabilities and capacity.
Refrain from giving advice and suggesting solutions.
Ask the client to write down the answers to the following question: ―Why must I go on
living?‖ Once this has been done, encourage him or her to work toward those goals and
to make new and longer-term goals along the way. Clients should set goals that will give
them a sense of purpose and pride (goals such as ―I want to see my children growing
up‖).
Identify the ways in which clients have dealt successfully with their problems in the past
and help them (if necessary) to develop new coping skills.
Empower clients to make their own decisions and to take control over their lives
wherever and whenever possible.
Make a note of any relationship problems between the client and his or her loved ones,
friends and family, as well as between the client and other health providers.
Encourage the client to call on peer support (buddy systems) or self-help groups. The
counselor may also be able to put clients in touch with each other on an individual basis
(with the consent of the individuals involved).
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2. Peer support (buddy system)
Clients should be encouraged to become involved in support groups or to form their own groups
if none exist in their communities. The following issues are usually dealt with in peer support
groups:
Learning to live with HIV infection. Many of the people involved in the peer support
group, may have already gone through the process of living with HIV. They can describe
the medical and psychological problems they have experienced and the interventions they
found most useful.
Helping caregivers and loved ones handle the daily pressure of caring for sick people.
Reducing stress and avoiding conflict. Buddies can exchange practical advice on how to
overcome anxiety, depression and other psychological problems that can lead to stress
and conflict.
Deciding how best to talk about HIV/AIDS to loved ones, friend and colleagues.
Disclosing a diagnosis of HIV can be particularly stressful, and buddies can share ideas
on what to say, to whom, when and how.
Dealing with feelings of loneliness, depression, powerlessness and suicide. The peer
support group can provide help and mutual support. Advice from people who have
actually experienced those feelings personally and who have coped with them
successfully is more valuable than theoretical information.
Advice about sexual relations and the implications of safer sex behavior. Peer support
groups can discuss all aspects of these problems and opportunities and give each other
good advice about safer sex practices. Peer commitment to safer sex also helps to make
these practices socially acceptable, attractive and sustainable.
The key commandments of emotional support
The eight commandments of emotional support include:
Be non-judgemental
Be empathetic
Don‘t give advice
Don‘t ask why
Don‘t take responsibility for the other person‘s problems
Don‘t interpret
Stick with the here and now
Deal with feelings first
The counselor usually relies on the following guidelines in pre-test counseling:
1. Reasons for testing- a counselor will explore the reasons why the client needs to be
tested: Is it for insurance purposes, because of anxiety about lifestyle, or because the
client has been forced by somebody else to take the test? What particular behavior or
symptoms are causing concern to the client? Has the client been tested before, and, if so,
when? For what reason? And with what result? These questions provide you with an
opportunity to ascertain the client‘s perceptions of his or her own high-risk behavior, and
it allows the client to assess whether to be tested and whether their fears are realistic or
unnecessarily concerned.
The following are some of the reasons that clients who want to be tested often give:
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Their partner has requested it.
They want to determine their HIV status before starting a new relationship.
They want to be tested prior to being married.
They feel guilty and concerned about having multiple sex partners.
They have had recent sexual encounters in which they did not use condoms.
They are manifesting symptoms that are giving them cause for concern.
They have been referred by a STI or TB clinic because the client has tuberculosis or a
sexually transmitted infection.
They have come to re-confirm a positive HIV test.
Their current partner is HIV positive, or they were once involved with a partner who was
HIV positive.
They plan to become pregnant and want to check their HIV status before they do so.
They have been raped or assaulted.
They need to be tested after an occupational exposure (e.g. a needle stick).
There are simply curious.
The reason why a client wants to be tested is important because it sets the scene for the rest of
the pre-test counseling session.
2. Assessment of risk-assess the likelihood of whether the client has been exposed to HIV
by considering how much and how frequently he has been exposed to the following risk
factors and lifestyle indicators:
What is your sexual risk history in terms of frequency and type of sexual behavior? Have
you been involved in high-risk sexual practices such as vaginal or anal intercourse with
more than one sex partner without the use of condoms? In the case of anal sex, was it
anal-receptive or anal-insertive sex? Did you have sex with a sex worker (or prostitute)
without a condom? Or is your sex partner HIV positive?
Are there any other risks involved? Are you an intravenous drug user, a prisoner who is
exposed to rape or unprotected sex in prison, a migrant worker, a refugee or a sex
worker? Have you been raped or coerced to have sex with another person? Do you have
another sexually transmitted infection or tuberculosis?
Did you receive a blood transfusion or other body products?
Have you been exposed to possibly non-sterile invasive procedures such as tattooing,
piercing or traditional invasive procedures such as male or female circumcision and
scarification for the application of medicines?
Have you been exposed to HIV-infected blood in the work situation? (E.g. injuries with
large volumes of blood involved, or needle stick injuries.)
3. Beliefs and knowledge about HIV infection and safer sex
You will determine exactly what the client believes in and knows about HIV/ AIDS and
correct errors or myths by providing accurate information about transmission and
prevention.
You may also ask about client‘s past and present sexual behavior and provide
information about safer sex practices and a healthier lifestyle. Find out if the client knows
how to practice safer sex and how to use a condom correctly. If available and necessary,
you can also provide the client with condoms. Sex is natural and nothing to be ashamed
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of. Feel free to ask these questions; because that is the only way you can empower the
client with information to enjoy safe sex.
4. Information about the test-ensure that the client knows exactly what the HIV test entails.
You will explain the following points to the client or to questions asked:
There is a difference between being sero-positive and having AIDS. The HIV antibody
test is not a ―test for AIDS‖. It indicates that a person has HIV antibodies in the blood
and that the person is infected with HIV. It does not say when or how the infection
occurred, or in what phase of infection the person is.
The presence of HIV antibodies in the blood does not mean that the person is now
immune to HIV. It means that he or she has been infected with HIV and that he or she
can pass the virus on to others.
The meaning of a positive and a negative test results.
The meaning of the concept of the ―window period‖. The need for further testing will be
emphasized if the person practices high-risk sexual behavior and tests negative.
The reliability of the testing procedures. A positive HIV antibody test result is always
confirmed with a second test and the reliability of test results is usually high. Falsepositive or false-negative results may, however, occasionally occur despite the general
reliability of HIV tests (e.g. false negative tests result because the person is in the
window period).
The testing procedure. Many clinical centres use HIV antibody rapid tests, meaning that
the finger will be pricked to get a drop of blood. The results are available within 15 to 30
minutes. The counselor will explain how blood is drawn for the Elisa test (if rapid testing
is not available), where it is sent (if a rapid test is not used), when the results will be
available and how the person will be informed of the outcome.
5. The implications of the result-discuss the possible personal, medical, social, psychological,
ethical and legal implications of a positive test result with the client prior to testing. Inform the
client about the advantages and disadvantages of testing. The following advantages can accrue
from taking the test:
Knowing the result may reduce the stress associated with uncertainty.
One may begin to make rational plans for preparing oneself emotionally and spiritually to
live with HIV.
Symptoms can be confirmed, alleviated or treated.
Prophylactic (preventative) treatment can be considered, for example for tuberculosis.
Anti-retroviral treatment can be considered.
Adjustments to one‘s lifestyle and sex life can protect oneself and one's sex partners from
infection.
One can make decisions about family planning and new sexual relationships.
One can plan for future care of one‘s children.
The disadvantages that might accrue from taking a test (especially if its result is positive)
include:
Possible limitations on life insurance and mortgages.
Having to endure the social stigma associated with the disease.
Possible problems in maintaining relationships and in making new friends.
A possible refusal on the part of uninformed medical and dental personnel to treat an
HIV-positive person.
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Possible dismissal from work (although it is illegal to dismiss people because they are
HIV-positive).
Possible rejection and discrimination by friends, family and colleagues.
Emotional problems and a disintegration of one‘s life.
Increased stress levels and uncertainty about the future.
The stress and negative effects of maintaining a secret if the person decides not to
disclose his or her test results. You can tell the client about medical treatments that are
available which can help to keep him healthier for longer.
6. Anticipate the results-it is important to anticipate a positive HIV antibody result and to talk
about how the client will deal with a positive test outcome. Anticipating a positive result helps
you to ascertain the client's ability to deal with, and adjust to, a positive result. You will also gain
insight into some of the potential problems associated with a positive test outcome. Preparation
for the possibility of a positive test result, paves the way for more effective post-test counseling.
When preparing a client for the test result, you should ask the following questions:
How would you feel if you tested negative? How would you feel if the test were to be
negative but you were advised to be tested again because you may still be in the window
period?
What would your reactions and feelings be to a positive test? Would a positive test
change your life? How? What negative changes would you anticipate? What positive
changes can you imagine?
Do you intend to tell others if you test positive? Who would you tell? Why that person?
How would you tell them? Why would you tell them? Clients must be warned about
people‘s possible reactions. Often those closest to the client cannot cope with such news.
The counselor must help clients to think not only of themselves but also of those who are
to be told. (For example, if the client says to you: ―The news will surely kill my old and
frail mother‖, you may ask: ―Why do you want your mother to know?‖). Clients must
also be warned that some people may not keep the information to themselves, and that
this might have harmful effects for the client.
How would you tell your sexual partner? If the test result is positive, the sexual partner
also needs to be tested.
How would a positive test result change the circumstances of your job, your family and
your relationships? Would your relationships be improved or hindered by telling people
you were HIV positive? What do you believe their reactions would be?
Where would you seek medical help? How do you feel about a disease that requires a lot
of care, lifestyle changes, commitment and discipline? Do you have members of your
family or friends who could help you to be disciplined about your health? Could you take
medication every four hours if necessary?
Who could provide (and is currently providing) emotional and social support (family,
friends, others)?
The choice to be tested remains the client‘s prerogative. The advantages of testing can be
explained to clients, but clients should not be forced to be tested if they feel that they will not be
able to deal with the results. The mere knowledge of people‘s HIV status will not necessarily
protect them, or their loved ones, from infection. People who prefer not to be tested should,
however, live as if they are infected and practice safer sex at all times. People who suspect they
are HIV infected should also refrain from donating blood.
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7. Confidentiality of test results-always stress the confidentiality of test results. The client‘s
right to confidentiality must be respected at all times. If individuals choose to remain
anonymous, they must be reassured that no information will be communicated without their prior
permission to anyone. The client‘s consent must be obtained before anyone can pass on any
information about his or her HIV status to any other health care professional who also treats the
client. If you explain why other health care professionals need to know about the client's HIV
status, most clients will consent to this information being given out.
8. Informed consent-the decision to be tested can only be made by the client and their informed
consent must be obtained prior to testing. Consenting to medical testing or treatment has two
elements: information and permission. Before an HIV test can be done, the client must
understand the nature of the test, and he/she must also give verbal or written permission to be
tested. Never misled or deceive the client into consenting to an HIV test, it may lead to
prosecution. You may not do an HIV test on a person unless he or she clearly understands what
the purpose of the test is, what advantages or disadvantages of testing may hold for him or her as
client, why the health care professional wants this information, what influence the result of such
a test will have on his or her treatment, and how his or her medical protocol will be altered by
this information.
9. Information about giving the results and ongoing support-explain to the client when, how
and by whom the results of the test will be given. Assure the client with personal attention,
privacy, confidentiality and ongoing support and advice if needed.
10. The waiting period-waiting for results of an HIV antibody test can be an extremely stressful
period for the client. This waiting period (in cases where the rapid HIV antibody test is not being
used) can last from two to 14 days, depending on where the test is done (whether by a private
practice, a governmental health service or a rural clinic).
The results of rapid HIV antibody tests are, of course, available within 30 minutes. However, if
the client has to wait for the test results, anticipate this difficult waiting period by discussing the
following points with the client:
Find out the names of people whom the client might contact for moral support while he
or she waits for the results.
Encourage the client to contact you or a colleague if they have any questions.
Counsel the client on how to protect sex partners (e.g. to use condoms) in the waiting
period.
Encourage the client to do something enjoyable to keep himself or herself occupied while
waiting for the results (e.g. hiking, going to the movies or playing soccer with friends).
Pre-HIV test counseling is extremely important. It should not only be seen as a preparation for
the HIV test, but as a golden opportunity to educate people about HIV/AIDS and safer sex.
Remember that this may be the one and only time that you will see the client because he or she
might decide not to be tested, or not to come back for the test results after all.
Posttest counseling
Not many things in life could be as stressful as going back for HIV test results. For many clients
it feels as if the counselor holds the key to the future in his or her hands. Although the post-HIV
test counseling interview is separate from the pre-test counseling interview, it is inextricably
linked to it. The pre-test counseling interview should have given the client a glimpse of what to
expect in post-test counseling.
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Pre- and post-test counseling should preferably be done by the same person because the
established relationship between the client and counselor provides a sense of continuity for the
client. The counselor will also have a better idea of how to approach the post-test counseling
because of what he or she experienced in the pre-test counseling.
Counseling after testing will depend on the outcome of the test - which may be a negative result,
a positive result or an inconclusive result. The counselor should always ask the client if he or she
is prepared to receive the results. In the case of the rapid HIV antibody test - where the results
are available within minutes - ask the client if he/she is ready to receive the results immediately.
Some clients need time to prepare for the results.
Counseling - Negative Results
For both the client and the counselor, a negative result is a tremendous relief.
A negative test result could however give someone, who is frequently involved in highrisk behavior, a false sense of security. It is therefore extremely important for the
counselor to counsel HIV-negative clients in order to reduce the chances of future
infection. Advice about risk reduction and safer sex must therefore be emphasized.
If you practice high risk sex behavior and test negative, it does not mean that you are
―immune‖ to HIV and that precautions are therefore unnecessary. Nobody is immune to
HIV and everyone risks being infected if they do not change their behavior.
The possibility that the client is in the ―window period‖ or that the negative test result
may be a false negative should also be pointed out. If there is concern about the HIV
status of the person, he or she should return for a repeat test after about three months and
ensure that appropriate precautions are taken in the meanwhile.
Do not underestimate the extreme importance of counseling a client who might test HIV
negative. This may be your only chance to talk to this person about his or her sexual practices,
potential drug abuse and other risk behaviors, and to educate him or her about safer sex practices.
Free condoms can be given out at this session together with advice on how to use them and
where to get more when needed. Use this counseling session to prevent a future situation where
somebody else has to give the client a positive HIV test result!
Counseling
after
positive
results
to communicate a positive test result to a client is a huge responsibility. The way people react to
test results depends to a large extent on how thoroughly the counselor has educated and prepared
them both before and after the test.
When a test is positive, the following guidelines for counseling may prove useful for counselors:
1. Sharing news with the client
Positive (as well as negative) test results should be given to the client personally.
Feedback should take place in a quiet, private environment and enough time should be
allowed for discussion.
The news of a positive result ought to be communicated openly, honestly and without
fuss. Simple and straightforward language should be used. Do not give the individual
false hopes and (alternatively) do not paint a hopeless scenario.
Choose neutral words when conveying a positive HIV test result. Don‘t attach value to
the news by saying ―I have bad news for you‖ - because such an attitude reflects
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hopelessness in the mind of the counselor. Rather say: ―MR. Wan, the results of your
HIV test came back, and you are HIV positive‖.
A positive result is NOT a death sentence and the counselor‘s task is to convey optimism
and hope.
There are a few Don‘ts that we need to observe when sharing a positive HIV test result
with a client.
Don't lie or dodge the issue.
Don‘t beat about the bush or use delaying tactics. Come to the point.
Don't break the news in a corridor or any other public place.
Don't give the impression of being rushed, distracted or distant.
Don't interrupt or argue.
Don't say that ―nothing can be done‖ because something can always be done to ease
suffering.
Don't react to anger with anger.
Don't say ―I know how you feel‖ because you don't.
Don't be afraid to admit ignorance if you don't know something.
2. Client reaction to a positive result
Clients‘ responses to the news usually vary from one person to another, and may include
shock, crying, agitation, stress, guilt, withdrawal, anger and outrage - some clients may
even respond with relief.
You should allow clients to deal with the news in their own way and give them the
opportunity to express their feelings.
Try to show empathy, warmth and caring.
Maintain neutrality and respond professionally to outbursts. Don‘t show surprise or make
value-laden comments such as ―There is no need to be upset with me!‖ Because the loss
of health is bereavement, it manifests with all the components of denial, anger,
bargaining, depression and acceptance. The counselor must respect the personal nature of
an individual's feelings.
3. Responding to client needs
People's needs, when they receive a positive result, vary, and you have to determine what
those needs are and deal with them accordingly.
Fear of pain and death are often the most serious and immediate problems and these can
be dealt with in various ways. Talking to clients about their fears for the future is one of
the most important therapeutic interventions that you can make.
Often it is enough for you just to be ―there‖ for the client and to listen to him or her.
One of the major concerns for HIV positive people is whom to tell about their condition
and how to break the news. It is often helpful to use role-play situations in which the
client can practice communicating the news to others.
In responding to a client's needs, an attitude of non-judgmental empathic attentiveness is
more important than doing or saying specific things. Listening is more important than
talking; listening is more important than doing.
4. Crisis intervention
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Crisis intervention is often necessary after an HIV positive test result is given
Make sure that the person has support after he or she leaves your office. A person in
crisis should never be left alone: he or she should have somebody with whom to share the
burden.
Ask the client where he or she is going after leaving your office. Let the person think
about and verbalize his or her plans for the next few hours. Although it is better for the
client not to be alone, personal needs should be taken into consideration: Some people
prefer to be alone and work through a crisis all by themselves.
Be sensitive to the possibility of suicide. If the client shows any suicidal tendencies,
emergency hospitalization should be arranged if a friend or family member cannot be
with the client.
Make sure that your client does not leave your office without support to help him or her
through the first few days.
Don‘t ever give an HIV-positive result on a Friday, because there are often no support
systems available over weekends.
5. Follow-up visits
When people hear that they are HIV positive, they usually experience so much stress that
they absorb very little information.
Follow-up visits are therefore necessary to give clients the opportunity to ask questions,
talk about their fears and the various problems they encounter.
Significant others, such as a lover, spouse or other members of the family may be
included in the session. During follow-up visits, clients should be offered a choice
concerning their treatment.
If health care professionals are not in a position to do follow-up counseling, information
about relevant health services should be given. If there is a concern that the person might
not return for follow-up counseling, information about available medical treatments such
as anti-retroviral therapy, treatment of opportunistic infections, and social services for
financial and ongoing emotional support should be given.
Give the client a handout with whatever relevant information that he or she may need
(such as the telephone numbers and addresses of HIV/AIDS centers and other social
services).
6. Support systems
Find out what support systems are available to clients.
Refer clients to support systems where people meet on a regular basis to talk about their
difficulties or simply to relax and enjoy each other‘s company.
Information about support systems such as the buddy system is usually available at the
nearest AIDScentre or from the offices of NGOs (non-governmental organizations) who
work in the community.
7. Advice about health and sexuality
Convey information about safer sex, infection –re infection control, health care in general
and measures to strengthen the immune system.
8. Medical check-ups
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Encourage clients to go for regular medical check-ups to their family doctor or health
clinic. Infections and opportunistic diseases can be prevented if treated in time.
Counseling indeterminate results
In some cases an HIV test result can be ―inconclusive‖, meaning that the result is ambiguous or
indeterminate, and it is not possible at that stage to say if a person is HIV positive or not.
(Explanation: A test result may be inconclusive because the test is cross-reacting with a non-HIV
protein or because there has been insufficient time for full sero-conversion to occur since the
person was exposed to HIV.) When a test result is inconclusive, other testing methods may be
used to try to achieve a reliable result. The test can also be repeated after two weeks. If it is still
inconclusive, it should be repeated at three, six and 12 months. If it is still inconclusive after one
year, it should be accepted that the person is not infected with HIV.
Bereavement counseling
The bereavement experienced by a person who has lost a loved one and the bereavement
experienced by a terminally ill or dying person are very similar. Both people experience a
grievous sense of loss: in the first case, one experiences the loss of a loved one, and in the second
case, one experiences the loss of one‘s future, one‘s hopes, one‘s loved ones, one‘s health, selfesteem, well-being and one‘s dignity as a human being. In either case, people are confronted
with their own mortality.
Terminally ill persons are directly confronted by their own imminent death - the imminence of
which becomes more pressing as the disease progresses – while persons who have lost a loved
one are indirectly confronted with the possibility and spectacle of their own future death through
the death of the loved one. It is therefore understandable that the process of bereavement is often
very similar for both those who are dying and those who are forced to witness death.In all cases
where HIV-infected person lead a relatively normal and healthy life for extended periods, the
counselor needs to facilitate a process of reinvestment in life. This is also an important element
in the counseling of a person who has lost or is in the process of losing a loved one. Bereaved
people should actively work through their grief in their own time. Bereavement is a process that
cannot be rushed.
Stages of dying
The common stages of counseling for a person likely dying of AIDS:
Denial and isolation: In this stage, the person denies that death is really going to take
place. This reaction is commonly associated with any kind of terminal illness. However,
denial is usually only a temporary defense and is eventually replaced with increased
awareness when the person is confronted with such matters as financial considerations,
unfinished business and worry about surviving family members.
Anger: The dying person realizes that denial can no longer be maintained, and very
often, feelings of anger, resentment, rage and envy follow. In this stage, the dying person
wonders “why” he has to die. It can be difficult to care for a person in this stage since the
anger can be displaced and projected onto the nurses, social worker, doctor, family
member, etc. or even God. The realization of loss becomes great, and those who
symbolize life, energy, and competent functioning are especially salient targets of the
dying person‘s resentment and jealousy.
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Bargaining: In this phase, the dying person develops the hope that death can somehow
be postponed or delayed. Some persons enter into a bargaining or negotiation - often with
God - as they try to delay their death. Psychologically the person is saying ―Yes me,
but...” In exchange for a few more days, weeks, or months of life, the person promises to
lead a reformed life dedicated to God or to the service of others.
Depression: Here the dying person comes to accept the certainty of death. This can be
evident in several ways. The dying person may become silent, may refuse visitors, and
may spend much of the time crying or grieving. This behavior should be perceived as
normal in these circumstances and is actually an effort to disconnect the self from all love
objects. Efforts to cheer up the dying person at this stage should be discouraged, because
the dying person has a need to contemplate impending death.
Acceptance: The dying person develops a sense of peace; an acceptance of one‘s fate;
and in many cases, develops a desire to be left alone. In this stage, feelings and physical
pain may be virtually absent. This stage is the end of the dying struggle, the final resting
stage before death.
The four tasks of mourning
1. Accepting the reality of the loss: There are two aspects of death bereaved people must
accept. The first one involves accepting that the person has died and will not come back. The
second one involves facing the challenges of the realities of life, brought about by the loss of a
loved one.
2. Experiencing the pain of grief: Everyone who loses someone they love experiences the pain
of grief. Sometimes society pressurizes people who are in mourning to get on with their lives and
not be preoccupied with the loss. This results in the bereaved feeling lonely, with no one to share
the experiences - often complicating the grieving process. It is for this reason that the mental
health provider must offer the bereaved a space to share their grief and to feel the pain.
3. Adjusting to an environment in which the deceased is missing: The bereaved can be
assisted to living without the deceased person and to make decisions independently.
4. Emotionally relocating the loved one: The bereaved has to find a new place in his or her life
for their lost loved one - a place that will allow him or her to move forward with life and form
new relationships.
Useful techniques in bereavement counseling
Evocative language: You can use tough words to evoke language, e.g. ―your son is dead‖ versus
―you lost your son‖. This language will assist the client in perceiving the reality of the loss and
can stimulate some of the painful feelings that need to be felt. Also speaking of the deceased in
the past tense can be helpful.
The use of symbols: You can ask clients to bring photos of the deceased to counseling sessions.
This creates a sense of immediacy of the deceased and a concrete focus for talking to the
deceased rather than talking about him/her. Letters written by the deceased can also be useful as
well as audio/videotapes of the deceased. Articles of clothing and jewellery can also be used.
The counselor needs to be sensitive to the client‘s culture of doing things and deal with what the
client is comfortable with.
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Will making: You can ask the client to make a will to the deceased expressing thoughts and
feelings. This can help take care of unfinished business by expressing things that need to be said
to the deceased. Keeping a journal of one‘s grief experience or writing poetry can also facilitate
the expression of feelings and lend personal meaning to the experience of loss.
Drawing: You can ask the client to draw pictures that reflect his or her feelings as well as
experiences held with the deceased. This works well with children, but can also be used with
adults.
Role playing: Assist the bereaved to role play various situations that they fear or feel awkward
about, as one way to build coping skills. You can enter into the role play, either as a facilitator or
to model possible new behaviors for the client.
Cognitive restructuring: The underlying assumption of the cognitive restructuring technique is
that our thoughts influence our feelings, particularly covert thoughts and self-talk that constantly
goes on in our minds. By helping the client to identify these thoughts and reality test them for
accuracy or overgeneralizations, the counselor can help to lessen the dysphoric feelings triggered
by certain irrational thoughts such as ―no one will ever love me again‖.
Memory book: One activity a bereaved family can do together is to make a memory book of the
lost family member. This book can include stories about family events and snapshots, poems and
drawings made by various family members, including children. This activity can help the family
to reminisce and eventually to mourn a more realistic image of the dead person. In addition,
children can go back to revisit this memory book in order to reintegrate the loss into their
growing and changing lives.
Directed imagery: Helping the person to imagine the deceased, either with their eyes closed or
visualizing their presence in an empty chair and then encouraging them to say what they need to
say to the deceased can be very powerful techniques. The power comes not from the imagery,
but from being in the present and again, talking to the person, rather than talking about the
person. The purpose of all these techniques is to encourage the fullest expression of thoughts and
feelings regarding the loss, including regrets and disappointment.
DOMESTIC VIOLENCE AND HIV
Domestic violence can happen to anyone. It affects people regardless of age, race, gender, sexual
orientation, education level, financial situation, or marital status. It is important to learn about
how abuse happens, how to identify it, and how to end it or get away from it. It is important to
remember that, if someone threatens you, it is NOT your fault. You deserve to be treated with
respect and to be safe. Often, women who have been abused are humiliated to the point of
believing that they deserve whatever abuse comes their way. This is NEVER true. Domestic
violence occurs when a person you are dating, living with, or married to is repeatedly harmful or
threatening to you - physically, sexually, verbally, emotionally, or financially.
The person doing these things will often do them to gain or keep power and control. ―Intimate
partner violence‖ is another term used to describe violence in which a current or former partner
or spouse physically, sexually, or psychologically harms you.
Domestic violence can take many forms. Such as:
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Verbal abuse (using words to put someone down or make them feel bad), threats,
constant blame or criticism; all of these are emotionally abusive
Mild physical harm – like pulling hair or twisting flesh
Violent actions that leave marks – like hitting, slapping, pushing, beating, or throwing
things
Extreme violence using knives or guns
Rape or sexual assault (being forced into sexual acts without your consent)
Domestic violence often begins with threats or emotional abuse. While these harmful words or
actions may or may not lead to actual physical harm, they can still be very upsetting and scary,
and leave long-term emotional scars. While most domestic violence involves men assaulting
women, it can also involve men assaulting their male partners, or women assaulting their male or
female partners. Domestic violence can happen as often in same sex couples as it can in
heterosexual couples.
Women, HIV, and domestic violence
Domestic violence occurs more often in relationships where there is a difference in power.
Women living with someone who is larger or stronger than they are may feel physically afraid.
Also, women usually earn less than men and are more likely to be financially dependent on
others. If the person a woman lives with is the one who pays the bills and provides her with
accommodation, the woman may feel afraid, less independent, and in less control. There are
several ways in which domestic violence and HIV are connected for women. Women who are
abused may not be comfortable asking their partner to use protection during sex. Similarly,
women in abusive relationships may not be comfortable saying no to sex if their abusive partner
refuses to use protection when asked.
Lastly, forced sexual acts can cause cuts or scrapes that provides room for HIV to enter the body.
All of these can put women at higher risk for HIV, and make living with HIV more difficult.In
most cases, women with HIV have a history of being physically or sexually abused before
finding out their HIV status. And a woman with a history of physical and/or sexual abuse is more
likely to become HIV positive, especially if that abuse first started during childhood years.
Childhood abuse is closely linked with later drug use, having multiple sexual partners, being
with a male partner who is at a higher risk of HIV infection, and exchanging sex for drugs,
money, or shelter. If a woman uses drugs, alcohol, or sex to escape the pain of prior abuse, she
may be at increased risk of getting infected due to sharing needles and having unprotected sex.
All of these factors place an abuse at a higher risk for getting HIV. Many women may be at risk
of abuse or violence because they tell their partner or the person they live with about their HIV
status. Most women with HIV are always physically harmed after their HIV diagnosis.
Therefore, it is important to disclose your HIV status safely.
Questions to Ask Yourself or Someone Who May Have Been Abused
Sometimes it can be difficult to know if you or someone you know has been abused, because
victims may confuse their partner‘s actions with a form of love or caring.
This list of questions might help you or someone you know identify the abusive actions of a
partner or someone else in the home:
Do you ever feel unsafe at home?
Have you ever felt threatened by your partner, ex-partner, or other person in your home?
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Are you in a relationship where you have been physically hurt?
Has a partner, ex-partner, or person you lived with ever:
Pushed, grabbed, slapped, choked, or kicked you?
Forced you to have sex or made you do sexual things you did not want to do?
Threatened to hurt you, your children, or someone close to you?
Stopped, followed, or monitored you (this includes checking your daily movements,
emails, phone calls, and texts)?
Signs of violence in a Partner or Potential Partner
While there may not be any one profile or way to identify someone who is an abuser, you may
notice your partner acting in one or more of these ways. He/she may:
Be overly jealous
Have big mood swings
Have an explosive temper
Have low self-esteem
Blame you for their own problems
Use words to make you feel bad about yourself
Try to control you
Try to keep you from your family or friends
Disclosing Safely
Sadly, many women with HIV are sexually or physically assaulted soon after they disclose their
HIV status. Try to decrease this risk with the following:
Disclose in a semi-public place like a public park with many people around. Find a place
that is private enough to have a conversation, but public enough to get help if you need it.
Consider disclosing with a third person present, like a friend or a health care provider.
Meet only in public with that person until you feel safe.
Avoid exposing others to HIV without warning them ahead of time. The risk of violence
may be greater if a person feels you knowingly put them at risk or lied to them.
Decreasing Your Risk
There are no guarantees, but you can help lower your risk for domestic violence:
Most importantly, remember: if someone threatens you, it is NOT your fault. You
deserve to be treated with respect and to be safe. Often, women who have been abused
have been humiliated to the point that they believe that they deserve whatever abuse
comes their way. This is NEVER true.
Do your homework. To find out information on the person you are dating (such as if he
or she has a violent criminal record), consider doing a background check.
Keep in touch with people who support you. Whether it is family, friends, a support
group, peer advocate/counselor, or health care provider, do not let your relationship with
any one person keep you from staying in touch with others.
Get help and support. If you have been physically or sexually abused in the past, it is
important to get help from a mental health professional or a support group. Otherwise, the
past may be more likely to repeat itself.
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Avoid entering an abusive relationship. Be aware of the warning signs of abuse
(described above), when starting relationships. If you see warning signs, the best time to
leave an abuser is the first time it happens.
Stay informed. Learn all you can about domestic violence, even if you think you will
never need to know about it.
Break-ups
Of course break-ups can be for reasons that have nothing to do with HIV but sometimes it does
play a part, especially if you have been newly diagnosed, or if you were infected outside your
relationship. There are plenty of reasons why a relationship might be kept going after it has run
its course. An HIV negative partner might think that they cannot leave because:
it would look like they were abandoning their partner
the person living with HIV would be left without support when they needed it
they would feel guilty or worry that their partner wouldn‘t find someone else
As the HIV positive partner, you might stay because:
you worry about not being able to find another relationship
you might feel guilty at wanting to leave your partner
It is never easy to end a relationship, and it can be especially difficult to leave one that involves
domestic violence. The key is to have a safety plan.
Stay safe. Leaving your partner or someone you live with can be upsetting to that person.
Make your safety (and that of your children) your top priority.
Be prepared. If you leave, do not forget your HIV drugs and any other medications you
take, medical records, birth certificate, credit cards, checkbook, etc. Assume that
anything you leave may end up in the dumpster or used to find you. It may help to leave
an emergency kit with some of these items with a trusted friend, family member, or
service provider. If you do not want to give the name of the person you are afraid of, you
can put it in a sealed envelope and ask them to open it only if you disappear or turn up
too injured to identify the person who hurt you.
Document. Get medical attention if needed and get photos of any injuries that you
sustained. Have photos signed and dated by medical or law enforcement personnel if
possible. A friend or family member can also sign and date for future evidence.
Get help. Do not try to do this alone. It may be awkward or embarrassing to reach out to
others, but your health and life may be at risk. If you cannot seek help for yourself, think
of those who love you and may depend on you. Go to friends, the police, family, an
emergency room, or a local shelter.
If you become a victim of domestic violence, always remember – it is not your fault. It
can happen to anyone. Anyone who physically attacks another person is responsible for
his or her actions. The most important thing is to get safe and stay safe.
Everyone is capable of loving and being loved, no matter what their HIV status. If the main thing
keeping two people together is guilt, pity or fear of loneliness this is not healthy for either
partner. If you are unhappy with the relationship for whatever reason, the chances are your
partner will be too sooner or later. Break-ups can be harder if there is bad feeling between you
and it is important to try to respect and be honest with each other. Sometimes people try to
disguise their true feelings and create situations that will mean the end of the relationship without
taking responsibility.Some people physically or emotionally ‗disappear‘ or break one of the
relationship‘s key rules knowing it will provoke the end. If your relationship ends you may feel
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emotions like shock, fear, anger and sadness. This is normal and after the loss of your
relationship you might go through a grieving process. There may be practical considerations
during a break-up such as finances, property you jointly own and arrangements for children or
pets. A better way to work through a relationship ending is to be direct and honest with your
partner. This can be hard but a counselor can help you manage this.
OPPORTUNISTIC INFECTIONS AND AIDS RELATED CANCERS
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HIV weakens your immune system, leaving your body vulnerable to certain infections and
cancers. Such infections are called "opportunistic" because they take the opportunity to attack the
body when your immune system is weak. The cancers are called "AIDS related" because they
appear mostly in people who have advanced, later-stage HIV infection, and known as AIDS.
When you die of AIDS, you do not die from HIV itself. You die from opportunistic infections
(or "OIs"). Often, people are infected with the OI long before they become infected with HIV.
Their functioning immune system keeps the OI under control, so they do not have any symptoms
of the infection.
Once HIV damages their immune system enough, the OI becomes uncontrolled and makes them
sick. If you have HIV, you can take antibiotics to prevent the OI from causing disease. For
example, one common opportunistic infection is Pneumocystis jiroveci pneumonia (also called
PCP). Most people already have the microbe that causes PCP in their body, but it does not make
them sick. An HIV-positive person, however, may need to take antibiotics to keep from getting
very sick.
The significance for early diagnosis
It is important to catch the early symptoms of OIs and AIDS-related cancers before they take
hold in various organs of the body, such as the lungs and brain. The sooner your doctor can
diagnose and treat the condition, the more likely to make a full recovery. This means you need to
keep track of symptoms and report them to your doctor. The benefit of starting HIV medicines
even at high CD4 cell counts--starting early may help prevent some damage that is irreversible
and may reduce the risk of damage to organs like the brain, heart, and liver. If you have chosen
not to start HIV medications, also, it is important to have your CD4 count checked every 3 to 4
months. OIs and AIDS-related cancers tend to occur more commonly in people with lower CD4
counts, and checking your CD4 cell count allows you to begin necessary prophylactic
medications to reduce your risk of opportunistic infections like PCP and mycobacterium Avium
and readdress HIV treatment.
Some of the key infections include;
Candidiasis (or thrush), is a fungal infection of the mouth or lungs. Most people already have
the Candida fungus in their body, but the body keeps it in check. Someone whose immune
system is weakened is more likely to develop problems. Some people show no symptoms, but for
those who have them, symptoms can include:
white patches on the tongue
smooth red areas on the back of the tongue
painful areas in the mouth
changes in taste
decreased appetite
pain or difficulty swallowing
yeast infection of the vagina (vaginal itching and white discharge)
sensitivity to spicy foods
Treatments for thrush include oral drugs (suspensions) that you swish around in your mouth and
swallow as well as oral antifungal medications.
If you are taking drugs for thrush or a yeast infection, be sure to:
brush your teeth after each meal;
rinse your mouth of all food before using either lozenges or suspension;
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Avoid hurting your mouth: use a soft toothbrush; avoid foods and drinks that are too hot
or too spicy.
Cervical cancer (for women), cervical cancer often is caused by the same virus that causes anal
and genital warts. The virus is called human papilloma virus (or HPV). Safer sex may help
reduce the risk of this infection, but many women who are infected with HPV never had genital
warts. In the early stage, there are often no symptoms. Some women, however, may notice
bleeding between their periods or spots of blood after sex. Women should get regular exams with
pap smears to check for cervical cancer.
Coccidioidomycosis, this is caused by a fungus present in soil. The fungus is inhaled from dust
and dirt carried in the air or wind, rather than passed from person to person. Most people don't
have symptoms. Others will feel like they have the flu, sometimes with chest pain and a cough.
Infection can lead to meningitis, including headache, fever, and altered mental states. Treatment
with antifungal drugs usually is given for life to prevent the infection from returning, even
despite effective treatment with HIV medications. Sometimes surgery is required to remove
infected tissue. The seriousness of the disease depends on what part or parts of the body the
fungus has infected.
Cryptococcosis, this fungus is present in soil, usually where there are bird droppings,
particularly those of pigeons. It can be passed through the air or wind. It's important to avoid
handling birds, including pets, and to avoid areas with lots of bird droppings. The fungus can
infect different organs, such as the lung, heart, and central nervous system. Symptoms vary,
depending on where the infection occurs. In the lung, for example, symptoms can include:
Cough
Fever
Malaise
shortness of breath
This infection is very serious. It can lead to meningitis (infection around the brain) and
pneumonia. Drugs are available to treat this infection but antibiotic treatment is necessary until
the immune system has improved on HIV medications.
Cryptosporidiosis, this parasite is found in the faeces of many animals, including humans. It can
contaminate drinking water. To avoid infection from people, avoid contact with faeces (diapers,
sex involving direct oral-anal contact). Try to avoid accidentally swallowing water when
swimming in pools, rivers, or lakes. Do not drink from streams. Drink bottled water or use filters
on tap water (look for "submicron" filters, which will filter out this parasite). Avoid eating raw
oysters as they can carry eggs of cryptosporidia.
Symptoms of this infection include:
persistent watery diarrhea
nausea
vomiting
abdominal pain
cramping
loss of appetite
weight loss
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The main treatment for cryptosporidiosis is effective HIV treatment. In conjunction with ART,
treatment with antimicrobials can hasten clearance and improve resolution of diarrhea.
Cytomegalovirus (CMV), cytomegalovirus (or CMV) is passed by close contact through sex
and through saliva, urine, and other body fluids. It can be passed from mother to child during
pregnancy and by breast-feeding. If you are not infected, safer sex may help prevent infection.
Many people are infected with this virus, though they have no symptoms. In HIV-positive
people, the infection can be extremely serious. Symptoms can include:
blind spots in vision, loss of peripheral vision
headache, difficulty concentrating, sleepiness
mouth ulcers
pain in the abdomen, bloody diarrhea
shortness of breath
lower back pain
confusion, apathy, withdrawal, personality changes
Drugs are available to keep symptoms of the infection under control. Anti-HIV drugs can
improve the condition, too. If you haven't started taking drugs for HIV, it may be best to wait
until you have been on treatment for CMV for a few weeks. Treatment can prevent further loss
of vision but cannot reverse existing damage. If you experience any vision problems, tell your
provider immediately.
Herpes simplex virus, herpes simplex is caused by a virus. Symptoms include red, painful sores
on the mouth ("fever blisters"), genitals, or anal area. Genital herpes is passed through sexual
contact. Herpes on the mouth is easily spread through kissing. It can be spread to the genitals
through oral sex. Although less common, the virus can be spread even if you don't have blisters.
Safer sex can decrease the risk of infection. Drugs are available to help herpes blisters heal, but
there's no cure. Outbreaks may occur periodically for the rest of your life. Suppressive therapy
with daily antiviral treatment can help reduce the number of outbreaks.
Herpes zoster (shingles), shingles is caused by a virus, the same one that causes chickenpox.
People with shingles usually had chickenpox as a child, and shingles is caused by reactivation of
the herpes virus.
Symptoms can include:
painful skin blisters on one side of the face or body
some vision loss
The skin blisters can be extremely painful. Treatment is available to help the blisters heal, but
there is no cure of the underlying infection, which stays dormant in the body and can reactivate.
Zoster can lead to painful nerve inflammation that persists after the skin rash has healed. Early
treatment can help reduce the likelihood of long term nerve pain. Antibiotic ointments can help
keep the infection from becoming super-infected. The skin rash should be kept covered until
healed to prevent spreading the infection to those in close contact.
Histoplasmosis, this infection is caused by a fungus present in the soil contaminated with bat or
bird droppings. It gets in the air when the soil is disturbed, such as when people explore caves. It
is not passed from person to person.
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Fever
weight loss
cough
shortness of breath
abdominal pain
Histoplasmosis can be quite serious but is treatable with antibiotics, which need to be continued
until the immune system has improved with HIV treatment. Long-term suppression with
antibiotics may be required if the disease relapses.
HIV dementia, Sometimes called "HIV encephalopathy" or "AIDS dementia," this disease is
caused by HIV invading the brain. It is most common when the CD4 cell count has gotten very
low.
memory loss
depressed mood
unsteadiness when walking
irritability
apathy
clumsiness
shaky hands (poor handwriting)
personality changes
People who are affected need to have a strong support system. Friends, roommates, or family
members can help make sure that HIV medications are taken on time, in the right combination,
and at the right dose. If memory is poor, a person can use notes, calendars, and alarms to
remember medicines, appointments, and other important events. It may even be prevented by
using HIV drugs that cross into the blood.
HIV wasting syndrome, wasting syndrome refers to unwanted weight loss that is equal to more
than 10 per cent of their body weight. For a 150-kilograms man, this means a loss of 15
kilograms or more. Weight loss can result in loss of both fat and muscle. Once lost, the weight is
difficult to regain. The condition can be caused by many things: HIV, inflammation, or
opportunistic infections. The weight loss may be accompanied by low-grade fever, and
sometimes diarrhoea.
The person may get full easily, or have no appetite at all. The most important treatment for
wasting syndrome is effective treatment of HIV with antiretroviral. In addition, the condition
may be controlled, to some degree, by eating a good diet. A "good diet" for an HIV positive
person may not be the low-fat, low-calorie diet recommended for healthy people. Compared with
other people, you may need to take in more calories and protein to keep from losing muscle
mass. To do this, you can add to your meals:
peanut butter
legumes (dried beans and peas)
cheeses
eggs
instant breakfast drinks
milkshakes
sauces
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You can also maintain or increase muscle mass through exercise, especially with progressive
strength-building exercises. These include resistance and weight-lifting exercise.
Isosporiasis, this condition is caused by a parasite found in faeces. It may contaminate food or
drinking water. To avoid infection, do not drink water from rivers and streams. When
appropriate, drink bottled water or use filters on tap water. Cook food thoroughly.
stomach cramps
watery diarrhea
weight loss (which may be significant)
weakness
loss of appetite
fever
Rehydration and nutritional support are key components of treatment. Anti-parasitic drugs can
treat the infection, but they may need to be taken for a long time to keep the parasite in check.
Immune reconstitution with HIV treatment may help prevent relapse.
Kaposi sarcoma, kaposi sarcoma (KS) is the most common cancer associated with HIV. This
cancer is caused by the human herpes virus 8 (HHV-8). The virus can be spread by deep kissing,
unprotected sex, and sharing needles. It also can be spread from mother to child. Symptoms
include brown, purple, or pink lesions (or blotches) on the skin, usually on the arms and legs,
neck or head, and sometimes in the mouth. KS can also affect the lungs and intestines and cause
swelling in the legs. Sometimes there is tooth pain or tooth loss, weight loss, night sweats, or
fever for longer than 2 weeks. HIV drugs can slow the growth of lesions, even reverse the
condition itself.
Other treatments for KS are meant to relieve symptoms and improve the appearance of the
lesions. It's important that people with KS keep lesions clean. They should call their provider if
the lesions are spreading, if swelling gets worse, or if they develop a cough, shortness of breath,
or problems in the gut.
Lymphomas, lymphomas associated with HIV include a large group of cancers that begin in the
cells of the immune system. The cancers can spread to different parts of the body, such as the
central nervous system, liver, bone marrow, and gastrointestinal tract. Symptoms depend on
where the cancer resides. Treatment varies depending on the specific cancer, but can include
radiation and chemotherapy. HIV drugs, by boosting the immune system, can help the body fight
the cancer, too.
Mycobacterium Avium Complex (MAC), this condition is caused by bacteria present
everywhere in the environment--in soil, food and animals. It is difficult to avoid exposure
because MAC is in so many places. In general, avoid handling soil, and carefully handle and
prepare food.
Symptoms of MAC can include:
fever
night sweats
weight loss
loss of appetite
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chronic diarrhea
weakness
fatigue
abdominal pain
Pneumocystis pneumonia (PCP), any fungus found in many places in the environment causes
this condition. Nearly two out of three children have been exposed to it by age 4. However, PCP
rarely causes disease unless there are underlying problems with the immune system, like HIV.
The fungus can affect many organs, the most common being the lung.
Fever
shortness of breath
night sweats or fatigue
dry cough
Pneumonia, recurrent, bacterial pneumonia (often caused by Streptococcuspneumoniae or
Haemophilusinfluenzae) can affect people whose immune systems are not weakened by HIV.
Persons infected with HIV, however, are much more likely than people who are HIV negative to
develop bacterial pneumonia. Fortunately, these pneumonias can be treated with available
antibiotics. HIV-infected persons should receive a vaccine called the Pneumovax, to help prevent
pneumonia caused by Streptococcus pneumonia.
Salmonella Septicemia, Recurrent, salmonella is a bacteria often found in food such as
undercooked poultry, eggs, and unpasteurized milk. It is also present in water, soil, kitchen
surfaces, animal faeces, and raw meat and on certain animals, such as reptiles. Because of the
risk of salmonella, reptiles are not recommended as pets for HIV infected patients, especially if
their immune suppression is advanced.
diarrhea
fever
Salmonella septicemia usually is treated with antibiotics. Drug therapy may be required
for life to prevent relapses.
Toxoplasmosis, the parasite that causes toxoplasmosis is found in almost all animals. Cats and
birds are major sources of infection. Indoor cats pose less risk, but cats that are free of
toxoplasmosis can go outside can carry it back in. Avoid cat faeces (use gloves to change litter).
Avoid handling birds. Never eat undercooked meats, particularly pork or lamb.
dull, constant headache
changes in vision
disorientation
seizures
Toxoplasmosis can be treated with antibiotics, which need to be continued until the immune
system improves. If you are being treated for toxoplasmosis, see your doctor promptly if you
develop a rash or if your symptoms worsen. Help your memory by posting reminder notes. Keep
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keys, glasses, phone numbers, and other important items in the same place, so you can always
find them. Keep a calendar of your appointments posted in a place you look at a lot, such as
across from your favourite chair.
Tuberculosis (TB), mycobacterium tuberculosis disease is caused by a bacteria passed through
the air when someone coughs, sneezes, or talks. It is spread easily in closed-in places, such as
low-income housing, shelters, and jails. Tuberculosis (TB) can occur early in the course of HIV
infection, often when CD4 counts are slightly below normal. Symptoms can include fever, night
sweats, weight loss, fatigue, loss of appetite, and coughing. TB can be prevented and usually is
curable. If left untreated, it can kill. It is important that you take your TB medication exactly as
prescribed (missed doses can result in the TB germ developing resistance to the drug). Some TB
medications can damage your liver, but your liver usually recovers if the medications are
stopped. If your skin or eyes turn yellow, or if your urine darkens to the colour of Coca-Cola
while you are taking tuberculosis medications, see your doctor immediately. It could be a sign of
liver damage.
Many people who are exposed to TB do not develop active tuberculosis but have a small amount
of TB in the body. If your provider diagnoses you with exposure to TB but not active TB, they
may recommend treatment to reduce the likelihood of developing active disease.
Forms of TB
Not everyone infected with TB bacteria develops ―active‖ disease.
Latent TB; most people with healthy immune systems can fight off TB bacteria, even after they
breathe them in and are infected. People with latent or inactive TB have no symptoms. They
neither feel sick nor spread the disease to other people. In some people, TB stays latent or
inactive for their entire lives. But in other people, latent TB turns into active disease if their
immune system is damaged or weakened, through things like HIV infection, cancer, or transplant
surgery that requires taking drugs to suppress the immune system.
Active TB; some people infected with TB develop active disease. Active TB usually causes
symptoms like coughing and weight loss. People with active TB can spread it to others. Active
TB may develop either soon after infection or years later when a person‘s immune system
becomes weaker.
The link between TB and HIV
People with weakened immune systems are more likely to develop active TB disease. This
includes people living with HIV, children, elderly people, and people who take drugs that
suppress the immune system. People living with HIV are at least ten times more likely to
develop active TB disease than HIV-negative people. You can develop active TB with any CD4
count. TB can worsen HIV disease progression. Having active TB disease while HIV + is an
AIDS-defining condition. Worldwide, TB is the leading cause of death in HIV+ people. You
must be screened every year for TB if you are HIV+ by having a skin or blood test.
TB Symptoms
After TB bacteria are inhaled, they settle in the lungs. People with healthy immune systems can
usually fight the bacteria and keep it from multiplying. The immune system may build structures
that wall off the bacteria. These structures can burst, leaving scars in the lungs. If a person‘s
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immune system is too weak and the structures burst, the bacteria can get out and enter the
bloodstream.
Once in the bloodstream they travel to other parts of the body including the brain, kidneys, and
bones. This is called ―extra pulmonary TB.‖ Extra pulmonary TB is more likely in people with
advanced HIV disease.
People with active TB disease may develop symptoms including:
Cough lasting more than 2-3 weeks
Coughing up sputum (phlegm) or blood
Unexplained weight loss
Fever or chills
Night sweats
Fatigue (unusual tiredness)
Loss of appetite
Chest pain
Preventing TB
TB is spread through the air when an infected person coughs, sneezes or spits. It usually takes a
long time for TB transmission to occur. Family members of people with TB, people living in the
same house, health-care workers, and people who live in residential facilities like homeless
shelters and prisons are most likely to get TB. People with latent (not active) TB do not spread
the disease. Once a person with active TB starts treatment, they usually cannot spread the disease
after 2-3 weeks on treatment. People with active TB should be separated from others until they
can no longer spread the disease. If you have TB or spend time around people with TB, wear a
disposable face mask. Certain types of air filters can trap the TB bacteria, and ultraviolet light
can kill it.
Liver Cancer
The increased risk for liver cancer among HIV+ people is strongly linked to infection with the
hepatitis B and/or hepatitis C viruses (HBV and HCV, respectively). There is a direct link
between having a low CD4 cell count and having an increased risk for liver cancer. Other factors
involved in damaging the liver include opportunistic infections (e.g., Mycobacterium avium
complex, tuberculosis, cytomegalovirus, and cryptosporidiosis), excessive alcohol and
recreational drug use, and even some HIV drugs.
Many people have no symptoms until the disease is very advanced:
Weight loss
Nausea and vomiting
Upper belly pain
Loss of appetite
White, chalky stool
Swelling of the belly
Jaundice (yellowing of the eyes and/or skin)
Lung Cancer
Although lung cancer is not an AIDS-defining cancer, people living with HIV have a greater
chance of developing lung cancer than HIV-negative people. This difference is likely due to the
weakened immune systems of those living with HIV. Unfortunately, lung cancer is one of the
deadliest cancers. An increased risk of developing lung cancer is also strongly tied to smoking.
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Both the duration (how long) and amount (how much or how many per day) of smoking
contribute to the risk for lung cancer. Second-hand smoke exposure (breathing smoke in the
environment) also contributes to an increased risk for lung cancer. The best way to prevent lung
cancer is to avoid or stop smoking.
Symptoms are:
Cough, with or without phlegm or mucus
Coughing up blood
Shortness of breath
Chest pain
Fatigue
Loss of appetite
The significance of healthy bones
Bones play several significant roles in your body. They support and help body movement. They
protect the brain, heart, and other organs from injury. Bones also store minerals such as calcium
and phosphorous. Bones are living tissue and change during your life. Every day, your body
removes old bone and adds new bone in its place.
In young people, more bone is added than removed.After age 30, more bone is removed than
added. This makes the bones lighter and more fragile, putting you at greater risk for injury. Many
people have weak bones and do not know it. This is because bone loss often happens over a long
period of time and does not hurt. For many people, a broken bone is the first sign that their bones
have weakened.
Bone Loss and HIV
Bone loss and weakened bones occur more often in people living with HIV positive. It could be
due to HIV itself, HIV drugs, or HIV+ people getting older. There are three bone conditions to
which HIV+ people are especially prone:
1. Osteopenia
Osteopenia is caused by a loss of bone minerals that leads to lower-than-normal bone density.
Most often, osteopenia has no symptoms. The only way to know if you have this condition is to
get a bone density test done. If you do find you have osteopenia, there are things you can do to
stop it and possibly even reverse it. Having osteopenia does not mean that you will definitely
develop osteoporosis; however, it does mean that you are more likely to develop it.
Although bone loss with osteopenia is generally less severe than with osteoporosis, it does
indicate that bones are weaker and may be more likely to break. Osteoporosis is a more serious
condition than osteopenia, and refers to a loss of bone density and bone mass. Over time,
breaking down more bone than is put back causes lower bone density, also called bone mineral
density, which means there are lower-than-normal levels of minerals in the bones. Bones become
weak and are more likely to break. People with osteoporosis most often break bones in the wrist,
spine, and hip.
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Osteonecrosis (avascular necrosis)
Osteonecrosis means bone death. It is caused by a loss of blood supply to the bone.
Osteonecrosis may cause pain at the affected joint. It usually affects the head of the femur, the
ball-shaped part of the thigh bone that connects it to the hip. In addition to HIV and HIV drugs,
there are other things that can put you at risk for bone disease:
Risk factors you can control
Diet: Getting too little calcium and vitamin D
Exercise: Not exercising and not being active
Low body weight: Being too thin
Tobacco use: Smoking cigarettes
Alcohol and coffee intake: Drinking a lot of alcohol and/or caffeine
Testosterone levels: Low testosterone levels in men
Menopause: Women lose bone due to hormone changes that happen after menopause.
Risk factors you cannot control
Age: Your chances of getting osteoporosis increase as you get older
Gender: Women have a greater chance of getting osteoporosis
Ethnicity: White and Asian women are at higher risk; Hispanic and African-American
women are also at risk, but less so
Diet and Healthy Bones
Even though you cannot control all of the things that lead to bone disease, you can control your
diet. The mineral calcium makes up a large part of your bones. This means that if you do not get
enough calcium in your diet, your bones may get weaker. Calcium is found naturally in some
foods, and it is added to others. Some foods that contain calcium are:
Dairy products, including milk, yogurt, and cheese
Soy products: tofu, tempeh, soy milk
Seeds: sesame seeds, chia seeds, and flax seeds
Dark leafy greens: spinach, kale, chard, collard greens, turnip greens
Broccoli
Beans: black beans, navy beans
Dried fruits and nuts: figs, almonds, brazil nuts
Oranges and orange juice (especially calcium-fortified orange juice)
Salmon or sardines with the bones
Most HIV positive people still need to take calcium pills every day even if their diet includes
foods with calcium in them. A registered dietitian or other trained health care provider can help
you decide if you should take calcium supplements. If you do take calcium supplements, it may
be a good idea to take calcium pills with vitamin D in them, since your body cannot use calcium
without vitamin D. Talk to your health care provider before taking any supplements and do not
take more than these amounts unless instructed to by your health care provider.
Exercise and Healthy Bones
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If you do not have joint pain, it is important to exercise on a regular basis. When you exercise
your muscles pull against your bones, which help keep them healthy and strong. The best kind of
exercise to keep your bones strong is exercise that uses weight or resistance such as:
Walking (you can use ankle weights)
Working out with weights or weight machines
Stair climbing
Hiking
Aerobics
Jogging
If you cannot do high-impact weight-bearing activities, try lower-impact ones. For example, try
walking or stair climbing instead of jogging. If you have not exercised regularly for a while,
check with your health care provider before beginning a new exercise program. Once you have
your health care provider‘s approval, start your exercise routine slowly. Every two weeks make
your routine five minutes longer. In the end, you should be working out three to seven times a
week, about 20-60 minutes each time. Diet and exercise are best for keeping bone loss from
occurring. They can also be helpful if you already have osteopenia or osteoporosis, but in some
cases, your health care provider may also recommend treatment with medication.
Protecting Your Bones
HIV positive people need to be particularly careful about bone health. Speak to your health care
provider and follow these steps to help protect your bones:
Follow a diet with plenty of calcium and vitamin D
Seek the advice of a registered dietitian if you need help choosing the right foods
Take calcium supplements if needed (talk to your health care provider first)
Ask your health care provider what exercises are safe for you, and start doing them
Stop smoking and reduce your intake of caffeine and alcohol
Tell your health care provider if you are experiencing joint pain, especially in the hip area
Anemia
Anemia is a medical condition that occurs when you have a lower than normal amount of red
blood cells (RBCs) in your body. It can also happen if your hemoglobin (HGB) level is below
normal. HGB is a protein that uses iron to carry oxygen. It is found in RBCs and gives blood its
red color. HGB carries oxygen from the lungs to the rest of the body. Oxygen is necessary for the
body to make energy and carry out all its functions. If you have anemia, your body does not
carry enough oxygen in your blood. Anemia can be mild, moderate, or severe. It can also be
temporary or a longer-lasting problem. With severe or long-lasting anemia, the lack of oxygen in
the blood can damage the heart, brain, and other organs of the body. Very severe anemia can
even cause death. The good news is, anemia can be identified and treated.
Key Symptoms
At first, anemia can be so mild that it goes unnoticed. Symptoms usually appear and get worse
as the anemia gets worse. Symptoms can include:
Severe fatigue (tiredness)
Difficulty breathing; being short of breath
Rapid heart rate
Pale skin
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Decreased pinkness of the lips, gums, lining of the eyelids, nail beds, and palms
Feeling cold
Confusion or loss of concentration
Dizziness or fainting
Sadness or depression
Causes of Anemia
There are many possible causes of anemia, including:
A shortage of iron, which is most commonly due to blood loss from heavy or long
menstrual periods, frequent nosebleeds, or internal bleeding; referred to as ‗iron
deficiency anemia‘
A shortage of B vitamins: a shortage of the vitamin B12 is referred to as ‗pernicious
anemia;‘ a shortage of the B vitamin folic acid (folate) can also cause anemia
HIV infection itself
Many opportunistic infections (OIs) related to HIV disease
Kidney or bone marrow damage
Some thyroid conditions
Some drugs that are commonly used to treat HIV and related infections
Anemia and HIV
Anemia is an additional problem for people living with HIV. Factors that are linked to a greater
likelihood of anemia in HIV+ people include:
Being a woman
Having lower CD4 cell counts
Having a higher viral load
Poor nutrition: not eating enough of the right foods, or not taking in the nutrients of the
foods eaten (malabsorption)
Certain hepatitis C drugs
Anemia is a common condition in HIV positive people, especially women. It can cause feelings
of fatigue, lower your quality of life, and increase the chances that your HIV disease will get
worse. If you are feeling tired for unexplained reasons or experiencing any of the other
symptoms listed above, talk to your health care provider. He or she can run tests to determine if
anemia is the problem. If so, your health care provider will look for the cause and suggest
treatment options. Treating anemia improves the health and survival of HIV+ people.
Lipodystrophy and body changes
Lipodystrophy means abnormal fat changes. It is used to describe a number of changes in body
fat that are experienced by many people living with HIV. Lipodystrophy can also include
changes in fat and sugar levels in the blood of HIV positive people. There is no official definition
of lipodystrophy in HIV; it is generally broken down into two categories:
Body shape changes – Includes fat loss (lipoatrophy) and fat gain (lipoaccumulation or
lipohypertrophy) or movement of fat from one area to another (redistribution) in
particular areas of the body
Metabolic complications – Includes increases in fats and sugars in the blood
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HIV infected people can experience both body shape changes and metabolic complications. This
is sometimes called lipodystrophy syndrome.
Body Shape Changes
Changes in the shape of your body can be caused by fat loss, fat build up, or fat redistribution.
Fat loss may happen in the:
Arms and legs (fat loss may cause veins to appear larger in the arms and legs)
Buttocks
Face (sunken cheeks)
Fat build up may happen in the:
Stomach
Breasts
Back of the neck (―buffalo hump‖)
Round lumps of fat may appear under the skin (lipomas)
In many cases, lipodystrophy affects men and women differently. Women are more likely to see
fat gain in their breasts and stomachs while men are more likely to see fat loss in their legs, arms,
buttocks, or faces. However, many men and women suffer from both symptoms. It is not clear
why there might be differences based on sex. It may have something to do with hormones or
with how men and women burn fat differently. Lipodystrophy can dramatically change your
appearance. These changes can create feelings of poor self-image and low self-esteem. In some
cases, you may want to stop taking your HIV drugs. Or you may put off HIV treatment due to
fear of experiencing lipodystrophy symptoms. It is important that you talk to your health care
provider if you are feeling this way so that you take the necessary steps to improve your health.
Metabolic Complications
Changes in fat (lipids) and sugar (glucose) in your blood are called metabolic complications and
include:
Increased lipids in your blood such as cholesterol and triglycerides (hyperlipidemia)
Increased glucose levels (hyperglycemia)
Insulin resistance or diabetes
Increased lactic acid in your blood (lactic acidemia)
Metabolic changes cannot be seen with the naked eye; they can only be confirmed through blood
tests. Without treatment, they can cause serious long-term health problems.
Increased levels of cholesterol and triglycerides can put you at a higher risk of developing
heart disease or having a heart attack or stroke.
Increased glucose and insulin levels greatly increase the chance of developing diabetes, a
disease that can cause vision and kidney problems and may be life threatening.
Increased lactic acid can lead to a rare but dangerous condition called lactic acidosis.
Symptoms include nausea, vomiting, or stomach pain; feeling very weak and tired; and
shortness of breath.
It is important that you and your health care provider make sure you get regular lab tests to check
for metabolic complications. Call your health care provider right away if you are experiencing
symptoms of lactic acidosis.
Causes of Lipodystrophy
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The exact causes of lipodystrophy are still unknown. There are different causes for different
symptoms, but some causes are related to Antiretroviral drugs such as;
Fat loss
Fat gain
Increased lipids
Increased glucose levels, insulin resistance, and diabetes
Lactic acidosis
Not everyone taking HIV drugs develops body shape changes or problems with fat or sugar
levels in the blood. Other factors that may cause lipodystrophy include:
Starting HIV treatment with lower CD4 cell counts
Starting HIV treatment at an older age
Being on an HIV drug regimen(the longer the time on the regimen the higher the risk)
HIV itself
Cigarette smoking
Fat loss
 Switching or avoiding some drugs: The results of switching drugs may be uncertain and
can take some time; you and your health care provider may decide that changing
medications is not right for you. Be sure to talk with your health care provider before
stopping or switching any medications.
 Injections, implants, and plastic surgery: Some people have procedures done to restore
fullness in the face. Injections of fat or synthetic fat substitutes can fill out sunken cheeks,
as can cosmetic cheek implants. If you are considering plastic surgery, research the
options carefully. Some treatments are short-term, can be very expensive, and do not
work for everyone. It is important to consult with a plastic surgeon or dermatologist
experienced in treating HIV-related lipodystrophy.
Fat gain
Human growth hormone (HGH): HGH may decrease excess fat build up in the
stomach; however, it can also cause fat loss in the arms, legs, or face.
Liposuction: Liposuction is a plastic surgery procedure that can be used to remove fat
from the back of the neck and around the breasts, but not usually in the stomach (since fat
gain caused by lipodystrophy in this area is deep, internal fat). Liposuction tends to be a
temporary solution and the removed fat frequently returns.
Increased lipids: ARVs also determine the level of lipids in the body.
Switching HIV drugs: There are some HIV drugs that have less of an impact on
cholesterol and triglycerides.
Lipid-lowering medications: Certain drugs are available for reducing lipid levels. Some
lipid-lowering medications interact with HIV drugs, so it is important for a health care
provider to review all your medications before prescribing anything.
Increased glucose levels, insulin resistance, and diabetes
Switching HIV drugs: Switching to other HIV drugs may reduce glucose levels. Speak
to your health care provider about this option before stopping any medications.
Medications: There are a variety of drugs that can be used to treat these conditions; talk
to your health care provider about which ones might be right for you.
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Diet and physical activity: Increasing physical activity and improving your diet may
help with all of the symptoms of lipodystrophy. Physical activity can help reduce fat gain,
build muscle, and reduce elevated lipid and glucose levels.
Reducing the amount of saturated fats you eat may help reduce cholesterol levels. Saturated fats
are found in animal products. Reducing the amount of fats and carbohydrates you eat may help
reduce triglyceride levels. More fiber in the diet helps to control insulin resistance and help
decrease stomach fat. While there is no definite proof that these methods improve lipodystrophy,
there is no down side to eating right and exercising. It is a good idea to speak with a nutritionist
or dietician about the steps you can take to improve your diet and level of physical activity. If
you are experiencing lipodystrophy, it is important to take care of your body. Keep all of your
appointments with your health care provider, get regular lab tests, and tell your provider about
any changes in the way you feel or in your body shape. Recording body measurements and
weight on a regular basis, whether or not you are taking HIV medications, may give you valuable
information down the road.Some of these body shape changes and metabolic problems are linked
with heart disease and strokes in HIV positive people, so make sure you are checked regularly.
Other factors, such as high blood pressure, may also contribute to the risk of heart attacks and
strokes and need to be treated. You can also support your body, and especially your heart, with a
healthy diet, regular physical activity, and stopping smoking.Even though the physical changes
of lipodystrophy can cause emotional distress, it is not advisable if you have lipodystrophy to
stop taking your HIV drugs. If you are concerned about your appearance, talk to your health care
provider about treatment options. There are many things that you can do to stay healthy and feel
good about your body.
Lactic acidosis
Mitochondria are small organs inside our cells. They help convert energy in the food we eat into
energy our body uses to function. Like solar cells that convert sunlight into electricity,
mitochondria are intracellular power plants that convert glucose (sugar) into usable energy. At
the same time, lactic acid is made as a waste product. Normally, the body breaks down lactic
acid and gets rid of it. Certain HIV drugs sometimes have negative side effects that may lead to
liver problems.
One such side effect is mitochondrial toxicity. In mitochondrial toxicity, the mitochondria are
damaged and lactic acid is not broken down. This can cause levels of lactic acid to rise. When
higher than normal levels of lactate build up in your blood, this is called hyperlactatemia. The
body can often cope with hyperlactatemia. If the levels of lactic acid become too high, a rare, but
serious condition called lactic acidosis can occur.Lactic acidosis can develop when your cells
make too much lactic acid or when your liver is not working properly to get rid of it. Certain
HIV drugs can sometimes cause these problems:
Cells make too much lactic acid: Some HIV drugs can damage the mitochondria. This is
known as mitochondrial toxicity. It can cause the mitochondria to have trouble making
energy. Lactic acid is made by cells that are not getting enough energy from their
mitochondria.
The liver not working properly: HIV drugs can also cause the liver to become fatty, a
condition called hepatic steatosis. A fatty liver does not work well and cannot break
down lactate efficiently. Lactic acidosis is a rare side effect of HIV drugs.
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Symptoms of Lactic Acidosis
The symptoms of lactic acidosis include:
Persistent nausea, vomiting, and abdominal pain
Unexplained tiredness
Shortness of breath
Rapid breathing
Enlarged or tender liver
Cold or blue hands and feet
Abnormal heart beat
Weight loss
It is important to get in touch with your health care provider right away if you experience these
symptoms. Because lactic acidosis can be fatal, it is best to identify and treat it early. Because
there is a connection between liver problems and lactic acidosis, it is important that your health
care provider check your liver function while you are taking HIV drugs, especially if you have a
history of heavy alcohol use or a liver problem.Many people on HIV drugs have elevated lactate
levels. It usually does not cause any problems. For that reason, lactate tests should not be done
on a regular basis. However, if you experience any of the symptoms of lactic acidosis described
above, tell your health care provider immediately. Although lactic acidosis can be lifethreatening, it is also very rare. The point of learning about lactic acidosis is not to scare you.
Rather, it is to help you be aware of important signs in your body that may indicate a serious
problem. In this way, you will be better able to recognize symptoms of lactic acidosis, tell your
health care provider right away, and get treatment if necessary.
Peripheral Neuropathy
Many people living with HIV develop problems that involve the nervous system. The nervous
system controls thinking, movement, sensations, and feelings. There are two parts of the nervous
system: the brain and spinal cord (central nervous system) and the peripheral nerves (peripheral
nervous system). The peripheral nerves run through the body like webbing, connecting all the
parts of the body to the brain and spinal cord. Any disorder or problem involving damage to the
peripheral nerves is called peripheral neuropathy or PN. The most common peripheral
neuropathy is called distal symmetric polyneuropathy (DSP). This is what most HIV positive
people always talk about when they say they have neuropathy. Most health care providers know
it as a ‗sock and glove‘ nerve problem, because the area‘s most affected are where you wear your
socks and gloves.
Causes of PN
The causes of PN are also related to either HIV, or drugs that are toxic to the nervous system
(neurotoxic drugs), or a combination of both may cause the damage to the peripheral nerves.PN
happens when the nerves between the feet and/or hands and the spinal cord become damaged.
Like frayed wires that can spark or misfire, these damaged nerves do not send their electrical
signals properly. As a result, PN can cause feelings of numbness, tingling, burning, itching, or
shooting pain. Some people with PN describe their pain as ―holding a lit match to my feet,‖ or
―walking on broken glass.‖ This chronic pain can lead those who suffer to become isolated,
depressed, and even suicidal.
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There are certain risk factors for PN:
Low CD4 cell count
Older age (greater than 50)
Medical conditions (for example, diabetes)
Alcoholism
Vitamin B12 deficiency
Neurotoxic drugs (see below)
Signs of PN include:
Tingling
Pins and needles
Numbness
Itching
Feet feeling like they are asleep
Stumbling when you walk
Feet throbbing or cramping at night
Sudden sharp shooting pains
It may be easy for you or your health care provider to overlook slight or occasional sensations
like the ones listed above. Do not ignore these symptoms, as they may get worse. If you have any
of these symptoms, talk to your health care provider right away so that you can receive early
diagnosis and treatment. Your health care provider will examine you and ask questions about
your symptoms, medications and supplements, work environment, exposure to toxins, history of
alcohol use, and family history of neurological disease. Usually, PN is diagnosed based on signs
and symptoms of your report. However, your health care provider may also order tests to
determine the type and extent of nerve damage. Blood tests to rule out other potential causes of
PN are most common. If your symptoms are unusual, your provider may refer you to a
neurologist, who may suggest nerve conduction velocity (NCV) testing or electromyography
(EMG) for further evaluation. NCV looks at the speed of the signals your nerves send, and EMG
looks at whether your muscle can respond normally to an electrical signal from a nerve. Other
types of sensory testing and skin biopsies are generally used in research.
Removing the cause
It is important to maintain your HIV drug regimen so that your viral load stays low and your
CD4 count remains high. This way, you can minimize HIV‘s effect on your nervous system. If
you are on a drug, talk to your health care provider about stopping or switching the drug. If you
decide to stop or switch a drug, it may take six to eight weeks for the PN symptoms to decrease.
If the symptoms continue, the PN could be due to HIV.
AIMS for PN
The easy way to remember the keys to early diagnosis, treatment and management of PN is to
think about the AIMS:
Awareness – Take time to notice what your body feels like and how you move.
Information - Never stop asking questions, reading, trying new drugs, therapies, or tools.
Medical Team – Choose health care providers who are knowledgeable about HIV and
neurological problems, willing to listen and answer your questions.
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Support – Finding support is critical. Peer organizations or local HIV support groups can offset
the sense of helplessness and isolation felt by many people who experience chronic pain. Talking
with peers can give you an opportunity to share your frustrations and successes with those who
understand what you are going through.
CRIMINALISING HIV TRANSMISSION
As you live with HIV, preventing others from becoming infected with the virus that you carry is
a primary concern. If you are infected with HIV you are, after all, only too aware of just how
difficult it can be to live with the illness, and why would you wish it on anybody else. This said,
not all HIV positive people take the precautions that they perhaps should.Scare scenarios of
people 'deliberately' or 'recklessly' transmitting HIV to others continue to appear in the media
since, and some of the individuals concerned are criminally charged and imprisoned for their
actions. But while at first it might seem obvious to prosecute someone for recklessly or
intentionally infecting another with an ultimately fatal virus, this assumption, and its
consequences, can present numerous problems. So what are the issues that must be addressed
when prosecuting someone for transmitting HIV? Is it right to try and criminalize HIV positive
people in this way?
Intentional, reckless or accidental transmission
Before looking at the complexities of prosecuting people for infecting others with HIV, it is first
necessary to understand the different types of transmission that can take place. The definitions
below are based on general categories and are not specific to any particular country or legal
system.
Intentional transmission
Intentional (or deliberate or willful) transmission is the most serious form of criminal
transmission. Some individuals (both HIV positive and HIV negative) use needles or other
implements to intentionally infect others with HIV. Others are based on HIV positive people
who have sex with the primary intent of transmitting the virus to their partner. Intentional
transmission also takes place when a negative partner has an active desire to become infected
with HIV. However, this should not lead to prosecution especially if both parties consent.
Reckless transmission
This is where HIV is transmitted through a careless rather than deliberate act. If for example a
person who knows they have HIV has unprotected sex with a negative person, but fails to inform
them of the risk involved, this could be classed as reckless transmission in court. "Reckless" here
implies that transmission took place as part of the pursuit of sexual gratification rather than
because the HIV positive person intended to give their partner HIV (HIV is of course not
'automatically' transmitted every time someone has unprotected sex).
Accidental transmission
This is the most common way that HIV is passed on. A person is generally said to have
accidentally transmitted HIV if:
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They were unaware that they had the virus, and therefore did not feel the need to take
measures to protect their partner.
They were aware of their HIV positive status and they used a condom during sex, but the
condom failed in some way.
Complexities of prosecution
Unfortunately deciding if someone has intentionally, recklessly or accidentally transmitted HIV
is not as simple as the explanations above may suggest. The divisions between each of the three
categories can be very blurred, and depend largely on individual interpretation. Even after a
decision has been made on what grounds to prosecute, a court may still have a hard time
deciding whether to find someone guilty or not. Some of the most problematic issues include;
Proof
It might appear that proof is a straightforward issue, but proving that an individual has
transmitted HIV is exceedingly difficult. Firstly it needs to be proven that the accused (let's call
them A) was definitely the source of the accuser's (B)-infected with HIV. This involves a wide
range of evidence including sexual history, testing history and scientific evidence in the form of
phylogenetics. It compares the DNA of the virus that A and B are infected with. If they are
completely different then it means B almost certainly does not acquire HIV from A, and the case
should probably be thrown out. If the strains are very similar, however, it is possible, though not
conclusive, that A infected B. Phylogenetics cannot reliably estimate the direction of
transmission and therefore it is possible that B infected A.Furthermore, both could have been
infected by the same third party, or different third parties who shared similar strains of HIV. Due
to its shortcomings, phylogenetic evidence should only be considered in the context of all other
evidence. There different ways two people, 'A' and 'B', could be infected with a similar strain of
HIV.
Often, the only definitive proof would be a negative test on B that was performed after A
received a positive test. Even so, if the complainant had had multiple sexual partners, pinning
responsibility on a particular individual is very difficult. In cases where intentional transmission
needs to be proven, evidence needs to be found that A actively intended and wanted to infect B.
Unless there is physical proof of this (e.g. a syringe filled with HIV positive material, a note, or a
written confession), it can often just be one person's word against another. With cases of sexual
transmission, proving intention can be virtually impossible as the very nature of sexual
transmission means there are no witnesses: what happens in the bedroom is essentially private. If
no evidence of intentional transmission is found therefore, a charge of reckless or careless
transmission should probably be chosen.
Consent and disclosure
Almost all criminal convictions involving sexual transmission are brought about because an HIV
positive person has failed to inform their negative partner about their status. In some cases, the
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positive person may have actively lied in response to a direct question in order to persuade their
partner to have unprotected sex. In others, they may simply not have mentioned their status. A
prosecution involving deception should carry a more severe penalty than a simple failure to
disclose, because it affects a person's choice to consent to sex. Consent is an important issue in
all criminal prosecutions. If the accused simply does not mention they are HIV positive, then the
prosecution can probably argue that they had been reckless by not disclosing their status and not
informing their partner of the risks involved in intercourse. However, the defense can well
counter this by saying that the balance of responsibility is 50:50, and that by agreeing to having
unprotected sex, the ‗victim‘ effectively consented to all the risks involved, including that of
HIV. If the accused had actively deceived their partner, and told them they were negative when
they were not, then the prosecution can quite easily argue that the 50:50 balance of responsibility
had been taken away, making the accused more liable to prosecution.
The argument that non-disclosure equals guilt can potentially even be applied if the person on
trial used a condom. Sex with a condom, but without disclosure of status should also count as
reckless transmission. This is because condoms are not always 100% effective. If a condom fails,
and an individual becomes infected with HIV, there is potential for that person to accuse their
partner of being 'reckless' for having withheld information that may have influenced their
decision to have sex.
Assumed status and trust
Disclosing one's HIV status to an intimate partner can be extremely difficult. Many people have
difficulty coming to terms with having HIV and remain in denial of their condition. The fear of
rejection and stigma can also prevent people from being honest, particularly if they are worried
about friends, colleagues or members of their family finding out. Likewise, asking about
someone else's status can be hard because of the risk of offending them, or 'spoiling the moment'.
In such circumstances, many people choose to make assumptions instead.Ironically, this is
particularly true in high-prevalence areas or among high-risk groups where virtually everyone
has heard of HIV. A positive person who engages in casual sex with a negative person may, for
example, assume that by failing to suggest the use of a condom or failing to ask about status, the
negative partner is either already positive themselves or does not care about the risks of HIV.
Likewise, a negative person may assume that by not using a condom and not talking about status,
their partner must be negative too: ―If she was HIV positive, she'd ask me to use a condom...‖ or
―He's not using a condom, so he must be HIV positive, like me‖ There is also the issue of trust.
A relationship can only work if both partners have faith in each other to be honest and truthful.
But when one partner consistently lies or deceives the other, where does the blame lie - with the
person who has been deceptive, or with the person who has been naive enough to trust them?
Police investigations
If HIV transmission is an offence, then the police may assume that it is acceptable to fully
investigate any HIV positive person about whom they receive a complaint. In some cases, this
will involve actively raiding the accuser‘s home for evidence of HIV positive status or
demanding medical records from HIV clinics. The police will be required to track down past
partners to inform them of their risk, or even to persuade them to testify against the accused
individual. How such activities fit in to national laws about privacy and confidentiality needs to
be assessed very carefully, and HIV positive people need to be aware of their rights if ever they
undergo such an investigation. It also needs to be made very clear who should be traced, which
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previous partners should be contacted, and how this should be done to ensure proper counseling
and help is provided. Questions about whether anyone has the right to trace and contact previous
partners if the person concerned does not give consent for this to happen also need to be
addressed.
Reasons for prosecuting
A person who knows that he or she is infected with HIV commits criminal transmission of HIV
if he or she (1) engages in contact with another person involving the exposure of the body of one
person to a bodily fluid of another in a manner that could result in HIV transmission; (2)
transfers, donates or provides his or her blood, tissue, semen, organs or other potentially
infectious body fluids for administration (e.g., transfusion) to another person, or (3) in any way
transfers to another any nonsterile IV or intramuscular drug paraphernalia. The actual
transmission of HIV is not a required element of this crime. It is an affirmative defense that the
person exposed knew the infected person was infected with HIV, knew the action could result in
infection, and consented with that knowledge.
Sometimes a lack of knowledge regarding HIV-associated risk and what a prosecution may
entail could lead to someone making a formal complaint before they later realize it is not in their
interest to do so. An impulsive overreaction upon being diagnosed, due to a misunderstanding of
transmission risk, or acting out of vengeance against a former partner following a bad break-up,
for example, could lead someone in the heat of the moment to try and take legal action. Poor
advice by solicitors/advocates or, as mentioned, police may encourage a complainant to believe
they have a solid case when it is unlikely to lead to conviction. Furthermore, they may later
doubt that the defendant was the source of their infection. Complainants may also be led to
believe they are entitled to complete anonymity only to find their entire sexual history dragged
publicly through the courts in a case that was unlikely to end in conviction anyway.
Criminal prosecution: right or wrong?
Given the ambiguities and difficulties outlined above, it is apparent that any form of legislation
on the issue needs to be clear about what forms of transmission are and are not covered. There
are generally three broad schools of thought on how this should work;
No criminalization at all
Criminal charges should never be brought for transmitting HIV, no matter what the
circumstances. HIV is a virus that acts under its own rules of nature, and therefore the laws of
man can not apply. Banning any prosecution for HIV transmission therefore makes the whole
issue a lot simpler. If not, then this rule poses a threat to public health by leaving individuals who
wish to do harm immune to prosecution.
Criminalization for intentional transmission only
By restricting the law to cases of intentional rather than reckless transmission, it greatly reduces
the confusion amongst HIV positive people over what is legal and what is not. It also cuts down
on the number of HIV positive people being criminalized unfairly, while allowing those who
truly deserve prosecution to be brought to trial. In cases of reckless or accidental transmission,
education and counseling is a more effective prevention method than imprisonment or fines.
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Criminalization for all forms of transmission
As demonstrated, many countries now allow the prosecution of HIV-positive people for all forms
of transmission, including reckless and accidental, and even for exposure where no transmission
has taken place. Some have specific laws permitting this; others use more general criminal laws
to obtain a conviction. As with any type of criminal trial, once one prosecution is successfully
achieved, it sets a precedent for future trials, and makes lawyers more likely to take on similar
cases. This growing trend is of particular concern especially for HIV positive people around the
world. Below is a short summary of some of the arguments for the criminalization of HIV
transmission, and the counter arguments against such legislation;
procriminalization
1. If you are HIV positive, failing to use
protection is wrong, and people who do wrong
should be brought to justice through the law
regardless of their health status or background.
anti-criminalization
Criminalizing HIV positive people does not
address the complexities involved in
disclosure and increases HIV stigma,
particularly when positive people being
brought to trial are demonized by the press.
2. Giving someone HIV is akin to murder.
HIV is an unpleasant virus to live with, but it
is no longer a death sentence, and with
modern antiretroviral drugs, HIV positive
people can live a healthy life for many years.
3. If you are HIV positive, it is your duty to use
protection. The idea of 'shared responsibility' is
based on ideals that came about when HIV was
still a 'gay' illness. With heterosexual
relationships, it is not always a practical reality.
Many women now days do not necessarily have
the power to force their partners to wear a
condom.
The more cases that come to court, the more
people will believe that the responsibility for
having safe sex should lie solely with
positive people. This could in turn lead to
more incidents of unprotected intercourse,
with people believing it to be a legal
responsibility for their partner to disclose any
infection. Safe sex should always be a shared
concern.
4. Criminalizing people for reckless transmission
will act as a deterrent and will make HIV
positive people think twice before having
unprotected sex.
The law has little effect on people's sexual
behavior, as is clear from the number of teens
who
have
illegal
underage
sex.
Criminalization of transmission does
however enable lovers to use the law as a
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way of exacting revenge. In such cases, the
original HIV positive partner would always
be at a natural disadvantage.
5. To ensure that people do not believe they are
immune from prosecution just because they have
not taken an HIV test, it should be possible to
call an HIV positive person 'reckless' even if
they have never actually had an HIV test knowledge that they have put themselves at risk
in the past should be enough to make them
aware of their HIV risk and thus legally obliged
to use a condom in the future.
Prosecuting positive people for reckless
transmission could well leave many afraid to
be tested, believing that if they do find out
their status, they could be liable to all sorts of
criminal charges. Avoiding this problem by
telling people they should be 'aware' of their
risk even if they have not tested for HIV is
entirely unfair. It is also impossible to assess
or judge how 'aware' of past risk of infection
any one person is or should have been.
6. Putting people in prison will stop them from In the short term, this may be true, but
spreading HIV and endangering the community. imprisonment does nothing to help people
come to terms with their HIV and take a safer
attitude towards sex. Education and
psychological counseling would be a more
appropriate course of action in many cases.
The sharing of needles for injecting drugs
and the high incidence of male rape and sex
between men in prisons also mean that HIV
transmission is still perfectly possible, even
behind bars.
7. Criminal cases help to uncover and warn lots Criminal cases give police license to
of HIV positive people who might not otherwise investigate the background of anyone they
learn their status.
suspect of having passed on HIV. This can
represent a serious invasion of privacy as
well as a potential breach of confidentiality
and anonymity, and it may well be entirely
unjustified.
8. Laws on the transmission of diseases do not No other illnesses are treated with the same
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necessarily apply just to HIV. Many laws hysteria as HIV, and few people are ever
relating to HIV could potentially be used to criminalized for transmitting them. It is for
prevent people spreading many other fatal example very unlikely that anyone would
illnesses.
think to prosecute an employee of a
residential care home for coming into work
with the flu and giving it to the residents,
even if several of those residents
subsequently died. HIV is only singled out in
criminal cases because of its association with
stigmatized groups and promiscuity.
9. HIV positive people can easily be divided into
legal definitions of "guilty" (people who 'bring
HIV upon themselves' and recklessly give it to
others) and "innocent" (victims who were
infected through no fault of their own, and
would never put anyone else at risk).
10. Vulnerable women who do not have control
over their sexual relations will find protection in
laws that would prosecute reckless male
partners.
These categorizations are far from clear cut,
and most HIV positive people have at some
point in their lives belonged to both. After
all, everyone who transmits HIV was once a
'victim' of someone else with the virus.
Women will face a greater risk of prosecution
as they more often know their status through
attending health clinics more frequently. An
HIV positive man may accuse his female
partner of infecting him, because she was
diagnosed first, even if he infected her and
was not diagnosed until much later.
The responsibility for protected sex is a shared responsibility, because criminalization increases
HIV stigma. Criminalization is a step back towards the culture of ‗blame‘ that surrounds the
early years of the epidemic. Right or wrong however, criminalization does mean there is now an
extra concern for any HIV positive person who decides to have a sexual relationship.
Criminalizing people who transmit HIV is both a moral and a practical minefield. The very fact
that the sentences received by the individuals listed above vary from a small fine to life in prison
reflects just how difficult it can be to legislate and deliver a ruling on an issue where individual
viewpoints, emotions, stigma and the good of public health are so inextricably mixed.
Assuredly, there is no evidence to suggest that criminalizing HIV transmission is an effective
method to prevent the further spread of the virus or achieve criminal justice. If governments wish
to make a dent in their countries‘ epidemic, far more effective prevention programs exist such as
testing, counseling and general awareness campaigns. Where criminalization laws have been
proposed as a means of protecting vulnerable women and girls from their HIV-positive partners,
a more effective approach would be to address gender-related violence, inequality and sexual
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coercion, as well as stigma and discrimination. While it is perhaps an understandable reaction on
the part of individuals to want to seek redress through the courts for becoming infected, on an
epidemic-wide scale criminalization could do more harm than good. The potential disincentive to
testing, stigmatization of HIV, misapplication of the law, prosecuting people unaware of their
status, as well as other possible pitfalls mean criminalization may be counterproductive. What
should ultimately be remembered is that HIV is an infectious disease - every single person who
is accused of transmitting the virus by whatever means, will at some point have been the victim
of a 'transmitter' themselves. Replication and infection is the primary objective of any virus. The
real criminal is perhaps not the human host therefore, but HIV itself.
STARTING A SUPPORT GROUP
Living with HIV can be very difficult. One thing that can be helpful is seeking the support of
others living with HIV through support groups, peer counseling, or other tenable places. A
support group is any group of people whose purpose is to support one another deal with an issue.
A support group may be small (an informal gathering at someone's kitchen table) or large (a
facilitated group at an AIDS organization or in a church meeting room). The participants can be
from a specific part of the HIV community (e.g., HIV positive women, caregivers of those living
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with HIV, members of a faith community), or they can be open to anyone who is interested in
discussing about HIV. Some support groups are informal and led by the members themselves,
while others are more formal and led by a trained facilitator.
Some are general and provide opportunities for people to talk about anything on their minds,
while others have a topic upon which they focus, such as HIV medications or how to deal with
substance abuse issues. Some are "open" (members can join at any time or "drop in" as needed),
while others are "closed" (requiring some sort of joining process and a commitment to attend
regularly). Some groups get together just to share information and encouragement, while others
grow into longer-term mutual support communities where members help each other with
carpools, childcare, or care giving when a member gets sick. Still others grow into educational
programs with outside speakers coming in to teach on various issues. There is no "right" or
"wrong" way to organize a group, as long as it is safe, supportive, and respectful of all
participants. People living with HIV who participate in support groups often take better care of
themselves and are less likely to feel isolated or depressed. If there are no support groups
available in your community, you may start one by yourself. The key issues for consideration
include;
Partnering
If you partner with an organization in your area that provides services to HIV positive persons, it
may be willing to tell its members about your group so that those who are interested can join.
You can ask if organizations in your area already have a support group; if they do not, you can
ask how they can help you start a group in your community.
Purpose and Participants
As you begin planning your group, consider the following:
What is the purpose of the group? Possible purposes include providing social support,
educational support, and/or mental health support.
Who can participate in the group?
Facilitator
Next, decide who will facilitate (lead) the group. If you want to participate in the group that is
easier to do if someone else is leading. Often, feelings that people have kept pent up or hidden
inside will come out in a safe, supportive environment. Therefore, it is important to find a
qualified person in the community (e.g., a mental health professional or someone experienced in
leading support groups) who can assist with facilitating the group.
Structure of Meetings
Next, you can think about the structure of the meetings – will they be free flowing or have a set
agenda? Ask the people who participate in the group to help make this decision. Having them
choose the way the meetings are carried out can enhance their sense of ownership of the group.
The more ownership HIV positive people have, the more likely you are to participate in the
group. At the beginning of each session, the participants come with their ideas for various topics
they would like to learn more about. The group then decides together which topics will be
covered and which social events will be planned. Once these decisions are made, a calendar is
created, and various participants volunteer to help arrange the events on the calendar. When new
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participants attend the group, they are provided with what is going on. This process helps the
core participants take ownership of the group and allows new participants to become familiar
with the purpose, agenda, and structure of the group.
Location and Organization
Other questions to consider include:
How often will the group meet?
Where will the group meet? You can meet in person, or use the Internet to connect via
online chartrooms (often called ‗peer support‘).
What time will the group meet?
Will the group be closed or open to new members? If closed, how often will it open to
new members?
Will the group run for a certain number of weeks or be ongoing?
Will the group adopt rules and delegate responsibilities?
Will there be a cost for participating in the activities?
Will there be meals or snacks?
Will incentives such as childcare, bus tokens, and/or grocery coupons be offered?
Getting the Group Started
It is important to ensure that your support group provides a space that is safe, confidential, and
welcoming. Try to create a non-judgmental atmosphere where participants, both old and new,
feel comfortable sharing their feelings. It can help to explain what confidentiality means to all
members so that all participants have the same understanding and expectations for
privacy.Sharing experiences allows members to give each other mutual support and to pool
practical information and ways of coping. It also allows participants to understand themselves
better through the insights of others. When a group is new, participation may be small. It is
important not to be discouraged and to continue to meet as scheduled. The people especially
residents of the community like yourself need to see that the group continues to meet. Besides,
the ‗success‘ of a group is not based on how many people attend, but by the relationships that
develop and support that is provided. If the group is open to new members, increase awareness
by posting flyers at local organizations.
Group name, meeting place, and meeting time are important facts to include. If a group is closed
to keep it more confidential, then the name and number of the facilitator can be made available to
local organizations for referrals. You may also want to talk to area case managers, attend local
meetings, and keep in contact with other organizations in your area that serve HIV positive
people. As the number of participants grows, it will be important to create some ground rules. It
is often helpful if participants create these rules themselves. Ground rules are a way of
establishing boundaries and keeping order in the group. If the rules are broken, it is important to
remind the group of the rules that the group established, so as to provide a level of continuity and
safety.
Some common ground rules include:
Expectations around confidentiality: ―what you say in the room, stays in the room;‖
anything said or noticed in the room will not be repeated or discussed at another time or
place
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Openness and respect: group members are expected to listen to each other without
interrupting, take turns speaking, and speak without judgment or giving advice; by the
same token, choosing not to speak is also respected
Language: Group members are expected to avoid language that would offend
Promptness: Meetings will begin and end on time
As the group grows, the different personalities of the participants and facilitator(s) may cause
some tension or division. As the group organizer, it will be important to deal with issues as they
arise. Try to stick to the rules and consequences the group created.There may come a time when
the group process appears difficult and you want to quit. If that happens, try to reconnect with
the reason you started the group and work out the difficulties so the group can continue. This
may mean passing the organization or ‗ownership‘ of the group to someone else.Since being part
of a support group is intended to help live healthier with HIV, it is fine to leave a group if it is no
longer serving its purpose for you. There is power in a group. Through support groups, people
have the opportunity to learn about HIV, provide support for other persons, develop leadership
skills, set boundaries, gain respect, and grow their self-esteem and confidence. Through your
group, people can learn that they are not alone – they have a family to support them as they live
with HIV.
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PASTORAL PERSPECTIVE ON HIV/AIDS
One question we are most frequently asked is "How do we talk to or counsel a person living with
AIDS?" This question is not only asked by care partners, friends, and family but also by church
professionals, clergy and lay. Even though most religious professionals take some course(s) in
theology, they often feel inadequate when it comes to providing emotional/spiritual support to
individuals and families affected by AIDS. The spiritual needs of persons living with AIDS will
never be more acute. HIV positive individuals live longer than any time in the past. Because they
live longer, theydeal with longer-term stresses. Increasing numbers of family members and
significant others opt to care for the infected individual and also need support themselves. More
and more church and community members come out of the closet to let it be known that they or
their loved one haveAIDS.Increasingly they seek out and even demand supportive,
compassionate, and non- judgemental support from our religious communities.
Key issues to consider while Giving Pastoral Care
The First Question to Ask is Not, "How You Got the Infection?"
We do not ask someone who has cancer, lupus, or suffered a heart attack how they got
sick; so why should we ask that of someone with HIV? When someone tells us their HIV
status, they are usually dealing with the present and future more than the past. There may
be lifestyle issues that need to be discussed at a future time, but our initial reaction needs
to be compassion-- not questioning.
Avoid
the
"Blame
Game."
Spending time blaming people who are HIV positive for their illness distracts from the
most important issues. The truth is that we have all done things in our life that involved
risk. For the most part, we have been spared the consequences of those acts. We are
hypocritical when we blame others if they suffer the consequences of their acts. The
"blame game" prevents us from giving beneficial pastoral care to those who need it.
Compassion
is
the
Key.
Compassion is being a channel of God's grace and coming to the side of one who is
hurting. We suspend judgmentalism and focus on the needs of others. Compassion is
shown in gentleness, kindness, acceptance, and love. Pastoral care that lacks compassion
is not helpful. Compassion is the way of Jesus.
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Confront
Your
Own
Fears.
Fear leads some pastors and churches to reject people suffering from AIDS. They may
refuse to visit or care for them. We must confront our fears with facts, put judgmentalism
and prejudice behind us, and get on with the privilege and obligation of ministry.
Focus
on
Life,
Not
Death.
A person infected with HIV will eventually die. So will a person who is not infected by
HIV. We shall all die and it is only a matter of time that counts; none of us knows when
death will arrive. Therefore, our focus needs to be on how we will live the rest of our life.
Focusing only on death gives the impression that we have given up hope and are just
waiting for the person to die. Focusing on life declares that the person has a lot of living
yet to do.
Let the Individual Set the Agenda.
Many of us like to be in control of everything, including the direction of our
conversations. This approach can sabotage our best efforts. The earlier you are in
relationship with the person you are counseling the more they need to control the issues
that are discussed. If you begin a relationship by making demands of the HIV positive
person such as his/her immediate repentance, notification of family/partner(s), and
acceptance of death, you are being, at best, unfair and unhelpful. At worst, you are being
destructive.
Confidentiality
is
a
Must.
We must keep the trust people place in us. Disclosing one's HIV status is often a difficult
decision. It means becoming vulnerable and trusting another with a secret. Pastoral
visitors are not free to tell others secrets entrusted to us. We do not tell spouses, church
committees, pastors, or friends. If we break confidentiality, we may hurt the one who
trusted us so much that he/she never reaches out for help again.
Act
Like
There
is
Hope.
HIV is not a situation completely devoid of hope. New medications are extending the
lives of persons infected with HIV. A cure may be in advance to arrival. There is the
power of prayer. Most importantly, we all have much living left to do. The gospel of
Jesus Christ is a call to hope that this life is meaningful because God is working in our
life and eternity will be spent in the presence of God.
Affirm
the
Worth
of
the
Person.
All people are created in the image of God. All people inherently have great dignity and
eternal worth. God's grace has gone out to all people and God, calling all people to a life
filled with power, love, joy, and service to others. "God so loved the world" (John 3:16)
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means that there are no second class people. We must embody the message of love or we
fail to offer the Gospel.
Feel
Free
to
Show
Emotion.
AIDS surfaces concerns about death, prolonged illness, lack of control of our lives,
financial stability, transmission of the disease, prejudice, and more. Giving of good
pastoral care requires that we confront these issues and get in touch with our own
emotions about them. We must be careful, however, to respond to the needs of the person
and not our own anxiety, fear, and pity. Our role is to be a pastor to them, not the reverse.
Be emotionally present. Feel free to appropriately cry, laugh, or express other emotions
when visiting a person who has HIV.
Remember
to
Touch.
One of the tragedies of HIV is that many people are reluctant to touch someone who is
HIV positive. Some of this hesitation is due to irrational fears about contracting HIV
through casual contact. Others hesitate because they do not accept the HIV positive
person or the lifestyle they are believed to have. Whatever the reason, refusing to touch
someone who wants to be touched sends the message that we are not emotionally present
for the person or that we do not accept the person. (We must also be sensitive to times
when a person does not want to be touched for any reason or cannot be touched because
of a physical condition.) Our willingness to touch shows our willingness to care.
Look
for
the
Stages
of
Grief.
People who are affected by HIV wrestle with the stages of grief. They deal with shock,
denial, anger, bargaining, depression, and acceptance. People go through these stages in
differing periods of time and may bounce back and forth between stages. People will
grieve over their HIV status, an AIDS diagnosis, the loss of a job, becoming
symptomatic, the loss of their future, the death of their friends, and the anticipation of
their own death. Our job is not necessarily to move people through these stages but to
help them deal with their present stage. We are called to offer support to our brothers and
sisters during these difficult times.
Be
Aware
of
the
Psychosocial
Issues
Surrounding
HIV/AIDS.
Those infected/affected with HIV deal with a variety of issues such as social isolation,
rejection by friends and family, prolonged periods of illness, fear of what tomorrow will
bring, then sometimes negative reactions of the religious community, reproductive
decisions, guilt, and grieving. As givers of pastoral care, we need to recognize these
issues and help people as they work their way through them. We also need to educate our
community about HIV/AIDS so that it may respond supportively.
Expressions of Spirituality and the Experience of Spiritual Life Varies from Person
to
Person.
No one experiences God in the same way. Some people express their faith emotionally;
others are quiet and contemplative. Some people enjoy singing; others prefer to listen.
Some belong to a particular religious group; others do not. Some are very sure about their
spiritual direction; others are searching and have a lot of questions. Such differences are
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not bad. They demonstrate the unique way God reaches out to all of us. Since religious
expressions differ, we must not require everyone to experience God the way that we do.
We cannot assume that we know another person's spirituality just because we know they
are affected by HIV. We must be present as pastoral guides who help people to find their
own way on their spiritual journey.
Avoid
Saying,
"I
Know
How
You
Feel."
Even if we had similar situations, we cannot completely understand how anyone else is
experiencing a particular situation. More helpful responses include, "I hear your pain"; "I
am sorry"; "I am here for you"; "I understand this is a difficult time for you"; "What can I
do to help?"; and "How do you feel?" Sometimes a quiet hug is appropriate and needed.
Get
Educated.
To give helpful, consistent pastoral care, educate yourself about HIV. Learn the basic
facts about modes of transmission, progression of the infection, common illnesses and
medications, and the psychosocial issues that surround HIV/AIDS. Becoming educated
about HIV communicates to people with HIV that you care about them. You can find out
about HIV in many ways: books, tapes, seminars, volunteer opportunities, HIV/AIDS
hotlines, hospitals, and more. However if you choose to become educated, do it today.
Pastoral Care with a Person Infected/Affected by HIV/AIDS is Usually a Long
Process.
We cannot heal every wound and solve every problem in one hour. Pastoral care with
someone whose life has been touched by HIV requires time, patience, and the
development of a relationship. Our role is to come along side of people and support them,
to be present with them. It is not to answer every question and give the solution to every
problem. We must be patient as people work through the stages of grief and the myriad of
issues that surround HIV.
Know
Your
Limits.
HIV brings us into contact with issues such as counseling, bio-ethics, living wills,
medical treatment, grief, guilt, stress reduction, and nutrition. None of us can adequately
deal with all of these issues. We must realize when we have reached our limits and be
willing to refer the client to another person.
Every Pastoral Care Situation Can Be Used by God to Make Us into the People God
Wants
Us
to
Be.
God meets us in the people we encounter. People living with HIV, through the issues
they raise, help us confront fear, death, frustration, impatience, prejudice, and spirituality.
Walking through these issues with them can be mutually beneficial. We must always be
open to growth and personal change.
Doctrine, Dogma, Denominationalism, and Guidelines are Not Adequate Substitutes
for
Caring,
Sharing,
and
Love.
We all operate within the structure of a religious organization. That does not mean,
however, that all we have to offer is that structure. We must add to that framework
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caring, personal sharing, and love. Unless we become personally involved, we will fail to
show God's love to others and fail to follow the example of Jesus.
Ten assurances of pastoral care-HIV/AIDS
Assurance 1: God Loves All of Us.
God is love. God's love is extended to all people. It has no end and is unconditional. God's love
has no "ifs, ands, or buts." No one and nothing can separate us from the love of God that is in
Jesus. We are all precious to God. Jesus lived, died, and was raised from the dead in order to
demonstrate God's love for us. Our love for God is demonstrated by our loyalty to Jesus and our
love for one another. Even when we feel unloved or unlovable, God's love is constant. Even
when we disappoint ourselves, God continues to love us. And some times, people turn away their
love from us, but God's love for us never waivers.
HIV often makes us feel separated from others-- our families, our friends, our partner, even God.
The Scripture assures us that nothing can separate us from God's love-- not even HIV. In the
midst of the challenges of HIV/AIDS, we can be assured that God still loves us. God accepts us
right where we are. That does not mean that God approves of all we do or that God is willing to
leave us just the way we are. It does mean that God's acceptance is unconditional. We are loved!
Assurance 2: God Will Draw Near to Us.
An affliction far more common than AIDS is "'FRAIDS," an irrational fear of HIV/AIDS and
those infected/affected by HIV. This fear produces anger, discrimination, spreading of myths,
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and avoidance of those infected/affected by HIV/AIDS. God does not have 'FRAIDS! God
desires intimate contact with us. God wants to hear our concerns, fears, hopes, dreams, and
questions. God wants to cry with us and laugh with us. God wants to hear our prayers and to talk
with us. When HIV touches our life, we often experience the end of some relationships. Because
we do not want to be hurt again, we can become reluctant to reach out to others. God wants us to
take the chance and reach out. God will never hurt us. God will never turn away from us. God
will not cut off our spiritual relationship with Jesus Christ. We can be sure that if we reach out to
God, we will find that God is already reaching out to us. If we draw near to God, God will draw
near to us.
Assurance 3: God Offers Forgiveness.
Guilt! We have all felt it. We have carried it around with us. We have been its victim. The good
news is that God has provided a way for us to unload our burden of guilt. That way is God's
forgiveness of our sins through Jesus.God's grace and forgiveness is greater than our sin.
Forgiveness is God's work. Receiving God's forgiveness allows us to forgive ourselves for the
mistakes we have made. It also allows us to forgive those who have hurt us. Letting go of guilt is
a healthy choice. It frees up emotional energy for us to deal with the other issues of life. It
liberates spiritual energy so that we can continue our spiritual journey. It releases physical
energy so that we can keep our bodies healthier. Forgiveness also helps each of us to be honest
with ourselves. We must admit that we are not perfect and that some things in our life must
change. This admission helps us to stop wasting time. Then we can spend our time more
constructively, doing the things that make us stronger. Forgiveness is a gift that truly is good for
us.
Assurance 4: God is with Us.
When we are HIV positive, we can feel very isolated and lonely. We need to know that someone
will be there for us, even in hard times of life. God will never desert us or leave us alone. Many
things can make us feel isolated and alone. HIV/AIDS scares some people away from us.
Sometimes HIV scares us away from other people.Managing our health, visiting doctors, and
dealing with changing working conditions steals much of our time, thus often preventing us from
spending time with others. God is with us, in good times or bad; in health or sickness; in strength
or weakness. We may have to endure many things in this life, but we do not have to be lonely.
God has promised to remain with us forever and ever-- in this life and in the next. We are not
alone.
Assurance 5: God Brings Good into Our Life.
God does not make bad things happen to us. God does not make us sick. God brings good into
our life. Bad things happen for a variety of reasons. We suffer because of the mistakes of others.
We suffer because our decisions have brought negative consequences. We suffer because of the
evil structures of society. Sometimes there is no satisfactory reason for our suffering. God
promises to help us bring good results out of difficult situations. HIV has affected our lives. The
question we must answer is, "How are we going to react to this reality of life?" We can choose to
live in denial or face our mortality and be freed from the fear of death. We can choose to
withdraw into ourselves or reach out to find the support we need and offer support to others. We
can choose to run from God or to reach out and have a relationship with God who offers us
goodness, love, and care.
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Assurance 6: God Gives Us a Purpose.
One of the most terrible things is to live without purpose: to have no plans, no direction, no
goals, no reason for living. To merely "exist" is a tragic way to spend our time when we could be
living. When HIV touches our life, we may feel hopeless and want to stop living. We start to lose
sight of our dreams and plans. We begin to believe that we have no purpose. That is not true!
God affirms that we always have a purpose. As long as we are seeking to become better people,
reach out to others, work on our spiritual growth, care and pray-- we have a purpose. How do we
find our purpose? We can start by doing a self-inventory. We can ask: "What are my talents,
resources, goals, hopes, and dreams? What is most important to me? How has God gifted me?"
Next, we ask: "What are the needs of my family, friends, and society? What would God have me
do about these needs?" Then, we ask: "Where does my self-inventory match up with the needs I
see?" The intersection of or self-inventory and the needs of others may be a good place to begin
fulfilling our purpose. God offers us life. God will give us a purpose. Let us be done with
existing and get on with living!
Assurance 7: God Gives Us Strength.
All of us feel tired and overburdened sometimes. Demands related to friends, family, work,
health can tire us out. Add the challenges of HIV to this mix and it is easy for us to reach the
point of exhaustion. We may begin to believe that we cannot overcome the next difficulty we
face. We find strength as we become connected to God through Jesus Christ.In this spiritual
relationship, we find what we cannot find in ourselves. Our strength is not found in wrestling
with life but in resting in God's hands. How reassuring to know that spiritual strength is promised
to those who wait upon God. How empowering to realize that we can face all challenges backed
by the power of God.
Strength is not measured in weight, muscle size, or athletic ability. Strength is measured by our
oneness with God. As our spiritual relationship becomes stronger, we become stronger people.
God's strength will never fail us.
Assurance 8: Peace, Hope, and Joy are God's Gifts.
Beyond the materialism and selfishness of society (and ourselves), we need peace, hope, and joy.
We feel these needs more intensely when our lives are touched by HIV. That we live in a
disturbed world is not news to anyone. That we can find peace in the midst of it IS news. God
offers us peace. We can have peace because we know we are God's. We know that justice will
prevail. God never leaves us. Hope and HIV are not opposites. HIV affects the body but hope is
found in the soul. We hope for a cure. We hope that we can fulfill our dreams. We hope that after
taking the step of death, our story will not end. In fact, our hope says that our existence is eternal
and that one day we will be in a place with no death, illness, or tears of pain. Scripture calls us to
rejoice at all times. While we do not rejoice about the negative things in our life, we do rejoice
that God goes through these things with us. We rejoice that the love in our hearts will last
forever. We find joy in the faces of children, in the little things of life, and in the kindness of
loved ones. Without peace, hope, and love, life is unbearable. With them, we can live and thrive.
Assurance 9: God Takes the Side of the Poor, the Sick, and the Oppressed.
God's love is extended to all people. God has a special concern for the persons who are poor,
sick, and oppressed. Repeatedly Scripture defines true religion as caring for the poor, the
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stranger, and the afflicted. Scripture condemns the actions of those who are unjust, abuse their
positions of power, and close their eyes to the needs of others. HIV/AIDS increases poverty.
Those who are poor become poorer. Many who have been financially comfortable become poor.
Due to peoples' fears and unjust social structures, being infected/affected by HIV often results in
oppression. God does not desire us to be in poverty, to be sick, or to be oppressed, but sometimes
we are. God is not indifferent to our situation. God is our advocate, our comforter, and our
refuge. God's will is justice for all. As The Reverend Dr. Martin Luther King, Jr. said, "even
though the arc of the moral universe is long, it bends towards justice." The struggle may be long,
but we do not struggle alone. God struggles alongside of us and on our behalf. We can take
comfort in the knowledge that our situation is not forgotten by God. Jesus came to preach good
news to the poor and set free the downtrodden.
Assurance 10: God Never Gives Up on Us.
People sometimes break their promises, destroying our faith in them. We may become so
disappointed in the actions of others that we begin to give up on people. When the people who
hurt us are members of the religious community, we are tempted to give up on religious
institutions and people. We can even be tempted to give up on God.Some clergy and
congregations fail to meet the needs of people. However, millions of people, including those
whose lives have been touched by HIV/AIDS, have found parts of the Christian community to be
very supportive. We all need spiritual moorings, to feel connected to something greater than
ourselves. We all need to feel like we have a place in eternity. We want to experience love,
peace, forgiveness, and hope. We lose all of these benefits if we react to the uncaring acts of
others by shutting down our spiritual life. People sometimes fail us, but God will never.
God is always greater than the people who claim God's name. Even if we have given up on
people, we do not need to give up on God. God never gives up on us. Though we have
experienced hatred and bigotry, we have also received a great deal of support and friendship
from many people. Remember as children learning about Jesus ministering to the sick and lame...
even to the lepers who were outcasts of society. People with AIDS are humans too. Like
everyone else they have a need to be needed... to fit in. You may ask, "What can I do to help?"
But the most important thing you can do is to be a friend. That may mean just going through life
as usual, providing a shoulder to cry on, maybe a comforting hug, or maybe just simply being
there. Treating those with HIV/AIDS with kindness and dignity is by far the greatest gift that can
be given. The "Golden Rule" applies, "Do unto others as you would have them do unto you."
HIV/AIDS: and GOD's judgment
Is HIV, the human immunodeficiency virus, or AIDS, acquired immune deficiency syndrome, a
punishment or judgment from God? The short answer is "No! Absolutely not!" Yet some people
answer the question, "yes." Indeed, some members commonly known as the radical religious
right praise God for the tragic epidemic which claims lives of hundreds and thousands of human
beings in every part of the world. Because HIV/AIDS was associated in the first years of the
epidemic with the gay male community in the western world, many from the radical religious
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right use this pandemic as a weapon to further their own homophobic agendas. The idea that
HIV/AIDS is a punishment from God is based on three faulty assumptions: that sexual
immorality acts are sinful, that God causes suffering, and that God punishes sin with disease.
These false assumptions result from a particular way of looking at society, sexuality, and how
God works in the world.
Does God Cause Suffering?
Why do people suffer? All religions have had to address this question. The world is full of
human suffering caused by hunger, disease, poverty, and multiple forms of oppression and
injustice. If these things are happening, does this mean they are God's will and, therefore, God
wills us to suffer?
Evil is a very real force in this world, a force not of God's making. And HIV/AIDS is certainly a
devastating evil not of God's will. It is not "just desserts" for gay men, commercial sex workers,
babies born with HIV, IV drug users, or any other person living with HIV/AIDS. Jesus never
punished people with sickness. Jesus healed. HIV/AIDS is a tragedy, and God suffers with us
who are victimized by it or who lose our loved ones because of it. Bad things happen. You suffer
many times through no fault of your own, but because the world can be an unfair, unjust place.
God does not create chaos or injustice. God brings order out of chaos, and demands justice where
there is injustice. God does not cause tragedy, but God does respond to suffering with healing.
God heals sometimes through physical restoration, and other times with grace sufficient to grow
in the midst of suffering, even in the face of death. An example of God's healing grace is welldescribed by a woman with a friend who died from the complications of AIDS: "As a child, he
had been abused and abandoned by his mother. But as an adult, in his last months, his mother
came to live with him, nursing him around the clock. In their times together, old wounds were
healed, forgiveness was shared, and faith grew. My friend received a healing gift of family and
love he had never known." Even when the injustice of tragedy invades our lives, God's
passionate love can bring good in the form of healing and growth. You can find God's healing
touch in your tears of sadness and your screams of anger. You can find God's healing touch in
the words of love and comfort shared by others. More than anything, you can find God's healing
touch through that inner peace that comes from God's presence and promises. In everything God
works for good with those who love him.
Is Sin Punished With Disease?
"Is God punishing persons who practice sexual immorality with HIV/AIDS?" These are the kind
of questions that were asked for centuries before HIV/AIDS became an issue. Each time some
mysterious malady or disaster befalls on an identified community, there are claims that God has
caused the disaster as a judgment against the affected person. If indeed HIV/AIDS is a plague
sent by God into the immoral community, there are some flaws in the plan. There is the matter of
all other people who are not immoralists who are infected and affected. For example, what is the
explanation for the decimation caused by HIV/AIDS in children, where transmission is primarily
vertical? Clearly there is no justification for suggesting that God has unfavorably judged the
immoral community, nor that God has created HIV/AIDS as a punishment.
Are all women with breast cancer victims of God's wrath? Are people of African descent being
punished with sickle cell anemia? Have Palestinians done anything wrong to deserve Israel air
strikes? It is known that HIV/AIDS disproportionately affected communities of colors in the
United States. Does this mean that God had made a judgment against people of colors? A normal
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person would answer these questions with a resounding ―No!‖People had similar questions
during the time of Jesus Christ. Then, as now, many assume that suffering is a direct result of sin.
But Christ challenged that assumption.As Jesus walked along, he saw a man who had been blind
from birth. His disciples asked him, ―Rabbi, was it his sin or that of his parents that caused him
to be blind? ―Neither,‖ answered Jesus, ―it was no sin, either of this man or of his parents. Rather
it was to let God‘s work show forth in him.‖(John 9:1-3) Jesus then reached out to heal the blind
man. You, too, must reject the idea that HIV/AIDS, or any other illness, is punishment for sin.
People of faith, like that of Jesus Christ, must reach out with a healing touch. Rather than being
understood as God‘s retribution, suffering becomes an occasion for God‘s love to be
demonstrated. When you reach out and touch those with HIV/ AIDS, you can transform
suffering into a living example of God‘s love.
The Responsibility of a faithful Person
While today's culture focuses on sin and evil as an individual matter, scriptures speak frequently
of sin as something in which human beings are involved as a group. Similarly, evil happens in
groups, in structures, and in forces beyond the individual. A faithful response to HIV/AIDS,
then, needs to be a group response, as well as an individual one.
Generally people have fears about HIV infection and disease. The personal fears are rooted in the
fact that the disease is new, has no cure and is fatal. Death is a focal fear in HIV infection and
disease. Other fears expressed are centered on stigma and rejection, dying and living ones
children, going through a long painful period of multiple illnesses, being disfigured, being
physically incapacitated and being impoverished,
It is a fact that some people with AIDS die prematurely. It implies that one‘s ambitions in life are
shattered causing frustrations and disappointment. Fears associated with AIDS are devastating
emotionally to individuals infected and affected by HIV infection and disease such that they
react differently on being associated with it. Most people experience shock on diagnosis.
It is difficult for individuals to accept the diagnosis or the results and therefore there are
tendencies to deny them. Feelings of regret, disappointment, frustration, blame, anger are usually
manifested as a person adjusts to realities of being infected with HIV.
As a result of these fears associated with AIDS, there are tendencies to seek for miraculous cures
through witchcraft, turning to God/getting saved and having repeat tests. As individuals continue
living with the infection, they develop feelings of desperation, helplessness, hopelessness,
confusion, anxiety and depression as elaborated.
These people need support in order to cope with the situation. In order to be of help especially to
persons who are going through an emotional turmoil like in the case of HIV infection, a faithful
person who can provide emotional support needs to have a positive attitude towards AIDS. S/he
should be in position to show concern, willingness and interest in helping people with problems.
A faithful person therefore needs to possess the following qualities:
A good listener
Patient
Trustworthy
Caring
Kind and loving
Approachable
Empathy
234
Non-judgemental or neutral
It is important for the person to seek fellowshipping in order to discuss any worries and problems
that may arise. Fellowshipping involves the person sharing out his/her problems with any other
person he confides in. Usually, a problem shared is a problem halved. Ventilating certain
feelings like anger, fears, calms down the person and has a healing effect on him.
Faithful individuals should take precautions not to use judgemental language. Prayers and praises
should not relate to sorrow but should instill hope unless otherwise requested by the client. In
addition the faithful person should not force his religious values on the client.
Allowing a client with enough freedom is a vital step for prevention and elimination of this tragic
disease. Jesus said, "The Truth shall set you free," and yet people often deny the truth, or avoid
learning about HIV/AIDS because of fear.
As a person of faith, it is your responsibility to educate them and all who can be reached. Many
people have fears about the risks of contracting HIV/AIDS; that fear can be overcome with facts.
With facts about how HIV is transmitted, people of faith can remain sex-positive while
remaining HIV-negative.Following the example of Jesus, a person of faith is called to eat with
people having AIDS, and to share his/her home with them; to touch people having AIDS and
give them intimacy; and to heal people with AIDS. A faithful, intimate presence in the lives of
those having HIV/AIDS, witnessing to them of Jesus' healing touch, is one of the most important
responsibilities of all people of faith.
235

HIV PREVENTION AND AIDS MANAGEMENT

Transcription

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