Dissertation - Emory University

Transcription

In presenting this dissertation as a partial fulfillment of the requirements for an advanced
degree from Emory University, I agree that the Library of the University shall make it
available for inspection and circulation in accordance with its regulations governing
materials of this type. I agree that permission to copy from, or to publish, this
dissertation may be granted by the professor under whose direction it was written when
such copying or publication is solely for scholarly purposes and does not involve
potential financial gain. In the absence of the professor, the dean of the Graduate School
may grant permission. It is understood that any copying from, or publication of, this
dissertation which involves potential financial gain will not be allowed without written
permission.
________________________
Kendra S. Hatfield-Timajchy
Delayed Diagnosis: The Experience of Women with Systemic Lupus Erythematosus
in Atlanta, Georgia
By
Doctor of Philosophy
Graduate School of Arts and Sciences
Department of Anthropology
_____________________
Peter J. Brown, Ph.D.
Adviser
_____________________
Peggy F. Barlett, Ph.D.
Committee Member
_____________________
George Armelagos, Ph.D.
Committee Member
_____________________
Lisa A. Tedesco, Ph.D.
Dean of the Graduate School
__________________________
Date
in Atlanta, Georgia
By
B.A., Smith College, 1987
M.P.H., University of North Carolina, 1991
M.A., Emory University, 2001
Adviser: Peter J. Brown, Ph.D.
An Abstract of
A dissertation submitted to the Faculty of the Graduate
School of Emory University in partial fulfillment of
the requirements for the degree of
2007
This medical anthropological dissertation research is a cross-sectional study of the
illness experience of African-American and white women with systemic lupus
erythematosus (lupus) and lupus-like symptoms. It was conducted in Atlanta, Georgia
from 2000-2004. Its aim was to describe the impact of diagnosis delays, treatment
options and support group participation on women and to furnish a "snapshot" of lupus
experience across of wide range of diagnosis stages (ranging from pre-diagnosis to postdiagnosis). A critical medical anthropological approach is used to examine the limits and
boundaries of biomedicine through the lived experience of women with an invisible
chronic illness. Criticism is raised of the acute disease model used in biomedical
diagnosis and treatment. The objectives of this research were to: 1) understand the factors
that contribute to delayed diagnosis and their effects on women; 2) understand the
significance of diagnosis; and 3) to explore the relationship between invisibility,
chronicity and illness experience by examining descriptions of bodily suffering, treatment
modalities and their side effects, and support group participation and coping strategies.
The research areas included: illness experience as it relates to invisibility and chronicity;
the acute model of disease causation and cure and its implications for biomedical
diagnosis and treatment of chronic illness; biomedical objectivity, laboratory testing and
diagnosis delays; mind-body dualism, psychosomatic diagnoses and diagnostic delays;
differential expressions of pain, chronicity and pain tolerance; and the support group
process, functioning and support types. Qualitative and quantitative methods were used to
collect data. Methods included: open-ended interview; structured questionnaire including
psychosocial instruments (to assess coping style, social network and support, pain, life
interference due to illness, and trust in physician); participant observation of support group
meetings; and document review (e.g. medical records, educational materials, etc.). Fortytwo women participated in the study (20 African-American; 22 white). Participant
observation was conducted on monthly support group meetings from 2000-2002. Two case
studies drawn from the overall sample were conducted from 2001-2002 and 2003-2004.
in Atlanta, Georgia
By
B.A., Smith College, 1987
M.P.H., University of North Carolina, 1991
M.A., Emory University, 2001
Adviser: Peter J. Brown, Ph.D.
A dissertation submitted to the Faculty of the Graduate
School of Emory University in partial fulfillment of
the requirements for the degree of
2007
To
Mary Yoder
Anita Barham
Joyce Billingsley
Anne Stevens
“Do not be content with showing friendship in words alone,
let your heart burn with loving kindness for all
who may cross your path.”
–‘Abdu’l-Bahá
Acknowledgements
Words can simply not express the depth of my gratitude and appreciation for the support
and encouragement I received over the years while working on this dissertation. For those
whose names are listed below and for those whose names I may have forgotten, please
accept my sincerest thanks for enabling me to complete what has been the longest
journey of my life thus far. The existential sense of completion I feel for having finally
achieved this goal is too overwhelming to describe. My hope is that the pages contained
herein will be tribute enough to the faith you placed in me. I could not have done it
without you.
The women who gave so generously of their time, attention & friendship
My parents, Katharina and Garry Kent Hatfield, for their love and sacrificial devotion
My husband, Manochehr Timajchy, for his love, steady support and unfailing optimism
My brother, Kevin Stewart Hatfield, for his love, humor and intelligence
Colleagues at the Centers for Disease Control and Prevention (CDC): Karen Andes,
Sandra Bean, Clark Denny, Lorrie Gavin, Robert Hahn, Denise Jamieson, Juliette
Kendrick, Joan Kraft, John Lehnherr, Maurizio Macaluso, Eric Mandel, Katina PappasDeLuca, Sam Posner, Diane Rowley, Steve Schindler, and Lynn Wilcox
Emory University faculty and students: Peter Brown, Peggy Barlett, George Armelagos,
Andrea Abrams, Riché Daniel-Barnes, Leandris Liburd, Eric Lindland, Holly Maluk,
Keith McNeal, Donna Murdock, Mark Padilla, Melissa Melby, and Maurita Poole
Research assistants: Terika Barham, Gretchen Clarke Brown, and Phillip Sarnowski
National Science Foundation, Doctoral Dissertation Improvement Grant
Sawyer-Mellon Fellowship, Center for the Study of Health, Culture and Society, Emory
University
United States Public Health Service, Long Term Training Grant
Table of Contents
List of Tables
List of Graphs
List of Figures
Acknowledgements
Introduction, 1
Why Systemic Lupus Erythematosus (SLE), 3
Historical Underpinnings:
The Discovery, Description and Diagnosis of SLE, 4
The Treatment of SLE, 15
Current Understanding: Brief Description of the Characteristics of SLE, 18
Background: Anthropology and Chronic Illness, 21
Research Objectives, 23
Chapter Overview, 24
Chapter 1:
Methods and Fieldwork Challenges, 29
Research Design, 29
Metropolitan Atlanta and Geography, 29
Study Population and Sampling Strategy, 31
Enrollment Procedures, 32
Research Methods, 33
Data Analysis, 52
Fieldwork Challenges, 56
Chapter 2:
Description of Study Population, 68
Introduction, 68
Demographic Characteristics, 69
Illness Characteristics, 72
Other Characteristics, 88
Chapter 3:
Diagnosing Illness, Legitimizing Suffering:
Biomedicine and the Naming of Disease, 110
Introduction, 110
Background and Literature Review, 117
Diagnosis Delays: Limitations and Liminality of Biomedical Diagnosis, 122
The Diagnostic Event: Passive and Active Disclosure of Diagnosis, 148
Reaction to Diagnosis, 155
Conclusion, 170
Chapter 4:
Beyond the Subjective Experience of Pain:
Narrative and Visual Descriptions of Bodily Suffering, 173
Introduction, 173
Descriptions of Bodily Suffering, 173
Narrative Description: The Language of Pain, 173
Visual Description: The Image of Pain, 182
Living with Pain, 201
Conclusion: Understanding Pain, 206
Chapter 5:
Seeking Support Finding Friendship:
Support Group Participation and the Illness
Experience of Women with Lupus, 223
Introduction, 223
Literature Review of Social Support and Support Groups, 224
Characteristics of Study Support Groups, 232
Sharing Experience and Creating a Safe Environment, 234
The Women’s Reasons for Attending Support Group Meetings, 239
The Functioning of Support Groups, Epistemological Positions, and
Friendship, 265
Conclusion, 291
Chapter 6:
Ill-Fated Alchemy: Biomedical Power, Treatment
Practices and their Implications for Women with Lupus, 292
Introduction, 292
Marian’s Story, 296
What Went Wrong? 315
Marian’s Frame of Mind, 315
Social Circumstances, 318
Institutional Factors, 320
Diagnosis and Treatment, 323
The Grateful Patient, 325
Finally, A Doctor who Really Listens, 327
The Power of Persuasion: Discourses about Death in the Biomedical
Encounter, 328
Fighting Lupus: Aggressive Treatment, Military Metaphors and the
Flexible Immune System. 331
Conclusion, 340
Conclusion, 350
References, 361
List of Tables
Table 1.1
Table 1.2
Table 2.1
Table 2.2
Table 2.3
Table 2.4
Table 2.5
Table 2.6
Table 2.7
Table 2.8
Table 2.9
Table 2.10
Table 2.11
Table 2.12
Table 2.13
Table 2.14
Table 2.15
Table 2.16
Table 3.1
Table 3.2
Table 3.3
Table 3.4
Table 3.5
Table 3.6
Table 4.1
Table 4.2
Table 4.3
Table 4.4
Study Participation by County, Atlanta Metropolitan Area, 2000-2004, 31
Number of Support Group Meetings Attended, 2001-2002, 36
Demographic and Other Characteristics of Participants by Ethnicity, 70
Diagnosis History of Participants by Ethnicity, 73
Other Diagnoses and Medical Conditions of Participants, 75
Medications Currently Taken by Participants, 78
Selected Medications Currently Taken by Ethnicity, 79
Current Lupus Status: Illness Severity (Self-Assessed) and Disease Damage
(Self-Reported SLICC/ACR1 Damage Index) by Ethnicity, 84
Self-Assessed Depression, Self-Reported Clinical Diagnosis of Depression
and Current Medications for Depression by Ethnicity, 88
Mean Score1 of the McGill Pain Questionnaire by Key Characteristics, 90
Current Pain Status: Total Responses to the McGill Pain Questionnaire by
Ethnicity, 92
Mean Total Score1 for Impact on Daily Life (Scale 1) of the Modified West
Haven Yale Multidimensional Pain Inventory by Key Characteristics, 95
Mean Total Score1 for Significant Other Response to Illness (Scale 2) of the
Modified West Haven Yale Multidimensional Pain Inventory by Key
Characteristics, 96
Mean Subscale Scores for Scales 1 and 2 of the Modified West Haven Yale
Multidimensional Pain Inventory by Key Characteristics, 98
Mean Total Subscale Scores for the Norbeck Social Support Questionnaire
(NSSQ) and Standard Deviations by Key Characteristics, 101-103
Mean Total Scores of the John Henryism Active Coping Scale by Key
Characteristics, 104
Mean Total Score of the Trust in Physician Scale by Key Characteristics,
107
Percent Likert Values Chosen for the Trust in Physician Scale by Ethnicity,
108
American College of Rheumatology (1982) Revised Criteria for the
Classification of Systemic Lupus Erythematosus, 114
Clinical Features of Systemic Lupus Erythematosus, 115
Time to Diagnosis based on Symptom Onset, Preliminary Diagnosis and
Definitive Diagnosis by the Number of Women, 124
Reaction to Diagnosis by Number of Women, 156
Reaction to Diagnosis by Category and Number of Women, 157
Reaction to Diagnosis by Emotional Response, 159
Extrapolated Pain Locations based on the McGill Pain Questionnaire Figure
by Ethnicity, 184
Total Number of Pain Locations by Pain Intensity, Compared Intensity of
Pain, and Pain Frequency, 185
Total Number of Pain Locations by Current Pain Intensity and Pain
Frequency, 186
Total Number of Locations of Pain for Groups by Compared Intensity of
Pain, Pain Intensity, and Pain Frequency, 188
Table 4.5
Table 4.6
Table 5.1
Table 5.2
Table 6.1
Description of McGill Pain Figure Examples by Compared Intensity of Pain,
Pain Intensity, and Pain Frequency and Pain Locations, 189-191
Current and Estimated Usual Pain Levels by Pain Intensity and Pain
Frequency, 192
Reasons for Attending Support Groups, 240
Types of Support at Meetings and Outside Meetings, 242
Chronology of Marian’s Medical History, 342-343
List of Graphs
Graph 2.1
Graph 2.2
Graph 4.1
Graph 4.2
Graph 4.3
Graph 4.4
Graph 4.5
Graph 4.6
Graph 4.7
Graph 4.8
Graph 6.1
Graph 6.2
Graph 6.3
Graph 6.4
Graph 6.5
Graph 6.6
Distribution of Likert Values Chosen by Each Woman for the John
Henryism Active Coping Scale, 105
Distribution of Likert Values Chosen by Each Woman for the Trust in
Physician Scale, 108
Pain Intensity by Total Number of Pain Locations based on McGill Pain
Questionnaire Figure, 194
Compared Pain Intensity by Total Number of Pain Locations based on
McGill Pain Questionnaire Figure, 195
Pain Intensity by Current Number of Symptoms based on McGill Pain
Compared Pain Intensity by Current Number of Symptoms based on McGill
Pain Questionnaire Figure, 196
Pain Intensity by Number of Years Since Diagnosis based on McGill Pain
Compared Pain Intensity by Number of Years Since Diagnosis based on
McGill Pain Questionnaire Figure, 197
Pain Intensity by Estimated Disease Damage (Self-Reported SLICC/ACR2
Damage Index), 198
Compared Pain Intensity by Estimated Disease Damage (Self-Reported
SLICC/ACR2 Damage Index), 198
Marian’s Platelet Count Levels from February 1999 - April 2002, 344
Marian’s Sedimentation Rate Levels from October 1998 - March 2002, 345
Marian’s White Blood Cell (WBC) Count from February 1999 - April 2002,
346
Marian’s Red Blood Cell (RBC) Count from October 2000 - April 2002,
347
Marian’s Hemaglobin Levels (gm/dl) from February 1999 - April 2002, 348
Marian’s Hematocrit Levels from February 1999 - April 2002, 349
List of Figures
Figure 4.1
Figure 4.2
Figure 4.3
Figure 4.4
Figure 4.5
Figure 4.6
Figure 4.7
Figure 4.8
Figure 4.9
Figure 4.10
Figure 4.11
Figure 4.12
Figure 4.13
Figure 4.14
Figure 4.15
McGill Pain Questionnaire Pain Locations, Group 1, Lenore, 208
McGill Pain Questionnaire Pain Locations, Group 1, Sally, 200
McGill Pain Questionnaire Pain Locations, Group 1, Marian, 210
McGill Pain Questionnaire Pain Locations, Group 2a, Doris, 211
McGill Pain Questionnaire Pain Locations, Group 2a, Danielle, 212
McGill Pain Questionnaire Pain Locations, Group 2a, Kate, 213
McGill Pain Questionnaire Pain Locations, Group 2b, Julie, 214
McGill Pain Questionnaire Pain Locations, Group 2b, Kenny, 215
McGill Pain Questionnaire Pain Locations, Group 2b, Melanie, 216
McGill Pain Questionnaire Pain Locations, Group 3a, Laura, 217
McGill Pain Questionnaire Pain Locations, Group 3a, Cookie, 218
McGill Pain Questionnaire Pain Locations, Group 3a, Didi, 219
McGill Pain Questionnaire Pain Locations, Group 3b, Kitty, 220
McGill Pain Questionnaire Pain Locations, Group 3b, Connie, 221
McGill Pain Questionnaire Pain Locations, Group 3b, June, 222
Introduction
“I honestly did not pick her out to do because she was a cripple. It was the dignity of Christina Olson. The
dignity of this lady.”
—Andrew Wyeth (1917-) as quoted in Meryman 1996, page 4
I was eighteen when I saw the painting Christina’s World (1948) by Andrew
Wyeth for the first time. I could not understand what I was feeling. I was drawn into the
portrait of a woman, whose face I could not see. Her body outstretched and contorted but
gently caressed by a pink dress, wrinkled and well-worn. Her hands grasping the ground
and surrounded by a field of tall grass. Her hair gently pulled back with unruly wisps
moving about her erect head, her gaze towards a house, standing upright and in the
distant horizon. Years later I read about the painting and Wyeth’s relationship with the
house and its inhabitants (Lucero-Criswell 2007). It was home to Christina and Alvaro
Olson, siblings who cared for each other until their deaths one month apart in 1967 and
1968. Early in her life Christina began to experience symptoms of a degenerative disorder
which progressively deformed her muscles. In her twenties, she unsuccessfully sought
out diagnosis and treatment for her deteriorating condition. The prognosis she received
was poor. In spite of this, she refused to use a wheelchair, choosing instead to put herself
from place to place as her legs became increasingly unsteady. The life of Wyeth
intersected regularly with the Olson’s. He spent many summers in their Maine home,
painting and sketching in an upstairs bedroom. Wyeth’s unapologetic depiction of
Christina’s struggle represents what is compelling about art and the human experience.
Sometimes it is what we do not know about a painting or each other that offers the best
prospect for enrichment. Sometimes it is the mystery that we can not penetrate at present
but come to understand in time that brings the sweetest victory. Whether it is through
2
reading or personal revelation, when the disclosure occurs and the mystery is solved, we
transcend what we knew and enter new territory, that of understanding. From this vantage
point, I saw Christina’s World in a way that I had not ever before. I saw the painting
again, but really, for the first time.
This dissertation is about women like Christina. Their lives are touched by illness.
My hope is that I can paint them like Wyeth painted Christina. They are vulnerable. They
are strong. They are accommodating. They are demanding. They are obedient. They are
resistant. They are many contradictory things. But they are not apologetic for who they
are. They deserve to be depicted and understood as simultaneously struggling with illness
but fully vested in living their lives. They do not see themselves as diseased, defective or
disabled. Lupus is a part of them but it does not define them. They are simultaneously
remarkable and unremarkable. They may be hailed as courageous by some and longsuffering by others. But what makes them noteworthy is that in spite of their struggles,
they live their lives as everyone does – taking the good with the bad and making the most
of it. They are remarkable because they live ordinary lives and by doing so demonstrate
what is extraordinary about being human – the dignity of simply living life.
3
Why Systemic Lupus Erythematosus?
Systemic lupus erythematosus1 is an invisible chronic illness which affects
primarily women and disproportionately women of color (African-American, Latina,
and/or Native American). It is extremely common, yet little is known about it. Lupus is a
difficult disease to diagnose since most symptoms are invisible and no definitive
laboratory tests exist. Lupus treatments improve short-term quality of life but may
decrease long-term quality of life due to treatment side effects. Many symptomatic
women go for years without being diagnosed. During the intervening years, many are
told that their symptoms are psychosomatic, related to depression or manifestations of
hypochondria. Diagnosis offers temporary legitimation of suffering followed by the
continued struggle to differentiate lupus flares from signs and symptoms of other disease.
Diagnosis with a chronic illness prompts feelings of social isolation which may
complicate coping and exacerbate depression. Some women turn to support groups to get
the information and resources needed to cope with the disease.
Lupus offers a unique window for peering into the chronic illness experience and
for examining biomedicine. As a multi-system/multi-organ disease, it defies the
organizational boundaries biomedical sub-specialization. As a chronic illness, it deifies
the acute/curative disease model of biomedicine. As a subjective experience, it defies the
objectification of biomedical diagnosis. As an invisible illness, it defies social
conventions about disability as observable. As a lived bodily experience, it defies
women’s physical stamina, psychological fortitude, moral/spiritual convictions, social
embeddedness, and creative powers of resistance. As a women’s disease lupus shows
1
The terms SLE and lupus are both used in this dissertation. SLE is used primarily when it is important that
a distinction be made between discoid (skin involvement only) and systemic (organ involvement) lupus.
The more general term lupus is used in all other instances.
4
how social roles are affected by our understanding of diagnosis and treatment. From a
medical anthropological perspective, lupus is interesting precisely because of these
challenges. It is argued that the confrontations and dilemmas that women face before and
after diagnosis are in response to biomedicine’s power and are a direct result of its
assumptions and values. This chapter presents an overview of the history and current
understanding of SLE, a brief review of anthropology literature on chronic illness, the
research objectives, and a summary of chapter content.
Historical Underpinnings: The Discovery, Description and Diagnosis of SLE
The history of lupus reflects the complicated nature of the disease itself. From its
identification in the Middle ages to its current classification in the International
Classification of Diseases, the description of lupus has continued to evolve. What is
interesting about the history of lupus is that it manifests the mystery of the disease writ
large. Recognized initially because of its visible discoid lesions, lupus is now considered
an “invisible” chronic illness. Originally thought to be a rare disease, it is now considered
more common than leukemia, multiple sclerosis, cystic fibrosis and muscular dystrophy
combined (Wallace 1995). Primarily treated with topical salves and ointments, now SLE
patients are exposed to potent cytotoxic and dangerous teratogenic pharmaceuticals.
What accounts for this dramatic re-characterization? Several reviews of the history of
lupus have been published (Talbot 1974; Boltzer 1983; Lahita 1987; Smith and Cyr 1988;
Hochberg 1993; Benedek 1997; Lahita 1999; Wallace and Lyon 1999). The following
sections rely heavily on these reviews in an attempt to synthesize what previously has
been published. What is most striking about the history of lupus is that it remains a
5
mystery. In spite of numerous biomedical advances since the 19th century, biomedical
practitioners still do not know exactly what causes it or how to cure it.
The Classical Period
The Latin word for wolf, lupus, was a common term used by the Romans
probably because wolves figured prominently in their day-to-day lives as a familiar beast
of prey (Smith and Cyr 1988). Speculation surrounds the timing and reasons for the
Roman’s first use of the term to describe medical conditions. Some surmise it was used to
describe skin lesions which appeared gnawed, eaten away or ravaged (Lahita 1987;
Boltzer 1983; Smith and Cyr 1988) or to characterize conditions which possessed “the
ability to devour flesh” (Smith and Cyr 1988:1). Either way, the earliest manifestations of
lupus were linked to its distinctive appearance on human skin.
The earliest description of lupus was probably made by Hippocrates in 400 BC.
He described cutaneous ulcers called herpes esthiomenos which may have been related to
lupus (Smith and Cyr 1988). “The diseases of spring are, maniacal, melancholic, and
epileptic disorders, bloody flux, quinsy, coryza, hoarseness, cough, leprosy, lichen
alphos, exanthemata mostly ending in ulcerations, tubercles, and arthritic diseases”
(Hippocrates as quoted in Smith and Cyr 1988:2). Herbernus of Tours was the first to use
the term lupus to describe a skin disease (Smith and Cyr 1988). In 963 AD he used it to
describe the miraculous healing of Eraclius at the Shrine of St. Martin in Tours: “He
(Eraclius) was seriously afflicted and almost brought to the point of death by the disease
called lupus… The location of the disease… was not to be seen, nonetheless, a sort of
thin red line remained as a mark of the scar” (as quoted in Smith and Cyr 1988:2;
6
Wallace and Lyon 1999:305). Rogerius Frugardi, a 12th century surgeon, described lupus
as an ulcer-like skin condition (Wallace and Lyon 1999).
Although the Romans ruled for 600 years after the decline of the Greek empire,
Greek medicine and medical terminology continued to be used since most physicians
were Greek (Smith and Cyr 1988). During the medieval period several terms were used
for skin conditions including lupus, herpes esthiomenos, leprosy (which included lupus
vulgaris or tuberculosis of the skin, cancer, and leprosy), and noli me tangere (cancer of
the face derived from the biblical passage “touch me not”) (Smith and Cyr 1988;
Benedek 1997; Wallace and Lyon 1999). Although Paracelsus (1493-1541) tried to
differentiate between lupus, herpes esthiomenus, fistula, and cancer, dermatological
terms for skin lesions continued to be used interchangeably until the late 18th century.
In 1790, Robert Willan (1757-1812) proposed a method of classifying skin
diseases based partially on the prior work of other physicians (Smith and Cyr 1988). The
work of Willan and his student, Thomas Bateman, differentiated vesicular diseases
(herpes) from destructive and ulcerative diseases of the face (lupus). “Of this disease
(lupus) I shall not treat at any length; for I can mention no medicine, which has been of
any essential service in the cure of it, and it requires the constant assistance of the
surgeon, in consequence of the spreading ulcerations, in which the original tubercles
terminate” (Willan as quoted in Smith and Cyr 1988:3). It is believed that this passage
describes lupus vulgaris, 2 a rare form of tuberculosis of the skin (Anderson et al. 1988;
2
The condition effects most often the face and nose of women and usually results in disfiguring scars,
keloids, lymphedema, and functional impairment of the areas effected (Anderson et al. 1988). In 1882,
Koch identified the tubercle bacillus and its role in the etiology of tuberculosis of the skin. The cooccurrence of tuberculosis in some patients with lupus erythematosus reinforced the joint classification of
lupus vulgaris (tuberculosis of the skin) and lupus erythematosus. Since lupus vulgaris and lupus
erythematosus resembled each other, it was not until the 1920-30’s that pathologic studies disproved the
tuberculosis theory of lupus etiology (Smith and Cyr 1988).
7
Wallace and Lyon 1999). Willan and Bateman’s work was based only on direct clinical
observation (Blotzer 1983; Smith and Cyr 1988). The concept of a systemic component
to lupus would be developed later – so for the time being lupus erythematosus and lupus
vulgaris were lumped together under the term lupus.
Sub-classifications of discoid lupus erythematosus were developed by Laurent
Theodore Biett (1781-1840) and published by his student Pierre Cazenave (1802-1877).
Biett based his classifications of discoid lupus on Willan’s work, dividing lupus into three
types: 1) lupus which destroys surface tissue; 2) lupus which destroys deep tissue; and 3)
lupus with hypertrophy (Smith and Cyr 1988; Wallace and Lyon 1999). The second
edition of his book, Abrégé Pratique Des Maladies De La Peau (1833), included the first
description of lupus erythematosus under the name “erythema centrifugum” (Smith and
Cyr 1988; Wallace and Lyon 1999). Cazenave reported it as follows:
M. Biett has described a very remarkable variety of this disease under the name of
Erythema centrifugum. It is often of very rare occurrence, and appears most frequently in
young people, especially in females, whose health is otherwise excellent. It attacks the
face chiefly. It generally appears in the form of round red patches, slightly elevated, and
abut the size of a shilling; these patches generally begin by a small red spot, slightly
papular, which gradually increases in circumference, and sometimes spreads over the
greater part of the face. The edges of the patches are prominent, and the centre, which
retains its natural colour, is depressed. There is considerable degree of heat and redness,
but no pain or itching, and each patch leaves a slight depression on the skin. The causes
of this variety are unknown. It sometimes coexists with dysmenorrhoea; it is essentially a
chronic affliction, although its appearance would indicate the reverse (Cazenave (1852)
as quoted in Smith and Cyr 1988:3).
It is widely agreed that Biett’s “erythema centrifugum” was the first published
description of lupus erythematosus (Talbot 1974; Smith and Cyr 1988; Boltzer 1983;
Lahita 1987; Wallace and Lyon 1999). Earlier descriptions of discoid lupus
erythematosus may have been published but historians have found them difficult to
identify due to the divergent terms and descriptions used (Smith and Cyr 1988; Blozter
1983). Later references to lupus include Ferdinand von Hebra, who in 1846, described
8
two types of discoid lesions: “disc shaped patches and smaller confluent ones” as well as
the malar rash which he described as a “butterfly” over the bridge of the nose (Smith and
Cyr 1988:4).
In the fourth edition of the Abrégé (1847), Cazenave referenced erythema
centrifugum as a type of lupus which destroys surface tissue in a separate chapter on
lupus. In 1851, he renamed erythema centrifugum, lupus erythemateux, and classified it
as a fourth variety of Willan’s lupus (Smith and Cyr 1988; Wallace and Smith 1999).
This terminology was latinized to lupus erythematosus by Hebra in 1856. Jonathan
Hutchinson (1879) described the malar rash as a “batwing” and was the first to link
photosensitivity to it (Smith and Cyr 1988).
Neoclassical Period
Until 1872, the term lupus was used to describe a chronic condition of the skin
(Smith and Cyr 1988). In 1872, Moriz Kaposi (known for Kaposi sarcoma) described for
the first time the systemic nature of lupus:
Since then, however, experience has shown that lupus erythematosus may not only
extend more deeply locally, and may be attended by altogether more severe pathological
changes than was known of at that time; but that also various grave and even dangerous
constitutional symptoms may be intimately associated with the process in question, and
that death may result from conditions which must be considered to arise from the local
malady. Of late, therefore, Lupus erythematosus has become a more important affection,
and it has become necessary to modify, in some measure, the description usually given of
the clinical character of the disease. (Kaposi (written in 1872, published in 1880) as
quoted in Smith and Cyr 1988:8).
Kaposi classified lupus into two types: discoid and disseminated (Lahita 1999). His
description of lupus included symptoms associated with what is now considered systemic
disease. He also described the periodicity of symptoms in spite of the chronic nature of
the condition.
9
The symptoms which may be associated with an acute or subactute eruption of Lupus
erythematosus are: 1) Nodules of the size of hazel nuts or walnuts, which are situated
deeply or in the subcutaneous tissue, feel of the consistence of firm dough, are painful
spontaneously and on pressure, and are covered by skin of normal colour, but pushed
foreward by them… 2) Oedematosus, tubercular, painful swelling of the consistence of
firm dough, affecting the skin and the tissues around the joints of the metacarpus of the
fingers and toes, and also of the larger joints, of the knees and elbows… 3) Aching,
boring deep-seated pains in the bones… Severe pains in the large joints frequently occur
in the course of the disease and are occasionally of a nocturnal character, causing the
symptoms to resemble those of syphilis. These rheumatoid pains are very often
precursors of a more or less extensive outbreak of lupus… 4) Adenitis – Very large, hard
and painful swelling of the lymphatic glands, submaxillary and more rarely inguinal, and
of parotid, especially, occur in certain cases of Lupus erythematosus, most frequently
those in which the eruption becomes rapidly developed… (Kaposi (written in 1872,
published in 1880) as quoted in Smith and Cyr 1988:8-9).
In addition to these symptoms, Kaposi also described fever, weight loss, anemia,
amenorrhea, dysmenorrhea, inflammation of the “apices of the lungs” and the potential
for death related to febrile disease associated with skin inflammation (Smith and Cyr
1988). He characterized disseminated lupus by 1) subcutaneous nodules, 2) arthritis, 3)
lymphadenopathy, 4) fever, 5) weight loss, 6) anemia, and 7) central nervous system
involvement (Lahita 1999). Kaposi’s description prompted a number of reports
describing systemic symptomology (see Smith and Cyr 1988). In 1902 Sequira and
Balean described 71 cases of discoid and 11 cases of systemic lupus erythematosus
including the co-occurrence of “ascroasphyxia” or Raynaud’s phenomenon3. They also
described one case who died from glomerulonephritis4 or lupus nephritis (kidney
involvement) (Smith and Cyr 1988).
3
Raynaud’s phenomenon is characterized by discoloration (blue, white, or red) of the hands or feet (fingers
or toes) and sometimes ears or nose. It is brought on by cold temperatures and is due to an underlying
disease or anatomical abnormality. It is commonly associated with lupus and other autoimmune diseases
(Anderson et al. 1988; Wallace 1995).
4
Inflammation of the glomerulus of the kidney. Approximately one-third of systemic lupus patients have
this condition (Wallace 1995). Its prevalence is likely due to the damage caused by immune complexes
which clog the glomerulus of the kidneys. Immune complexes, which are a combination of antibodies and
complement, accumulate in the kidneys and result in an inflammatory response which over time causes
damage.
10
Sir William Osler’s (1895) contribution to the description of lupus is contested
(Smith and Cyr 1988; Benedek 1997). Harry Keil’s observation in 1937 that Osler had
described two cases of systemic lupus erythematosus – lead to several decades of
compounded erroneous attributions of Osler’s contribution to the description of lupus
(Benedek 1997). Historical evidence suggests that even though Osler published a series
of cases (called the “erythema group”) which included two patients with systemic lupus,
he did not identify them as such (Smith and Cyr 1988; Benedek 1997). As a result, his
findings which dissociated visceral (systemic) from cutaneous (discoid) symptoms of the
erythema group did not improve differential diagnosis of lupus (Benedek 1997). Osler’s
conclusions had little to do with lupus (Benedek 1997). His contribution to refining the
description of lupus was small compared to others (Smith and Cyr 1988; Benedek 1997).
In 1904 Jadassohn published a review of lupus which described both discoid and
systemic lupus including the clinical features, pathologic anatomy, etiology and
pathogenesis, diagnosis, prognosis, and treatment (Smith and Cyr 1988). He also
discussed the frequency of symptoms and the involvement of joints, serous and mucous
membranes, and kidneys (Smith and Cyr 1988). By the turn of the century, it was firmly
established that systemic lupus erythematosus (SLE) was a separate disease entity. In
spite of this, there was still considerable disagreement about whether SLE was a variant
of tuberculosis (Lahita 1999). Pathologists played a prominent role in refining the
definition of SLE by providing physical evidence of the anatomic changes characteristic
of SLE. Their work also dispelled the notion that tuberculosis was involved in the
pathogenesis of SLE. In 1924 Libman and Sacks described atypical nonbacterial
11
endocarditis5 as attributable to SLE (Benedek 1997). In 1935 Baeher and colleagues
published a series of 23 autopsied cases and linked renal lesions and sun sensitivity to
SLE (Benedek 1997). In 1936, a postmortem diagnosis of SLE in the absence of
cutaneous lesions provided the first evidence that skin involvement was not essential
(Lahita 1999). Gross and microscopic changes were noted in various organs such as the
heart, lungs, liver, kidneys, and skin. As a result of pathologic examinations, an
anatomically grounded description of SLE emerged: “an acute erythematosus disease
with a predilection for young women, with a poor prognosis, and with pathologic lesions
of the inner organs” (Lahita 1999: xix).
Refinements to the description of SLE followed the thesis of Morgagni (16821771) (Klemperer at al. 1942). Called the “Father of Modern Pathology,” Morgagni
argued that diseases reside in certain organs of the human body and that diagnosis,
prognosis, and treatment must be based on precise understanding of the pathologic
changes in anatomic structures. Morgagni’s approach dominated pathologic anatomy for
centuries and also shaped understanding of the complexities of SLE (Ehrlich 1984). As
pathology reports and laboratory findings proved or disproved observational studies, the
characteristics of SLE evolved. Described as important as the “discovery of the Pacific
ocean,” Klemperer, Pollack and Baehr (1942) implicated collagen as the unifying
characteristic of SLE and other autoimmune diseases (Ehrlich 1984). Ehrlich points out
that what made this observation remarkable was that it did not identify an organ specific
site of disease. Instead Klemperer and colleagues (1942) argued that finding the primary
organ effected by SLE was futile. They proposed that the heterogeneous organ lesions
5
Endocarditis refers to inflammation of the lining of the cavities of the heart.
12
seen in SLE were due to a fundamental alteration of collagenous connective tissues6.
Therefore, it was more proper to consider SLE as a “systemic disease of the connective
tissues” (Klemperer et al 1942: 1593).
We first became aware of the disorder of the connective tissue as a system in our studies of
systemic lupus erythematosus. The apparent heterogeneous involvement of various organs in this
disease has no logic until it became apparent that the widespread lesions were identical in that they
were mere local expressions of a morbid process affecting the entire collagenous tissue system
(Klemperer et al. 1942:1593-4).
Although this discovery still seats SLE within a discrete anatomical system (connective
tissue), their findings dissipated attempts to locate immediate cause within a single organ.
The second principle of biomedicine challenged by SLE was the theory put
forward by Paul Ehrlich (1865-1915). Ehrlich argued in 1901 that an organism cannot
react against itself. His theory was first questioned by Wilhelm Gennerich in 1921 who
proposed that the etiology of SLE depended on autoimmune damage to connective tissue
cells. Arnold Rich verified that this by demonstrating that the primary areas effected by
SLE were endothelium and collagen due to hypersensitivity to self antigens (Wallace and
Hahn 1997).
Biomedical advances in understanding of SLE were not limited to descriptions of
anatomy and symptomology. Part and parcel to this process was the need for diagnostic
tests. The Wasserman test for syphilis was developed in 1906. Soon after, it was
discovered that it gave positive results in non-syphilitic individuals. False positive results
further supported the notion that lupus erythematosus was not a manifestation of
tuberculosis (since false positive reactions were not noted among TB cases) (Wallace and
Hahn 1997). Use of false positive syphilis tests as a proxy measure for SLE was
6
Connective tissue binds together and supports various structures of the body including internal organs
(e.g. heart), skin, and cartilage (Anderson et al. 1988). It is the “glue” that holds muscles, skin and joints
together (Wallace 1995).
13
abandoned after the discovery of the lupus erythematosus (LE) cell. Testing in order to
rule out overlapping conditions remains a fundamental part of the clinical diagnostic
process today.
Modern Period
The development which revolutionized ideas about SLE (and testing) was the
discovery of the “LE cell” (Lahita 1999; Hochberg 1993). In 1948 Hargraves, Richmond
and Morton observed LE cells in the bone marrow of SLE patients and hypothesized that
the degenerated appearance of the cell was due to phagocytosis7 (Hargraves et al. 1948).
This discovery made it possible for SLE to be considered an autoimmune disease (Talbot
1976). This observation opened the door to the application of immunology to the study of
SLE (Hochberg 1993) and initiated the discipline of immunopathology (Wallace and
Hahn 1997). A laboratory test was developed for the LE cell. Initially the test appeared to
be positive in nearly every case of SLE and rarely positive in cases with only cutaneous
LE (Schur 1996). An early conclusion was that it would help identify cases of SLE in the
absence of discoid symptoms (Wallace and Hahn 1997). Until it was associated with
rheumatoid arthritis (20% have positive LE cell tests) and other illnesses, the LE cell was
considered to be SLE specific (Lahita 1999). By the late 1950’s it became clear however
that the LE test was positive in only 50-70% of SLE cases. In spite of its lack of
specificity, the LE test was a major breakthrough in the diagnosis of SLE. It meant that
for the first time, clinical impressions could be tested using “objective” measures (Schur
1996). At the time SLE was considered universally fatal and most cases were identified
7
Phagocytosis refers to the engulfing and usually the destruction of microorganisms or cell fragments by
phagocytes (e.g. white blood cells) that defend the body against infection (Merriam-Webster 1993).
14
post mortem (Schur 1996). The advent of the LE test meant that diagnoses were
occurring earlier in the disease process thereby facilitating earlier treatment (Schur 1996).
The discovery of the LE cell prompted a large number of studies on other serum
abnormalities and autoantibodies (Lahita 1999; Hochberg 1993). What was needed was a
reliable and specific test to confirm suspected cases. In 1957, Friou found antinuclear
antibodies in blood specimens from SLE patients (Hochberg 1993). This led to the
development of the antinuclear antibody test which has been shown to be positive in 96
percent of SLE cases (Wallace 1995). Although a significant breakthrough in diagnostic
technology, the test was also positive in 5 percent of the general population (Wallace and
Hahn 1997) and 30% in cases of rheumatoid arthritis and Sjögren’s syndrome8. The LE
cell detected in rheumatoid arthritis cases appeared to be morphologically the same as in
cases of SLE (Talbot 1976). Given this overlap, it was a useful indicator of SLE but it
could not be used as the singular definitive test. Since the 1950’s a number of additional
tests have been developed based on the recognition of: 1) antibodies to deoxyribonucleic
acid (DNA); 2) antibodies to extractable nuclear antigens (ENA) (nuclear
ribonucleoprotein (nRNP), Sm, Ro, and La); and 3) anticardiolipin antibodies (Wallace
and Hahn 1997; Hochberg 1993). Although noteworthy advances in the diagnosis
armamentarium, positive results vary from 20-75 percent of patients with SLE (Schur
1996). Therefore, positive results are suggestive of SLE but negative results cannot rule it
out. These tests are frequently used in both clinical and research settings to characterize
subsets of SLE patients based on antibody type (Hochberg 1993).
8
Sjögren’s syndrome is characterized by dry eyes, dry mouth and arthritis and may accompany other
autoimmune diseases (rheumatoid arthritis, SLE, scleraderma, or polymyositis) or be diagnosed by itself. It
usually occurs in middle aged or older women and its etiology is unknown (Anderson et al. 1988; Wallace
1995).
15
Historical Underpinnings: The Treatment of SLE
Classical Period
Prior to the publication of Kaposi’s work in 1872, lupus was a term used to
describe a chronic condition limited to the skin (Smith and Cyr 1988). Not surprisingly
the majority of treatments were salves, ointments and compounds applied directly to
discoid lesions. Since lupus was a diagnosis that clustered together disparate disorders
some of which were infectious (e.g. lupus vulgaris, tubercular infection of the skin),
treatment efficacy varied depending on the underlying condition. Treatment options also
included more generalized approaches. Paracelsus (1493-1541) recommended treating
lupus with blood letting since he observed that lupus devoured tissues with greater blood
supplies (Wallace and Lyon 1999). Cazenave described his recommended treatment
approach as follows:
Treatment is both general and local; it varies moreover according to the form of lupus
that it is called upon to fight. Lupus erythematosus requires internal use of sudorifices,
salseparille, gayac, daphne mezereum. Their dispensation is often enough to produce a
very good effect, which is helped moreover by the use of steam baths and showers, and
ammoniacal lotions. These means work by producing a local excitation, which has a
favorable influence on the progress of disease… In conclusion, the bi-iodide of mercury,
applied as a topical remedy in the treatment of lupus, has a double effect: a local irritating
action and a general action, and the two combine to deeply alter the ulcerations of lupus,
to make disappear tubercular lupus, and the voluminous engorgements, and finally to
cure a serious illness, by smooth, solid scars, without loss of more or less deformed
matter, as is the case with the use of properly so called caustics. As the application of biiodide should be frequently repeated, that is to say every six or eight days, and as it is, in
general, very painful, it is better to limit it to small surfaces at the same time. I have been
exclusively using bi-iodide of mercury for several years now, and I have obtained results
which allow me to say that it is today the best topical remedy that one can use against this
dreadful disease. It is one of the most active and most sure methods of treatment, not only
to achieve cicartrization [scarring] of ulcerated surfaces, but in addition to cure without
sores, without deforming scars of the tubercular lupus, hypertrophic lupus and even lupus
erythematosus. The treatment of lupus is powerfully aided by the use of water steam
baths and showers. These should be limited to a length of a quarter of an hour, and to the
temperature of 30 to 35 ˚R. The patient should be, as much as possible, put on a light
healthy diet, and placed in good hygienic conditions (Cazenave (1856) as quoted in
Wallace and Lyon 1999:312).
16
Mercury and iodides were commonly used to treat infections in the nineteenth century
(Wallace and Lyon 1999). Since infection was a serious complication of discoid lesions,
these treatments may have had some positive localized effects. Caustics like mercury
caused scarring and sudorifices (like sarsaparilla) promoted sweating (Wallace and Lyon
1999). Aside from inducing pain in patients, the scarring and sweating compounds did
little to address the underlying cause of disease (Wallace and Lyon 1999).
Neoclassical Period
In 1894, Payne reported the usefulness of quinine in the treatment of lupus
(Hochberg 1993). Four years later Radcliffe-Crocker (1898) described increased efficacy
when quinine was used in combination with salicylates (Hochberg 1993). During World
War II Atabrine (quinacrine, mepacrine) was used by allied forces to treat malaria.
Anecdotal evidence linked it to improvements in some skin conditions (Wallace and
Hahn 1997). In 1951, Page reported positive results when using it to treat of discoid lupus
patients. Later, chloroquine was shown to be less toxic that Atabrine and just as effective
in treating systemic lupus. In 1955, hydroxychloroquine (Plaquenil) was released for the
treatment of SLE and rheumatoid arthritis (Wallace and Hahn 1997). Antimalarials work
in a variety of ways. They block ultraviolet light from damaging skin; have antiinflammatory effects like NSAIDS; lower cholesterol; inhibit clotting; block cytokines
which promote inflammation (thereby reducing joint and muscle pain); “alter the acidbase balance of cells which limits their ability to process antigens” (processing antigens
leads to the production of more unnecessary antibodies) (Wallace 1995:199).
In 1897, the first reports on the clinical use of salicylic acid in the treatment of
rheumatic disorders were made (Hedner and Everts 1998). By the turn of the century
17
acetylsalicylic acid (Aspirin) was recognized worldwide for its effectiveness in pain
treatment for rheumatology disorders (Hedner and Everts 1998). Aspirin is effective due
to its pain reducing and anti-inflammatory effects (Wallace 1995).
Modern Period
There are now dozens of nonsteroidal anti-inflammatory drugs (NSAIDs) being
used to limit pain and inflammation in SLE patients (e.g. diflunisal (Dolobid), ibuprofen
(Motrin), naproxen (Aleve, Naprosyn), indomethacin (Indocin), and sulindac (Clinoril),
and Celecoxib (Celebrex). Treatment of lupus was revolutionized in the 1950’s with the
discovery of adrenocorticotrophic hormone and cortisone (Hench 1952). Corticosteroids
are the primary therapy for most cases of systemic lupus (Hochberg and Petri 1993).
Antimalarials are used to treat cases with skin and joint involvement. Immunosuppressive
and cytotoxic drugs are used to treat cases with kidney (lupus nephritis), brain (neuropsychiatric or central nervous system lupus) or other serious organ involvement
(Hochberg 1993). The immunosuppressive and cytotoxic drugs used to treat lupus are the
same ones used in chemotherapy treatment of cancer patients. By suppressing the
immune system, these drugs lower the immune response thereby giving patients relief
from their own immune system attacking healthy tissues (autoimmune response).
Treatment side effects are a serious concern even with first line treatment options
(Wallace 1995). Non steroidal anti-inflammatory drugs can cause liver and kidney
damage. Steroidal drugs can cause weight gain, mood swings, psychiatric malfunctions
(psychosis), vision loss (cataracts), diabetes, and bone marrow decay (necessitating joint
replacement). Immunosuppressive/cytotoxic drugs may cause nausea, vomiting and hair
loss, increase the risk of infection, can induce temporary or permanent infertility, and in
18
rare cases even death. Because most treatment options for lupus are long term, the
complications of treatment often threaten quality of life as much as the disease itself
(Wallace 1995).
The general therapeutic considerations in the treatment of lupus during the
nineteenth century evolved into the following list today: importance on rest in the
treatment of fatigue (a common symptom of lupus probably due to overactive immune
response and concomitant inflammation); exercise, physical therapy, and rehabilitation to
strengthen muscles and improve endurance with low impact activities that do not stress
inflamed joints; reducing and/or stopping smoking which impairs oxygenation of blood,
raises blood pressure, worsen symptoms of Raynaud’s syndrome and may be linked with
autoantibody production; acknowledgement that weather changes (barometric pressure
changes) may aggravate stiffness and aching; pain management through the use of antiinflammatories (i.e. salicylates, NSAIDs, corticosteroids); reduction of stress (emotional
and/or physical) since it may induce or exacerbate SLE; well balanced diet and
consumption of supplemental vitamins; sun avoidance and use of sun screens; and use of
topical steroids for skin lesions; and for more serious SLE cases, treatment with
immunosuppressive or cytotoxic drugs (Wallace and Hahn 1997).
Current Understanding: Brief Description of the Characteristics of SLE
Systemic lupus erythematosus is considered the prototypical human autoimmune
disease. In trying to understand how and why the body's own defense system sometimes
turns against itself, biomedical researchers often turn to SLE for answers. SLE affects
multiple systems within the body (immune, circulatory, nervous, cardio-pulmonary,
renal) and patients exhibit differing constellations of symptoms - fatigue, fever, arthritis,
19
depression, muscle and joint pain, Sjogren's syndrome (dry eyes and mouth), lowered
immune response to foreign antigens, renal, skin and other tissue lesions, and serological
abnormalities.
Symptoms vary widely and each woman with SLE may experience the illness in a
different way. The most common symptom is fatigue followed by flu-like aches and
pains all over the body. Symptoms of SLE flare and recede unpredictably over time,
making coping and management difficult. Since there is no cure for SLE and complete
remission is rare, flares are treated as they occur and maintenance strategies are
developed to suppress symptoms to an acceptable level. Persistent fatigue, aches, and
pain is the generalized experience of SLE sufferers punctuated with rapid, severe, and
unpredictable increases in symptomology. Symptoms are usually managed with
nonsteroidal anti-inflammatory drugs and antimalarial agents and more severe cases are
treated with glucocorticosteroids and cytotoxic drugs (von Feldt 1995). Intense
immunosuppression and stem-cell transplantation have emerged as treatments for severe
cases. However, additional research proving their effectiveness is needed (van Laar and
Tyndall 2003). Drugs currently used to treat cases with organ involvement have serious
side effects and secondary problems related to pharmaceuticals are common.
Although the pathology of the disease is well understood - its etiology is unclear.
The search for the actual cause has lead biomedical researchers to hypothesize a variety
of possible pathways including genetic predisposition, viral damage of the normal
immune system, abnormal immune regulation by sex steroids and other hormones, blood
complement deficiencies, drug induced autoimmunity, and environmental toxins
including silicone breast implants (Dibner and Colman 1994).
20
Approximately five hundred thousand people in the United States have SLE
(Dibner and Colman 1994). About 90% of SLE cases are women (Wallace 1995) and
nearly 90% of these women are of child bearing age. About one in every five hundred
women in the United States can expect to be diagnosed with SLE. Most women are
diagnosed between the ages of 15 and 40, but young girls and postmenopausal women
can also be affected. These numbers may not represent the total number of women living
with SLE however because the disease is difficult to diagnose (Panush et al. 1993; Dibner
and Colman 1994). Because symptoms of SLE vary from case to case both at onset and
over a lifetime, SLE is often misdiagnosed. Most undiagnosed SLE patients go to their
physician with vague complaints of fatigue and diffuse pain, which can be easily
dismissed or characterized as psychosomatic (Barr and Merchut 1992).
Delayed diagnosis brings with it years of uncertainty and suffering. Women with
SLE may suffer years of pain and recurrent visits to their physician only to be told little
can be done for them. Treatments may ameliorate symptoms but do not address
underlying cause. Although symptoms can be managed, epidemiological studies reveal
divergent mortality rates for African-American and white women which may be
treatment related (Walsh et al. 1995). Differential mortality rates by race appear to be
related to longer postdiagnosis survival rates for whites due to improved clinical
management of SLE. The reasons why African-American women do not appear to share
the same benefits of postdiagnosis treatment is unclear (Walsh et a. 1995). Total
mortality rates have risen by 30% for African-Americans since the late 1970’s (4.6 vs.
18.7 deaths per million for whites vs. African-Americans, respectively). Trends indicate a
21
higher prevalence of SLE among African-American women than previously documented
(Walsh et al. 1995).
Background: Anthropology and Chronic Illness
“Although most of us are sick at least from time to time, none of us is ever sick in quite the same way
twice. And each of us is sick in a way different from others. We are sick not only from different “things,”
or “causes,” but we are sick in a manner corresponding to our singular bodies, our unfolding biographies,
our cultural and historical positions, and our current circumstances. Each event of sickness is unique.”
—Robert Hahn 1995, page 13
Anthropological interest in chronic illness has been growing over the last twenty
years. The research published on chronic illness in the United States and abroad concerns
those diseases that satisfy public health priorities in chronic illness namely, hypertension,
cancer, diabetes and asthma (Heurtin-Roberts and Becker 1993; Kagawa-Singer 1993;
Markovic et al. 2004; Schoenberg et al. 2005) but also a wide variety of other diseases
(i.e. end-stage renal disease, epilepsy, multiple sclerosis, etc.) and so-called functional
somatic disorders (i.e. fibromyalgia, chronic fatigue syndrome, temporal mandibular joint
pain, etc.). Other select research on chronic illness by topic includes: chronic illness
causation (Ready 1985; Dressler 1993); treatment/management chronic illness (Reid
1992; Becker et al. 1993); chronic illness meaning (Kleinman 1988; Saillant 1990;
Balsham 1991; Kagawa-Singer 1993; Mathews et al. 1994); chronic illness as adaptive
response (Heurtin-Roberts 1993); narrative and chronic illness (Garro 1994; McKevitt
2000; Monks 2000; Kierans and Maynooth 2001;); embodiment and chronic illness
(Gordon 1990); institutional/establishment impact on chronic illness experience (Wright
and Morgan 1990; Sered and Tabory 1999); phenomenology of chronic illness (Kaufman
1988; Estroff 2001); liminality and chronic illness (Honkasalo 2001); diagnostic
transformation and chronic illness (Sachs 2001); disability and chronic illness
22
(McLaughlin and Zeeberg 1993); iatrogenic chronic illness (Greenhalgh 2001); and
social control and chronic illness (Peake et al. 1999).
Anthropological research on chronic illness examines the reciprocal and additive
impact of personal, social, cultural and institutional factors on subjective experience. The
most significant contribution of the field to the literature is its grounding in richly
detailed narratives about lived bodily experience. This contrasts with what has been
published in the fields of medicine, psychiatry, psychology, public health and sociology.
Although illness experience is the basis of much of this research, the focus tends to be
limited by topic (psychological, coping response, barriers to health care, compliance, etc.)
and thus comparisons across topics are rarely carried out. Anthropological approaches on
the other hand case a wider analytic net which facilitates the exploration of broader and
overlapping issues. If a single unifying principle or common thread could be identified
connecting previous anthropological research, it would most likely be the topic of
suffering. Chronic illness offers a lens to view human suffering which cuts across
personal, social, cultural, institutional and societal differences.
Suffering, Kleinman and Kleinman (1991:279) write, “is a concomitant of
illness.” Although linked with illness, the source of suffering is multifaceted. It can be
physical, mental, social, spiritual, or existential. It may accompany illness but its impact
and longevity depends on personal, social and institutional forces which influence its
continuation, exacerbation or alleviation. Suffering when linked to chronic illness, tests
the individual, the fabric of human relationships, and biomedical assumptions about the
nature of disease. The women at the center of this research study never described
23
themselves or their experiences as “suffering.” Nevertheless any conscientious observer
would readily agree that women with lupus suffer.
There are two levels at which suffering is operationalized: the personal and the
social. The idea that someone else is suffering is quite different from the experience of
suffering itself. Thus, even though I may be in pain, I may not perceive that pain to be
suffering per se. Instead I may choose to focus on enduring the pain. In this way, the
chronicity of illness turns the experience of suffering on its head. Rather than a
devastating experience – pain is transformed into something endurable. This is how I
believe the women understand and live day-to-day with the challenges that lupus
presents. They do not describe themselves as suffering because they do see themselves
that way. Granted, there are certainly days when they might agree with that
characterization. For this reason, the women in this study will be described as “having
lupus” rather than as “lupus sufferers.” Since “suffering” is an important theoretical
construct, it will be used for analytic purposes.
Research Objectives
The objectives of this research were to: 1) understand the factors that contribute
to delayed diagnosis and their effects on women; 2) understand the significance of
diagnosis; and 3) to explore the relationship between invisibility, chronicity and illness
experience by examining descriptions of bodily suffering, treatment modalities and their
side effects, and support group participation and coping strategies. The research areas
included: illness experience as it relates to three issues invisibility and chronicity; the
acute model of disease causation and cure and its implications for biomedical diagnosis
and treatment of chronic illness; biomedical objectivity, laboratory testing and diagnosis
24
delays; mind-body dualism, psychosomatic diagnoses and diagnostic delays; differential
expressions of pain, chronicity and pain tolerance; and the support group process,
functioning and support types.
Chapter Overview
Chapter 1 (Methods and Fieldwork Challenges) describes the research location,
sampling strategy and sample size, enrollment procedures, qualitative and quantitative
methods used to collect data (including the open-ended interview, participant
observation, document review, structured questionnaire and psychosocial scales, disease
damage index, and disease activity measures), and data analysis strategies for each
method. It also discusses the challenges I encountered while conducting my fieldwork
including those associated with a domestic fieldwork location, role conflicts I
experienced as a researcher and a friend to the women in my study, the problems I
encountered disengaging from the field, some general reflections on the nature of
anthropological research as humanistic inquiry, and the ethical challenges of guarding
confidences while protecting the interests of the women in my study.
Chapter 2 (Description of the Study Population) presents descriptive data about
the study population based on the data collected from the structure questionnaire. Data is
presented describing the demographic and other characteristics of the women including
the results from the psychosocial scales and disease damage index. The data is presented
in tables primarily stratified by three variables: ethnicity, diagnosis timing (pre-diagnosis
vs. years since diagnosis), and support group participation. A summary of differences is
presented for each topic.
25
When I began this research project, I was interested in examining differences by
ethnicity and class. I made an effort to recruit an ethnically diverse sample of women.
Although I started out with an ethnically based analysis strategy, I found little differences
of note in reaction to diagnosis delays. As I compared the women’s narratives, there were
more between group similarities than differences. Therefore, aside from a few differences
in illness characteristics presented and discussed in this chapter, I do not address the issue
of ethnicity as it relates to illness experience in any of the remaining chapters. It is
possible that differences by ethnicity were not obvious due to the high level of education
in the sample (for both African-American and white women). It is also possible that some
of the women did not feel comfortable revealing to me the full breadth of their
experiences including instances of racial prejudice or institutional racism. I do not believe
this was the case since the format of the interview was open ended and the women were
in the narrative “driver’s seat.” However, I did not specifically ask the women to discuss
issues related to race or class discrimination. Finally, although class may have played a
role in illness experience, conclusions based on class difference were not drawn due to
the high levels of education, access to private health insurance and income levels of the
study population.
Chapter 3 (Diagnosing Illness, Legitimizing Suffering: Biomedicine and the
Naming of Disease) explores the issues that effect women as they search for diagnosis. It
focuses on their experiences prior to diagnosis, the diagnostic event itself, and their
reactions to diagnosis. It also examines the ways women resist diagnosis delays and
attempt to take power into their own hands. The analysis confirms previous research on
the legitimizing nature of diagnosis. However, it is also argued that the significance of the
26
diagnostic event is short-lived as uncertainties persist given the nature of biomedicine and
the chronicity of lupus. It is argued that diagnosis delays are directly linked to overreliance on objective measures and tests that reify the organicity of illness. The
ambiguities inherent in the diagnostic process are discussed as well as the challenges they
pose not only for patients but also physicians. The importance of diagnosis is discussed
as part of a “diagnostic odyssey” and described as an essential, self-affirming and socially
legitimizing event. However it is further argued that the benefits of diagnosis decrease as
the periodicity of symptoms continues to confound the acute disease model routinely
applied to the management and treatment of the chronically ill.
Chapter 4 (Beyond the Subjective Experience of Pain: Narrative and Visual
Descriptions of Bodily Suffering) explores the meaning of pain by examining linguistic
descriptions and visual representations of pain. These characterizations are compared and
examined in relation to current and usual pain levels. The exploration reveals a diverse
web of meaning which surpasses the language of pain and clarifies the relationship
between chronicity and illness experience. The main argument of the chapter is that
although chronic pain poses significant challenges to those effected by it, ironically, its
very chronicity may facilitate coping. Narrative analysis reveals an adaptive strategy for
dealing with pain through a process of comparing past and present pain experiences. Pain
scale analysis reveals that pain tolerance levels were reset and normalized over time.
Thus it is argued that the longer the time since diagnosis and the higher the levels of
previous pain experienced, the more likely the threshold for pain tolerance was raised and
normal redefined. It is further argued that this perspective on pain – the bodily wisdom
that comes as a result of experience – limits the uncertainty of the chronic illness
27
experience. Thus, the lessons learned over time provided perspective which normalized
pain experience, increased pain tolerance and decreased the ambiguity of the illness
experience.
Chapter 5 (Seeking Support Finding Friendship: Support Group Participation and
the Illness Experience of Women with Systemic Lupus Erythematosus) examines
the support group process using epistemological categories to describe women’s ways of
knowing and to examine whether acquiring knowledge through friendship may explain
the appeal and success of support groups. The chapter presents the women’s reasons for
attending support groups and suggests that three types of support are generated:
informational, emotional and instrumental. Examples of each category are given and
discussed based on participant observation and the women’s illness narratives. The
functioning of support groups is examined based on Belenky and colleagues (1986) work
on women’s ways of knowing. The premise that women are “connected knowers” who
acquire knowledge through relationships based on friendship is explored as a possible
reason for the appeal and success of support groups. It is argued that connected knowing
is rooted in the cultivation of female friendship which creates and perpetuates a shared
sense of community essential to support group functioning.
Chapter 6 (Ill-Fated Alchemy: Biomedical Power, Treatment Practices and their
Implications for Women with Lupus) presents a cases study which problematizes the
pharmaceuticals and treatment modalities currently used to treat lupus (e.g. the use of
cytotoxic drugs). It examines how the acute model of illness when applied to the
chronically ill can produce life threatening side effects or even hasten death. This chapter
is a cautionary tale about one end of the treatment spectrum. Marian’s story illustrates
28
how biomedical and sociocultural forces can combine to create ill-fated alchemy. It is an
unusual story of one woman and one doctor; however it highlights critical issues that
arise in the treatment experience patients and their physicians confront in much more
common circumstances.
29
Chapter 1: Methods and Fieldwork Challenges
Research Design
This medical anthropological dissertation research project is a cross-sectional study
of the illness experience of African-American and white women with systemic lupus
erythematosus (lupus) and lupus-like symptoms. It was conducted in Atlanta, Georgia
from 2000-2004. Its aim was to describe the impact of diagnosis delays, treatment
options and support group participation on women and to furnish a "snapshot" of lupus
experience across of wide range of diagnosis stages (ranging from pre-diagnosis to postdiagnosis). Qualitative and quantitative methods were used to collect data. Methods
included: open-ended interview; structured questionnaire including psychosocial
instruments (to assess coping style, social network and support, pain, life interference due
to illness, and trust in physician); participant observation of support group meetings; and
document review (e.g. medical records, educational materials, etc.). Forty-two women
participated in the study (20 African-American; 22 white). Participant observation was
conducted on monthly support group meetings from 2000-2002. Two case studies drawn
from the overall sample were conducted from 2001-2002 and 2003-2004.
Metropolitan Atlanta and Geography
The lives of the women in this study are shaped by the physical and social
environment of Atlanta and the “stress” associated with living in a large metropolitan
area. The natural features of the area include low foothills of the Appalachian Mountains
to the north and the piedmont to the south. The northern suburbs (Cherokee, Clayton,
30
Cobb, Coweta, Dekalb, Douglas, Fulton, Gwinnett and Hall counties) are more hilly than
those in the south (Paulding county).
The weather and climate is considered temperate and there are four distinct
seasons. Winters are mildly cold with average daily lows in January at 33˚F˚ and average
highs at 51˚F but reaching 70-75˚F. Snow is rare with an average annual snowfall of 2.1
inches usually occurring in January and February. Summers are consistently hot and
humid with July temperatures averaging 71˚F in the mornings and 89˚F in the afternoons,
slight breezes, and a 20-30% chance of thunderstorms. Average rainfall amount is about
54 inches in late winter and early spring. Spring in Atlanta is pleasant but temperatures
are variable due to cold fronts and severe thunderstorms which effect most of the central
and eastern states. Pollen counts tend to be extremely high in the spring, regularly
exceeding 2000 particles/m3 in April (Wikipedia 2006).
The quality of life in Atlanta is considered good by most except perhaps those
stuck in traffic. Traffic in Atlanta has grown steadily worse in last 10 years with average
commute times for most residents at 26 minutes (US Census Bureau 2006). Due to the
number of ozone alert days, the use of federal funds for road construction have been in
jeopardy more than once over the last seven years (Georgia Department of Natural
Resources 2006). Aside from increased tax revenue, development has created a new set
of problems for metropolitan area counties. Deforestation has become a significant
problem. This has had an adverse impact on area watersheds causing them to flood more
rapidly and to a greater extent (Wikipedia 2006). Native flora and fauna have been
negatively impacted as suburban development of flood plains and waterways has led to
the destruction of indigenous plants and animal habitats. Some residents question
31
development but little has been done to protect green space or slow its advance. The pace
of life is typical for a rapidly growing metropolitan area. Conversations about traffic and
“stress” are second only to talk about the weather. Atlanta’s reputation as “the gateway to
the south” continues to grow. Perhaps because of this, its growth has been taken for
granted and until recently raised few concerns.
Study Population and Sampling Strategy
The study sample was drawn from the metropolitan Atlanta area with participants
living in Cherokee, Clayton, Cobb, Coweta, Dekalb, Douglas, Fulton, Gwinnett, Hall and
Paulding counties. The city of Atlanta straddles Fulton and Dekalb counties but its
official seat is in Fulton. The Atlanta metropolitan area consists of 28 counties and has a
population of 4,247,981 (US Census Bureau 2006, 2000 Census). In 2000 it was the
eleventh largest metropolitan area in the United States. The 2004 Census estimate shows
increasing population growth (+460,316) which would make it the ninth largest
metropolitan area in the United States (US Census Bureau 2006). One participant lived in
Hall County which is not part of the Atlanta metropolitan area. Gainesville is the largest
city in Hall County (25,578) and is located approximately 55 miles north of Atlanta.
Table 1.1 – Study Participation by County, Atlanta Metropolitan Area, 2000–2004
A-A
White
Total
Cherokee
0
1
1
Clayton
5
1
6
Cobb
1
7
8
Coweta
0
2
2
Dekalb
3
2
5
Douglas
1
0
1
Fulton
8
4
12
Gwinnett
1
4
5
Hall
0
1
1
Paulding
1
0
1
A purposive judgmental sampling strategy was used to recruit participants. The
sampling criteria were: ethnicity, time since diagnosis, and support group participation.
Self-reported information was used to determine selection criteria. Ethnicity was chosen
32
due to the demographic characteristics of lupus patients. Approximately 60% of women
diagnosed with lupus are African-American or of Hispanic descent. Length of time since
diagnosis was considered important because studies show that the longer the period since
diagnosis (>5 years), the better the psychological and social adjustment of the individual
to the chronic condition (Pfeiffer and Wetstone 1988; Guerrero 1991; Reichenberger
1992). Research has also demonstrated that past events in chronic illness narratives are
reconstructed in a manner congruent with current understandings; the present is explained
with reference to the reconstructed past; and both are used to generate expectations about
the future (Williams 1984; Kelley 1986; Garro 1992, 1994). Finally, support group
participation was important since it is a popular method used to cope with illness and
research has demonstrated that the duration of support group participation is associated
with decreased levels of depression and anxiety among women with lupus (Bitter 1986).
Enrollment Procedures
Study participants were recruited from support group rosters, referrals from
personal contacts and study participants, and advertisements in the newsletter of the
Lupus Foundation of America (LFA), Inc., Georgia Chapter. Women recruited through
support groups meetings and personal referrals were approached/called and asked
whether they would like to participate in the research. If interested in joining the study,
an appointment time was scheduled. A reminder call was made the night before the
scheduled appointment. Signed informed consent was secured at the time of the
interview.
Case study participants were drawn from the overall sample. Two case study
participants were identified in the course of the research. Consent was given for inclusion
33
in the case study and for access to medical records. One physician was enrolled and
consent was given at the time of the interview.
Participant observation was conducted at support group meetings sponsored by
the LFA, Inc., Georgia Chapter. I contacted the LFA and spoke with the Executive
Director about my research and specific interest in support group meetings. Before
attending the first meeting, I contacted the support group leader to introduce myself and
to ask permission to poll the attendees’ willingness to have me present at the meeting. If I
was unable to reach a support group leader in advance, I introduced myself at the time of
the meeting. Group consent was obtained at my first meeting. Each support group I
contacted agreed to my presence at the meeting. At subsequent meetings when new
attendees were present, I was re-introduced to the group.
Research Methods
A combination of research methods were used including standard ethnographic
methods like open-ended interviews, participant observation, and document review; as
well as quantitative methods such as a structured questionnaire which included
psychosocial instruments on a variety of topics and a lupus damage index. This section
describes each data collection method.
Open-ended interview
All participants in the overall study were interviewed once. Open-ended
interviews lasted approximately 45 minutes to 1 hour and were conducted in a private
location in the participant’s home or at local public library. I opened every interview with
the following question: “Please tell me your story about what you went through to get
your diagnosis. You can start from any point where you’d like – from when your
34
symptoms first started to what led up to your diagnosis.” If the participant had not been
diagnosed with lupus the first part of the question was changed to: “Please tell me your
story about what you’ve been going through to try to figure out what is going on with you
health wise.” As the interview progressed I asked spontaneous questions to clarify
content or to probe for additional information. The only question I consistently asked
every woman was: “What was your reaction when your doctor told you that you (might)
have lupus? When appropriate I also asked questions about symptoms and disease
experience, treatment options (medication and side effects), flares (what is a flare for
you?), pain, work (employment and job loss), disability, medical care costs, health
insurance, doctor-patient relationship, coping mechanisms (including spirituality and
religious views), and social support from family and friends. All of the interviews were
conducted in one sitting.
Case study participants were interviewed on multiple occasions over 6 months to
one year. After the initial interview, I dispensed with tape recording and opted instead for
note taking. Although I did occasionally take notes in person, I spent more time writing
my notes after my encounters with the women. This suited the nature of our interactions,
since they were usually built around other activities: getting together to do arts and crafts,
watching television (ER was a favorite), dinner and a movie at home or out,
conversations on the way to support group meetings, traveling together (in and out-ofstate) to LFA functions, and other personal interactions. I did not know either of the case
study participants before they joined the study. What started as casual acquaintanceship
grew into meaningful friendships that transcended the mundane exercise of data
gathering. During the case study period, I developed deep personal relationships with
35
each woman. As the friendships deepened I felt more like a confident than a researcher. I
started seeing and experiencing first-hand what it meant to live with lupus and what it
meant to be a friend of someone with lupus. Although there were small indications along
the way that friendship was developing (calling each other just to chat, asking advice,
sharing personal memories, etc.), it was not until I was called upon to act as a friend and
source of support during times of crisis that I realized the extent of the friendships that
had developed. Both women selected were going through some very serious physical and
emotional challenges. Marian was in the beginning stages of bone-marrow failure and
Layli had been recently diagnosed with lupus nephritis. Marian was a seasoned veteran
and Layli was a novice when it came to dealing with the medical establishment. In spite
of their disparate levels of experience, I found myself providing not only moral support
and advice but also acting as an advocate for them in the hospital. The progression of the
relationships from researcher/subject to friend/friend occurred gradually over time. For
each, I recall specific moments when I realized that that this transition had taken place.
After accompanying Layli to the emergency room for what her rheumatologist
later called “the worst shingles case she had ever seen,” I was told by the head nurse that
I would have to leave the examining room because of confidentiality requirements. After
exchanging a quick glance, Layli expressed her desire that I be allowed to stay. The nurse
explained that only immediate family was permitted in the examining room. I acquiesced
and stood outside the door. When the doctor arrived, I could hear Layli, “…She’s like a
sister to me – please, can she come back in?” The attending nurse opened the door and
beckoned me to return.
36
Two months before Marian died, I went to visit her in the hospital. I had been
staying overnight with her 1-2 days/week for the last month. After knocking on the door,
I entered the room. Realizing that I had interrupted her therapy session, I greeted her
briefly, apologized and turned around to leave. Just before I got to the door, she asked me
to stay. The psychiatrist, a new resident, was visibly concerned. Justifying her request,
Marian said, “She’s family. We do not have any secrets. I want her to stay.” This level of
intimacy with the everyday life of several women gave me unusual access to their
biomedical encounters and insight into their illness experiences.
Participant Observation
Participant observation was conducted on monthly support group meetings
sponsored by the LFA from 2000-2002. A total of 28 meetings across 6 support groups
were attended in Cobb, Fayette, Fulton, Gwinnett, and Henry counties. Attendance at the
meeting varied from 2-5 (Henry, Fayette, Gwinnett and Henry) to 6-15 (Cobb and Fulton).
The meetings were ethnically mixed with more whites in attendance in all counties except
Fulton. The Henry county support group and one support group in Fulton county folded
after 3 and 6 meetings respectively. The Fayette county group started meeting in May 2001,
6 months before the end of the study period. I attended approximately 34% of the support
group meetings held during the study period (28 out of 82).
Table 1.2 – Number of Support Group Meetings Attended, 2001–2002
Cobb
6
Fayette
1
Fulton
11
Gwinnett
9
Henry
1
Total
28
37
All support groups were facilitated by patients. Two groups were led by
experienced counselors (e.g. professional therapist, pastor’s wife) and one was led by two
patients who attended support group training sponsored by the LFA. The support group
format was universal: welcome, announcements (upcoming educational or fundraising
events sponsored by the LFA or other like-minded organizations), introductions and
health updates (resulting in mutual sharing of advice and insights), presentation (i.e.
health or allied health provider, lawyer (re: insurance & disability), etc.), question and
answer session, refreshments. One of the ground rules set by LFA was that patients could
not discuss specific doctors or engage in “doctor-bashing.” Comments about the struggles
they faced in getting care or specific frustrations with a doctor were required to be shared
in a general way without mention of names. The support group leaders did the best they
could to enforce this rule – but it was thorny at times given the challenges to the doctorpatient relationship posed by the invisible and chronic nature of lupus. Observational data
were recorded in field notes and reviewed following the support group meeting. Notes
were recorded about who was present, their current health status and issues or concerns.
Notes were taken on the presentation and comments/reflections on the talk as well as
participant reaction to the presenter were noted. Notes were also written after the meeting
about informal encounters occurring after the group session (i.e. during refreshments, in
the bathroom, parking lot, etc.).
My presence at the support group meetings was less noticed over time. Since I
was not able to share any personal experiences about lupus, during the round-robin
introductions/health updates, I would reintroduce myself to the group (as a student
researcher interested in learning more about lupus and talking with women about their
38
illness experiences) so that new attendees would know who I was. I made a point of not
speaking during the convened meeting unless someone asked me a direct question or
invited me into a discussion. I made this decision early in my research since I wished to
observe the natural flow of the discussion among those present. By doing this, I hoped to
avoid being characterized as a local “expert” on lupus or a person to defer to when there
were disagreements about the etiology, epidemiology, pathology, diagnosis, or treatment
of lupus. Since I considered myself a novice on all these subjects, I felt comfortable
acknowledging my ignorance publicly. After one or two meetings questions or glances
directed at me waned.
Usually I was approached about my research during refreshments. I discussed it
openly hoping that some of the women might agree to be interviewed. I was also repeatedly
asked whether I could help them find a better rheumatologist or sub-specialist (i.e.
nephrologist, neurologist, etc.). I routinely suggested that they contact the LFA office for a
referral list. As my research continued I learned which physicians were considered more
desirable than others. “Desirability” varied from woman to woman but usually included
aspects of bed-side manner, treatment approach (aggressive vs. cautious), location, hospital
affiliation and reputation. Referring women with whom I had personal relationships instead
of directly answering their questions became increasingly difficult. Where securing medical
care was urgent, life for the case study participants, when asked for advice, I gave it while
pointing out that it was based on personal observation.
Document review
Documents were reviewed including lupus support group publications
(pamphlets, manuals, newsletters, etc.), LFA materials (i.e. LFA / physicians office
39
materials such as audiovisual aids, self-help books, etc.) and medical records. Review of
the support group and other LFA materials was done to gain insight into the information
provided about coping with SLE; the degree to which depression and depressive
symptoms were discussed; degree to which women were encouraged to participate in
support groups; whether information about lupus was presented in a technical or lay
format; and whether the issue of delayed diagnosis was discussed and to what extent.
Medical records were reviewed for the two case study participants. After her
death, Marian’s family gave me all of her personal records including her x-rays, her
medical notes (i.e. lists for her doctors: including her symptoms and questions that she
wanted to ask) , tax returns (which contained her medical bills and pharmacy receipts),
health insurance bills, books, notes and a personal journal (in which she only wrote two
brief passages). The two filing cabinets sat unopened for 6 months in my garage. I could
not muster the nerve to go through them. When I finally did, I could not believe what
they contained. It was a compilation of every written document concerning her lupus
since she was diagnosed. I am in great debt to her for her meticulous record keeping.
Without it, I could never have analyzed her blood counts and treatment regimen. Until I
examined these documents, I did not fully appreciate how her life had been swallowed up
by the business of managing her illness. There were reams of paper covered with notes to
insurance companies, laboratories, doctors and pharmacists, sometimes sent multiple
times to different people in the same office – always looking for resolution until the next
crisis arose. Managing her illness looked in some ways as bad the lupus itself. Marian
often complained about how difficult it was to deal with office staff who did not seem to
care. But she did not have much choice – she just had to make the best of it.
40
Structured Questionnaire and Psychosocial Scales
In order to assess demographic, personal characteristic and quantitative illness
experience information, 41 women (of 42) also completed a structured questionnaire. The
structured questionnaire consisted of demographic and illness history questions as well as
psychosocial measures of coping style, social support and network, pain, life interference
due to illness, and trust in physician. It included questions about: education, income, age,
marital status, children, health insurance, disability, depression and anxiety, current
medications, illness severity, diagnosis status, length of time leading up to and since
diagnosis, lupus disease history (major flares, illness events, secondary diagnoses), and a
checklist of current and past symptoms. The psychosocial measures were: John Henryism
Active Coping Scale (JHACS); Norbeck Social Support Questionnaire (NSSQ); McGill
Pain Questionnaire (MPQ); West Haven-Yale Multidimensional Pain Inventory
(WHYMPI); and Trust in Physician Scale (TPS). The psychosocial scales were included
so that key characteristics of the study population could be described and compared to
previously published research examining chronic illness or rheumatic disease experience
and gender and ethnic differences (McLean et al. 1993). Only the JHACS was validated
specifically for use in African-American populations. The TPS was validated for use in
patients with rheumatic diseases (i.e. osteoarthritis, fibromyalgia and rheumatoid
arthritis) and the test population included women (77%) and some minorities (15%)
(Freburger et al. 2003). The questionnaire took between 30 to 45 minutes to complete and
was usually completed in one session. The women were asked periodically how they
were feeling and whether they felt well enough to continue. Only one woman completed
the questionnaire in two sessions.
41
JOHN HENRYISM ACTIVE COPING SCALE
The John Henryism Active Coping Scale (JHACS) is a twelve-item Likert scale
“designed to measure a behavioral propensity to cope actively (rather than passively)
with difficult psychosocial environmental stressors (James 1994). This behavioral
propensity is called John Henryism. The concept is derived from the legend of John
Henry, the steel-driving man who reputedly defeated a machine in a steel-driving contest
but then dropped dead from complete physical and mental exhaustion. The scale was
developed to test the research hypothesis that effortful, prolonged coping with difficult
psychosocial environmental stressors is one of the factors responsible for the well known
excess risk for hypertension in low SES populations, of which African Americans are a
conspicuous subgroup” (James 1996:419). Sherman James wished to explore the
relationship between the fact that lower SES populations are “routinely exposed to
chronic, unremitting psychosocial and environmental stressors (i.e. low job control,
financial difficulties, familial instability, discrimination, exposure to violence, lack of
health care resources)” and management of these stressors (Bennett 2004:565). He
posited that in order to manage these persistent stressors, some may adopt a high-effort or
“active” style of coping. Those without access to adequate education or occupational
resources to buffer its effects would experience the deleterious health outcomes of such a
coping style (Bennett 2004). Building on the work of Syme (1979), who speculated that
prolonged high-effort coping with adverse psychosocial stressors might explain the
inverse relationship between SES and hypertension, James created the scale to examine
whether high John Henryism (JH) was associated with raised blood pressure (James et al.
1992). He hypothesized that “high JH may heighten the blood pressure of those in lower
42
socioeconomic strata via the increased sympathetic nervous system arousal promoted by
frequent high-effort coping” (Bennett 2004: 565).
The John Henryism scale measures “three mutually reinforcing themes:
efficacious mental and physical vigor; a commitment to hard work; and, single-minded
determination to achieve one’s goals. Responses to each item range from ‘completely
true’ (score =5) to ‘completely false’ (score=1). Affirmative answers are suggestive of
high JH. The total JH score for each person is derived by summing the numerical values
of the responses to all twelve items. Thus, the maximum scale score is 60; the minimum
is 12” (James 1996:420).
The JHACS is relevant to this research not only because it examines disparities in
health through a critique of race and class, but also because it examines the consequences
of individual-level struggles against broad social and environmental factors (James
1996). The reliability and validity of the JHACS was tested in an urban sample of
middle-aged African Americans and white Americans (Fernander et al. 2003). The
psychometric properties of the scale were examined. The results supported the validity
and reliability of its use among both populations. In this research JH scores are used for
sample comparison purposed only. Comparisons of socioeconomic status and JH reflect a
point in time comparison only and cannot be generalized beyond the research sample.
NORBECK SOCIAL SUPPORT QUESTIONNAIRE
The Norbeck Social Support Questionnaire (NSSQ) assesses the structural,
interactional, and functional characteristics of the social network, as well as the extent of
support received and the impact of the recent loss of supportive relationships. The
instrument was designed to assess multiple components of social support by listing and
43
rating network members by on functional properties of social support (e.g. emotional and
tangible support) and network properties (e.g. stability of relationships, frequency of
contact). Questions about recent losses of supportive relationships provide additional
descriptive data which help to contextualize responses.
To fill out the instrument respondents are asked to list every significant person in
their life who provides personal support or who is important to them. Examples listed are:
spouse/partner; family members or relatives; friends; work or school associates;
neighbors; health care providers; counselor or therapist; minister/priest/rabbi; and other.
Once the list is complete, 8 questions about each network member are answered using a 5
point Likert scale (0=not at all to 4=a great deal). Some of the women decided to include
their pets on the network list. When this happened, only questions that made sense in
reference to the pet were scored (e.g. How much does this person make you feel liked or
loved?). Questions that were not applicable were left blank (e.g. If you needed to borrow
$10, or a ride to the doctor, or some other immediate help, how much could this person
usually help?).
Two health related questions were added to the instrument: “How much does this
person provide you with helpful information about your condition? How much does this
person provide helpful information to you about health services and health supplies?”.
This modification was made based on the work of Gulick (1994), who added these
questions in order to assess social support among persons with another chronic illness,
multiple sclerosis. Without modifications, the NSSQ includes only one health related
question: “If you were confined to bed for several weeks, how much could this person
help you?”
44
Scoring of the NSSQ involves summing the total score for each person in the
network. A series of subscales were created to assess specific types of social support (e.g.
functional, emotional, tangible, informational, etc.) alone and in combination with each
other. The NSSQ was developed in 1980, tested for reliability and validity (Norbeck et al.
1981) with minor modifications being made in 1983 (Norbeck et al. 1983). The 1995
version (with Gulik’s modifications) was used in this study since the format was
compatible with the Windows version of SPSS for data entry and analysis. As required, a
copy of the instrument and permission was secured from Jane Norbeck prior to its use.
MCGILL PAIN QUESTIONNAIRE
The McGill Pain Questionnaire (MPQ) is a 21-item instrument designed as a
quantitative measure of complex qualitative pain experiences. It consists of 78 adjectives
arranged into 20 groups: 10 groups measure the sensory quality of pain; 5 groups
measure the affective quality of pain; 1 group measures the evaluative quality of pain; 1
item measures the overall intensity of pain, current level and frequency of pain; and 4
groups measure miscellaneous pain (Melzack 1983). In addition to the adjective list, a
human figure is used to indicate the location of the respondent’s pain.
The MPQ was designed to capture three major classes of word descriptors used
by patients to describe the subjective pain experience: sensory-discriminative,
motivational-affective and cognitive-evaluative (Melzack 1975; McDowell and Newell
1996). Based on the work of Melzack and Torgerson (1971), it was originally used to
evaluate pain therapies but has also been used as a diagnostic aid (Melzack 1980).
Melzack and Torgerson selected 102 words from published literature and existing
questionnaires and sorted them into the 3 major classes based on Melzack’s theory of
45
pain: words related to - sensory qualities of pain (e.g. temporal, thermal), affective
qualities of pain (e.g. fear, tension), and “evaluative words that describe the subjective
overall intensity of total experience of pain” (Melzack and Torgerson 1971 as quoted in
McDowell and Newell 1996:346). Within this framework similar words were grouped
together resulting in 16 subclasses. After the class and subclass groupings were checked
by 20 reviewers, four subclasses were added totaling 20: sensory – temporal, spatial,
punctate, incisive, constrictive, traction, thermal, other pressure, dullness, misc; affective
– tension, autonomic fear, punishment, misc; evaluative – anchor words; and
supplementary – four word groups (without subclass titles). An example of an adjective
grouping in each class – subclass is: sensory – temporal (flickering, quivering, pulsing,
throbbing, beating pounding); affective – punishment (punishing, grueling, cruel, vicious,
killing); evaluative – annoying, troublesome, miserable, intense, unbearable);
supplementary – misc (spreading, radiating, penetrating, piercing) (McDowell and
Newell 1996).
Scoring the MPQ involves four methods: 1) the pain rating index (PRI) which is
obtained by adding the rank values of the words selected by the respondent in each word
grouping and for the total of the 20 subclasses; 2) the overall intensity of pain (PPI) score
(The answer to the question: Would you describe your current overall level of pain to be:
no pain, mild, discomforting, distressing, horrible, excruciating?); 3) the total number of
items checked for each subscale divided by the number of items composing the
subscales; and 4) the total score – the sum of all the subscales. Scoring for these methods
was modified in this study. As originally designed, respondents are asked to select only a
single word out of each subclass to represent their pain. Using this scoring approach, the
46
total maximum unweighted score is 20. When the MPQ was filled out by the women in
this study, they had difficulty selecting only one term in each subclass. As a result, I
allowed them to choose as many as applied from every subclass. Using this scoring
approach, the total maximum unweighted score was 78. Although this approach made it
impossible to calculate the scores as outlined above (except for the PPI), it did permit
cross group comparisons by the total number of subclasses chosen (regardless of the
number of words chosen by subclass) and the overall total number of words/descriptors
chosen.
The MPQ has been used by clinicians and researchers for over 30 years. The
different scoring methods have moderate to high correlations and the subscales are
correlated (Melzack 1983). The MPG has been used in many countries and translated into
at least 8 languages besides English (McDowell and Newell 1996). There is evidence to
support the reliability and validity of the MPQ in testing different forms of pain across
disease types (Melzack 1975, 1983). This instrument was included in order to be able to
compare the damage index scores of disease activity to perceived levels of pain assessed
by the MPQ.
WEST HAVEN-YALE MULTIDIMENSIONAL PAIN INVENTORY
The West Haven-Yale Multidimensional Pain Inventory (WHYMPI ) is 52 item
three-part inventory designed to assess the impact of pain on people’s lives (20 items),
the responses of others to the individuals communication of pain (14 items); and the
extent to which pain effects participation in daily activities (18 items). The WHYMPI
consists of 3 scales and 9 subscales/factors. The first scale (how pain affects your life)
comprises five factors: interference, support, pain severity, self-control, and negative
47
mood. The second scale (on spousal support) has three subscales: punishing responses,
solicitous responses, and distracting responses. The third scale (how pain effects daily
activities) includes four subscales: household chores, outdoor work, activities away from
home, and social activities (Kerns et al. 1985; Kerns et al. 2000). The instrument was
modified for use in this study by substituting “SLE” or “SLE symptoms” (for without a
diagnosis) for “pain” in every question. This was done in order to assess the impact of
lupus generally on the women’s lives rather than only one aspect of the experience (pain).
To fill out the instrument the respondent reads each question and then selects the most
appropriate answer from a 7 point Likert scale (0-6). The corresponding value of the
Likert scale varies for each question depending on it content. For example: “In general,
how much do/does you SLE/symptoms interfere with your day-to-day activities?” 0=no
interference, 6= extreme interference; “Since the time you developed SLE/symptoms,
how much has it/they changed your ability to work?” 0=no change; 6=extreme change).
The WHYMPI was further modified to include questions that were more
appropriate for women. For example, in the section concerning the impact of lupus on
daily activities, item 10 “Work on the car” was deleted and “Work on a hobby (which
one? Please specify)” was substituted. One question was added to the “household chores”
subscale: “Pay the bills.” Three questions were added to the “social activities” subscale:
“Go to church/synagogue/mosque”, “Participate in civic activities”, “Watch TV or a
movie video”. One question was left out of the daily activities section: “Work in the
garden”. These changes resulted in a 55 item scale. The total number of items for the
subscale “household chores” was 6 (instead of 5); “outdoor work” was 3 (instead of 5);
and “social activities” was 7 (instead of 4).
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The WHYMPI is scored by summing the item responses for the overall score and
subscale scores. It is considered to have good reliability with internal consistency
between .70 to .90 and test-retest (two week) correlations of .62 to .86. The WHYMPI
has good construct validity and has been used in research on chronic pain and to evaluate
interventions aimed at reducing pain (Kerns et al. 2000).
TRUST IN PHYSICIAN SCALE
The Trust in Physician Scale (TPS) is an 11 item scale designed to measure
patients’ interpersonal trust in their physicians. Anderson and Dedrick (1990) created the
measure based on the notion that trust is a fundamental element of the patient-physician
relationship. “Trust is defined as a person’s belief that the physician’s words and actions
are credible, and can be relied upon, and that the physician is working in the patient’s
best interests” (Anderson and Dedrick 2000: 858). The scale assumes that too much or
too little trust in the patient-physician relationship can be problematic. The TPS can be
used to understand patient’s desires for control and to explain patient’s behaviors related
to the management of illness (Anderson and Dedrick 2000). The instrument consists of
11 statements which the respondent rates based on 5 point Likert scale (1=Strongly
Agree; 5=Strongly Disagree). The TPS assesses three domains of patient trust in
physician: dependability, confidence, and confidentiality of information. The scale
includes positively and negatively worded questions. For example: “If my doctor tells me
something is so, then it must be” and “I doubt that my doctor really cares about me.”
The TPS is scored by reverse scoring negative items and summing all items for
the total score, the higher the score the higher the trust between patient and physician.
The TPS has good to excellent reliability with internal consistency alphas from .85-.90.
49
Construct validity is good with correlations to related subscales from the Health Locus of
Control Scale and the Multidimensional Desire for Control Scale (Anderson and Dedrick
2000). The TPS has also been validated for use in patients with rheumatic diseases such
as osteoarthritis, fibromyalgia and rheumatoid arthritis (Freburger et al. 2003). Results
showed high internal consistency with Cronbach’s alpha = .87.
In this study, the women were asked first to fill out the TPS for the physician they
considered their primary care giver (regardless of specialty). The specialty of the primary
physician was recorded. Some women had trouble deciding which of their physicians was
primary. This is not surprising given the multiple systems effected by lupus and the
subspecialization of biomedicine. Most women named their rheumatologist first followed
by family practitioners, nephrologists and neurologists. For women who either had more
than one physician or could not decide who their primary physician was, they were given
the option to fill out the TPS for all other physicians.
DISEASE DAMAGE: SYSTEMIC LUPUS INTERNATIONAL COLLABORATING CLINICS/
AMERICAN COLLEGE OF RHEUMATOLOGY SLE DAMAGE INDEX
There are two ways to measure the disease impact of lupus: disease activity and
disease damage. Disease activity measures assess current signs and symptoms. Disease
damage measures assess the cumulative impact of active disease. Due to the cross
sectional (one point in time) study design and the periodic increase in lupus signs and
symptoms due to flares, a damage index was chosen in order to assess the impact of both
active and inactive disease. Patients with more frequent and repeated disease activity
have a higher increase in disease damage scores (Gladman et al. 1996). Disease damage
is an important indicator of morbidity since disease activity, especially when it effects
one particular organ (i.e. kidneys), can lead to organ dysfunction (i.e. kidney failure) and
50
increased morbidity (Gladman et al. 1996). For patients who live more than 10 years
post-diagnosis, the cause of death is rarely related to active SLE. From a clinical
perspective, assessing disease damage is important not only as a means of preventing
death, but also of reducing the morbidity resulting from disease activity and its treatment
(Gladman et al. 1996).
The Systemic Lupus International Collaborating Clinics/American College of
Rheumatology Damage Index (SLICC/ACR Damage Index) measures the impact of
lupus on 12 different organ systems and/or conditions. Its aim is to count items of
damage in individual systems as well as to assess total damage. The systems/conditions
indexed include: ocular, neuropsychiatric, renal, pulmonary, cardiovascular, peripheral
vascular, gastrointestinal, musculoskeletal, skin, premature gonadal failure, diabetes, and
malignancy. For the purpose of the index, damage is defined as nonreversible change, not
related to active inflammation. It measures damage occurring in lupus patients regardless
of its cause. Damage may be a consequence of previous disease activity which leads to
organ failure (e.g. renal failure or neurocognitive abnormality), or from medications (e.g.
avascular necrosis or diabetes) (Gladman et al. 1996). In order to differentiate between
active inflammation and damage, a feature must be present for at least 6 months to be
scored. Repeat episodes must occur at least 6 months apart to score >1. The same lesion
cannot be scored twice. Scoring of the SLICC/ACR Damage Index is based on the
patient’s medical record.
In this study, the index was filled out based on self reported disease and illness
(with the exception of the two case study participants whose medical records were
available). This information was compiled based on illness experiences described in the
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interview and 2 questions in the structured questionnaire. The first question asked the
women to list all the disease diagnoses ever received including the diagnosis date. The
second question asked the women to fill out a chart of signs and symptoms. The chart
documents current and past signs and symptoms effecting the skin and hair, muscle and
joint, organ/organ functioning, headaches, fatigue, depression, memory loss, and sleep
problems. The SLICC/ACR Damage Index scores were based on triangulated selfreported data from the structured questionnaire and the indepth interview. As a result the
scores may not be accurate with regard to what could have been abstracted from the
women’s medical records.
Content, face, criterion and discriminant validity were assessed as acceptable by
the index creators (Gladman et al. 1997). Earlier evaluations also demonstrated its ability
to adequately index damage (Gorgos and Petri 1993). The SLICC/ACR Damage Index
can be used as an outcome measure for clinical trials. In this study, it is used to describe
the disease damage state of the research participants.
DISEASE ACTIVITY: COMBINED MEASURES
Assessing disease activity and accumulated damage helps to characterize both
the current and long-term impact of lupus. Current disease activity was assessed using
self reported information from the structured questionnaire and the indepth interview.
The structured questionnaire included questions about current lupus activity (e.g. What is
the activity level of your lupus/ lupus symptoms at the present moment?), previous week
activity (e.g. On the average, how severe has your lupus been during the last week? Did
you have a flare/increase in symptoms last week? Would you say that the way you felt or
behaved this last week was: Choose one: an unusually good week, pretty typical week, an
52
unusually bad/difficult week); and self-comparison lupus activity (e.g. How are you
feeling today? Choose one: better than I have felt in a long time, pretty much the same as
always; much worse than I have felt in a long time). Additional insights about current
levels of lupus activity from the in depth interview were noted when appropriate and used
to clarify answers to the structured questionnaire questions. These disease activity
measures and the damage index help to characterize the overall health status of the
women in this study.
Data Analysis
In order to furnish a "snapshot" of lupus experience across of wide range of
diagnosis stages (ranging from pre-diagnosis to post-diagnosis) both qualitative and
quantitative data were collected. Two complementary approaches to data analyses were
employed.
Qualitative data were analyzed using Atlas-TI, a qualitative software program
developed to create, manage, and analyze qualitative databases. Data from respondents in
the form of transcripts of open-ended interviews were analyzed using Atlas-TI. Data were
analyzed using codes, comments and memos entered directly into Atlas-TI. Content
analysis was conducted using queries based on codes, words, word clusters, and phrases.
Coding the data was part of an iterative process that involved reading a series of
transcripts (5-7) to develop codes and then rereading the coded text to refine code
meaning and application. This process was repeated until the most essential codes were
clearly defined and applied throughout all coded transcripts. I used the query tool to
compare coded text and when inconsistencies were found edited those segments in the
corresponding transcript. As I became more familiar with the content of the transcripts,
53
my ability to accurately apply codes increased. By the time I completed coding, I had
about 20 essential codes which were consistently applied across the data. I decided to
keep the nascent codes listed in the code list throughout this process so that I could
elevate them to essential code status (more important) as it became clear that that needed
to happen. In addition to these codes, I also indexed text related to the timing and
sequence of the diagnostic process. These codes functioned as data management codes
which could direct me to larger segments corresponding to first symptoms, first doctors
visit, first diagnosis (may not be lupus), diagnostic event, and diagnosis reaction. By
dividing the text in this manner, it was easier to compare the women’s experiences across
time.
The best way to describe the way I approached analyzing the qualitative data was
through a process called “telescoping” (Bauer and Gaskell 2000). I constantly moved
back and forth between individual and collective experience, noting similarities and
differences as they arose. Over time, I was able to construct a heuristic model for each
area I examined (diagnostic odyssey, pain, support groups, and treatment). This process
was challenging at times because it required constant grounding in the data. Due to the
volume of data (almost 500 pages), I could not become complacent about remembering
where I had read something hoping that I might find it later. The memo function in AtlasTI was very helpful as was the code “quotable” which I used frequently to note
particularly articulate and/or potentially important sections of text. The process of
telescoping was further complicated by the potentially important variables of ethnicity,
time since diagnosis and support group participation. Understanding the differences in
experience based on these variables required parsing the data and examining query output
54
separately. This was accomplished by relying on the ID number assigned to each woman.
The number included references to all three variables. For example, an African-American
woman diagnosed for five years who was a support group participant would be Y5A. The
query output was saved in Word and then examined based on these variables. Although
Atlas-TI offers the network function to divide and examine subcategories of text, I
preferred to read print copy versions of text instead on working on screen in Atlas-TI.
Similarities and differences across these variables were noted manually for future
reference.
Only open-ended interviews were coded using Atlas-TI. The notes I took at
support group meetings were coded by hand using highlighters and sticky notes. The
shear volume of the data (12 full steno pads, 960 pages) made retyping the notes too
cumbersome and time consuming. Although I was not able to capture the exact words of
participants at every moment, I made an effort to record verbatim whenever possible. In
order to accommodate the rapid flow of conversation, over the 2 years I attended
meetings I developed a homespun short-hand. This gave me some freedom to lift my
head, listen and have eye-contact with the women instead of having my nose buried in
my steno pad all the time. It was also inappropriate during deep emotional sharing to take
notes. When this occurred, I waited until the moment passed and then rapidly jotted down
my recollections of the conversation as faithfully as I could. The quotes included from
these notes are reported in as exact language as possible given my note taking approach.
Quantitative data was entered into MS Access and MS Excel. Data entry, editing
and management were conducted on an ongoing basis throughout the data collection
period. As data were collected it was entered into the appropriate software package,
55
checked for accuracy and stored for future analysis. Once data entry was complete all
quantitative data (including the psychosocial scales, demographic and disease damage
scores) were analyzed using SPSS. Frequencies, cross tabulations, graphs, and other
descriptive statistics were used. Significance tests used were Fisher’s Exact and chisquare when applicable. Psychosocial scales were entered, weighted and analyzed
according to the requirements of the scale as specified in the published literature. Since
this is a cross-sectional research study, only the presence of an association between
variables can be suggested. No hypothesis testing was conducted.
As is evident in the following chapters, whenever possible, qualitative and
quantitative data were used in combination to interpret illness experience and draw
conclusions. Structured questionnaire topics and psychosocial scales were selected to
compliment and supplement issues discussed in the open-ended interview. They were a
more structured and time-limited means to gather this information. Given that many of
the women were symptomatic during the interview, this data provided me with valuable
insight into topics that could not be covered in-depth due to time constraints. The
sampling strategy precluded statistical analyses more sophisticated than descriptive
analyses. However, these results were helpful in better understanding the variation within
the sample across key variables such as ethnicity, time since diagnosis and support group
participation.
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Fieldwork Challenges
“When conducting fieldwork at home, the ‘outer-reaches’ of the sample bleed into daily reality.”
—Rayna Rapp 1999, page 16
In recent decades the stigma against domestic research in anthropology has
lessened. Although the allure of fieldwork in distant and exotic locales remains strong,
increasing numbers of anthropologists are choosing to conduct domestic research. As a
result, each new project and publication improves its reputation. Current discourse
focuses less on the pros and cons of international vs. domestic research and more on
defining research boundaries regardless of where it is conducted. Some of this discussion
is fueled by concerns over the ethical conduct of research. However, most echoes
discourse that is as old as the discipline itself: the boundaries between self and other
(emic verses etic). By defining the “other” we define “self.” By understanding the “other”
we understand “self.” We assign boundaries that separate self from other but in spite of
these limits, understanding occurs and common humanity is found. In the course of this
research, I came to realize that anthropology is not about studying “others” but about
creating relationships, relationships that transcend boundaries of self and other and
provide glimpses into a shared human experience. When boundaries are transcended,
assigned roles and identities are obscured – we forget who we “are”: woman, student,
employee, researcher. It is in these provisionally detached moments, that we can step
outside ourselves long enough to grasp a thread of common understanding.
Over the course of my research, I routinely questioned my positionality as a
researcher. Ultimately, the boundaries between self and other gave way to a complicated
set of human interactions which continued to evolve over the fieldwork period. This
57
section presents the challenges I faced conducting fieldwork at “home” while occupying
multiple roles, each with implications for the conduct and writing of research. As Rapp
points out, “field-based research in anthropology is broader than the process of ‘writing
ethnography.’ The daily problems and choices with which the field worker is confronted
have practical consequences for the people whose lives she touches, as well as for her
own data collection and interpretation” (1999:17).
Making the Familiar Unfamiliar
As I began my research, I struggled with the prevailing notion that domestic
fieldwork provides fewer prospects for learning because its context is familiar. This
critique is frequently leveled against domestic research. It represents the flip-side of the
view which extols the ubiquitous opportunities international fieldwork provides simply
because the researcher is located in strange circumstances and surroundings. The fact that
the researcher may take for granted what should be questioned is a powerful critique of
domestic fieldwork. In the international context, the researcher embodies the role of the
ingénue. As a naïve outsider, she is given the latitude to ask simple yet penetrating
questions which may not be tolerated if posed by a native (who should know better).
Initially, I tried to distance myself from what I thought was “the familiar.” I
engaged in an introspective exercise of questioning what I knew in an effort to identify
what I might be taking for granted. I quickly realized the futility of this endeavor. The
more I questioned my instincts, the less grounded I felt, and the less I learned. I realized
that the distinction made between domestic and international fieldwork is artificial. The
environmental context does not determine opportunities for research. The location of
research, whether domestic or international, is irrelevant. What matters is the situational
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context, the topic of research and the positionality of the researcher. I came to realize that
lupus and its effect on women was the unfamiliar territory. As someone who did not have
lupus, I had the latitude to listen, learn and ask questions as an outsider. My positionality,
however, was not trouble-free. I understood the false distinction about context early on,
but as the research continued I began to question my positionality.
This was prompted by three questions that were asked repeatedly of me over the
course of my research. They were asked sometimes in isolation but most often
consecutively: Why are you studying lupus? Do you have it? Do you know someone
(have a family member) who does? I thought the questions were straight forward, so I
gave straight forward answers. I answered the first question by talking about how my
interest started out as an academic one. I would describe how I took an anthropology
course called “Women’s Health” and that I became interested in learning about the
impact of disease and illness on women. My answer to the second question was, “No.”
My answer to the third question changed over time. I started to notice that my
answers did not satisfy. They were honest and rational but did not seem to address the
underlying purpose of the questions. The fact that I did not have lupus or know anyone
with lupus (someone who inspired me to do the research) underscored the impersonal
nature of my answer. The questions were being asked to clarify my personal interest in
lupus. Motivation rooted in an academic pursuit was judged to be insufficient. I couldn’t
change the reason I gave for doing the research; nor could I say, “I have lupus” or “my
mother has lupus” or “my sister has lupus.” After about a year, I realized I had friends
with lupus. The first time I answered the third question with “I have friends with lupus,” I
knew I had an understandable reason for my research. It justified my interest because it
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was grounded in human connectedness and commitment to others. Academic pursuits
have respectability and status but are hollow when compared to lived experience.
Role Play: Researcher vs. Friend
The connectedness I began to feel towards all the women and especially those
who considered me a “friend” began to influence the decisions I made in my personal life
and as a researcher. After completing my graduate coursework, I returned to a job at the
Centers for Disease Control and Prevention (CDC). I continued to work full time while I
I conducted my research. I began to see the multiple roles I occupied as overlapping and
complimentary. I was a student but I was also a professional. I was a volunteer but also
an employee. I was a researcher but also a friend. The roles I occupied throughout the
research process were simultaneous and multiple. I handled them as best I could but I
struggled nonetheless. I frequently felt torn. When I was working I felt guilty about not
doing my research. When I was writing, I felt guilty about not accomplishing enough (to
warrant being out of the office). When I was volunteering, I felt I should be doing my
research. Since I lived and worked in the place where I conducted my research, I was
drawn into social and civic commitments that were lupus related but outside the bounds
of my “research.” I began to volunteer at the local chapter of the LFA, Inc. After three
years of staffing booths at Lupus Awareness Day and other events and traveling to
Washington D.C. (twice) with the Georgia delegation to advocate for legislation, I was
asked to serve on the Board of Directors for the Georgia Chapter. Two years later I
became vice-president and then president of the board. Aside from always having been
someone who gets involved in many activities, my involvement with the LFA gave me
the means to actively give back to the women who had helped me so much. Although this
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work was tangential to my research, I continued to learn a great deal about the disease
and its effects on women. I also was able to see first-hand the struggles and triumphs of a
small non-profit organization. My intimate involvement with the foundation also gave me
entree into situations I would never have been permitted to attend had it not been in their
service. I was able to get to know rheumatologists and other professionals serving women
with lupus. These connections were helpful especially when friends asked me for
referrals to doctors, disability lawyers or other social service providers. Initially I felt
conflicted about my dual role as researcher and friend, but as the friendships deepened, I
set aside the researcher pretext in favor of a more subjective and personal form of
interaction. Ultimately, it was the only option that felt right given the serious
circumstances that drew us together and the intensity of our interactions. The progression
of the relationships from researcher/subject to friend/friend occurred gradually over time.
Domestic Research and Disengaging from the Field
Part of the challenge of living and conducting research in Atlanta was that I was
never really able to “disengage” from the field. The field became my life. The friendships
I developed with the women continued to evolve even after “data collection” was
complete. My involvement with the LFA became quite unexpectedly almost a full-time
job when a vote of no-confidence in the Board chair, elevated me to the chairmanship
after only two months as vice-chair. This combined with the resignation of the Executive
Director some months later, left the organization in financial dire straits. With the
assistance of the national organization, we were able to find, interview and hire a topnotch replacement. This process took almost a year and required a great deal of time and
effort to deal with all the fallout from the organizational changes. In the mean time, I was
61
working fulltime and trying to write my dissertation. Since all my friends at the LFA and
colleagues at the CDC knew I was working on my dissertation, their interest in my
progress was keenly felt. I cannot recall one day that passed when I was not asked about
when I would finish or how it was going. The inquiries, although innocent, mounted in
me the desire to move out of state and take refuge from the onslaught. I felt guilty and
frustrated about not being able to finish faster and in a manner a little less under the
microscope.
Although writing the dissertation in an environment where women in the study
could ask me about my progress was at times a challenge, more often it offered benefits.
I had many opportunities over the years to vet nascent thoughts and gauge reactions to
my ideas. I am especially indebted to those women and physicians who listened to my
half-baked views with patience and understanding. I believe those conversations kept me
grounded as I conducted the analysis.
Probably the most challenging aspect of my “non-disengagement” was that it
meant that I knew I would be held accountable for what I wrote. This is of course the
case for all researchers. However, I felt it most intensely because the women in my study,
because of their education and background, would likely read what I had written. I found
this intimidating. Not because they weren’t entitled to disagree with me but because I
wanted to be sure to get it right. I wanted to increase the likelihood that what I had to say
would ring true. The responsibility I took on to listen and represent their experiences as
fairly and honestly was at times difficult. Although I know fellow anthropologists have
struggled with the same issue, conducting research in the United States amplifies these
challenges due to the knowledge, expertise and proximity of the researched.
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Humanistic Inquiry – Informant vs. Friend
Ablon (1977) compares the role of the anthropologist in her own culture to that of
a therapist who may be the only person who listens to the informant in a sympathetic and
nonjudgmental manner. The difference between therapy and friendship was often blurred
in my dealings with the women. For most, our interactions were limited to the research
encounter. I interviewed them and they told me about their experiences. For others, our
initial contact grew into something more substantial. There was a connection established
at first meeting, for whatever reason, that created a foundation that we could both build
upon. Building the relationship usually depended on more frequent contact with each
other. This occurred most often as a result of seeing each other at support group meetings
or other LFA functions during subsequent months. Although I anticipated my fieldwork
would take about 2 years – it actually took twice as long. During this time I kept in
contact over the phone, through happenstance meetings, and through exchange of holiday
cards. The level of my interactions deepened after the deaths of four women in different
areas of Atlanta who were very well known among support group participants. The first
two deaths were unexpected. I became acquainted with Kitty and Marian during my first
trip to the capitol for National Advocacy Day. Concern over the circumstances of their
deaths and the questions raised about lupus treatment, drew the community of lupus
patients and friends closer together. The uncertainty of that time lent itself to
simultaneous introspection and sharing. Individually and collectively, we tried to make
sense of it all. This was done through ongoing conversations and discussions which cut
across experience and knowledge. Under those conditions, the distinction between
researcher and friend was irrelevant.
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As mentioned previously, I felt torn about my reasons for conducting this
research. This manifested itself in a desire to be able to say, “I have lupus.” I felt the need
to legitimate my interest by grounding it in shared experience. I wanted to be able to say,
“I know what you mean” and mean it from a position of empathy rather than sympathy. I
felt an intense need to belong. I wanted to be a part of the group rather than separate from
the group. I wanted to be an insider rather than an outsider. I wondered whether a nonaffected individual would be told the same things. I felt drawn into the lives of the
women because the intimacy of the interview mirrored the “getting to know you” phase
of friendship and the poignancy of their experiences drew from me feelings of sympathy
and concern that transcended the researcher/informant relationship. I felt constrained
because I couldn’t reciprocate with similar personal experiences. Was I a researcher or a
friend?
All of my concerns were swept away when I realized that my positionality as
“researcher” was not a mutually exclusive category. The more I inhabited the
“researcher” role the more I marginalized myself. In spite of the fact that I intellectually
understood the utility of remaining an “outsider,” the intensity of the bonds developing
with some of the women called into question the value of this approach. It wasn’t until I
was personally affected and shared in the loss of friends that this difficulty was
overcome. Regardless of my role, I did not question the legitimacy of their experiences.
The deaths of Kitty, Marian, Anisa, and Jessie affected me greatly. I felt their absence
individually and collectively. They opened up their lives and shared their struggles with
me. They welcomed me into their community and through it I was able to find solace. I
64
had become an outsider/insider. I had become a member of the community because I had
friends with lupus.
Ethical Challenges
The other issue that concerned me greatly was the fact that I had three women in
my study who were all given chlorambucil (Leukeran) in very high doses by the same
rheumatologist. Let’s call him Dr. X. Two of them died as a result of chemotherapy
induced leukemia which caused bone marrow failure. The third, a physician herself,
realized what was happening and stopped seeing Dr. X. Although not driven into
complete bone marrow failure, she received treatments of immunoglobulin to stay alive.
Partially because of my friendships with the women and partially because I thought some
of Dr. X’s treatment regimens were dangerous, I had to make some tough ethical choices.
I encountered a number of women who were patients of Dr. X and who spoke very highly
of him. Dr. X had a reputation for listening to patients and a bedside manner that was
very personable. He also had a reputation for “being aggressive” in his treatment
strategies which was considered by many to be a good thing.
Early in my research I traveled to Washington D.C. with the Georgia chapter
delegation to attend National Advocacy day sponsored by the national office of the LFA.
During a bus ride to an event, I overheard a couple of women joking about needing
separate suitcases to transport all their medications. In the course of that conversation,
another woman told me that her husband (a physician) mentioned to his colleagues that
he couldn’t believe how much medication she was being prescribed. In response, one of
the physicians quipped, “she must be seeing Dr. X.” Years later, I attended a meeting of
the Medical Advisory Board of the LFA, Georgia Chapter. By that time Kitty had died
65
(the first chlorambucil case), Melanie had stopped treatment (the second case), and
Marian (the third case) was about to get a bone marrow transplant which everyone hoped
would save her life. These circumstances prompted the executive director, Penny, to read
a statement from Marian detailing what she believed led up to her current predicament.
When Penny read the sentence encouraging doctors to be careful not to over-prescribe
chemotherapy medications – some of the physicians exchanged glances. Although I can
only guess about the meaning of the glance, the rheumatologists who looked at each other
were affiliated with Emory where Marian was undergoing the transplant procedure. Dr.
X’s reputation for aggressive lupus treatment was also known outside Atlanta. After
seeking advice from my brother (primary care physician in Seattle) about Marian’s
situation, a rheumatologist colleague mentioned Dr. X’s name after hearing about the
case.
Dr. X’s reputation for aggressive lupus treatment was a selling point for many
patients. Interested in beating the disease, many flocked to him for treatment. I became
concerned when I heard women at support group meetings encouraging friends to go see
Dr. X. Since chemotherapy is used primarily in cases of lupus involving severe organ
involvement and Dr. X followed standard of care procedures, I checked my concern for
patients with only musculoskeletal involvement. Although most treatment regimens have
side effects, I resolved not to say anything unless I knew the woman had major organ
involvement. When this happened, I would encourage her to get a second opinion before
agreeing to an unfamiliar chemotherapy regimen. Since my concerns about Dr. X were
based only on my non-expert opinion pieced together from my interviews with the
women, I exercised caution when confronted with these situations. I wanted to protect the
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women but I also didn’t want to malign the reputation of a highly regarded
rheumatologist either. As my research continued, I became more and more skeptical
about the practices of Dr. X and more and more fearful about the potential that existed for
further harm. Once Marian died, it was widely and openly acknowledged, at least within
the LFA community, that it was as a direct result of the treatment she had received from
Dr. X. When I learned that some of Dr. X’s patients were looking for new
rheumatologists, as a result, I was very pleased indeed. Before her death, Marian looked
into a malpractice suit and hired a law firm to review her case. She died before the review
was complete – and her family chose not to pursue it after her death. As a friend to many
of the women in this study, I can and could not keep this confidence from them. I believe
I would have done greater harm than good had I been silent on the issue.
Illness Narratives and Support Group Participation
The women interviewed for this study were drawn from a convenience sample out
of support group participants, an informational training class on lupus sponsored by the
LFA and personal referrals. Only nine women out of forty-two did not participate in
support groups. As a result, many of the narratives I collected reflect the language and
popular conceptions prominent at support group meetings. As will be discussed later,
support group participants become part of a meaning making process which is at once
individual and collective, introspective and public. As a result, the illness narratives I
collected from the women about their “diagnostic odyssey” touch on many themes
previously rehearsed in support group meetings. By acknowledging this fact, there are
some who may feel that the narratives somehow do not represent the experience of lupus
patients in general. This may be true, however, most women regardless of support group
67
participation, engage in a process of self-reflection and outward meaning making in order
to make sense of their illness predicament. There is no reason to suspect that the themes
that are salient for support group participants would be different for non-participants. The
data suggests that regardless of support group participation, women encountered the same
challenges. What may have differed was the way the women articulated and interpreted
these experiences. Support group participants had more practice telling their stories. They
also had more practice listening to others and reflecting upon common experience.
Support group participants engaged in a process of learning which produced knowledge
about self and other. This process created cultural models which were publicly rehearsed
and privately internalized. Thus support group participants may have adapted their illness
narratives to fit these models and may have been more adept at describing their
experiences in a way that strikes at salient cultural issues. The extent to which this
difference is a reality can be explored in future research.
68
Chapter 2: Description of Study Population
Introduction
This chapter presents descriptive information about the study population from the
structured questionnaire which was filled out by each participant at the conclusion of the
open ended interview. One African-American woman did not complete the questionnaire,
so the total sample for some tables is 41 (22 White and 19 African-American). Data
comparisons are presented but due to the small sample size caution must be used when
interpreting results. The data are presented in tables stratified primarily by three
variables: ethnicity, diagnosis timing (pre-diagnosis vs. years since diagnosis), and
support group participation. A summary of differences by topic is presented at the
beginning of each section with supportive tables following. The chapter conclusion
summarizes the major findings across all sections.
The structured questionnaire consisted of demographic and illness history
questions as well as psychosocial scales measuring coping style, social support and
network, pain, illness interference with daily life, and trust in physician. It also included
questions about: education, income, age, marital status, children, health insurance,
disability, depression and anxiety, current medications, illness severity, diagnosis status,
length of time leading up to and since diagnosis, lupus disease history (major flares,
illness events, secondary diagnoses), and a checklist of current and past symptoms. The
psychosocial measures were: John Henryism Active Coping Scale (JHACS); Norbeck
Social Support Questionnaire (NSSQ); McGill Pain Questionnaire (MPQ); West HavenYale Multidimensional Pain Inventory (WHYMPI); and Trust in Physician Scale (TPS).1
1
See Chapter 1 (Methods) for a complete description of the psychosocial instruments.
69
Demographic Characteristics
Age
At the time of the survey, nearly 75% of the women were 40 years old or older
(Table 2.1). Overall, African-American women were slightly younger with 37% less than
40 years old verses 18% for white women. More white women were 40 to 49 years old
than African-American women, 50% and 26% respectively.
Education
The women were highly educated. Approximately 60% had undergraduate
degrees and 25% of these women had completed graduate or professional school (Table
2.1). Two-fifths of the sample of African-American and white women had high school
and/or some vocational training. African-American women were slightly higher educated
than white women with 32% vs. 19% having graduate or professional degrees,
respectively.
Income & Disability Income (Social Security Income through Disability)
The majority of the women were well situated financially (Table 2.1). About onethird had household incomes greater than $90,000 and 40% had household incomes from
$60,000 to $119,999. Almost 20% had incomes of $30,000 to $59,999. One quarter of the
women earned less than $30,000 per year making them eligible for WIC with a family
size of four. A slightly higher percentage of African-American than white women were
WIC eligible (35% vs. 18%) or earned $30,000 to $59,999 (24% vs. 14%).
70
Table 2.1 – Demographic and Other Characteristics of Participants by Ethnicity1 (N = 41)
Characteristic
African-American
n (%, n=19)
White
n (%, n=22)
Total
n (%)
Age at the time of survey (years)
<40 (youngest 29)
40-49
≥50 (oldest 63)
7 (37)
5 (26)
7 (37)
4 (18)
11 (50)
7 (32)
11 (27)
16 (39)
14 (34)
Highest education level completed (N=40)2
High school
Vocational school
Undergraduate school
Graduate or Professional School
7 (37)
1 ( 5)
5 (26)
6 (32)
5 (24)
3 (14)
9 (43)
4 (19)
12 (30)
4 (10)
14 (35)
10 (25)
Annual income ($) (N=39)2
<30,000 (WIC eligible3)
30,000-59,999
60,000-89,999
90,000-119,999
≥120,000
6 (35)
4 (24)
4 (24)
3 (18)
0 ( 0)
4 (18)
3 (14)
5 (23)
4 (18)
6 (27)
10 (26)
7 (18)
9 (23)
7 (18)
6 (15)
Disability
Yes
No
11 (58)
8 (42)
4 (18)
18 (82)
15 (36)
26 (64)
Relationship status
Single
Married
Divorced
Widowed
4 (21)
12 (63)
3 (16)
0 ( 0)
3 (14)
15 (68)
3 (14)
1 ( 4)
7 (17)
27 (66)
6 (15)
1 ( 2)
11 (58)
8 (42)
14 (64)
8 (36)
26 (63)
16 (39)
8 (47)
1 ( 6)
3 (18)
12 (71)
15 (79)
1 ( 5)
1 ( 5)
17 (89)
23 (64)
2 (6)
4 (11)
29 (81)
1 ( 6)
2 (12)
1 ( 6)
1 ( 6)
0 ( 0)
0 ( 0)
2 (11)
0 ( 0)
16 (80)
4 (20)
17 (77)
5 (23)
Children
Yes
No
Health Insurance (N=36)2
Private insurance (employer – spouse)
Private insurance (employer – self)
Private insurance (self-insured)
Subtotal privately insured
Medicaid
Medicare
Out of pocket
Other
Support Group Participation
Yes
No
1
Fisher’s Exact Test showed no significant difference for any variable by ethnicity
Missing data; African-American n=17, White n=19
3
WIC eligible in Georgia for a family of four
2
1(
2(
3(
1(
3)
6)
8)
3)
33 (79)
9 (21)
71
Slightly more than one-third of the women received disability income from the
Social Security Administration (Table 2.1). A much higher percentage of these women
were African-American than white, 58% and 18%, respectively. This suggests that the
African-American women are sicker than the white women or at least they have been
diagnosed long enough to have been found eligible for SSI.
Relationship Status & Children
Two thirds of the women were married and one third were single, divorced or
widowed (Table 2.1). There were no notable differences in relationship status between
African-American and white women. Approximately 63% of the women had children. A
virtually equal number of African-American and white women had children, 58% and
64% respectively (Table 2.1).
Health Insurance
The majority of the women (80%) were privately insured with a slightly lower
percentage of African-American than white women, 71% and 89%, respectively (Table
2.1). A much higher percentage of white (79%) than African-American (47%) women
were insured through their spouse’s employer. Two women were on Medicare (12%), one
was on Medicaid (6%) and all of these women were African-American. Two white
women (11%) and one African-American woman (6%) were uninsured.
72
Support Group Participation
Almost 80% of the women participated in support group meetings (Table 2.1). An
almost equal proportion of African-American (80%) and white women (77%) attended
support group meetings.
Illness Characteristics
Diagnosis History
At the time of enrollment, all but 2 women (one African American, one white)
were diagnosed with lupus (Table 2.2). African-American women were diagnosed at
younger ages than white women. Approximately 72% of African-American women were
diagnosed between the ages of 20 and 39 whereas 62% of white women were diagnosed
between the ages 40 and 59. The largest differences were in the 20-29 age group with
24% more African-American women being diagnosed at that age; and the 40-49 age
group with 26% more white women being diagnosed at that age. Only one white woman
was diagnosed as a teenager. Approximately 52% of the women were diagnosed within
four years of symptom onset. African-American women were diagnosed slightly earlier
than white women with 66% having been diagnosed within four years and 88%
diagnosed within 10 years. Approximately 38% of white women were diagnosed within
four years and 76% within ten years. Almost 25% of the women were not diagnosed for
more than 10 years. Slightly more white women (24%) than African-American women
(11%) were diagnosed later than 10 years.
Women with limited organ involvement or symptoms which are primarily
musculoskeletal can remain symptomatic for years without being properly diagnosed.
73
Table 2.2 – Diagnosis History of Participants by Ethnicity (N=42)
African-American
Characteristic
n (%)
White
n (%)
Total
n (%)
Diagnosed with lupus
Yes
No
19 (95)
1 ( 5)
21 (95)
1 ( 5)
40 (95)
2 ( 5)
Age at the time of diagnosis (years) (N=39)1,2
10-19
20-29
30-39
40-49
50-59
0 ( 0)
6 (33)
7 (39)
4 (22)
1 ( 6)
1 ( 5)
2 ( 9)
5 (24)
10 (48)
3 (14)
1 ( 3)
8 (20)
12 (31)
14 (36)
4 (10)
Time to diagnosis (years) (N=39)1,2,3
<1
1-3
4-6
7-9
10+
6 (33)
6 (33)
2 (11)
2 (11)
2 (11)
4 (19)
4 (19)
4 (19)
4 (19)
5 (24)
10 (26)
10 (26)
6 (15)
4 (10)
9 (23)
Time since diagnosis (years)3
0
1-5
6-10
>10
1 ( 5)
8 (40)
2 (10)
9 (45)
1 ( 4)
7 (32)
9 (41)
5 (23)
2 ( 5)
15 (36)
11 (26)
14 (33)
Diagnosed with other illnesses
Yes
No
20 (100)
0 ( 0)
22 (100)
0 ( 0)
42 (100)
0 ( 0)
Current illness signs and symptoms (number) (N=41)2,3
1-5
3 (16)
6-10
8 (42)
11-15
8 (42)
16-20
0 ( 0)
3 (14)
5 (23)
12 (54)
2 ( 9)
6 (15)
13 (32)
20 (49)
2 ( 5)
Past illness signs and symptoms (number) (N=41)2,3
1-5
6-10
11-15
16-20
21+
1 ( 5)
4 (18)
4 (18)
12 (54)
1 ( 5)
3 ( 7)
9 (22)
10 (24)
18 (44)
1 ( 2)
2 (10)
5 (26)
6 (32)
6 (32)
0 ( 0)
1
Excludes women not diagnosed (n=2)
Missing data (n=1)
3
Total percent ≠ 100 due to rounding error
2
Patients with discoid (skin) lesions, organ involvement or symptoms which are severe
and multiple tend to get diagnosed earlier (Ozbek et al. 2003). At the time of enrollment
about 36% of the women had been diagnosed for up to five years with virtually equal
74
numbers of African-American and white women in this group (Table 2.2). AfricanAmerican women had been diagnosed for slightly longer periods of time than white
women. About 45% of African-American and 23% of white women had been diagnosed
for longer than 10 years. However more white (41%) than African-American women
(10%) had been diagnosed for 6-10 years. All women were diagnosed with other illnesses
other than lupus. A slight majority (54%) of women had current illness signs and
symptoms numbering between 11 and 20. White women reported more signs/symptoms
than African-American women. About 58% of African-American and 37% white women
reported 1 to 10 symptoms. About 63% of white and 42% of African-American women
reported 11 to 20 symptoms. Two white women (9%) in this category reported 16 to 20
signs/symptoms. Almost half the women (49%) reported experiencing at least 11 and
even more than 21 symptoms in the past. Slightly more white (77%) than AfricanAmerican (64%) women were in this group. Slightly more African-American (36%) than
white women (23%) experienced between 1 to 10 signs/symptoms in the past. Based on a
comparison of current and past illness signs and symptoms, African-American women
reported experiencing fewer symptoms currently than white women.
The primary diagnoses and medical conditions of the women were
musculoskeletal in nature. Approximately 90% had muscle swelling and soreness, 68%
had osteoarthritis and 32% had fibromyalgia (Table 2.3). The second highest category
involved lymph/endocrine diagnoses. Two-thirds (66%) of the women had
lymphadenopathy (inflammation of lymph glands). Almost half (49%) were diagnosed
with clinical depression. A large number of women were diagnosed with autoimmune
disorders which frequently co-occur with lupus. The two most common were Raynaud’s
75
Table 2.3 – Other Diagnoses and Medical Conditions of Participants (N=41)
Diagnosis
Musculoskeletal
Muscle swelling/soreness
Osteoarthritis
Fibromyalgia
Rheumatoid arthritis
Avascular necrosis1
Hip replacement
Osteoporosis
Osteomyelitis
Lymph/Endocrine
Lymphadenopathy (inflammation of lymph glands)
Diabetes2
Hypothyroidism
Psychiatric
Depression
Anxiety
Cardiovascular
Hypertension
Anemia
Aplastic anemia3 (bone marrow failure)
Valve problems
Pericarditis (inflammation of lining of heart)
Heart attack
Gastrointestinal
Acid reflux4
Gall bladder removal
Peritonitis (inflammation of abdominal lining)
Splenomegaly (inflammation of spleen)
Liver inflammation
Autoimmune hepatitis
Hepatitis C
Autoimmune (other)
Raynaud’s syndrome
Sjögren’s syndrome
Ocular
Retinal damage5
Cataract5
Skin
Ulcers (mouth or other)
Hair loss
Scarring
Neuropsychiatric
Cognitive impairment (self reported)
Central nervous system (CNS) lupus
Cranial or peripheral neuropathy
Cerebrovascular accident (stroke)
Seizures
Pulmonary
Pleurisy (inflammation of lung)
Pulmonary hypertension
n
%
37
28
13
6
5
5
5
1
90
68
32
15
12
12
12
2
27
5
3
66
12
7
20
2
49
5
19
4
3
4
3
1
46
10
7
10
7
2
18
3
3
3
2
1
1
44
7
7
7
5
2
2
17
17
41
41
11
2
41
5
15
9
6
37
22
15
14
7
5
2
1
34
17
12
5
2
13
1
32
2
76
Table 2.3 – Continued
Diagnosis
n
%
7
1
1
17
2
2
2
1
5
2
2
5
41
36
32
4
3
3
1
1
100
88
78
10
7
7
2
2
Renal
Nephritis (kidney involvement)
Kidney failure
Kidney transplant
Peripheral Vascular
Venous thrombosis
Tissue loss (fingers or other)
Reproductive
Premature gonadal failure3
Other Conditions/Symptoms
Fatigue
Sleep problems
Headache
Migraines
Shingles
Restless leg syndrome
Cancer (thyroid)
Chronic fatigue syndrome
1
Medication induced (steroid: prednisone)
Other or medication induced (steroid: prednisone)
3
Medication induced (cytotoxic drugs: chemotherapy)
4
Likely medication induced (due to type and number of pharmaceuticals taken)
5
Other or medication induced (anti-inflammatory drug: plaquenil)
2
syndrome2 (41%) and Sjögren’s syndrome3 (41%). Thyroid problems which can be
autoimmune in origin also frequently co-occur with lupus. In this sample, only 7%
reported being diagnosed with hypothyroidism. It is important to note, however, that 22%
of the women were taking medications to regulate thyroid hormones (Table 2.5). This
discrepancy is most likely due to reporting bias (the checklist of medical symptoms listed
only hypothyroidism and not other examples of thyroid problems). Approximately 46%
were diagnosed with hypertension. The primary discoid manifestations of lupus were
2
Raynaud’s phenomenon is characterized by discoloration (blue, white, or red) of the hands or feet (fingers
or toes) and sometimes ears or nose. It is brought on by cold temperatures and is due to an underlying
disease or anatomical abnormality. It is commonly associated with lupus and other autoimmune diseases
(Anderson et al. 1988; Wallace 1995).
3
Sjögren’s syndrome is characterized by dry eyes, dry mouth and arthritis and may accompany other
autoimmune diseases (rheumatoid arthritis, SLE, scleroderma, or polymyositis) or be diagnosed by itself. It
usually occurs in middle aged or older women and its etiology is unknown (Anderson et al. 1988; Wallace
1995).
77
ulcers (37%) and hair loss (22%). Overall 34% reported neurological symptoms such as
cognitive impairment. About 17% of the women were previously diagnosed with central
nervous system involvement. Approximately 32% reported lung involvement with
previous diagnoses of pleurisy (inflammation of the lung). Of the 17% with renal
(kidney) involvement, one woman was currently in kidney failure (and on dialysis) and
one had had a kidney transplant.
Although the diagnosis categories and medical conditions listed in Table 2.3 are
those typically related to lupus, it is sometimes difficult to determine the causal
relationship between lupus and secondary diagnoses. Some pre-existing conditions may
be exacerbated by the autoimmune activity of lupus. It is also possible, although more
research is needed in this area, that certain predispositions to illness may be triggered and
aggravated by lupus. It is clear, however, that some medical conditions are precipitated
by treatment. These conditions include: avascular necrosis (12%), diabetes (12%) and
cardiovascular disease (not listed) due to prednisone; retinal damage (41%) and cataracts
(5%) due to plaquenil; aplastic anemia (7%) and premature gonadal failure (5%) due to
cytotoxic drugs (chemotherapy); and acid reflux (44%) due to the type and number of
medications taken (Table 2.3).
Medications
In addition to current diagnoses, another indicator of illness severity is the type
and number of medications currently taken. Almost 40% of the women were taking up to
five and about 46% were taking between 6 and 15 pharmaceutical medications per day
78
Table 2.4 – Medications Currently Taken by Participants (N = 41)
Characteristic
n
%
Pharmaceutical medications
1-5
6-10
11-15
16-20
>20
16
12
7
2
4
39
29
17
5
10
Vitamins and dietary supplements
None
1-2
3-4
5+
12
14
6
9
29
34
15
22
(Table 2.4). Two (5%) women used between 16 and 20 per day and 4 (10%) women used
more than 20 pharmaceuticals per day. Almost three quarters (71%) of the women took
vitamins or dietary supplements on a daily basis. Of these women, 34% took up to two,
15% between 3 and 4, and 22% five or more vitamins or dietary supplements daily. There
were no differences in vitamin consumption by ethnicity. However, twice as many
African-Americans (32%) than whites (14%) consumed dietary supplements (like food
juices and herbal drinks). For example, NONI juice (from the Hawaiian fruit) was
mentioned more often by African-American women.
The most common class of medications taken by the women were pain relievers.
This group consists of both prescription and over-the-counter anti-inflammatories and
pain suppressants. About 88% of the women were taking some type of pain reliever
(Table 2.5). All the white women but only three quarters of the African-American women
took pain relievers. About half the women (53% African-American and 45% white) took
pain relievers regularly. The most common non-prescription pain relievers were over-thecounter (OTC) non-steroidal anti-inflammatories (NSAIDs) like Advil, Motrin, aspirin,
etc. (39%). About 17% of the women took prescription NSAIDs with COX 2 inhibitors
79
Table 2.5 – Selected Medications Currently Taken by Ethnicity (N = 41)
Characteristic
African-American
n (%, n=19)
White
n (%, n=22)
Total
n (%)
14 (74)
9 (47)
17 (77)
15 (68)
31 (76)
24 (59)
8 (42)
11 (50)
19 (46)
5 (26)
13 (59)
18 (44)
9 (47)
2 (11)
2 (11)
1 ( 5)
14 (74)
7 (32)
5 (23)
7 (32)
3 (14)
22 (100)1
16 (39)
7 (17)
9 (22)
4 (10)
36 (88)
6 (31)
3 (16)
9 (47)
7 (37)
3 (16)
9 (41)
2 ( 9)
11 (50)
5 (23)
9 (41)
15 (37)
5 (12)
20 (49)
12 (29)
12 (29)
0 ( 0)
2 (11)
9 (41)
8 (36)
9 (22)
10 (24)
0)
5)
5)
0)
8 (36)
2 ( 9)
10 (45)
7 (32)
8 (20)
3 ( 7)
11 (27)
7 (17)
3 (16)
1 ( 5)
1 ( 5)
0 ( 0)
0 ( 0)
5 (26)
2 ( 9)
3 (14)
3 (14)
1 ( 4)
1 ( 4)
10 (45)
5 (12)
4 (10)
4 (10)
1 ( 2)
1 ( 2)
15 (36)
13 (68)
6 (32)
16 (73)
3 (14)
29 (71)
9 (22)
Pharmaceutical
Steroid (Prednisone, Medrol, etc.)
Antirheumatic (anti-malarial)
(Arava, Atabrine, Plaquenil, etc)
Antihypertensive
(Norvasc, Cozaar, Procardia, etc.)
Antacid (Prevacid, Nexium, etc)
Pain reliever
NSAID (Advil, Motrin, aspirin, etc.)
NSAID-COX2 (Celebrex, Vioxx)
Narcotic (Oxycontin, Vicodin, etc.)
Non-narcotic other (Tylenol)
TOTAL
Antidepressant2
Depression
Sedative purposes (sleep-aid)
TOTAL
Diuretic (Lasix, Metolazone)
Hormone replacement therapy
(Cinestin, Estrace, Provera etc.)
Thyroid (Synthroid)
Antihistamine
(Allegra, Benadryl, Zyrtec, etc.)
Anxiolytic3
Sedative purposes (sleep-aid)
Restless leg syndrome
TOTAL
Antiemetic (Phenergan, Reglan, etc.)
Immunosuppressant
Imuran (Azathioprine)
Cytoxan (Cyclophosphamide)
Methotrexate (MTX)
CellCept (Mycophenolate mofetil)
Leukeran (Chlorambucil)
TOTAL
0(
1(
1(
0(
Alternative (OTC)
Vitamin or mineral supplement
Dietary supplement
(food, juice, herbal drink)
1
Elavil, Wellbutrin, Celexa, Sinequan, Effexor xr, Pamelor, Paxil, Prozac, Zoloft
3
Klonopin, Ativan, Doral, Xanax
2
80
(like Celebrex and Vioxx4). Slightly more white (23%) than African-American (11%)
women took prescription NSAIDs. There were two subgroups of pain suppressant
medications: non-narcotic (OTC) and narcotic (prescription). Approximately 32% of the
women took pain suppressant medication. A higher percentage of white (32%) than
African-American (11%) women took narcotic medications such as Oxycontin and
Vicodin. It is important to note that most of the women taking narcotic medications did
so on an as needed to deal with symptom flares rather than o daily basis.
The two most common prescription medications taken by the women were
prednisone and plaquenil. At the time of enrollment, three quarters were taking
prednisone and almost 60% were taking plaquenil (Table 2.5). A slightly higher
percentage of white (68%) than African-American (47%) women were taking plaquenil.
Only 37% of the women were taking antidepressant medications in spite of the fact that
49% had been diagnosed with depression. About 10% fewer African-American women
were taking antidepressants than white women. Although diagnosed with depression, five
women reported taking antidepressants for sedative purposes rather than for depression. It
is possible that due to the stigma associated with depression, physicians encouraged
antidepressant use for sedative purposes. One women made a point of telling me that
although she had been diagnosed with depression and was taking antidepressants, she
agreed to do it only because her doctor convinced her that it would help her sleep better
at night. The prescription of antidepressants for sedative purposes is unusual given the
widely accepted use of anxiolytic (antianxiety) medication for this purpose. Overall
anxiolytic drugs were taken by 27% of the women. However, this average was made up
of a much higher percentage of white (45%) than African-American (5%) women. None
4
Two years after data collection was complete the FDA recalled Celebrex and Vioxx from the market.
81
of the women reported taking anxiolytic medication for panic attacks or other anxiety
disorders, all reported anxiolytic use for either sedative purposes or for the treatment of
restless leg syndrome (RRLS). About 36% of the white women took anxiolytics for
sedative purposes (no African-American women). Two white women (9%) and one
African-American woman (5%) reported anxiolytic use for RRLS.
Approximately 36% of the women were taking immunosuppressant medication
(Table 2.5). Immunosuppressant use differed by ethnicity with twice the number of white
(45%) verses African-American (26%) women taking them. This difference may be due
to the fact that although kidney involvement for white and African-American woman was
similar, more white women had central nervous system (CNS) involvement or neuropsychiatric lupus (NP-SLE). The treatment of choice for certain classes of kidney
involvement and demonstrable CNS involvement (MRI with brain lesions) is
chemotherapy treatment with immunosuppressant medications. The use of antiemetic
medications mirrors the use of immunosuppressants with white women accounting for
100% of their use. This difference may indicate a lack of nausea among AfricanAmerican women due to differing immunosuppressant treatment regimens & dosages
with nausea as a known side effect.
All women diagnosed with hypertension (46%) were taking some type of
antihypertensive (Table 2.5). A higher percentage of white women than AfricanAmerican women were taking antacids (59% vs. 26%); hormone replacement therapy
(41% vs. 16%); thyroid medication (41% vs. 0%); and antihistamines (36% vs. 11%),
respectively. Slightly more African-American (37%) than white (23%) women took
82
diuretics. This is in keeping with the slightly higher number of African-American women
with kidney involvement.
Illness Severity and Disease Damage
Illness severity and disease damage were measured through self assessed and selfreported means, respectively. Illness severity was measured through a series of questions
which asked for subjective assessments of the impact of current illness signs and
symptoms on the individual. The questions asked about how the women were feeling
with regard to their lupus symptoms either “today” or “during the last week.” Disease
damage was estimated based on the self-reported medical history including secondary
diagnoses and conditions. This information was used to assess disease damage based on
the Systemic Lupus Erythematosus Collaborating Clinics/American College of
Rheumatology (SLICC/ACR) Damage Index. Normally this instrument is based on
abstracted medical records (Gladman et al. 1996, 1997). Since medical records were not
available self-reported medical history was used as a proxy measure. Although
potentially inaccurate in some respects (due to recall bias or lack of knowledge about
certain medical diagnoses), self-reported medical history was potentially reliable due to
three things. First, the complicated nature of lupus forced most women to become adept
at conversing with health care professionals using biomedical terminology for medical
diagnoses, symptoms and conditions. This may have improved recall. Second, the
tendency of lupus to produce similar signs and symptoms as well as to attack the same
organs, may have facilitated reporting of familiar and repeated diagnoses which occurred
over time. Finally, the majority of the women attended support group meetings which
83
further enhanced their understanding of illness experience based on what differentiated
their experience from others. This knowledge may have increased their understanding
and therefore their memory of their medical diagnoses.
Two additional steps were taken to increase the accuracy of the estimated
SLICC/ACR Damage Index scores. First, self-reported medical history was compared to
current medications as a check on diagnosis history. The reporting inconsistencies did not
effect estimated damage index scores because most of them concerned medical
conditions which were unrelated to the score. For example, some women did not report
being diagnosed with high blood pressure but were taking medication for it. Although the
SLICC/ACR Damage Index score assesses cardiovascular damage, chronic high blood
pressure does not change the overall score. Second, medical conditions brought up during
the in-depth interview which were not previously reported were added to the medical
history to increase the accuracy of the damage index scores.
At the time of the survey, most women said that during the last week they felt or
behaved “pretty typical” (51%) (Table 2.6). Slightly more African-American (58%) than
white (45%) women felt this way. About 40% more white than African-American women
felt that the last week was “usually bad.” This was consistent with the tendency for white
women to report a higher number of current signs and symptoms (see Table 2.4). About
60% of the women reported a flare or increase in symptoms during the last week with no
notable differences by ethnicity. When asked to rank the severity of their symptoms
“during the last week” on a scale from 0 to 6 (with 0=not severe at all; 6=extremely
severe), almost half (46%) the women ranked their symptoms midway through the range
at 3 and 4. The other half ranked their symptoms as “0” or not severe at all (17%), in the
84
Table 2.6 – Current Lupus Status: Illness Severity (Self-Assessed) and Disease Damage (Self-Reported
SLICC/ACR1 Damage Index) by Ethnicity (N = 41)
African-American
White
Total
Question
n (%, n=19)
n (%, n=22)
n (%)
Illness Severity – Self-Assessed
During the Last Week
“Would you say that the way you felt or behaved this last week was:”2
Unusually good
4 (21)
3 (14)
Pretty typical
11 (58)
10 (45)
Unusually bad
4 (21)
9 (41)
7 (17)
21 (51)
13 (32)
“Did you have a flare/increase in symptoms last week?” 3
Yes
11 (58)
No
8 (42)
24 (59)
17 (41)
13 (59)
9 (41)
“On the average, how severe has your lupus/ lupus symptoms been during the last week?”
(0=not severe at all; 6=extremely severe)2
0
4 (21)
3 (14)
7 (17)
1-2
5 (26)
3 (14)
8 (20)
3-4
8 (42)
11 (50)
19 (46)
5-6
2 (11)
5 (23)
7 (17)
Today or Currently
“How are you feeling today?”2
Better than I’ve felt in a long time
Pretty much the same as always
Much worse than I’ve felt in a long time
5 (26)
11 (58)
3 (16)
4 (18)
13 (59)
5 (23)
9 (22)
24 (59)
8 (19)
“What is the current level of your lupus/ lupus symptoms at the present moment?” 2,4
(0=remission; 6=very intense)
0
5 (26)
1 ( 4)
1-2
7 (37)
6 (27)
3-4
6 (32)
8 (36)
5-6
1 ( 5)
7 (32)
6 (15)
13 (32)
14 (34)
8 (19)
“How much suffering do you experience because of your lupus/lupus symptoms?”
(0=no suffering; 6=extreme suffering)2
0
0 ( 0)
0 ( 0)
1-2
7 (37)
5 (23)
3-4
7 (37)
9 (41)
5-6
5 (26)
8 (36)
0 ( 0)
12 (29)
16 (39)
13 (32)
Disease Damage - Self-Reported
SLICC/ACR Damage5 Index Score2
0
(no damage)
1-2
3-4
5+
(severe damage)
1
5 (26)
8 (42)
3 (16)
3 (16)
7 (32)
10 (45)
2 ( 9)
3 (14)
12 (29)
18 (44)
5 (12)
6 (15)
The Systemic Lupus Erythematosus Collaborating Clinics/American College of Rheumatology (SLICC/ACR) Damage Index
Unable to run Chi-Square due to cell count less than 5
3
Chi-Square Tests showed no significant difference by ethnicity
4
5
Damage (nonreversible change, not related to active inflammation) occurring since onset of lupus, ascertained by clinical assessment
(in this case inferred from woman’s narratives, self-reported diagnoses, and symptom/disease checklist) of illness and present for at
least 6 months.
2
85
lower range as “1 and 2” (20%), and in the upper range as “5 and 6” or extremely severe
(17%). It is interesting to note that an almost equal number of African-American (68%)
and white women (64%) chose the 1 to 4 range. However, African-American women
tended to report lower symptom severity than white women. About 47% of AfricanAmerican women verses 28% of white women reported current symptom severity
ranging from 0-2. About 20% more white (73%) than African-American (53%) women
reported symptom severity from 3 to 6.
On the day of the survey, approximately 60% of the women felt “pretty much the
same as always” (Table 2.6). About equal percentages felt “better than I have felt in a
long time (22%) and “much worse than I have felt in a long time” (19%). When asked to
rank the severity of their symptoms “at the present moment” on a scale from 0 to 6 (with
0=remission; 6=very intense), two-thirds (66%) of the women ranked their symptoms
between 1 and 4, representing virtually equal percentages of African-American (69%)
and white (63%) women. Three differences by ethnicity are worth noting: 1) about one
quarter (26%) of the African-American women and only 1 (4%) white woman considered
themselves in remission (response=0); 2) about one third (32%) of the white women and
only 1 (5%) African-American woman ranked their current symptoms as 5 and 6 (very
intense); and 3) almost 30% more white (68%) than African-American (37%) women
reported current levels of symptoms ranging from 3 to 6. In summary, illness severity
during the last week and currently was higher for white than African-American women.
These illness experiences are consistent with the number of current symptoms reported
by the women (with white women reporting higher numbers than African-American
women) (Table 2.4).
86
In spite of these differences, no women reported that they did not “suffer” from
their lupus symptoms. When asked to rank “how much suffering do you experience from
your lupus symptoms?” on a scale from 0 to 6 (with 0=no suffering and 6=extreme
suffering), only slight differences were evident between the women with: 29% reporting
1 and 2; 39% at 3 and 4; and 32% at 5 and 6. A slightly higher percentage of AfricanAmerican (37%) than white (23%) women reported suffering scores of 1 and 2 (Table
2.6). A slightly higher percentage of white (36%) than African-American (26%) women
reported suffering scores of 5 and 6. These scores reflect the women’s reports of the
number and severity of lupus symptoms currently and during the last week. These
findings seem to suggest that in spite of differences by ethnicity, African-American and
white women report similar reactions to lupus symptoms. The more symptoms
experienced, the more likely it is for these symptoms to be considered severe. Although
sample size prevents conclusive testing of this association, at least for this sample of
women, differences in perceived severity of symptoms appears related more to symptom
number than to ethnicity.
Overall disease damage based on an estimated SLICC/ACR Damage Index score
ranged from 0 (no damage) to more than 5 (severe damage). Approximately equal
percentages of African-American (26%) and white (32%) women had no disease damage
(Table 2.6). About 45% of the women had damage scores of 1 and 2. Just over half of the
women (56%) had damage scores between 1 and 4. Equal numbers of women (15%) had
severe disease damage scores greater than 5. There were no notable disease damage
differences by ethnicity. Although some of the women were severely ill, the majority had
damage scores between 1and 4 indicating illness experiences on par with other women
87
who have been diagnosed for more than 5 years. As mentioned earlier, more AfricanAmerican than white women had been diagnosed for more than 10 years (Table 2.4).
Since estimated SLICC/ACR damage scores were virtually the same by ethnicity, this
may indicate the white women were sicker at the time of diagnosis. It is also possible that
the African-American women, since they are further out from their diagnosis, have more
experience living with symptom cycles and the effects of permanent organ damage. As a
result they report fewer symptoms and perceive their illness severity to be less than white
women.
Depression
Almost 60% of the women believed that they were depressed but only 41%
reported being diagnosed with clinical depression (Table 2.7). African-American women
(68%) were 20% more likely to be diagnosed with depression than white women (50%).
Approximately 70% of the women had been diagnosed for three or more years. Only
30% had been diagnosed for less than 3 years. Slightly more African-American (42%)
than white (27%) women had been diagnosed between 3 to 10 years; and slightly more
white (46%) than African-American (25%) women had been diagnosed for 11 or more
years. Even though more African-American had been diagnosed with clinical depression,
only about 70% were currently taking medication for depression. About 83% of white
women were taking medication for depression. There were no significant differences in
depression by ethnicity.
88
Table 2.7 – Self-Assessed Depression, Self-Reported Clinical Diagnosis of Depression and Current
Medications for Depression by Ethnicity1 (N=41)
African-American
White
Total
Question
n (%, n=19)
n (%, n=22)
n (%)
Self-Assessed
“Do you think you are depressed?”
Yes
No
8 (42)
11 (58)
9 (41)
13 (59)
17 (41)
24 (59)
Self-Reported
Clinical Depression
“Have you been diagnosed with clinical depression?”
Yes
13 (68)
No
6 (32)
11 (50)
11 (50)
24 (59)
17 (41)
4 (33)
5 (42)
3 (25)
3 (27)
3 (27)
5 (46)
7 (30)
8 (35)
8 (35)
9 (47)
10 (53)
11 (50)
11 (50)
20 (49)
21 (51)
Number of years since diagnosed with depression2
<1 to <3
3 to 10
≥11
Current Medications
“Are you taking medication for depression?
Yes
No
1
2
Chi-Square Tests showed no significant difference for any variables by ethnicity
Unable to run Chi-Square due to cell count less than 5
Other Characteristics
The overall and subscale (if applicable) scores for the instruments below were
compared to dichotomous key characteristics and tested for significance using an
independent t-test. The key characteristics were ethnicity, support group participation,
current symptoms, depression, depression medication, and disease damage. These
characteristics were chosen either because previous research indicated that an association
existed (e.g. depression and pain) or a potential association was hypothesized to exist
between the variables.
89
Pain
The modified McGill Pain Inventory (MPI) overall score is based on a list of
adjectives which describe different types of pain organized by category (Melzack 1983).
Standard MPI scores are based on the number of categories since choosing only one word
per category is permitted. The modified score was based on the total number of words
chosen regardless of category. The modified overall MPI score was significant for only
support group participation and depression. Support group participants had significantly
higher mean pain scores than did non-participants. Research demonstrates that support
group participation may buffer the effects of chronic pain (Subramaniam et al. 1999;
Creamer et al. 2000; Haugli et al. 2001; Dysvik et al. 2004) and other chronic illness
experiences (Savelkoul and de Witte 2001; Savelkoul et al. 2001). It is unclear in the
literature whether sicker or healthier persons attend support group meetings. Some have
argued that since support group meetings require extra effort, persons who are healthier
are more likely to attend. Support group attendance probably falls along a spectrum of
ability vs. desire to attend with the healthiest and sickest at opposite ends. The healthiest
may posses the ability to attend but lack the desire to do so (due to limited illness
impact). The sickest may have the desire to attend but lack the ability to do so (due to
greater illness impact).
As previously reported, the majority (71%) of the women had permanent organ
damage as a result of lupus (Table 2.6). Just over half (56%) had estimated SLICC/ACR
scores between 1 and 4. It is interesting to note that all six women with severe organ
damage (15% of the sample), attended support groups meetings (or did so until they were
too sick to continue) (Table 2.8). Therefore, it is not surprising that the women who
90
Table 2.8 – Mean Score1 of the McGill Pain Questionnaire by Key Characteristics (N = 41)
Characteristic
Mean
S.D.
n
Ethnicity
African-American
White
14.4
13.5
12.9
9.7
19
22
Support group participation†
Yes
No
15.5
8.4
11.9
5.2
32
9
Current symptoms (number)
1-10
≥11
12.8
14.9
9.4
12.7
19
22
Diagnosed with clinical depression†
Yes
No
15.2
12.2
12.9
8.1
24
17
Currently taking anti-depressive medication
Yes
No
14.9
13.1
13.2
9.1
20
21
SLICC/ACR Damage Index (score)
0 (or no damage)
≥1
12.2
14.7
13.0
10.5
12
29
1
This score is the total number of words chosen regardless of category. Women were permitted to check as many words per category
as were applicable. This differs from the recommended scale scoring which limits word selection to one word per category. Using this
approach, the maximum unweighted score is 78 instead of 20. See Methods chapter for justification of this change.
†
Independent t-test significant (p<.05)
attended support group meetings had higher pain scores. This finding does not discredit
the potential effectiveness of support group attendance in buffering pain; rather it reflects
the severity of the illness experience of the women who attended support group meetings.
It is important to note that the MPI assessed current pain experience (severity & level)
which may vary day to day based on the periodicity of lupus symptoms. Women
diagnosed with clinical depression had significantly higher mean pain scores. As
previously reported, the majority (59%) of women were diagnosed with depression
(Table 2.7). Evidence suggests that pain is not only associated with depression, it may
actually cause it (Ruoff 1996; Campbell et al. 2003). Given this, it is not surprising that
women diagnosed with depression reported higher levels of pain.
91
Additional pain indicators from the MPI were “pain intensity” and “pain
frequency.” When asked about “present overall pain intensity today” about 63% of the
women reported “mild or discomforting” pain (Table 2.9). Approximately 22% reported
“distressing or horrible” pain and 15% reported “no pain.” More white (32%) than
African-American (11%) women reported distressing or horrible pain intensity. Most
women (43%) reported pain intensity levels “a little bit” or “a lot” worse today than on
other days. Twice as many white (32%) than African-American (19%) women reported
pain intensity levels “about the same today as every other day.” Although no AfricanAmerican women reported pain intensity levels “a lot worse today than on other days,”
approximately equal percentages of African-American (44% ) and white (43%) women
reported pain intensity levels “a little bit” or “a lot worse” today than on other days. For
the women in mild or discomforting pain, a slightly higher percentage (42%) reported
pain intensity levels “a lot” or “a little bit” better today. About 35% reported that their
pain intensity level was “a little bit worse” today. This suggests that the women in mild
or discomforting pain probably experienced higher levels of pain on other days. For the
women in distressing or horrible pain, none reported feeling better. However, three white
women reported that this level of pain intensity was “about the same” today as every
other day. The majority (66%) of the women in distressing or horrible pain reported
feeling “a little bit” or “a lot” worse today than on other days. About 30% of the white
women in distressing or horrible pain reported feeling “a lot worse” today. This suggests
that experiencing pain intensity at these levels was unusual for white women.
The three women who reported experiencing distressing and horrible pain
everyday had estimated SLICC/ACR damage scores of 0,1, and 2. Two experienced
92
Table 2.9 – Current Pain Status: Total Responses to the McGill Pain Questionnaire by Ethnicity (N=41)
African-American
White
Total
Question
n (%, n=19)
n (%, n=22)
n (%)
Pain Intensity
“What is your present overall pain intensity today?”
No Pain
3 (16)
Mild or Discomforting
14 (74)
Distressing or Horrible
2 (11)
3 (14)
12 (55)
7 (32)
6 (15)
26 (63)
9 (22)
“Would you say your overall pain intensity is…?” (N=35) 1
A lot better today than on other days
3 (19)
A little bit better today than on other days
3 (19)
About the same today as every other day
3 (19)
A little bit worse today than on other days
7 (44)
A lot worse today than on other days
0 ( 0)
1 ( 5)
4 (21)
6 (32)
5 (26)
3 (16)
4 (11)
7 (20)
9 (26)
12 (34)
3 ( 9)
Pain Intensity Limited to Women in Mild or Discomforting Pain
“Would you say your overall pain intensity is…?” (N=26)
3 (21)
3 (21)
3 (21)
5 (36)
0 ( 0)
1 ( 8)
4 (33)
3 (25)
4 (33)
0 ( 0)
4 (15)
7 (27)
6 (23)
9 (35)
0 ( 0)
Pain Intensity Limited to Women in Distressing or Horrible Pain
“Would you say your overall pain intensity is…?” (N=9)
0 ( 0)
0 ( 0)
0 ( 0)
2 (100)
0 ( 0)
0 ( 0)
0 ( 0)
3 (43)
2 (29)
2 (29)
0 ( 0)
0 ( 0)
3 (33)
4 (44)
2 (22)
Pain Frequency
“How would you describe your overall pain level today?
(How often do you feel the pain?)”(N=35) 1
Constant
7 (44)
Periodic
6 (38)
Brief
3 (19)
13 (68)
6 (32)
0 ( 0)
20 (57)
12 (34)
3 ( 9)
“Would you say your overall pain level is…?”(N=31) 1,2
3 (19)
3 (19)
6 (38)
4 (25)
0 ( 0)
2 (13)
5 (33)
4 (27)
3 (20)
1 ( 7)
5 (16)
8 (26)
10 (32)
7 (23)
1 ( 3)
Pain Frequency Limited to Women in Constant Pain
“Would you say your overall pain level is…?”((N=17) 1,3
1 (14)
1 (14)
2 (29)
3 (43)
0 ( 0)
0 ( 0)
4 (40)
3 (30)
2 (20)
1 (10)
1 ( 6)
5 (29)
5 (29)
5 (29)
1 ( 6)
93
Question
African-American
n (%, n=19)
White
n (%, n=22)
Total
n (%)
Pain Frequency Limited to Women in Mild or Discomforting Pain
3 (21)
3 (21)
5 (36)
3 (21)
0 ( 0)
2 (20)
3 (30)
2 (20)
3 (30)
0 ( 0)
5 (21)
6 (25)
7 (29)
6 (25)
0 ( 0)
Pain Frequency Limited to Women in Distressing or Horrible Pain
0 ( 0)
0 ( 0)
1 (50)
1 (50)
0 ( 0)
0 ( 0)
2 (40)
2 (40)
0 ( 0)
1 (20)
0 ( 0)
2 (29)
3 (43)
1 (14)
1 (14)
1
Excludes those in no pain (N=6); 1 missing
4 missing responses
3 missing responses
4
2 missing responses
2
3
primarily musculoskeletal symptoms. The third was diagnosed with musculoskeletal and
organ involvement (brain, heart, gastrointestinal). She was also diagnosed with
mononeuritis multiplex with peripheral neuropathy resulting in partial paralysis (she was
unable to get up from a sitting position without assistance). The two African-American
women who reported experiencing distressing or horrible pain had estimated
SLICC/ACR scores of 0 and 1. One experienced primarily musculoskeletal and discoid
symptoms and the other experienced musculoskeletal and pulmonary symptoms
(diagnosed with sarcoidosis, she had only 50% lung function remaining). This suggests
that regardless of the SLICC/ACR damage score, the experience and perception of pain
depends on the individual and not the diagnosis or the intensity and periodicity of
symptoms.
When asked about their pain frequency (“How often do you feel the pain?”) over
half (57%) reported they were in constant pain (Table 2.9). About 34% reported
94
“periodic” and 9% “brief” pain. African-American women (44%) were less likely than
white women (68%) to characterize their pain as “constant.” Few women characterized
how often they felt pain as either “a lot better” (16%) or “a lot worse” (3%) today than on
other days. About 80% chose median categories such as “a little better”, “the same” or “a
little bit worse” today than on other days. For this subgroup there were no differences by
ethnicity. Limiting the sample to women who were in constant pain yielded median
results with 87% selecting “a little better” (29%), “the same” (29%) or “a little bit worse”
(29%) today than on other days. It is interesting to note that among the women in
constant pain, the same percent (35%) were either “a lot or a little bit” better or worse.
For women in mild or discomforting pain and distressing or horrible pain, few differences
were evident, with about one-third feeling either better, the same, or worse. There were
no notable differences by ethnicity but it is difficult to draw conclusions due to the
smallness of numbers.
Impact of Lupus on Daily Life and Significant Other Response to Illness
The West Haven-Yale Multidimensional Pain Inventory (WHYMPI) was
modified by substituting “SLE” or “SLE symptoms” (for women without a diagnosis) for
“pain” in every question (Kerns et al. 2000). This was done in order to assess the impact
of lupus generally rather than only one aspect of the experience (pain). The instrument
consists of three scales which assess: 1) the impact of lupus/lupus symptoms on people’s
lives; 2) the response of significant others when experiencing a flare in lupus symptoms;
and 3) the extent to which lupus/lupus symptoms effects participation in daily activities.
Results from the first two scales are reported here. The total score for the first scale is the
95
sum of five subscale scores: interference, support, symptom severity, self-control, and
negative mood. The total score for the second scale is the sum of three subscale scores:
punishing responses, solicitous responses, and distracting responses. Total scores are
reported in Tables 4.0 and 4.1 and subscale scores in Table 2.12. Some scales and
subscales are reversed scored. For Scale 1, higher scores index negative impacts of lupus
on daily life and suggest that living with lupus on a day-to-day basis is challenging. For
Scale 2, lower scores index less supportive responses and suggest that living with lupus
may be made more difficult by significant others. Due to the cross sectional design of the
study results from Scale 3 (lupus effect on daily activities) are not reported (since the
current levels of daily activities cannot be compared to previous levels).
Table 2.10 – Mean Total Score1 for Impact on Daily Life (Scale 1) of the Modified West Haven Yale
Multidimensional Pain Inventory by Key Characteristics (N = 41)
Characteristic
Mean
S.D.
n
Ethnicity
African-American
White
56.1
57.0
14.0
13.3
19
22
Support group participation†
Yes
No
59.5
46.0
12.0
13.7
32
9
Current symptoms (number) †
1-10
≥11
51.2
61.2
15.5
9.6
19
22
Diagnosed with clinical depression
Yes
No
59.8
52.1
10.3
16.2
24
17
Currently taking antidepressant medication†
Yes
No
60.9
52.5
10.6
14.8
20
21
0 (or no damage)
≥1
50.7
59.3
17.5
10.8
12
29
1
†
Overall Score is the sum total of the interference, support, pain severity, self control, and negative mood subscales
96
Scale One – Impact on Daily Life
A comparison of the modified WHYMPI total score by key characteristics yielded
three significant results: support group participation, current symptoms, and currently
taking antidepressant medication (Table 2.10). Support group participants had higher
total scores than non-participants. This suggests that the impact of lupus on daily life is
perceived as greater among support group participants. This is not surprising given these
women sought out support groups and presumably did so to help them deal with lupus
and its impact on their daily lives. Three of the five subscales were significant:
interference, lupus/symptom severity, and self control (Table 2.12). The interference
Table 2.11 – Mean Total Score1 for Significant Other Response to Illness (Scale 2) of the Modified West
Haven Yale Multidimensional Pain Inventory by Key Characteristics (N = 33)2
Characteristic
Mean
S.D.
n
Ethnicity
African-American
White
62.6
60.8
11.3
20.8
15
18
Support group participation
Yes
No
60.9
64.3
17.6
15.2
26
7
1-10
≥11
63.3
60.3
13.6
19.6
15
18
Yes
No
56.8
68.2
17.7
13.9
19
14
Currently taking antidepressant medication†
Yes
No
54.8
67.3
19.3
12.5
15
18
0 (or no damage)
≥1
65.3
60.0
11.9
18.7
10
23
1
Significant Other Response to Illness Score is the sum total of the punishing, solicitous and distracting subscales
Includes only women who have been in a serious long term relationship since their lupus diagnosis or lupus-like symptoms
developed
†
2
97
subscale assesses how much lupus infers with day-to-day-activities including changes in
the ability to participate or enjoy work, social/recreational and family activities. The
lupus/symptom severity subscale includes questions about symptom level, severity and
suffering. The self control subscale assesses feelings of “control over life” and the extent
to which problems can be dealt with during the last week. Support group participants
experienced higher levels of interference and lupus symptom severity but lower levels of
self control. Given that symptom severity was significantly higher among these women,
greater interference and lower levels of self control are not surprising.
Women who reported experiencing at least 11 symptoms had total scores that
were significantly higher than women with 10 or less symptoms (Table 2.10). Women
who experienced 11 or more symptoms, scored interference higher and self control lower
than women with fewer symptoms (Table 2.12). Although each case was unique, in
general the higher the number of symptoms the more severe the lupus case. Since women
with more symptoms tended to be sicker, the greater the number of symptoms, the greater
the cumulative impact these symptoms had on daily life. It is interesting to note that
higher estimated SLICC/ACR damage scores were not related to higher modified
WHYMPI overall scores. Perceived experience was a better indicator of “sickness” than
more objective means based on diagnosis history.
Women currently taking medication for depression had higher total scores than
women not taking antidepressants (Table 2.10). They also scored significantly higher on
the interference subscale (Table 2.12). Although differences in total score for the first
98
Table 2.12 – Mean Subscale Scores for Scales 1 and 2 of the Modified West Haven Yale Multidimensional
Pain Inventory by Key Characteristics† (N=41)1
Characteristic
Mean
S.D.
n
37.2
22.0
10.0
12.0
22
9
7.0
4.4
2.8
2.3
32
9
7.5
10.2
2.3
1.4
32
9
37.5
28.4
9.3
13.9
15
16
7.4
9.0
2.7
1.8
22
19
Scale 1: Impact on Daily Life
Interference (N=31) 3
Yes
No
38.5
25.9
7.6
14.1
17
14
Scale 2: Significant Other Response to Illness (N=33) 6
Distracting 7 (N=31) *
Yes
No
13.8
19.0
7.3
5.0
18
13
40.0
27.6
7.9
12.9
13
18
12.6
18.8
7.8
4.5
14
17
Interference 2 (N=31) 3
Yes
No
Lupus/Symptom Severity 4
Yes
No
Self Control 5
Yes
No
Current number of symptoms ≥11
Yes
No
Self Control
Yes
No
Currently taking antidepressant medication
Yes
No
Scale 2: Significant Other Response to Illness (N=33) 6
Distracting 7 (N=31) *
Yes
No
†
Independent t-test significant for all subscales reported (p<.05)
*Missing data
1
Except where noted
2
Higher score indicates higher interference with daily life
3
Excludes women who were never regularly employed
4
Higher score indicates higher lupus/symptom severity
5
Higher score indicates higher feelings of control
6
Excludes women not currently or never in a serious relationship
7
Higher score indicates more supportive responses
99
scale were not significant by clinically diagnosed depression, difference in the
interference subscale score were significant (Table 2.12). Research suggests that
depression may increase pain experience and decrease quality of life and coping ability
(Ho and Biskupiak 2004). Although taking antidepressants should mitigate pain, it
appears that lupus still has a significant impact on the women taking antidepressants.
Care must be taken in interpreting these results since the scores of the women were not
known prior to taking antidepressants. It is possible that these scores represent a
reduction in total score since the women started taking antidepressants.
Scale Two – Significant Other Responses to Illness
For Scale 2, the only significant difference by mean total score was for women
currently taking medication for depression. Women on antidepressants were more likely
to have partners who were less supportive of them in response to their illness experiences
(Table 2.11). It was not possible to determine the causal relationship between depression
and lack of partner support. However, research indicates that increases in support result
in decreases in depression (Vihjalmsson 1993). Caution must used when interpreting
these results since the extent of spousal support prior to taking antidepressants is not
known. It is interesting to note that women who were not diagnosed with depression
and/or not taking medication for depression reported significantly higher levels of
distracting responses from partners when experiencing a flare (Table 2.12). Distracting
responses include such behaviors as: reads to me, talks to me about something else to get
my mind off the pain, tries to involve me in some activity, encourages me to work on a
hobby, turns on the TV to get my mind off the pain). Although not reported (since these
100
results were not significant), women who were not on antidepressants scored partner
responses less often as punishing (5.7) and more often as solicitous (25.4) than women on
antidepressants (8.9 and 18.7, respectively). In general, depressed women perceived their
partners to be less supportive than other women.
Social Support and Network
The Norbeck Social Support and Network Questionnaire (NSSQ) assesses
network size and function by tallying the number of network members and by evaluating
the type and amount of support offered by each network member (Norbeck et al. 1981;
1983). The types of support assessed were informational, emotional and instrumental.
The scale was modified to include health related questions (Gulick 1994). Table 2.13
presents the results of the NSSQ by key characteristics. Of those tested, only average
functional support (which is the sum of emotional and tangible support divided by total
number of network members) was significantly different for two groups of women: those
diagnosed with depression (compared to those not diagnosed) and those taking
antidepressants (compared to those not taking antidepressants). Women diagnosed with
depression and women taking antidepressants had significantly lower levels of average
functional support than their group counterparts. This finding is consistent with the
experience of social isolation often reported by depressed individuals (Hsu at el. 1987;
Weeks et al. 1980). These results in combination with a lack of partner support (presented
earlier) may indicate that depressed women lack support not only at home but within their
wider social network. This result should be interpreted with caution, however, since
differences by the depression-related variables were not significant for mean total
101
Table 2.13 – Mean Total Subscale Scores for the Norbeck Social Support Questionnaire (NSSQ) and
Standard Deviations by Key Characteristics (N = 41)
Characteristic
Mean
S.D.
n
Total Emotional1 Support Offered by Network
Ethnicity
African-American
White
189.3
196.6
105.0
121.5
19
22
Yes
No
184.4
224.4
95.8
163.3
32
9
1-10
≥11
220.3
169.8
139.7
79.2
19
22
Yes
No
187.4
201.4
110.0
119.4
24
17
Yes
No
170.2
215.1
85.7
132.0
20
21
0 (or no damage)
≥1
241.4
184.4
160.4
88.3
12
29
Total Tangible2 Support Offered by Network
Ethnicity
African-American
White
126.2
124.0
83.2
77.7
19
22
Yes
No
121.1
139.1
72.7
103.4
32
9
1-10
≥11
140.4
111.8
91.9
65.9
19
22
Yes
No
115.6
138.4
82.8
74.5
24
17
Yes
No
104.3
144.7
69.5
84.6
20
21
0 (or no damage)
≥1
124.9
125.1
97.5
72.5
12
29
1
Emotional support is the total of the ratings made in response to four questions: 1) How much does this person make you feel liked
or loved?; 2) How much does this person make you feel respected or admired?; 3) How much can you confide in this person?; 4) How
much does this person support your actions or thoughts? Scale 0-4: Not at all, a little, moderately, quite a bit, a great deal.
2
Tangible support is the total of the ratings made in response to two questions from the Norbeck 1995 revision (available from author)
102
Characteristic
Mean
S.D.
n
Total Functional3 Support Offered by Network
Ethnicity
African-American
White
315.5
320.5
180.2
191.0
19
22
Yes
No
305.5
363.6
162.0
253.4
32
9
1-10
≥11
360.6
281.6
221.4
138.8
19
22
Yes
No
303.0
339.8
186.6
183.1
24
17
Yes
No
274.5
359.9
149.3
206.5
20
21
0 (or no damage)
≥1
339.3
309.5
245.1
156.1
12
29
Average Functional Support 4
Ethnicity
African-American
White
21.5
21.6
4.5
3.7
19
22
Yes
No
21.5
21.8
4.3
2.6
32
9
1-10
≥11
21.6
21.6
3.0
4.7
19
22
Diagnosed with clinical depression†
Yes
No
20.4
23.2
4.2
3.1
24
17
Currently taking anti-depressive medication†
Yes
No
20.0
23.1
4.3
3.0
20
21
0 (or no damage)
≥1
20.5
22.0
3.2
4.2
12
29
3
4
†
Functional support is the sum of emotional and tangible support.
Average functional support score for all network members.
103
Characteristic
Mean
S.D.
n
Total Network5 Support
Ethnicity
African-American
White
392.7
398.7
342.1
398.5
19
22
Yes
No
358.6
528.6
293.2
567.3
32
9
1-10
≥11
515.9
292.2
488.8
173.4
19
22
Yes
No
383.3
413.6
333.0
424.4
24
17
Yes
No
314.9
473.0
192.8
473.3
20
21
0 (or no damage)
≥1
515.3
346.5
546.0
261.9
12
29
Total Number of Network Members
Ethnicity
African-American
White
14.6
14.6
7.8
8.1
19
22
Yes
No
14.0
16.6
6.7
11.4
32
9
1-10
≥11
16.8
12.7
10.1
4.7
19
22
Yes
No
14.4
14.8
7.6
8.4
24
17
Yes
No
13.3
15.9
5.3
9.7
20
21
0 (or no damage)
≥1
16.3
13.9
11.4
6.0
12
29
5
Network support is the sum of the number of network members, the total sum of length of time each network member is known
(duration) and the total sum of the frequency of contact with each network member.
104
functional support. Total functional support is the sum total score of emotional and
tangible support regardless of the number of network members. Average functional
support may be significant only because there is less variability in the score when
calculated as an average (see standard deviations).
Coping Style
The John Henryism Active Coping Scale (JHACS) assesses the tendency for an
individual to actively rather than passively cope with psychosocial and environmental
stressors (James 1996). Based on a Likert scale from 1 to 5, the minimum and maximum
total scores were 12 and 60, respectively (Table 2.14). None of the mean total scores by
key characteristic were significantly different. It is interesting to note that every key
Table 2.14–Mean Total Scores of the John Henryism Active Coping Scale by Key Characteristics† (N = 41)
Characteristic
Mean
S.D.
n
Ethnicity
African-American
White
46.2
47.2
6.4
5.4
19
22
Yes
No
46.5
47.3
5.8
6.1
32
9
1-10
≥11
45.7
47.6
6.3
5.4
19
22
Yes
No
45.6
48.3
6.0
5.3
24
17
Yes
No
45.1
48.2
6.0
5.3
20
21
0 (or no damage)
≥1
45.3
47.3
4.6
6.3
12
29
†
Independent t-test were not significant for all variables reported
105
characteristic had an average score of at least 45. The median score for the entire sample
was 47. A stacked bar graph of the total number of likert values chosen by each woman
reveals a skewed distribution towards higher values such as 4 and 5 (Graph 2.1). Nearly
the same percentage of African-American (74%) and white (78%) women chose values
of 4 and 5. The graph suggests that the coping styles of the women were not normally
distributed. The JHACS was scored using the median score for the entire sample, with
active copers above and non-active copers below the median. Since the distribution of
responses was skewed towards active coping regardless of ethnicity, comparisons were
not based on the median score.
In response to the 12 item scale, about 76% of the women selected values of 4 and
5 and 24% selected values of 1-3. About 59% had total scores between 37 and 48 and
37% scored between 37 and 60. This means that about 95% of the women selected values
Graph 2.1 – Distribution of Likert Values Chosen by Each Woman for the John Henryism Active Coping
Scale (N=41)1
100%
90%
80%
70%
5
60%
4
50%
3
2
40%
1
30%
20%
10%
0%
1
3
5
7
9
11
13
15
17
19
21
Women
1
Missing data (n=1)
23
25
27
29
31
33
35
37
39
41
106
greater than 3 which placed them in the upper range of the distribution of active coping
scores. Since the higher the score, the more likely active coping occurred, the majority of
the women appeared to have been active copers. Although it is unknown which women
may have had a predisposition towards active coping prior to their diagnosis, this finding
raises questions about the potential impact chronic illness may have on coping style. In
some cases it may enhance a predisposition towards active coping whereas in others it
may occur in response to the psychosocial and environmental stressors of chronic illness.
Since almost 80% of the sample were support group participants, it is also possible that
women who attended support group meetings tended to be active copers. Future research
is needed on the relationship between coping style, support group participation and
chronic illness.
Doctor - Patient Relationship
The Trust in Physician Scale (TPS) measures patient’s interpersonal trust in their
physicians (Anderson and Dedrick 2000). The lower the score, the higher the level of
patient trust in the physician. Very low and very high scores are considered problematic.
Low scores may not prompt enough self-protective behavior (from the patient). High
score suggest so little trust that a functional doctor-patient relationship is probably not
possible. The results reported are based on the TPS for the physician considered to be the
primary care giver (regardless of specialty). If a woman was unable to determine which
provider was primary, she was permitted to fill out more than one TPS. The results
reported in Table 2.16 are for one physician per woman, either the primary care giver or
the first care giver for which a TPS was filled out. The minimum and maximum scores
possible were 11 and 55 (Table 2.15). The lowest and highest, median and average scores
107
Table 2.15 – Mean Total Score of the Trust in Physician Scale by Key Characteristics† (N = 40)1
Characteristic
Mean
S.D.
n
Ethnicity
African-American
White
24.6
24.1
7.4
8.9
18
22
Yes
No
24.9
22.4
9.0
4.2
31
9
1-10
≥11
22.7
25.6
5.4
9.8
18
22
Yes
No
23.7
25.1
7.2
9.5
23
17
Yes
No
24.7
24.0
7.7
8.7
19
21
0 (or no damage)
≥1
25.7
23.8
7.2
8.6
12
28
1
†
Missing data
Independent t-tests were not significant for all variables reported
were 12, 52, 24, 25, respectively. There were no significant differences in mean scores
by key characteristics.
A stacked bar graph of the total number of Likert values chosen by each woman
reveals a skewed distribution towards lower values such as 1 and 2 (Graph 2.2). Nearly
the same percentage of African-American (66%) and white (69%) women chose values
of 1 and 2. The graph suggests that trust levels were not normally distributed.
In response the 11 item scale, about 68% of the women selected values of 1 and 2
and 19% selected values of 4 and 5. About 38% had total scores between 11 and 21 and
48% scored between 22 and 32. This means that about 85% of the women selected valued
less than 3 which placed them in the lower range of possible TPS scores. Since the lower
the score, the higher the trust, the majority of the women had high levels of trust in their
108
Graph 2.2 – Distribution of Likert Values Chosen by Each Woman for the Trust in Physician Scale (N=40)1
100%
90%
80%
70%
5
60%
4
50%
3
2
40%
1
30%
20%
10%
0%
1
3
5
7
9
11
13
15
17
19
21
23
25
27
29
31
33
35
37
39
Women
1
Missing data (n=2)
physicians. This finding is encouraging given the extent to which patient care depends on
physician trust; and given the chronicity of lupus, overall quality of life depends on a
good working relationship with a physician. Differences by ethnicity were small, with
African-American and white women selecting 1, 36% and 38% of the time, respectively.
Since the value of 1 was chosen by the women nearly 40% of the time, it is also possible
Table 2.16 – Percent Likert Values Chosen for the Trust in Physician Scale by Ethnicity1, 2 (N=41)
African-American
White
Total
Likert Value
% (n=19)
% (n=22)
%
1
2
3
4
5
1
2
Missing data (n=1)
36
30
15
13
6
38
32
11
14
6
36
31
13
13
6
109
that some of them trust their physicians too much. This may mean that too little critical
judgment is used when negotiating management and treatment strategies in keeping with
their physiological, psychological and/or other needs.
110
Chapter 3: Diagnosing Illness, Legitimizing Suffering: Biomedicine and
the Naming of Disease
“Perfect health, like perfect beauty, is a rare thing; and so it seems, is perfect disease.”
—Peter Mere Latham (1789-1875), as quoted in Bean 1962
“Doctors, traditional or modern, are viewed as curers, not diagnosticians.”
—George Foster 1976, page 779
Introduction
There is wide agreement that the concepts of health and illness are socially
constructed. Ample literature in anthropology, psychology, sociology and the history of
medicine endorse this view. What varies from culture to culture is which manifestations
of illness are considered evidence of disease (Atkinson 1988). Biomedical diagnosis
depends in large part on objective and quantifiable signs of disease – preferably those that
can be measured in a laboratory. This poses significant problems for diseases that lack
definitive means of testing and instead rely on symptom clusters for diagnosis.
Descriptions of signs and symptoms as manifestations of illness shape the diagnostic
process. What begins as subjective experience must be externalized and articulated so
that it can be diagnosed and then treated. The subjective thus becomes objective through
a process of testing which ends with verification of pathology. In the case of lupus, the
verification process is uncertain. It is left to the discretion of the physician which
evidence is considered sufficient for diagnosis. The ambiguities inherent in the diagnostic
process pose challenges not only for physicians but also for patients. The greatest
challenges stem from two basic beliefs that: 1) disease1 is rooted in physiology and can
1
Disease refers to clinical entities with pathological underpinnings rooted in biological processes
(Kleinman 1980; Inhorn & Brown 1990)
111
be objectively measured; and 2) illness2 can be psychosomatic and cannot be objectively
measured. Cartesian mind/body dualism contributes not only to diagnosis delays but also
complicates treatment after diagnosis. This chapter explores the issues that effect women
as they search for diagnosis. It focuses on their experiences prior to diagnosis, the
diagnostic event itself, and their reactions to diagnosis. It also examines the ways women
resist diagnosis delays and attempt to take power into their own hands. The analysis
confirms previous research on the legitimizing nature of diagnosis. However, it is also
argued that the significance of the diagnostic event is short-lived as uncertainties persist
given the nature of biomedicine and the chronicity of lupus.
The Diagnostic Odyssey: Searching for Legitimation
The bodily experience of illness is personal but the construction of disease is
social. In biomedicine this social construction takes place in the clinical encounter. The
patient describes bodily symptoms and the physician reinterprets and frames that
experience. Construction is complete when diagnosis occurs. Until that time, the patient
occupies a liminal space between illness and the naming of disease. Caught between
experiential knowledge and empirical fact, the patient’s diagnostic odyssey continues,
awaiting an official pronouncement (Markovic et al. 2004). In this chapter, diagnostic
odyssey refers to what women go through to get diagnosed and the biomedical process
through which subjective experience is articulated and legitimized.3 At its core the
diagnostic odyssey involves a search for meaning in bodily suffering via biomedical
means. Like the protagonist of Homer’s poem, the diagnostic odyssey for women with
2
Illness refers to a person’s perceptions and behaviors related to poor health (Kleinman 1980; Inhorn &
Brown 1990).
3
Reid et al. (1991) refer to a similar process labeling it a “pilgrimage”.
112
lupus is often a long journey marked by many changes of fortune. These changes will be
discussed at length. In the end, diagnosis offers an explanation for previous experience
thereby legitimizing suffering. This opens doors for meaning building with family,
friends and work colleagues or based on ideological beliefs and values.
Although women with lupus face many challenges during the diagnostic odyssey,
this chapter focuses primarily on those that arise as a result of their contact with
biomedical physicians. The challenges that they face index both their bodies and their
conceptions of self (Kleinman et al. 1992). Although these issues have implications for
social interaction and coping with chronic illness, these topics will be mentioned only
briefly. This decision was made for two reasons. First, by focusing on the women’s
perception of what transpired during interactions with their physicians, a clearer picture
of their understanding of the strengths and shortcomings of biomedicine develops.
Second, due to their journey-savvy perspective, the women’s retelling of their
experiences naturally focused on all things biomedical. This included language replete
with biomedical terminology for symptom clusters, medications, and tests. Some suggest
that suffering be reconceptualized to focus “more on lived experience and less on a
vocabulary of signs and symptoms” (Low 1994: 476) (Frank 1986; Csordas 1990). As
story tellers, however, we are not practiced in the discourse of suffering. Our thinking
and our very conceptualization of illness is so bound up in biomedical vocabulary, that
our discourse predictably reflects that focus. The retelling of biomedical encounters,
especially those focused on the diagnostic process, employs language devoted to
physiological indicators of bodily suffering. This however does not mean that the women
did not articulate their suffering. On the contrary, their stories bulge with evidence. But
113
primacy is placed on relating signs and symptoms just as they would have done during
the clinical encounter.
Diagnosing Systemic Lupus Erythematosus: Criteria and Process
“If one recalls the characteristics of lupus… it seems that this illness should always be easy to recognize.
This is true in the majority of cases; but certain circumstances can make the diagnosis difficult and
perplexing. This happens, especially when lupus is in an incomplete state, or when it is altered or masked
by incidental symptoms.”
—Pierre Cazenave 1828, as quoted in Wallace and Lyon 1999
Biomedical professionals consider lupus a difficult disease to diagnose. It has
been described as “the great masquerader” since its symptoms often mimic other
diseases. A better understanding of the criteria and process for diagnosing lupus is needed
before discussing the women’s diagnostic odysseys. The following description is based
on a review by Gill et al. (2003) on the diagnosis of systemic lupus erythematosus
prepared for family practice physicians based on the American College of Rheumatology
(ACR) criteria and guidelines for standard practice. This article was chosen since the
majority of the women in this study went to see primary care physicians before being
referred to rheumatologists. The challenge faced by all physicians in diagnosing lupus is
that there is no definitive test for the disease. Inferences must be drawn from clinical
signs, symptoms and laboratory testing. A diagnosis can be established if four of eleven
criteria are met. The criteria set by the ACR (Table 3.1) have an overall sensitivity and
specificity of 96 percent. This means that when diagnosis takes place it is highly unlikely
the diagnosis is incorrect. However, a significant number of patients test negative early in
the disease process. Therefore, the ACR criteria are considered less accurate in
diagnosing patients with mild disease. Given the stringency of the combined criteria
(physical signs and lab testing), the greater the severity of disease the more likely a
114
definitive diagnosis will be given. As a result, the criteria are less accurate in diagnosing
women with mild disease which can lead to substantial temporal delays in diagnosis.
Ozbek et al. (2003) reported that patients presenting with a malar rash, inflammation of
the lining of the heart or lungs, spontaneous abortion or cognitive function were
diagnosed earlier than patients with only joint pain.
Table 3.1 – American College of Rheumatology (1982) Revised Criteria for the Classification of
Systemic Lupus Erythematosus (SLE) 1
A person can be diagnosed with SLE if four of the eleven criteria are present at any time:
Skin criteria
1.
2.
3.
4.
Butterfly or “malar” rash (lupus rash over the cheeks and nose)
Discoid rash (a thick, disk-like rash that scars, usually on sun-exposed areas)
Sun sensitivity (rash after being exposed to ultraviolet A and B light)
Oral ulcerations (recurrent sores in the mouth or nose)
Systemic criteria
5.
6.
7.
8.
Arthritis (inflammation of two peripheral joints with tenderness, swelling, or fluid
Serositis (inflammation of the lining of the lung (or pleuritis) or the heart (pericarditis)
Kidney disorder (protein in urine samples or abnormal sediment in urine seen under a microscope)
Neurologic disorder (seizures or psychosis with no other explanation)
Laboratory criteria
9. Blood abnormalities (hemolytic anemia, low white blood cell counts, low platelet counts)
10. Immunologic disorder (blood testing indicating either a positive LE cell2 preparation, anti-dsDNA3,
false-positive syphilis test4 or positive anti-Sm5)
11. Positive ANA6 blood test
1
Edited Table 1 (p.6) and footnotes from glossary in The Lupus Book: A Guide to Patients and Their Families, by Daniel J. Wallace.
New York: Oxford University Press, 1995.
2
Specific cell found in blood specimens of most lupus patients.
3
Antibody and double-stranded DNA (Anti-dsDNA): Antibodies to DNA; seen in half of those with systemic lupus and implies
serious disease.
4
False-positive serologic test for syphilis: A blood test revealing an antibody that may be found in patients with syphilis and that gives
false-positive results in 15 percent of patients with SLE; associated with the lupus anticoagulant and antiphospholipid antibodies.
5
Anti-Smith (anti-Sm) antibody; this type of antibody is found only in lupus patients.
6
Antinuclear antibodies (ANA): Proteins in the blood that react with the nuclei of cells. Seen in 96 percent of those with SLE, in 5
percent of healthy individuals, and in most patients with autoimmune diseases.
115
Although the ACR criteria list the antinuclear antibody (ANA) test as one of three
groups of laboratory tests, in practice it is the primary laboratory test used to diagnose
lupus. ACR guidelines recommend that when a patient presents with unexplained
involvement of two or more organ systems (Table 3.2), the ANA test should be run.
Table 3.2 – Clinical Features of Systemic Lupus Erythematosus (SLE)1,2
Affected
Organ Systems
Percentage
of Patients3
Signs and Symptoms
Constitutional
50 to 100
Fatigue, fever (in the absence of infection), weight loss
Skin
73
Butterfly rash, photosensitivity rash, mucous membrane
lesion, alopecia, Raynaud’s phenomenon, purpura, urticaria,
vaculitis
Musculoskeletal
62 to 67
Arthritis, anthralgia, myositis
Renal
16 to 38
Hematuria, proteinuria, cellular casts, nephritic syndrome
Hematologic
364
Anemia, thrombocytopenia, leucopenia
Reticuloendothelial
7 to 23
Lymphadenopathy, splenomegaly, hepatomegaly
Neuropsychiatric
12 to 21
Psychosis, seizures, organic brain syndrome, transverse
myelitis, cranial neuropathies, peripheral neuropathies
Gastrointestinal
18
Nausea, vomiting, abdominal pain
Cardiac
15
Pericarditis, endocarditis, myocarditis
Pulmonary
2 to 12
Pleurisy, pulmonary hypertension, pulmonary parenchymal
disease
1
Reproduction of Table 2, p. 2181, Gill et al. Diagnosis of Systemic Lupus Erythematosus. American Family Physician
2003;68:2179-86.
2
Gill et al. note: Adapted with permission from Guidelines for referral and management of systemic lupus erythematosus in adults.
American College of Rheumatology Ad Hoc Committee on Systemic Lupus Erythematosus Guidelines. Arthritis & Rheumatism
1999;42:1785-96. With additional information noted in footnotes 3 and 4.
3
Schur PH. General symptomology and diagnosis of systemic lupus erythematosus in adults. Retrieved March 20, 2003 from
http://www.uptodate.com/physicians/rheumatology_toclist.asp.
4
Gilboe IM, Husby G. Application of the 1982 revised criteria for the classification of systemic lupus erythematosus on a cohort of
346 Norwegian patients with connective tissue disease, Scan J Rheumatol 1999;28:81-7.
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Patients with an ANA titer equal or greater than 1:404 and with multi-organ involvement
(2 or more) can be diagnosed without further testing. Patients with an ANA result less
than 1:40 who do not have multi-organ involvement are usually tested for antibody and
double-stranded DNA antigen and antibody to Sm nuclear antigen (Table 3.1, Criteria
10).
It is also possible to diagnose patients despite negative ANA test results (less than
1:40). These cases are referred to as antinuclear antibody-negative disease. Such cases
require positive anti-DNA and/or anti-Sm test results combined with evidence of organ
involvement totaling 4 of 11 of the ACR criteria. For example, if both the anti-DNA and
anti-Sm tests are positive then only two additional criteria need to be present. If only one
test comes back positive then three additional criteria are needed. Physician reliance on
diagnostic testing varies. Although it is possible to diagnose lupus in the absence of a
positive ANA with either evidence of blood abnormalities (Table 3.1, Criteria 9) or
immunologic disorder (anti-DNA, anti-SM: Table 3.1, Criteria 10), the practice is
extremely rare. The priority placed on evidence of pathophysiology is the most likely
explanation for the rarity of this practice. Reticence to diagnose lupus in the absence of
positive test results undoubtedly leads to some diagnosis delays. However, this practice
also weeds-out potentially inaccurate diagnoses. The priority placed on inferential testing
may result in diagnosis delays. However since lupus is a degenerative disease, it is
assumed that if it is present test results will ultimately support a more definitive testbased diagnosis.
4
The ANA test measures the concentration of autoantibody found in the blood stream; 1:40 refers to the
concentration of autoantibody at a dilution rate of 40 times. This basically means that for individuals with
extremely high concentration of autoantibody in their blood stream, the test will still be positive despite
being diluted with saline solution 40 times. Severely ill individuals can have positive results at 1:160 and
1:320 dilution rates.
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Since diagnosis delays are typical for lupus patients, most clinicians who suspect
lupus but are unable/unwilling to diagnose without positive test results initiate some form
of treatment to lessen symptoms. For women with mild symptoms which might include
achy joints and muscle pain, non-steriodal anti-inflammatory drugs are recommended or
prescribed. For more serious or long-term cases NSAIDS may be combined with other
anti-inflammatory drugs (i.e. plaquenil). If organ involvement is evident then diseasemodifying drugs like steroids (i.e. prednisone) may be prescribed. Other more aggressive
treatment strategies are reserved for diagnosed cases with serious organ involvement (i.e.
chemotherapy with cytotoxic drugs). The general rule with lupus is that patients get
sicker over time. So, despite initial concerns over diagnosis certainty, if lupus is
suspected based on evidence of pathophysiology (either clinical or laboratory), then
treatment is usually initiated. Before evidence of pathophysiology, however, patients
without a diagnosis can search for 2-4 years without receiving effective symptom relief
(Wallace et al. 1981; Pistiner et al. 1991; Ozbek et al. 2003). These delays shaped the
diagnostic odyssey of the women in this study.
Background and Literature Review
Biomedical Diagnosis: Process Overview
Diagnosis is an important part of the therapeutic process across cultures. In
biomedicine, diagnosis is a process that involves transforming subjective experience into
objective reality. In the strictest sense diagnosis consists of two essential parts: the
identification (as a disease or condition) by symptoms or distinguishing characteristics
and the determination of cause (Merriam-Webster 1993). Diagnosis is based on signs and
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symptoms but its premise is to identify cause. Classifying cause makes treatment and
therefore cure possible. “Diagnostic criteria, ostensibly order disease and its symptoms
into useful categories upon which treatment can be based” (Clarke 1996:602). Chiong
(2001) characterizes diagnosis as: 1) a description of a patient as sufferer of a particular
disease process; 2) an explanation of the cause of symptoms; 3) a name to a problem; 4) a
prediction about the future course of illness; and 5) a social practice with far reaching
implications. For the purpose of this analysis diagnosis will be considered not only as
process but also as result: the process as determined by the assumptions of biomedicine
and the result as it impacts the patient.
The process of biomedical diagnosis begins when the subjective experience of
illness is brought to the attention of a physician. The physician solicits an illness narrative
which is considered fundamental but insufficient in securing diagnosis. Researchers agree
that the physician-patient encounter is governed by the dictates of biomedical inquiry
(Paget 1993). These rules proscribe the recounting of illness experience beyond
physiological signs and symptoms. Once description of subjective experience is
complete, attention shifts to collecting “observable” or “measurable” data based on
physical exam and laboratory testing. These “objective” measures reveal, confirm or
disprove diagnoses. If physical examination produces evidence considered sufficient for
diagnosis, testing is done. If tests confirm the diagnosis, it is shared with the patient. In
most cases, nascent diagnoses, in the absence of obvious physical signs and symptoms or
inferential tests, are not shared with the patient. The reason for this practice varies but
most often the aim is to protect the patient from the uncertainties associated with the
diagnostic process. In the case of many lupus patients, however this practice is
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abandoned in favor of a more transparent approach. This is usually done for two reasons:
1) the diagnostic process for lupus is inherently uncertain (due to the lack of definitive
tests); and 2) once lupus is suspected, it is preferable to educate the patient about it.
Although uncertainty about the diagnosis may persist, at least the uncertainty that
accompanies the process can be normalized. The challenges associated with such an
inherently uncertain diagnostic process include: disregard of subjective illness
experience, diagnosis of psychiatric conditions and mental illness, over-reliance on
objective measures of disease and inferential testing, and challenges to biomedical
authority including patient self-research and self-diagnosis. These issues will be
discussed in later sections. Before discussing these examples, additional discussion is
needed about diagnostic constructs and the purposes they serve.
Diagnostic Constructs and the Naming of Disease: Anthropological Insights
Constructs of illness are necessary in order to make sense of lived experience. In
biomedicine they are a device for categorizing symptoms (Kleinman 1973). Illness
constructs vary from culture to culture because they rest upon the sociocultural
background of each context. In order for them to be meaningful they must reflect core
cultural values (Kleinman, Eisenberg and Good 1978; Kleinman 1980). In the case of
American culture and biomedicine, the cause of illness is believed to be rooted in the
natural world and evident in bodily dysfunction. Evidence for this is ongoing interest in
finding pathophysiological cause for so called functional somatic syndromes like chronic
fatigue syndrome and fibromyalgia (Barsky 1999). Until physiological etiology is proven,
legitimacy is in question. From the patient’s perspective however, the etiology of disease
is somewhat less important. As Hunt et al. observe, the appeal of illness categories
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“resides not so much in their ability to represent the apparent biological bases of illness
experiences but rather in shaping and reflecting shared understandings of reality”
(1990:201). For patients struggling with diagnosis uncertainty, the legitimacy of the
diagnosis is of little concern when compared to the importance of the diagnostic event.
In biomedicine, diagnosis assigns meaning to lived experience through the use of
powerful symbols. As Obeyesekere (1985) observes, “…cultural systems, through the
very process of encoding affects into meaningful structures, work to transform raw
suffering into a more manageable constructed experience” (as quoted in Leavitt 1995:
134). In American culture, the illness as disease construct makes experience
understandable. Once disease is diagnosed, its biological basis is determined. Thus, when
illness experience is named as disease, it becomes real. Until that point, its reality is in
question. Once it becomes real, communication about it is enhanced. The labeling
process also makes illness accessible to others. Naming disease facilitates communication
since it is a powerful metaphor for human suffering which is commonly understood.
Thus, the longer diagnosis is sought the more legitimating the event becomes. As
Kirmayer observes: “Through the pain and suffering that foreshadow its own mortality,
the body drives us to seek meaning, to take our words as seriously as our deeds.
Ultimately, the body insists that we finalize our temporary mental constructions,
committing ourselves to some new view of reality” (1992:325). For the undiagnosed, that
new reality is diagnosis. When it arrives, it not only facilitates understanding but also
legitimates suffering, shapes treatment strategies and provides access to officially
sanctioned support services (e.g. insurance, public assistance programs, and health care
services).
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Although much of the power ascribed to biomedicine rests on its ability to
diagnose disease, anthropologists have long critiqued the self-defined rationality of the
process. To assume that biomedicine is a diagnostic science which uncovers the hidden
reality of observable signs and symptoms overlooks its social and cultural embeddedness
(Mattingly 1998). Annemarie Mol examines the way biomedicine deals with the body
and its diseases by raising questions about how it “attunes to, interacts with, and shapes
its objects and varied practices” (2002:vii). Building on the work of Latour and Woolgar
(1986), Mol assumes the subjectivity of scientific inquiry and theorizes about
biomedicine’s ontological politics: “a politics that has to do with the way in which
problems are framed, bodies are shaped, and lives are pushed and pulled into one shape
or another” (2002:viii). Using atherosclerosis as her case study, she examines “the
enactment of reality in practice” and cleverly exposes the multiple layers of meaning
inherent the diagnosis. Although her aim is exploration rather than explanation, she
deconstructs the reality of atherosclerosis to such an extent that the rationality of
biomedicine is challenged. The biological reality of illness has been previously
questioned (Hahn 1985). In practice however biomedicine’s rationality is based on the
biological reality of disease. The belief that illness and disease is tied to
pathophysiological processes gives biomedicine its power to heal. Biomedical cure
depends on identifying biological cause. Belief in the biological reality of disease makes
diagnosis and cure possible. When the biological basis of illness is uncertain, the process
of diagnosing disease becomes uncertain. The questions raised by illness however are not
limited to biological causation.
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Kleinman (1988) argues that illness raises two fundamental questions: “Why
me?” and “What can be done?” Attempting to answer these questions only through
biomedical means is inadequate. In both cases, biomedicine’s explanatory power is
limited by its biological rootedness. Causative explanations focusing on genetics,
immunity and/or lifestyle fail to address the existential aspects of the “why me” question.
Answers to this question are better suited to private notions of the sacred or divine.
Indeed, women diagnosed with lupus frequently resort to spiritual meaning-making in
order to come to terms and cope with the diagnosis. Answers to the second question
based only on biomedical intervention and pharmaceutical treatment overlook the
personal, social, and professional ramifications of chronic illness. Women with lupus
struggle to cope with the effects of the disease and biomedicine cannot address the
broader implications of such a diagnosis. The clinical encounter is too limited to deal
with the personal and social sequelae of living with a chronic illness. Therefore, most
women relied on themselves and their social circle for support. Although biomedicine
may employ its own rationality in the diagnosis of illness, its therapeutic reach along with
the transformative power of naming illness as disease is limited.
Diagnosis Delays: Limitations and Liminality of Biomedical Diagnosis
The period of time before diagnosis is fraught with uncertainty. This uncertainty
is due in large part to the priorities of biomedicine and the ambiguity that surrounds
diagnosing lupus. However, other factors also accentuate the uncertainty of the diagnostic
process. In this section three factors which shape the diagnostic odyssey and contribute to
diagnosis delays will be discussed: 1) the impact of biomedical specialization and
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physician referral; 2) the connotations and meaning of inferential laboratory testing; and
3) the implications of psychosomatic and other biomedical diagnoses prior to the
diagnostic event. Before discussing these issues an overview of the diagnosis delays
experienced by the women in the study will be presented.
Assessing Diagnosis Delays: Calculating Time to Diagnosis
All but one woman in this study experienced diagnosis delays. Women whose
symptoms were more severe at onset were uniformly diagnosed faster than women with
less severe or mild symptoms. Time to diagnosis was also influenced by how quickly the
women were referred to rheumatologists (symptoms severity increased referral speed).
About half the women (20) were diagnosed by rheumatologists based on referrals from
primary care physicians. The remaining women were diagnosed by specialists in internal
medicine (7), emergency medicine (3), dermatology (2), hematology, nephrology,
neurology, pediatrics, primary care, and pulmonology.
Diagnosis delays (Table 3.3) were assessed in three ways based on three
questions: 1) When did your symptoms start?; 2) When was lupus first mentioned as a
possibility and/or a preliminary diagnosis was given by your doctor?; and 3) When were
you officially diagnosed by your doctor?. Time to diagnosis from symptom onset (TDSO) was calculated based on answers to questions 1 and 3. Time to preliminary diagnosis
(TPD) was calculated based on questions 1 and 2. Time to diagnosis from preliminary
diagnosis (TD-PD) was calculated based on questions 2 and 3.
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Table 3.3 – Time to Diagnosis based on Symptom Onset1, Preliminary Diagnosis2 and Definitive
Diagnosis3 by the Number of Women
Total
Characteristic
n (%)
Time to diagnosis from symptom onset (years) (TD-SO) (N=39)4,5
<1
1-3
4-6
7-9
10-12
13-15
16+
10 (26)
10 (26)
6 (15)
4 (10)
2 ( 5)
1 ( 3)
6 (15)
Symptom onset to preliminary diagnosis (years) (TPD) (N=23)4,5,6
<1
1-3
4-6
7-9
10-12
13-15
16+
6 (26)
10 (43)
4 (10)
0 ( 0)
0 ( 0)
0 ( 0)
4 (17)
Time to diagnosis from preliminary diagnosis (years) (TD-PD) (N=23)4,5,6
<1
1-3
4-6
7-9
10-12
13-15
16+
23 (59)
20 (26)
3 ( 8)
1 ( 3)
1 ( 3)
1 ( 3)
0 ( 0)
1
When did your symptoms start?
When was lupus first mentioned as a possibility and/or a preliminary diagnosis was given by your doctor?
3
When were you officially diagnosed by your doctor?
4
Excludes women not diagnosed (n=2)
5
Missing data (n=1)
6
Excludes women not given a preliminary diagnosis (n=16)
3
2
TD-SO ranged from less than a year to thirty-one years. The average TD-SO was
about 7 years. Based on this self-reported data, TD-SO for the women was about twice as
high as average time to diagnosis reported elsewhere (Wallace et al. 1981; Pistiner et al.
1991; Ozbek et al. 2003). For women diagnosed in 15 years or less (n=33), the average
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time to diagnosis was about 4 years. For women diagnosed in more than 15 years (n=6),
time to diagnosis ranged between twenty-one and thirty one years with an average of
about 24 years. Although diagnosis delays can last multiple years, waiting two to three
decades is highly unusual. It is unclear whether the six women who reported symptom
onset 20 to 30 years prior to diagnosis actually experienced symptoms of lupus or
retrospectively attributed earlier unexplained symptoms to lupus. At the time of
interview, these women had been diagnosed between 4 and 24 years (average 10 yrs). For
the purpose of this analysis, the perception of diagnosis delay is more important than the
certainty of symptom onset. Whether the delay lasted months or decades, the debilitating
effects of diagnosis uncertainty were the same even if the cumulative effect may have
been greater the longer the delay.
TPD ranged from less than a year to 30 years. The average TPD was 5 and a half
years. TPD estimates the time between symptom onset and first mention of lupus as a
potential diagnosis. There were 16 women who did not receive a preliminary diagnosis.
These women were diagnosed with lupus the first time it was mentioned. Approximately
83% (n=19) of the women were given a preliminary diagnosis within six years of
symptom onset. The average TPD for these women was 2 years. Preliminary diagnosis
marked an important event in the diagnostic odyssey since receipt of even a potential
diagnosis lessened uncertainty. Four women were given preliminary diagnoses more than
sixteen years after symptom onset. The average TPD for these women was about 22 years
and 4 months.
TD-PD ranged from one month to 15 years. TD-PD estimates the time between
first mention of lupus as a potential diagnosis and actual diagnosis. The 16 women who
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did not receive a preliminary diagnosis were excluded from TD-PD estimates. For
women who transitioned from a preliminary into a definitive diagnosis in 15 years or less
(n=23), the average TPD was about 3 years. The importance of a definitive diagnosis
when preceded by a preliminary diagnosis was more subdued. Since preliminary
diagnosis usually prompted treatment strategies which lessened symptoms and
marginally legitimized suffering, the salience of a later and more certain diagnosis was
reduced. Most women who received a preliminary diagnosis found out about the
definitive diagnosis in passive ways (e.g. noticing the diagnosis on a doctor’s receipt).
Structural Barriers to Biomedical Diagnosis
The women experienced a variety of structural barriers to diagnosis including lack
of insurance; limited access to specialists due to biomedical conventions requiring
referrals and gate keeping practices of primary care specialists in managed care
organizations; coverage limitations for access to out-of-network specialists; and
biomedical sub-specialization which compartmentalized the human body, clouded
holistic understandings of bodily suffering, limited the realm of diagnostic possibility,
and hampered patient care due to lack of communication between sub-specialists. The
number of physicians seen by the women prior to diagnosis ranged from 1 to 15 with an
average of 3.6 physicians seen. About 60 percent (n=22) of the women were diagnosed
after seeing three doctors or less. Given the overlapping nature of lupus symptoms, its
ability to affect multiple organs and systems within the body simultaneously, and the
periodicity of symptoms, the women faced significant challenges in navigating
biomedical structure in search of diagnosis and care.
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After almost 2 years and 6 doctors, Julie was finally diagnosed by a
rheumatologist she was referred to after seeing an internist at Emory. Effected by
moderate symptoms including joint & muscle pain, rashes & hives, hair loss, and sun
sensitivity, her determination led to a diagnosis much earlier than others similarly
effected by moderate symptoms. She was philosophical about her diagnostic odyssey and
attributed the diagnosis delay to biomedical sub-specialization.
It was like I might as well have had ten different bodies because every time I walked into a doctor
they only treated the [part]. It was the old elephant thing. You know where the blind people [say],
“Yeah I know what an elephant is. It’s a great big ear. It’s a big nose.” You know? But nobody
ever treated me as a whole body. They all treated these little symptoms and nobody ever drew any
correlations. My husband said, “I’ve never seen anybody so glad to get a devastating diagnosis!” I
said, “It’s not that I’m glad, it’s just that I know now that I’m not totally crazy and we can treat it
as one disease instead of a hundred stupid diseases.
Another problem associated with biomedical sub-specialization was physician
disagreement. Due to the multiple organs and systems affected by lupus, many of the
women saw multiple specialists simultaneously. Under these circumstances, physician
disagreement was common. When it occurs it increases the uncertainty of the diagnostic
process and heightened anxiety. Prior to her diagnosis in 1984, Rhonda found herself
caught between the diagnosis offered by her pulmonologist and the dissent of her
internist:
He looked at my lungs and said I had what they now call “lupus lungs.” He said I had interstitial
lung disease. Now, (cough) my internist just wanted it to remain as interstitial lung disease. He
didn’t think that I had lupus at all. So when I went back to see the internist, he said, “No I don’t
think you have lupus. I think you have interstitial lung disease.” So then, the pulmonologist called
me back and said, “No, you have lupus.” I thought, “Well you need to… make up your minds”
(laugh).
Disagreements not only occurred prior to but also after diagnosis. For this reason,
biomedical sub-specialization continued to be a problem for these women. Thus, despite
their diagnosis, uncertainty in the clinical encounter persisted as lupus symptoms flared
and previously unaffected bodily organs became involved.
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Objectifying Subjective Experience
“Yet as biomedicine has increasingly attended to visible signs produced by instruments, the long-term trend
has been to relegate patients’ narratives to a lower order of certainty.”
—Stanley J. Reiser 1978, as quoted in Wilce 1995, page 929
“The epistemology of biomedicine is based on the metaphor of vision, in which the eye takes in a replica of
an objective world which the brain then represents or mirrors (Rorty 1979). Technology extends the range
of the eye but does not alter its intrinsic objectivity.”
—Laurence J. Kirmayer 1992, page 326
The process of biomedical diagnosis involves methods to objectify subjective
experience. This posed significant challenges for women during the diagnostic odyssey.
First, the periodicity and transience of symptoms interfered with the presence of
observable signs at the time of the clinical encounter. Second, reliance on testing
increased patient uncertainty due to misunderstandings about the purpose and meaning of
tests. Third, the subordination of subjective knowledge led to feelings of self-doubt about
lived bodily experience. These issues not only shaped the women’s understanding of
diagnosis delays but also their understandings of self. The next three sections discuss the
implications of objectivity during the diagnostic process with regard to: 1) periodicity of
symptoms; 2) diagnostic testing; and 3) understandings of self and lived bodily
experience. It is argued that systematic disregard of subjectivity invalidates lived bodily
experience, prompts notions of psychological deficiency and reinforces feelings of
inadequacy and self-doubt.
Objectifying Subjective Experience: Periodicity of Symptoms & Diagnosis Delays
The first means of concretizing subjective experience is to identify physical signs
of illness during the clinical encounter. Some women expressed frustration over this
convention, since symptoms of lupus were frequently transient. This was often the case
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for women whose symptoms included fevers, joint or muscle inflammation (swelling or
stiffness), fatigue, skin nodules, sores in the mouth or nose, skin rashes, or visual
disturbances among others. Although women can experience transient symptoms
regardless of organ involvement, women with milder cases may experience longer breaks
between symptom flares and milder symptoms which disappear more quickly when flares
occur. Before her diagnosis, Layli was concerned about the transience of her symptoms
to such an extent that initially she delayed seeking care. When her symptoms worsened to
include stomach pain, she decided to go to the doctor. Since the doctor was unable to
diagnose her stomach pain, Layli decided not to go back even though her knees started
swelling.
About two years ago, I started noticing swelling in my hand and I actually thought it was carpal
tunnel initially because I did do a lot of typing and sitting at a computer… But anyway, I noticed
that my hands would swell. Then it just sort of went away. It didn’t surface again…. the pain in
my hands just sort of went away. Then I noticed I started getting these little nodules in my fingers
or my legs and then they would just go away. So I never really paid much attention as far as
thinking I needed to go to the doctor because they would disappear so I wouldn’t have anything to
tell the doctor about.
…When I moved here initially, I started having all of these stomach problems. Whenever I would
eat, my stomach would hurt. So… this was the first time I actually went to the physician. They did
all of these tests and they couldn’t find anything wrong. Again, I didn’t have any of the swelling
or anything… and then my stomach problems just sort of went away.
…Then I started having the swellings again. A couple of months after that my knee would swell. It
would stay two or three days. Then at this point I’m really feeling like I don’t need to go back to
the doctor because I just had another doctor basically say there’s nothing wrong with me.
Layli’s reticence to return to the doctor without observable symptoms was partially due
to her busy schedule and a tendency to underestimate how sick she really was. (As a
child, her mild mannered complaints about stomach pain went undiagnosed until her
appendix burst.) Her symptoms continued to worsen and she started to take Motrin for
the pain associated with her “swellings.” When she started to develop headaches, she saw
an opportunity to make her case. Her father came for a visit and they used his
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sphygmomanometer to check her blood pressure. Emboldened by the result, she returned
to the doctor.
Then at one point, I would get these really, really bad headaches. My dad happened to come and
visit. He has high blood pressure, so he keeps his blood pressure cup with him at all times. When
my head was hurting so bad and I had this nauseous feeling, he was like, “Oh my goodness! Let’s
take your pressure.” When he took my pressure it was extreme. It was like 150 over 100, or
something really high. He was there for about three or four days and he took it every day. Every
day it was high. So he was like, “You need to go to the doctor.” At this point, this was something,
I guess, tangible. I can give to them this data, “my pressure’s high.” So when I went, of course my
pressure was still high but the doctor, he just sort of, “Well your dad had high blood pressure, you
have it, and that’s just what it is.” … so I left and I still was having really bad headaches.
Since Layli’s headaches were worsening and she thought they might be related to high
blood pressure, she went back to request medication for it. She saw an associate who
decided to run some additional tests. He called her the next day to let her know that she
might have lupus and she needed to go to a rheumatologist. Since her “swellings” never
seemed to coincide with her scheduled doctor’s appointments, she was afraid that the
rheumatologist would also doubt the veracity of her suffering. At the appointment she
voiced her concerns.
It was weird because when I went to see the doctor for the first time, nothing on my body was
swollen. (laugh) I think my finger was swollen a little bit. I was like, “But it was just swollen
yesterday!” And so the doctor’s looking at me like, “Yeah…” (sarcastically) But I think he
understood. He was like, “Yeah, that happens.” But he’s gonna think nothing’s wrong! (laugh)
During her twenty year diagnostic odyssey Amelia also experienced transient
symptoms. It was not until she had a swollen thumb and she listed all her past symptoms
on the rheumatologist’s medical history in-take sheet with that she was diagnosed.
You know how you go to the doctor’s office and they give you that little questionnaire? Usually I
just put down kind of basic information. Well, for some reason I went back all the way back to
childhood. I included everything that I could ever possibly remember. It’s the first time I’ve ever
done that… I never do that. I wrote it all down like everything, all the different things. Because
I’ve had a lot of different things over the years but they would come and go. I may have [had]
something wrong but by the time I [would] make an appointment with the doctor and go to the
doctor that [symptom] would have gone and something else may have come. She just read the
history and she told me she thought I had lupus. She never even touched me. Just by reading the
background information, she just told me, “I think you have lupus.”
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Although Layli and Amelia did not discuss the relationship between the periodicity of
symptoms and diagnosis delay, they were fully aware that diagnosis depended on
observable signs of illness. This knowledge was based on their past experiences with
biomedicine and it influenced their behavior. Layli delayed her doctor’s visits until she
had proof and Amelia waited until the compendium of her illness experiences was so
compelling that the diagnosis was obvious. These examples should not lead to the errant
conclusion that individual choice leads to diagnosis delay. On the contrary, the women’s
behavior was precipitated by their knowledge of biomedicine and its requirements. In the
absence of physical evidence of disease, diagnosis was delayed regardless of behavior.
Layli and Amelia’s experiences underscore the priority placed on objectivity in
biomedical practice. So much so, that patient decision making anticipates denial of
subjective experience and shapes health seeking behavior.
Objectifying Subjective Experience: Diagnostic Testing & Diagnosis Delays
When describing the circumstances leading up to the diagnostic event, most
women mentioned test results in their narratives. The information shared ranged from
general references to “blood work” and results as “positive” or “negative” to highly
detailed accounts including biomedical nomenclature (ANA, anti-Sm, anti-DNA, etc.)
and test result figures. Testing was usually described in a dichotomous manner as proof
of either the absence or presence of disease. Since the meaning of testing was limited to
what the women expressed in their narratives, it was not possible to know whether their
understanding stemmed from what their doctors did or did not say about the purpose of
testing during the clinical encounter. As a result, only indirect inferences could be made
about potential sources of understanding and misunderstanding. Although many of the
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examples presented in this section concern the period before diagnosis, testing continued
to be an issue even after diagnosis since it was the preferred means used to distinguish
flares in lupus symptoms from other health problems. Therefore, post-diagnostic testing
raised similar concerns about the validity of subjective experience.
In spite of the fact that testing only refines the veracity of a diagnosis, many
women believed that it conclusively proved the presence or absence of disease. While
hospitalized with severe neck and abdomen pain, flu-like symptoms, shortness of breath,
and chest pains, Mouzhan went through a series of tests (EKG, pulmonary function test,
blood work, and chest x-rays) which allowed her doctors to rule out hepatitis, meningitis,
myasthenia gravis and multiple sclerosis. After discharge, she developed a malar rash and
was referred to a dermatologist. She described how the dermatologist arrived at the
diagnosis:
Finally they sent me to see the dermatologist because I had the lupus rash over my face. The
dermatologist was actually the one who diagnosed me with lupus. He did a skin biopsy to confirm
his diagnosis; he did the sedimentation rate which was very high. He did the cell prep [which] also
proved that I have systemic lupus.
Rhonda’s test results were highly memorable since her physician chose to run a syphilis
test to check the level of antiphospholipid antibodies in her blood. A false-positive result
is considered indicative of lupus.
…they did some blood tests because I remember them coming back and asking me if I was
sexually active and I told them, “No.” He (doctor) said, “Well you have syphilis.” But I told him,
“How can I have [syphilis]... There’s no way I can have syphilis. I don’t even know what a penis
looks like. (laugh) And a date is a dried fruit - Okay? (laugh)
Many women were puzzled by the purpose of testing even biomedically savvy
women. In 1992 while still employed as a nurse, Danielle started experiencing fevers,
periodic sore throat, fatigue, joint pain and swelling including pain in her feet so
excruciating she had to walk on her knees after getting out of bed or sitting for long
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periods of time. Her endocrinologist ran a series of tests but she was not diagnosed until
five years later by a rheumatologist. By that time she had great difficulty walking and her
symptoms had worsened to include Raynaud’s syndrome, fibromyositis and extreme
fatigue. The fact that the test results came back positive and lupus was not diagnosed
troubled Danielle. Her narrative focused on diagnostic misses. She made a point of listing
all the positive tests which at the time of the interview she knew were indicative of lupus.
In ’92 I went to an internist whose specialty was I think Endocrinology. He ran all the tests and
didn’t say specifically [anything about] lupus or collagen [disease], or connective tissue [disease]
or anything. But he ran all these tests. He said, “Well you’ve got a positive ANA. You’ve got a
positive anti-DNA. You’ve got an elevated SED rate, a low white blood count.” Those are the
kinds of things I remember him saying.
Confusion surrounding the meaning of “positive” test results was common. As a result,
diagnosis delays were sometimes attributed to misinterpreted results or missed
opportunities for testing. While hospitalized for exhaustion and shortness of breath, the
attending rheumatologist ran an ANA on Kitty and told her that it was negative. Five
months later she developed cognition problems. After visiting her internist, he told her
that she either had chronic fatigue syndrome or lupus. She described her reaction to
learning this:
I said, “Okay, why didn’t we figure this out while I was in the hospital?” (breathes out) He said,
“Well because your ANA test [result] is like really the low positive.” He said, “Let’s send off this
other test that was a more comprehensive ANA.” I don’t know if you [know], there’s another
ANA profile that they send to California and it takes a couple of weeks… so they sent that off.
Then he said, “I think you need to see a rheumatologist in Atlanta. Find one.”
The complexity of the ACR criteria was difficult not only for physicians to apply but also
for the women to understand. As a result, misunderstandings about the purpose of testing
in general and individual tests in particular were common. For example, Bailey described
the anti-dsDNA test as “definitive” test for lupus.
So double edge sword. Lucky for me all of my tests came back hugely positive... I had a markedly
high ANA. I had very low white count. I had leucopenia right away. My thyroid TSH was like
14.0 - way high for hypothyroidism - or 11. I don’t know. It was high, 13 - between 11 and 14, I’ll
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say. It might have been 13.0. All the numbers indicated trouble, real trouble. I went back for a
second round, which included the double strand DNA; which is the definitive test for lupus.
The majority of the testing discourse focused on the ANA test. Whether it was
positive or negative, virtually all the women mentioned it at some point during their
narrative. Positive results were presented as confirmatory of lupus. Negative results were
often discussed in reference to diagnosis delay. Julie described how after eight months of
shingles outbreaks, her doctor kept postponing her diagnosis based on a negative ANA.
“You don’t have a positive ANA. They kept saying ‘Well, it can’t be lupus.’” I asked her
to clarify the purpose of the ANA.
K: It’s interesting because my understanding of the ANA is that it’s not supposed to be used to
really diagnose lupus. It’s not a definitive test.
I: That just changed this year.
K: Oh really?
I: A lot of doctors, up until this year [when] the College of Rheumatology… I believe, if this is
correct, check with one of the doctors… ‘Cause I heard some of the other rheumatologists talking
and saying, “Well, I’ve never seen anybody that didn’t have a positive ANA that had a diagnosis
[of lupus].”
It is possible that Julie’s symptoms were too few to support a diagnosis based on the
ACR criteria. Nevertheless, she believed her diagnosis delay was attributable to negative
test results. It was not until she saw a rheumatologist a year later that she was diagnosed
with anti-nuclear antibody negative disease. Darcy also attributed her diagnosis delay to a
negative ANA. After two years of waiting, she learned about her diagnosis by reading it
on a doctor’s office receipt.
…So I started seeing my current rheumatologist. I’ve been with him the whole time. When I went
to him my ANA was negative. I don’t know what other blood tests he’s done but I’ve never had a
conclusive, “you definitely have lupus.” We’ve ruled out everything else. For a long time my
diagnosis was connective tissue disease. That’s how it was… for a couple years… he put that
down for a long time because there was no definitive diagnosis where he could say [with] this
blood test you have lupus.
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Even with a positive ANA, Sally’s result could not be trusted. The ANA determines if
autoantibodies are present in the blood regardless of the type of autoimmune disease.
Therefore, it is considered an unreliable indicator for lupus in women with other
autoimmune disorders.
K: It was in the early ‘90’s when you were diagnosed with hypothyroidism and then in ’93 you
kind of got a tentative lupus diagnosis?
I: Right. It was questionable then because the thyroid disease that I had produced antibodies. So it
was very questionable whether that positive ANA was… reliable or if it could be thrown off by
the thyroid antibodies… That was a huge matter of debate for probably two years (laugh)… So, it
was really questionable how reliable that positive result was.
Magda had similar problems with diagnostic tests. After being diagnosed and treated for
myasthenia gravis (a chronic autoimmune neuromuscular disorder), Magda’s symptoms
continued to worsen until she was referred to a rheumatologist.
K: I have one question about the diagnosis. Did you go in to see the rheumatologist and get your
diagnosis that day?
I: Mm-hm, within ten minutes.
K: What did he do? Go through the checklist of symptoms...?
I: My rheumatologist is a lady. She just, within ten minutes before even doing any tests... My
body, the way the doctors say it, is just kinda so messed up with all of the autoimmune diseases.
My blood tests actually don’t cooperate. So they have done all of my diagnoses by clinical
evaluation.
Magda along with three other women were diagnosed without a positive ANA. The other
three, Julie, Sally and Valerie were all evaluated by the same rheumatologist. Since
confusion surrounding the “definitive” nature of testing in general and the ANA test in
particular was common, the topic of testing was often discussed at support group
meetings. Partially due to Magda’s own diagnosis experience, she was passionate about
educating other women about the possibility of being diagnosed with antinuclear
antibody-negative disease.
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.. And several of us [support group members] haven’t [had a positive ANA]. But that’s why so
many patients went undiagnosed for so long. Many of them died because of that. As a matter of a
fact, I had a neighbor in Griffin that had lupus and she was really critical before they ever finally
diagnosed her. The doctor she was going to would not diagnose her without that ANA. She did
die. She died with a blood clot, actually. She didn’t know what was wrong, she didn’t go to the
doctor. I was so sick at the time… I was trying to persuade her to pursue it. I told her to just…
“Go to another doctor!” …But then I learned it’s just such a complicated thing for them to figure
out, particularly when you do have more than one [disease]. Now I can see why they had trouble.
The understanding that laboratory tests confirm a diagnosis of lupus is based on
the biomedical need to objectify subjective experience. In spite of their inferential status,
the diagnostic tests discussed by the women were understood to be more definitive than
they actually were. The assortment of tests used to evaluate potential cases is based on
what is currently known about lupus and the signature evidence of autoimmunity in the
blood. The tests do not confirm the diagnosis, they simply indicate whether a diagnosis of
lupus can be supported by pathophysiological evidence. Setting aside the issue of
confirmation for the moment, there is another problem associated with testing for lupus.
This problem is not unique to the lupus experience. It involves the temporal relationship
between illness experience and laboratory evidence of pathophysiology. Even when
disease is identifiable, reducible to a virus, bacteria or other organism, testing does not
always yield definitive timely results. Thus, illness symptoms and test results do not
always coincide. Biology is sometimes fickle. This means that even though
pathophysiology may be present, even highly specific tests may not bear this out.
For example, the test for mononucleosis can be negative for five to seven days
and sometimes up to two weeks in spite of clinical signs indicative of disease process
(Aaronson and Auwaeter 2007). These symptoms can include high fever, muscle and
joint pain, enlarged lymph nodes, inflamed tonsils with carbuncular white exudes, no
cough, and low appetite in spite of no stomach upset. Once streptococcus is ruled out
(using a rapid strep test), the patient’s blood is tested. If the patient presents within five to
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seven days of infection, in spite of clinical evidence indicating mono, the test will usually
be negative. If the same test is performed one week later the test will be positive.
Inferential testing for lupus also can be unpredictable and disjointed. Little is known
about the temporal relationship between illness experience and evidence of abnormalities
and immunologic disorders in the blood.
The potential temporal delay of pathophysiology associated with lupus symptoms,
has implications not only for pre-diagnostic but also post-diagnostic testing. Women
frequently talked about their confusion over test results and how they were feeling, either
to express dismay over diagnosis delays or to register continued disappointment over
doctor disregard for their subjective illness experience. The dis-synchronous nature of
test results and illness experience prolonged the suffering of some women even post
diagnosis. This was especially evident in mild cases, where the degenerative effects of
the disease were not yet evident in the blood. The practice of running tests to differentiate
symptom flares from other ailments (like the flu or bacterial infections), left many
women feeling like their doctors would never take them at their word. Sally described her
frustration with this experience as follows:
K: Do you find that the results that you get from the ANA, when you go in periodically to see the
rheumatologist, coincide with what you’re feeling?
I: No. No. For me, usually it’s the opposite. If I’m feeling good, my blood work is terrible.
Usually if I’m feeling terrible, my blood work does not support that. I think that’s really peculiar
and it really is frustrating. It aggravates me. But that’s generally the way it goes. I don’t know if
I’m just a day late and a dollar short or what it is (laugh) but it just doesn’t pan out that way.
K: How does he explain that to you?
I: He doesn’t. The rheumatologist that I see, he very much relies on labs, so he and I often are not
in sync. He’ll think I’m not doing well at all and it will be a time when I’ve been feeling really
pretty good - and vice a versa. It took us a long time. I’ve gone to him for eight years now. It’s
really only been in the last two or three years that we’ve probably had, what I would consider, a
really good relationship. It’s taken him that long to get to trust me and my instincts.
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Sally’s experience is a poignant example of the determination sometimes required to
build trust in a relationship in which one participant fundamentally discounts the
subjective experience of the other. Like other women, she articulated her complaints in
the clinical encounter but found her physician unable to accept what she said at face
value. Scarry observes: “physicians do not trust (hence, hear) the human voice, they in
effect perceive the voice of the patient as an ‘unreliable narrator’ of bodily events, a voice
which must be bypassed as quickly as possible so that they can get around and behind it
to the physical events themselves” (1985:6). The priority placed on laboratory testing not
only alienated patients by marginalizing their subjective experience; it may also have led
to unnecessary diagnosis delays. The women’s concern over test results reflected not only
awareness of biomedical priorities; it was the only means available in the biomedical
context for the legitimation of bodily suffering. The next section explores the personal
costs associated with objectifying subjective experience.
The Consequences of Objectifying Subjective Experience: Self Doubt and Psychosomatic
Diagnoses
“Biomedicine treats pathologies as objective entities and complaints as one audible sign along the road to
diagnosis to be balanced by “objective” – often visible – test results. Physicians do not assume a simple
correspondence between “presenting complaints” and the pathology to be diagnosed…There is nonetheless
a naïve realism inherent in biomedicine’s reification of complaints as well as of disease entities. When
complaining is objectified as complaints/symptoms, complaining as an interactive process is lost from
sight.” —James M. Wilce 1995, pages 928-29
“Reductionist empiricism can alienate patients.”
—James M. Wilce 1995, pages 949-50
There was an unhealthy symbiotic relationship between biomedical objectivity
and patient perceptions of self. The most pervasive result of diagnosis delay was selfdoubt in lived bodily experience. The importance of objective measures in the clinical
encounter led the women to doubt not only their sanity but also the actual reality of their
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sensory experiences. Although some women were told outright that they were
hypochondriacs, more often it was assumed to be the case based on the priorities and
dynamic of the clinical encounter. The assumption “I must be crazy” followed logically
from the subordinate position lived experience was given. The resulting diagnosis
uncertainty coupled with self-doubt prompted secondary diagnoses of depression.
Although illness experience together with diagnosis uncertainty may have led to
depression, it also may have resulted from the systematic disregard of subjective truth. As
the diagnostic odyssey continued, what the women sought was not necessarily a
diagnosis per se but an acknowledgment that their subjective experiences were real. This
acknowledgment took place when a diagnosis was given. Although getting a diagnosis
was important, it became even more significant once subjective experience was
questioned and perceptions of self began to erode. Thus, biomedical objectivity created a
situation in which uncertainty was amplified and self-doubt was created.
Craziness, Hypochondria, Depression and Self-Doubt
The women used “craziness” three ways in their narratives: 1) to signal the
internalization of self-doubt; 2) to describe being made to feel “crazy” by their physician
or the circumstance of the clinical encounter; and 3) to describe doubt related to lived
experience or what could be called “imagined illness.” These narrative conventions were
rarely used in isolation. Kenny’s self reflection demonstrated the deconstructive power of
objective uncertainty. She even decided that since “craziness” may have been the only
explanation for her experiences, when she went to a psychiatrist she should not be
embarrassed.
Before it was like you’d ask yourself am I crazy? You begin to wonder, “Maybe I just need to go
to a Psychiatrist.” I thought we might do that. We didn’t but I thought we might. I wouldn’t have
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been at all embarrassed to go because I thought it must be something like that because I couldn’t
function. So that was really difficult.
Part of Kenny’s willingness to entertain the possibility that her physical suffering might
actually be psychosomatic, was due her limited ability to function. Over the course of her
10 year diagnostic odyssey, she experienced fevers, achy joints, muscle pain and extreme
fatigue. Her symptoms were attributed to chronic fatigue syndrome, low thyroid, and
being overweight (even though her 5’2” height could easily support 130 lbs). What made
her attribution profound was that she was willing to consider a psychological alternative
given the extent of her physical discomfort. In the case of mild disease like Kenny’s,
second guessing the veracity of lived experience was common.
Mandi’s feelings of craziness related to the way her rheumatologist made her feel.
After two tests came back positive (ANA and anti-Sm), he told her that she could not
have lupus because her joints were only painful not swollen (an indication of
inflammation). He attributed the pain to hypermobility strength syndrome and told her
that “normal everyday people” can have positive test results like her. This was very
difficult for Mandi to understand.
The last rheumatologist… he just kind of made me feel really crazy I guess. Because “I don’t
know what you have but you don’t have…” I was like, “Okay, that’s fine but I know something’s
going on with my body.”
Although Mandi’s feelings of craziness were not directly linked to negative test results,
the nature of the clinical exchange left her feeling devalued. In spite of the doctor’s
pronouncement that she could not have lupus, her assertion that “something’s going on
with my body” signals the limits of her self-doubt. Although she was also made to feel
“crazy” about her mild disease, unlike Kenny, Mandi was not willing to question her
lived bodily experience.
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When Layli’s doctor told her that she “tested positive for lupus,” she expressed
her feelings of validation by contrasting potential “craziness” with proof that she was
really sick. “So at this point, that’s when I was like, ‘Okay, I’m not crazy. Something is
going on with my body.’ That’s when I tried to get in with a rheumatologist.” Layli’s
reaction reflects not only the priority placed on objectifying subjective experience in
biomedical practice but also the legitimation of bodily suffering that comes with a proofpositive result. She entertained the notion of craziness only as long as there was no proof
that she was sick. When the proof arrived, she was willing to set aside that notion.
Although the diagnosis gave Layli the legitimation she was looking for, 6 months later
she had an adverse reaction to an immunosuppressive drug. Since there were no physical
manifestations of illness, her new rheumatologist disregarded her complaints. Layli’s
worst fears about lacking visible proof of illness came into fruition. She was hospitalized
for two weeks and was near death due to an overdose of that pharmaceutical. During that
time, we had many conversations about what went wrong. Layli repeatedly said, “If they
can’t see it, they don’t believe it.”
Julie’s experience with multiple diagnoses and continued uncertainty during her
diagnostic odyssey also precipitated self-doubt. Although her reference to
“hypochondria” is somewhat tongue-in-cheek, the psychosomatic attribution of her
physical suffering led her to question the reasons for her multiple diagnoses of
depression.
Looking back on it I had a lot of pleurisy and pneumonia. It would attack my lungs. And all kinds
of skin diseases, bizarre skin diseases that would be diagnosed. They’d say, “This is something
that you’re gonna have the rest of your life. You can’t do anything about it.” Then, two weeks
later, it would disappear. (laugh) Either that or I’d be diagnosed with something that was
hereditary but nobody in my family had ever had it. Just strange stuff would happen. I got to a
point where I didn’t really like to see a doctor unless it was something that I absolutely couldn’t
live with because about half of the time they couldn’t find any reasons for what was wrong with
me. So of course then they would send me to a psychiatrist! (laugh) I got to the point where I felt
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like… I don’t know, maybe I am a hypochondriac! (laugh) Maybe there is something wrong with
my head. So off and on I’ve been on antidepressants over and over and over again because I had
bizarre, strange, health problems that nobody could ever explain.
Julie’s experience with depression was echoed by many women. Didi talked about
being put on antidepressants because she was having trouble coping with her illness
symptoms prior to diagnosis. I asked her to talk more about her experiences.
D: It seems like they’ll say it’s the depression. You’re depressed. When you’re depressed your
body reacts. Then they thought I was a hypochondriac. They wanted me to see a psychiatrist.
K: Who told you that?
D: Well, let’s see… A rheumatologist because he couldn’t find anything. So he just said, “Well, I
think it’s all in your mind.” I was, “It’s not in my mind. I know how I feel. I’m no
hypochondriac.”...I don’t feel like they took the time to actually hear me. They ask you how you
feel and I’m tellin’ them and tellin’ them. They [say] “depression.” “How can you rule it
depression, when I’m tellin’ you about joint pain?” They ask you the level of pain, that pain scale
thing. At times, you know, it feels like a six to me ‘cause it’s really bothering me. They [say],
“Oh, if it was a six or a seven you wouldn’t be walkin’.” You know it’s like they actually callin’
me a liar. It’s insulting.
Didi’s desire to be “heard” by her doctors underscored the disrespect other
women felt when subjective experience was disregarded or attributed to psychosomatic
disorders. She understood that a diagnosis of depression called into question the validity
of her lived experience. Melanie was more direct about the potential source of physician
disregard. Due to the visual disturbances and the neuro-muscular symptoms she
experienced, she saw a number of neurologists during the five years prior to diagnosis.
K: You said that it felt like you were going crazy or they were implying a diagnosis of
hypochondrias. Did a physician ever say that to you?
M: Oh yes. Especially male physicians would say that. Unfortunately most neurologists are
male…. There’s this stigma that women are crazy. That they don’t have real diseases. That they’re
hysterical. That they’re hypochondriacs. That, “Oh you’re just tired because you’re tired.” It was
real frustrating when you know that you can’t physically get up because you’re so exhausted or
your head is just pounding. Your joints are swollen, you feel bad and you’ve got a fever. And
somebody says to you, “Well if you just sort of get up and get it out of your mind and go on.
You’re probably depressed.” Then it’s, “You probably could be depressed.” But you’re not
clinically depressed. You’re just trying to figure out what’s wrong. There’s actually people who
aren’t diagnosed right away that there’s this common thread. Everybody’s pretty much told at
some point, “Well maybe you need to see a psychiatrist and see if some of this is an emotional
problem…” and whatever. That was really frustrating. Not that psychiatric illness isn’t real
because there is a component of lupus that goes into that as well. But to say that that was the sole
reason for my symptoms was [frustrating]…
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Melanie’s training as a physician did not protect her from experiencing what
many of the other women experienced. However, having symptoms written off as
psychosomatic through the diagnosis of depression increased suffering because it delegitimized that diagnosis. When uncertainty concerning the underlying cause of disease
existed and depression was diagnosed, the biomedical imperative to translate subjectivity
into objectivity was not met. When this occurred, regardless of the intent of the
physician, the patient was left to feel that their subjective experience was somehow
lacking. When the physician was unable to find objective evidence of disease, illness
experience was often attributed to psychosomatic cause.
The fear associated with being called crazy persisted even after diagnosis and may
have contributed to delays in patient reporting of symptoms. When Kate started
experiencing nerve twitching during the night, she thought she had bugs in her mattress.
I thought that I was loosing my mind. Obviously there was nothing in the mattress because
otherwise it would run up and down while I was standing up, holding it, touching the mattress to
see if there was anything in there. Of course I really thought I was losing it. I was like, “Yeah
right. I’m going to tell this man [doctor] one more thing. He’s going to look at me like I’ve lost
my mind!” I don’t know how long it was before I could [tell him]…. So I finally told him about it
and he said, “Oh, yeah, that happens. It’s just your muscles twitching.” He said, “Is it really that
bad?” I went, “Of course or I wouldn’t be telling you about it!” (laugh) So, he put me on
Clonidine. I think it was - Clonidine; which is a blood pressure medication and it went away. I was
just like - amazed.
Diagnosis delays which led to attributions of psychosomatic illness wore down the
women’s resolve. Kate delayed seeking care for fear of being called “crazy.” When she
finally saw her doctor, he was nonplussed by her experience and prescribed medication
which made her symptoms disappear. Maggie was the exception to the psychosomatic
diagnosis experiences of the other women. Diagnosed within two years of symptom onset
due to severe symptoms and a malar rash across the bridge of her nose, she expressed
thanks for not having gone through the same experiences as other women.
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I’ve been fortunate over the years, I have had extremely good medical care. I didn’t have all the
problems with the doctors, “You’re a hypochondriac.” They didn’t know what was wrong with me
but they didn’t dismiss me either. I hear some of the other girls struggling with the doctors. I really
never had that problem and I’m very thankful.
Resistance Strategies: Research, Self-Diagnosis and Lessons Learned
“Five years ago when I was getting a little sicker, I was getting very thirsty for information. I was realizing
that my doctor was not able to provide the information that I needed. I knew, obviously I knew (laugh)
there was a whole lot more wrong with me than just a simple laboratory result [could show] since no one
could give me a definitive [diagnosis].” —June
June expressed what many women came to realize during their diagnostic
odyssey: biomedical practice is imperfect and alternative problem-solving strategies may
need to be deployed. Diagnosis delays not only tested the mettle of the women, they also
precipitated resistance strategies and taught powerful lessons about biomedicine and
biomedical practice. The most common strategy deployed for reducing diagnosis
uncertainty was independent research. Women turned most frequently to the Internet but
also did research at the library and bookstores or by contacting disease-related non-profit
organizations. Their research was usually based on preliminary or potential diagnoses
shared during the clinical encounter by their physicians. Research could occur at any time
but it was most often initiated after diagnosis uncertainty had reached a degree
considered no longer tolerable. Most women were aware of the biomedical taboo against
“self-diagnosis.” If they were unaware, they soon learned that physicians consider
themselves the authority on diagnosing disease. Physicians uncomfortable with women
who had a penchant for self-education usually made their discomfort known.
Disagreements over the role of patient (as passive receiver of information) and physician
(as active giver of information) were sometimes resolved amicably. In other cases, the
women chose to discontinue their contact and found another doctor.
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As a nurse Danielle knew better than to diagnose herself. But she could not help
it. After just a few months, she started searching the Internet. When she saw the
rheumatologist, she already knew what she had. Given the length of diagnosis delays,
some physicians, especially rheumatologists, have come to expect some degree of selfdiagnosis.
…I was getting to the point where it was actually physically difficult for me to walk… I have a
girlfriend whose husband is a Neurologist… she saw me and she went, “Oh my God. You look
awful. You can hardly motivate…” She said, “Look, we think you need to go see a
rheumatologist…” So I made an appointment and I went to it. Of course I had been reading things
but I tried not to do the self-diagnosis kind of thing. When I talked with him he ran tests and
everything. He said, “Well, what do you think you have?” I said, “Well, I think I have lupus and I
think I have Raynaud’s…” He said, “Yes you have those two and you have an overlap of
Sjögren’s.” …So it took two years for a diagnosis.
Valerie’s research and demands for care expedited her diagnosis. After having hives for
eight months and her primary care physician “couldn’t figure anything out,” she asked to
be referred to an allergist. Three months later she was diagnosed.
It was hives. It was just absolutely unbelievable. I was going crazy… I was fed up at this point. I
said to him, “Look, there’s rheumatoid arthritis in my family. Why don’t we test for rheumatoid
arthritis?” The allergist said, this is after eight months, “We can’t be jumping the gun on every
little allergy test.” He said, “So no, we’re just going to try and continue doing this.” I kept going
back crying, because I was in so much agony (quiver in voice). So then I finally got really fed up
and my husband said, “Why don’t we do some research on the Internet? You’re a nurse, you have
enough knowledge, go to the Internet and see what you can find.” So, I went to the Internet and I
did some research on hives. I found a lupus website that listed all the symptoms I had. The hives,
the Raynaud’s, the extreme fatigue, the low grade fevers…. [low] white blood cell count….
You’re supposed to have three or four of the symptoms out of ten and I had about eight of them.
So I went back to the allergist and I said, “I have lupus… I told you rheumatoid arthritis is in the
family. …I really want to be tested for lupus. I want to be tested for rheumatoid arthritis.” He
came up with a couple of other ones. He said, “Okay, you’re right. We really need to do something
at this point.” That’s when it came back positive - the anti-nuclear, the ANA... It wasn’t out of
sight but it was enough so that they said “Yes.” Then I contacted a rheumatologist.
Valerie’s narrative highlights the tension that can develop between patient and physician
under circumstances of diagnosis uncertainty. Although her allergist was comfortable
continuing to treat her symptoms, Valerie wanted answers. The allergist’s reticence to
entertain a request to test for rheumatoid arthritis is indicative of the difficulty most
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physicians’ had with patient initiated diagnostic strategies. Valerie’s research led her to
consider the possibility of lupus. Her insistence on getting answers challenged her
physician’s authority. Her experience demonstrates the potential cost associated with
such a resistance strategy. However her persistence, in spite of the possibility of being
told “no” a second time, paid off. It also underscores the degree of her frustration with the
diagnosis uncertainty. Had it not been for her determination and independent research,
her diagnosis may have been further delayed.
At the time of our interview, Rita had not been diagnosed. She had experienced
eleven miscarriages and was nearing despair that she would ever conceive a child.
Completely perplexed by her infertility and desperate to find some answers, she cobbled
together a self-diagnosis based on her joint and muscle pain, hair loss, extreme fatigue,
and a (one-time) elevated ANA test. After asking multiple times to be referred to a
rheumatologist, the primary care doctor at her HMO gave her a referral. At the
appointment Rita described her symptoms and also mentioned that she thought she might
have lupus. “I think he was offended by it… ‘You don’t want lupus so don’t come in here
telling me that you have it. That’s not something that you want.’ Of course, I don’t want
it, I just want to know what the heck’s going on with me.” Based on her doctor’s
response, Rita understood that she had stepped outside her role as patient and entered the
sacred territory of the biomedical diagnostician. However, her transgression precipitated
the result she wanted: the doctor evaluated her for lupus and ran some tests.
But I think because I made the attempt to try and self-diagnose - go in with some information for
him - he was very aggressive with testing. Although you can look at that twofold, I guess I felt
kind of patronized on the one hand but on the other I kind of was appreciative that he went the
extra [mile]... I don’t recall all of the tests that he had done but each and every one of them came
back negative or normal.
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The threat that patient research and self-diagnosis pose to the doctor-patient
relationship was problematic for the women. Since diagnosis uncertainty existed both
prior to and after diagnosis (due to symptom flares of unknown etiology), women who
took this kind of initiative continued to do so long after diagnosis. Some physicians were
comfortable with a more egalitarian doctor-patient relationship. The women learned
through experience which doctors were willing to tolerate patient initiative. If openness
in the clinical encounter was a priority then likeminded physicians were sought.
Just as the women came to understand the limitations of the doctor-patient
relationship, so to did they come to understand the limitations of biomedical knowledge.
The fallibility of physicians was something most women came to realize as the diagnostic
odyssey progressed. This realization gave them power and may have prompted
independent research and self-diagnosis. Indeed, once the diagnostic power of
biomedicine was questioned, a more realistic understanding of its limitations took hold.
While waiting for 6 years for her diagnosis, Kate realized that diagnosis uncertainty was
normal and that doctors did not know everything.
K: What would usually put you in the hospital?
I: Well, it varied. Most of the time it was blood in my urine. When I say it was blood in my urine...
I mean it was a lot of blood in my urine. It wasn’t just a little here and there like you get with a
urinary tract infection and stuff like that. And they couldn’t figure out what was wrong! So I must
have went in the hospital three times for that alone and I would stay for extended periods of time.
Other times it was because I was having some kind of nerve problems in my leg. They couldn’t
figure that out either. But you know that was par for the course for me. That they didn’t know was
nothing new! (laugh) By that time I was like, “Doctors don’t know didley squat!” You know?
(laugh) … In my generation we grew up thinking doctors were like miracle workers. They could
fix everything. They could feel for this, they had a feel for that… (laugh) Over that period of time,
I was totally disillusioned.
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The Diagnostic Event: Passive and Active Disclosure of Diagnosis
“But it took several years before I was ever diagnosed. They just told me I had chronic fatigue and it was
just overwhelming [breathes out]. You know?” —Kenny
The diagnostic event can be divided into two distinct types of diagnosis:
preliminary and definitive. Preliminary diagnoses were usually given to women with
symptoms that overlapped other diseases (fevers, muscle pain, joint pain/inflammation,
etc.), negative or low positive test results, and generally less severe disease (no organ
involvement). Definitive diagnoses were given to women with more severe symptoms
(organ involvement) and positive test results. Two mechanisms were used to disclose
diagnosis: active and passive. Active diagnoses were given in-person during the clinical
encounter. Passive disclosure occurred in three instances where diagnoses were recorded
but not-actively shared. Both preliminary and definitive diagnoses were actively and
passively disclosed. Preliminary diagnosis was a salient event since it marked a lessening
of diagnosis uncertainty. However, as time passed the salutary effects of preliminary
diagnosis faded and diagnosis uncertainty returned. Regardless of preliminary diagnosis,
the more time preceding the definitive diagnostic event the greater was its importance.
The next section discusses the nature and consequences of preliminary diagnosis and the
impact of passive and active disclosure of diagnosis on the women.
Nature and Implications of Preliminary Diagnosis
Preliminary diagnosis marked a significant turning point for the women seeking
biomedical care. Once lupus was suspected, treatment strategies shifted to include first
line lupus treatment modalities like NSAIDs in combination with other anti-inflammatory
drugs like plaquenil. Symptom clusters which included organ involvement prompted the
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use of disease-modifying drugs like prednisone. Most women with mild to moderate
disease were treated in this manner and experienced significant symptom relief.
Preliminary diagnosis was usually given as a stop-gap measure to decrease patient
anxiety and to initiate treatment with pharmaceuticals to decrease patient suffering. For
the physician, a preliminary diagnosis gave them the ability to treat while monitoring
disease progression and looking for more conclusive evidence of pathophysiology. The
women understood preliminary diagnosis to be a way to get care while waiting for a more
definitive diagnosis. Sometimes the event was accompanied by a description of a
spectrum of possible diagnoses (of which lupus was one). More often lupus was
specifically mentioned as the most likely possibility. When this occurred the diagnosis
took on special significance given the uncertainty associated with past diagnoses.
Denise was given a preliminary diagnosis and then followed for one year before
her symptoms worsened and a more definitive diagnosis was possible.
So I rushed to the clinic and my doctor was on maternity leave. But I was seen by a resident who
was pretty alert and astute and I told him about the number of allergies that I’d just developed. He
said, “Miss Denise, I don’t think you have all these different diseases. I think you have something
called lupus.” He explained to me that it was called the great masquerader and why. He said that
he was going to refer me to a rheumatologist; which he did. So I went to the rheumatologist and I
said that the internist told me that I probably had lupus. He said, “You just don’t come in and
declare you have lupus, you have to go through blood tests and a period of observation and
scrutiny.” He was very nice though. He said, “I'm going to take the initial tests and if they show
that you may be inclined to develop lupus, then I will follow you for a period of time and we’ll
see.”
For most women preliminary diagnosis prompted initiation of coping behaviors
like research (reading of written materials), conversational information gathering or
support group attendance. Preliminary diagnosis was a memorable event since it
decreased diagnosis uncertainty. However, in some cases the benefits of preliminary
diagnosis tapered over time. As symptoms shifted from one thing to another, additional
diagnoses were considered and uncertainty reappeared.
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After Mandi was given a preliminary diagnosis, her symptoms changed. As a
result, her diagnosis of lupus was called into question and she was evaluated for multiple
sclerosis. The fact that her doctor wanted to continue documenting her case in order to
come up with a more definitive diagnosis was particularly frustrating.
K: So does the rheumatologist think you have CNS lupus?
M: No.
K: Do you think you do?
M: At this point, I don’t know. It’s all so confusing, these autoimmune illnesses... Because like at
the end of last year, my ANA is low, I still have anti-SM and SED rates [that] are super low,
complement is almost normal. So, for me, for all practical purposes I was in remission because
I’m not on steroids anymore. I’m not on Plaquenil anymore. I’m just on things for my muscles and
herbs and then my weight.
K: You still have the joint and muscle pain?
M: I still have joint and muscle pain. Also, in the course of all of this, I had a bout of severe
vertigo and problems with walking. I had an MRI and a spinal tap because at that time they
thought that I might have MS. They found I have hematomas in my brain. They don’t know where
they came from or how long they’ve been there, if they’re part of the whole process or not… My
neurologist said, “Those things, they could be interfering with your body functions.”
K: Like the drooping eyelid and the visual disturbances?
M: He said it’s possible. That’s one of those [things] that they don’t want to tell you… Because
you could be [having] a relapse in symptoms just having one of those. Or it could be this. Or it
could be this! But they won’t say, it is this or isn’t. Just kind of keep going, you know? Got to
keep documenting the symptoms and so forth.
Mandi’s concern over her physician’s willingness to tell her what was going on was
based on past experience. Like many other women, she found it frustrating that her
physician would not share his ideas about potential diagnoses.
Although a more definitive diagnosis may have been preferable, preliminary
diagnoses offered benefits including potential symptoms relief, partial validation of
illness experience, and potential legitimation of suffering (depending on the woman’s
willingness to share the preliminary diagnosis with family, friends and colleagues). Some
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women chose to consider their preliminary diagnosis as definitive, thereby cutting short
continued diagnosis delays and opening avenues for support.
After Sally received a preliminary diagnosis, she was put on plaquenil and a short
course of prednisone to lessen her symptoms. When her symptoms did not improve she
took prednisone periodically for two years and then daily for three more years. After
eight years of NSAID, plaquenil and prednisone use, her diagnosis was still preliminary.
In order to deal with the diagnosis uncertainty she adopted the preliminary diagnosis as
the only logical explanation for her symptoms.
K: Did he put you on Prednisone after he gave you your official diagnosis?
S: I don’t really know if he would even still agree that it’s an official diagnosis?
K: Really?
S: Yeah.
K: Why do you think that is?
S: Because sometimes he calls it lupus and sometimes he calls it mixed connective tissue
disease…
K: How do you deal with that?
S: I just have decided in my own mind that that’s his problem. (laugh) That it doesn’t fit anything
else, that this is lupus. My internist feels that way as well…. Probably the last two years he
(rheumatologist) will say that it is lupus. But I mean for the first five years he really would
vacillate between the two. I think that he doesn’t want to give that label to anybody because in his
mind it’s a debilitating thought and he doesn’t want to put that with you until he absolutely has no
choice. I think that lupus masks so many other different things that it’s a very difficult thing to
diagnose.
Sally understood the diagnosis challenge that lupus presented. Her understanding
however, did not stop her from accepting the preliminary diagnosis as definitive. Her
acceptance of it may have been due in part to her internist’s support, but nevertheless, her
belief in the diagnosis was certain. Adopting a preliminary diagnosis as definitive was a
common strategy used by the women to decrease diagnosis uncertainty and initiate social
acceptance by means of legitimizing diagnosis. Even though her diagnosis was
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preliminary, June chose to attend lupus support group meetings. Unlike Sally, the
preliminary diagnosis did not offer her the legitimation she sought. In spite of the fact
that lupus support group meetings were open to anyone, she confided that she did not
disclose the preliminary nature of her diagnosis in order to avoid feeling like an outsider.
Women who had been searching for years for a diagnosis often described their
preliminary diagnosis as more definitive than it might have been. After discussing with
Rhonda her first diagnosis of lupus, I became confused because she kept referring to a
diagnosis of mixed connective tissue disease. In order to clarify the status of the
diagnosis, I asked:
K: And then so what moved you into a more definitive diagnosis of lupus?
R: It has been very gray all these nineteen years. Only within the last two or three years, because
the picture of lupus actually come back. Now they’re saying - I saw one in one of the brochures
there is such a thing called lupus myositis. So, that is more definitive now in terms of me having
not just lupus but I have lupus myositis.
Rhonda’s history of fibromyositis coupled with her interest in delineating a diagnosis,
may have led her to conclude that she might now how lupus myositis. I was unable to
ascertain whether her doctor suggested the diagnosis. Nevertheless, the desire to
understand illness experience in order to get treatment was a universal desire.
Active Disclosure of Diagnosis
Active disclosure occurred for both preliminary and definitive diagnoses. Active
disclosure involved verbal acknowledgement by the physician that either lupus was a
possibility or lupus was definite. “You have lupus” was the most common phrase used to
describe definitive diagnosis. The language of preliminary diagnostic events varied
widely depending on how tentative the diagnosis and the salience of the event for the
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woman. Descriptions of definitive diagnostic events usually included references to the
ACR criteria or lab results.
Finally I went to Dr. ____ and he spent like three hours with me on my first appointment. He said,
“You have lupus.” The thing is I had nine of the eleven criteria. I thought I had it but I couldn’t get
anybody to diagnose me. In the mean time I was getting sicker and sicker. Marian
I was having really weird problems with my blood pressure. It would be normal and then all of a
sudden it would spike and just be very erratic as far as what was going on. So that lead to doing
other things, plus my joints were really swollen and having a lot of kidney infections. Then in
October they finally did all the testing and they said, “You have lupus.” Cookie
“Yup, your ANA test came back positive, so you have lupus.” I’m like, “Oh my gosh.” Valerie
[They did] blood tests. I don’t remember exactly what they were… he was saying he was 99%
sure that was what it was but he was just going to have to wait for the blood test. Then I would say
about within a week later he called me back and told me, “Yep, it’s definitely lupus and it’s
Sjögren’s syndrome.” Along with it came rheumatoid arthritis, Raynaud’s disease and what else
did I have? Oh, hypothyroidism. Antia
Passive Disclosure of Diagnosis
There were three instances of passive disclosure. Two concerned definitive
diagnosis and one, preliminary diagnosis. Josette’s definitive diagnosis came in the form
of passive disclosure. Since her diagnosis was not clear based on what her doctor said in
the clinical encounter, she decided to get confirmation on her own.
…Got back home, went and saw the rheumatologist: “From everything it seems to point to the fact
that you have lupus.” You know, about as non-committal and committal as you can be at the same
time. That’s what a lot of people will get. I even called back and talked to the business office and
asked them what did he put on my chart. Did he put that I have lupus or did he say suspected
lupus? He (office staff) said, “You have lupus.”
Josette believed the diagnosis was definitive based on what it said in her chart regardless
of her physician’s ambivalence during the office visit. At the time of the diagnosis, her
symptoms included unexplained infections (sinus, lung), blood clots in her lungs,
hypothyroidism, and blood and protein in her urine. A year after she was diagnosed she
developed pleurisy, pericarditis, and costochondritis (inflammation of the lining of the
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heart, lungs and rib cage, respectively). Given Josette’s symptoms a year later, it is
unlikely any question remained about the veracity of the diagnosis.
Initially Darcy’s diagnosis was mixed connective tissue disease with features of
lupus. Over time her diagnosis changed. She wasn’t told about it. Instead, she noticed the
change in diagnosis on her doctor’s bill.
K: When did you get that initial diagnosis?
D: Let’s see, it was on probably late in ’94.
K: Did Dr. ____ discuss with you the possibility that it could be lupus? He approached it, just
basically to try and figure out what you were going through right?
D: Well he gave me a piece of paper and he showed me all the different types of autoimmune
diseases… [He] said, “You know there’s this and there’s this and there’s this. These are
symptoms. We’re going to rule yours out. We’re going to call it connective tissue disease…” Then
one time when I was in there, I looked at my receipt on the way out and it said “lupus.” I was like,
“Oh, we changed?” He goes, “No, not really, it’s just becoming more clear what your diagnosis
is...” He said my symptoms were becoming a little more classic than [what] they had been when I
was there earlier. In ‘94, it was the connective tissue disease. It was probably not until a couple of
years later that he started calling it lupus.
Although a rare occurrence, Gayle was given a preliminary diagnosis but never
told about it. When she moved to Atlanta in 1991, she requested that her medical records
be sent to her new doctor. When she saw the records, she realized that her doctor had
tentatively diagnosed her in 1976. When her rheumatologist treated her in 1991 with the
same medication that her first doctor had fifteen years earlier, she realized that she had
been treated previously for lupus.
G: I think it was about fifteen years ago… I kept losing weight and I couldn’t understand what it
was because I wasn’t in any pain or anything. Then I started getting tired. So when I went to the
doctor they did all these tests but the tests came back negative. Then it’s the strangest thing
because when I finally got the medical records, she had on the medical records possible lupus. But
she didn’t tell me that and I was shocked.
K: Fifteen years ago?
G: Yeah. I was shocked because she said the lupus test came back normal. Because when she first
said, “Well, you might have lupus” she was telling me about it. When the tests came back, she
said they came back negative. But later on, after I moved here and everything, I realized that I had
it - that’s when I thought something was wrong with me. So she put me on high doses of
Prednisone and then I went back to work. I got sick again so I had to stop working. She treated me
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again with steroids, prednisone. Little did I know I had lupus then but that’s [what] she was
treating me for. I’m not sure but she never did tell me what I had. Like I said, when I saw the
records, that’s what I had. I don’t know why she didn’t tell me.
Gayle’s tests in 1976 may have been normal but by 1991 the tests were positive and her
rheumatologist in Atlanta diagnosed her with lupus. Arriving at a tentative diagnosis and
then choosing to treat is a common occurrence. The most likely explanation for
nondisclosure was the physician’s uncertainty about the original diagnosis.
Reaction to Diagnosis
The unifying feature of the women’s reactions to diagnosis was their complexity.
They included a wide variety of responses which overlapped and complemented each
other in multifaceted ways. This section attempts to disentangle the web of meaning
while simultaneously maintaining the integrity of each reaction. In order to achieve this,
each reaction was coded individually. Table 3.4 lists every reaction to diagnosis and the
number of women who experienced it. The most frequent reaction was relief followed by
being scared, fearful, frightened, nervous, or anxious. Once each reaction was coded, the
codes were tabulated across the entire sample to identify patterns. Table 3.5 lists the
reactions to diagnosis by category and number of women. Five major types of reactions
were identified: emotional, legitimating, existential, coping, and disease management.
Although the categories are not mutually exclusive, they serve an important analytic
purpose. By examining diagnosis reactions by category, the similarity across reactions
becomes evident and their complexity more manageable. Each sub-section below
presents a small sample of quotes reflecting the most frequent reactions in each category.
Important uncommon reactions are also included in order to capture the breadth of the
reactions overall.
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Table 3.4 –Reaction to Diagnosis by Number of Women
Relieved (Happy, Excited, Thankful)
Scared/Fearful/Frightened/Nervous/Anxious
Naming/ End Uncertainty/Validating
“I finally knew what was wrong”
“I knew something was wrong with my body”
Death – “Thought I would die”
Research – Need to learn more about it
Not Crazy – “I know now I’m not crazy”
Social Comparison – Knew someone with lupus
New Experience –“Knew nothing about it”
Mastery – “I’ll handle it”; “It won’t take over my life”
Cried/Tears
Disbelief/Denial – “I don’t or can’t have it”; “Wanted different diagnosis”
Upset (Messed-up, Turmoil)
Shocked
Neutral –
“I wasn’t afraid, I was okay”
“I was nonplused due to my depression”
“I didn’t know what to think or feel”
“I was numb”
Worried about disease complications (excluding death)
Expected it/Knew what diagnosis would be
Chronicity/No cure for lupus
Get Cured – Believed cure was possible
Compliance – Need to follow doctors orders
Devastated
Disclosure – Decided who to tell/not tell
Loss of Self/Normalcy – “I’m/things never going to be the same again”
Get Treatment – “Now I can get some treatment”
Worried about treatment complications
Questioned – “Why me?”
God/Religion - Coping
“I thought God would heal me”
“I made a promise to God to help others if he let me live”
Sad/Grief
Hard/ Difficult
Hysterical
Medical Racism –
“Doctors who don’t know what’s going on diagnose AA women with lupus”
Re-evaluate Self – “It’s a blessing… puts your life into perspective”
Misc. – “I was too sick to be shocked”
Number
16
12
12
11
10
9
8
7
7
6
6
6
5
5
4
3
3
3
3
3
3
3
2
2
2
2
2
2
1
1
1
1
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Table 3.5 – Reaction to Diagnosis by Category and Number of Women
Emotional Response
Relieved (Happy, Excited, Thankful)
Scared/Fearful/Frightened/Nervous/Anxious
Cried/Tears
Disbelief/Denial – “I don’t or can’t have it”; “Wanted different diagnosis”
Upset (Messed-up, Turmoil)
Shocked
Neutral
Devastated
Sad/Grief
Hard/ Difficult
Hysterical
Misc. – “I was too sick to be shocked”
Legitimating Response
Naming/ End Uncertainty/Validating
“I finally knew what was wrong”
“I knew something was wrong with my body”
Not Crazy – “I know now I’m not crazy”
Expected it/Knew what diagnosis would be
Number
16
12
6
6
6
5
5
3
2
2
1
1
12
9
3
Existential Response
Death – “Thought I would die”
Questioned – “Why me?”
11
2
Coping Response
Research – Need to learn more about it
Social Comparison – Knew someone with lupus
New Experience –“Knew nothing about it”
Mastery – “I’ll handle it”; “It won’t take over my life”
Disclosure – Decided who to tell/not tell
Loss of Self/Normalcy – “I’m/things never going to be the same again”
God/Religion - Coping
Re-evaluate Self – “It’s a blessing… puts your life into perspective”
10
8
7
7
3
3
2
1
Disease Management Response
Worried about disease complications (excluding death)
Chronicity/No cure for lupus
Get Cured – Believed cure was possible
Compliance – Need to follow doctors orders
Get Treatment – “Now I can get some treatment”
Worried about treatment complications
Other Responses
Medical Racism –
“Doctors who don’t know what’s going on diagnose AA women with lupus”
4
3
3
3
2
2
1
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Emotional Responses
Emotional responses were the most frequent type of reaction. Regardless of
category, the emotional valence of the diagnostic event was discussed in every narrative.
Table 3.6 lists each reaction to diagnosis and the emotional response coupled with each.
Some women named only one or two emotions while others named as many five or more.
The most common pair was relief with naming the diagnosis, followed by relief over not
being crazy. Aside from relief (happy, excited, thankful) most emotional responses were
negative. Death prompted the widest variety of emotional responses including being
scared, upset, shocked, devastated, hysterical, in tears, and in difficulty. Fear of dying
was frequently mentioned in conjunction with social comparisons made to deceased
relatives, friends, or acquaintances with lupus. Fear of the future was most often
expressed in relation to potential disease complications. Since few of the women at the
time of diagnosis were aware of possible treatment complications, only two women
voiced concerns over that issue. References to being “nonplussed”, “okay” or “calm”
were coded as neutral. Two of the five women who expressed no emotion were expecting
the diagnosis. Self ascribed denial or disbelief in the diagnosis was coded as denial.
Upset, shock and sadness were expressed over the chronicity (incurability) of lupus.
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Table 3.6 – Reaction to Diagnosis by Emotional Response1
Not Crazy
7
Death
4
3
4
2
4
2
1
Social
Comparison
Treatment
Complications
Disease
Complications
2
Self-Research
1
New Experience
2
1
1
1
1
1
1
1
1
1
1
1
2
Chronicity/
Incurable
1
Get Cured
1
1
1
1
Disclosure
1
Loss of Self/
Normalcy
Hysterical
1
1
Expecting the
Diagnosis
Get Treatment
Sad/ Grief
Devastated
Neutral
Cried/Tears
Shock
Upset
6
Disbelief/ Denial
10
Hard/ Difficult
Naming/
End Uncertainty
Scared
Relieved
Emotional Response
1
1
2
1
This table reports all emotional responses by category. Since the same emotional response was expressed/felt across different
reaction categories, the total number is higher for some emotional responses than the numbers reported in Tables 3 and 4.
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Legitimating Responses
Not Crazy “I know now I’m not crazy”
Melanie, Mandi and Marian expressed their relief at being told that they had lupus
in the quotes below. After visiting between three and more than eight doctors, their
diagnosis delays ended at five years, six years, and six months, respectively. The relief
they expressed over not being crazy is directly proportional to the number of times they
were either told explicitly that their problems were psychosomatic or their subjective
experiences were delegitimized through the use of objective diagnostic tests.
K: How did you feel when the physician told you?
M: Actually (breaths out) I was relieved because it sort of made me realize that I really wasn’t
crazy and that I hadn’t made this stuff up in my own mind. That there was a real entity. That there
was something that they could put their finger on that was causing all of these symptoms. So I was
pretty much relieved. A weird relief but a relief. Melanie
I was relieved when the second person (doctor) said that “I wasn’t crazy. It wasn’t postpartum
depression. You really are hurting. I’m going to try to do something to stop you from hurting.”
Mandi
He just turned to me and said, “I don’t understand why you’ve been passed around so much. It’s
very, very typical. I see it every day. You have lupus. You have a pretty good case of it and you’ve
had it for a long time.” I just burst into tears. He goes, “Okay, well, what is that? Is that happy? Is
that sad? Is that I’m going to die? Is it I’m worried?” I said, “No. I think it’s happiness because
you didn’t tell me I was crazy.” That’s exactly what I said to him. I said, “You know everybody
else has been telling me all this is in my head. You didn’t tell me I was crazy.” Marian
Naming
The naming of lupus as diagnosis was usually linked with the notion of relief.
This relief echoes the sentiments of the women above with the identification of a “real
entity.” Naming disease validated not only illness experience but also perceptions of
reality. It ended uncertainty over illness cause and offered hope about the future. After 10
years of waiting, Kenny expressed her excitement about the diagnosis, in spite of the
bewilderment of those around her. By naming lupus, she knew what “to fight.” Hope (1
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year) and Denise (10 years) were relieved to know what it was and that the mystery was
solved. Anisa (4 months) was thankful that it was lupus and not something else that might
have been worse.
The internist diagnosed it. It was such a relief. I was like “Yay!” People were going, “Why?” A
friend of mine said, “Why are you excited? It’s kind of perverted… [that] you’re excited.” I said,
“I am. At least I know I’m fighting something.” Kenny
…after listening to me for just a short time, he said, “Ms. Hope, I think I know what’s going on
with you… I’m going to take a test, a blood test on you and I want you to come back in a week
and then we’ll go from there...” I came back the following Monday. As soon as I got in there he
said, “You have lupus.” I was so glad that it finally had a name because I didn’t know what was
wrong with me. Hope
K: When he told you that he thought you had lupus, what was your reaction?
D: I was relieved to know that there might be a name for what I was going through. I really didn’t
know anything. You know my immediate reaction was I needed to go back and read that Essence
article. Because I was intrigued when he talked about it being the great masquerader. I was
looking forward to going to the specialist [since] it was identified. It wasn’t any mystery from that
point on. I was pleased for that and very relieved. Denise
I was really kind of thankful that they finally found something and that it wasn’t anything else.
Although I didn’t know at that time that this was just as bad as cancer or leukemia, almost as bad
as AIDS. When they walked in I almost said, “Thank you Jesus it’s not…” but I didn’t. I was just
real calm about it. Anisa
Expected it
Anisa’s calm over the diagnosis was partially due to how sick she was. By the
time she was diagnosed she was in an advanced stage of kidney failure due to the damage
caused by the lupus induced immune complexes clogging up her kidneys. Anisa knew
there was a possibility she might have lupus since her doctor discussed it with her before
she was admitted to the hospital for a kidney biopsy. Due to Anisa’s severe organ
involvement, she was diagnosed in four months.
K: When he told you, when he gave you the definitive diagnosis, he said you had…
A: He said, “You definitely have lupus.”
K: How did that make you feel?
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A: I had known that [there] was something pretty serious (laugh) going’ on. I knew there was
always the possibility of getting it. I wasn’t afraid of it. I was just, “Okay.”
Kate on the other hand searched about 6 years for a diagnosis. During that time she was
diagnosed with depression and hospitalized twice for psychiatric care. She was diagnosed
with fibromyalgia and was happy to have “a name” for what she was experiencing.
During her diagnostic odyssey one of her doctors mentioned that she might have lupus.
Kate’s mild symptoms and lack of organ involvement probably contributed to her
diagnosis delay. As soon as she heard about it, she educated herself. By the time the
diagnosis arrived, she was ready for it.
K: I know that was during the time when things weren’t going very well and the depression was
pretty bad, but how did you feel when he gave you the diagnosis?
I: (Sigh) I don’t know that I felt any different because I already figured it out. It had to be lupus
once I started studying about it. You know with all of the symptoms. Mine’s a problem that I
didn’t have that rash on the face and I didn’t have those really symptoms but I had everything else.
I didn’t have any kidney involvement or heart involvement so I figured that that’s what it had to
be. It couldn’t just be fibromyalgia.
Existential Responses
Death
Concerns about death and dying were not as important as validating subjective
experience. However, fear of death was common. Women most likely to express concern
were either misinformed about lupus, unfamiliar with it, or knew someone who had died
from it. Valerie was treated for skin rashes for one year by an allergist before she was
referred to a rheumatologist. Based on her own research, Valerie insisted that her allergist
“test her for lupus.” Valerie was 40 years old when she was diagnosed. I interviewed
Valerie in 2002. Even five years after her diagnosis, the negative impact of the event was
evident in her narrative.
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K: When you finally went back to the allergist and he tested you for lupus and the ANA came
back positive… How did you feel?
V: Honestly, they made a very big mistake. They did a poor thing for a doctor’s office. They
called me at work and told me that the doctor needed to speak to me on the phone. So, here I am
sitting at work and the allergist comes on the phone and says, “Yup, your ANA test came back
positive, so you have lupus.” I’m like, “Oh my gosh.” I just started crying because I’m like, “What
does this mean? Does this mean I’m going to die tomorrow? Does this mean I’m going to die next
week? Are my kidneys going to fail on me?” It was bad. I’m sorry. (voice quivering with emotion)
It was really very hard. (voice breaking up – crying) I was devastated. Because it was like, “I’m
too young!” I wanted a diagnosis but I didn’t want that diagnosis. I wanted to get rid of the hives
(crying).
Jackie was diagnosed in 1976. At that time there was little reliable information available
about lupus even among physicians. Her fears about death were due to the
misinformation given to her by the diagnosing physician. For other women outdated
medical books were a problem as they tried to educate themselves.
K: Who did you get your diagnosis from? You went to the dermatologist…
J: The dermatologist first and then he sent me to like a medical doctor. ‘Cause like when the
dermatologist first told me I had lupus, he told me I wouldn’t live 5 years. So that had me crying
every day. [K: Gosh!] I cried every day until I finally went to the medical doctor. He said, “Who
told you this?” He just sort of shook his head… and he couldn’t understand why that doctor even
said that. I just got a different outlook once I went to him. I started thinking really different
because before then I thinking that I wasn’t going to live to see my daughter finish school.
When Vicky was diagnosed in 1974, at the age of 28, she was already in kidney failure. It
took two years for her to be diagnosed. When her doctor told her that she had lupus, she
became “hysterical.”
I was like screaming and everything. The doctor said, “Okay, calm down, calm down, calm
down.” I think she wound up telling me I didn’t [have lupus]… this was not my rheumatologist,
this was a nephrologist. She was, “You don’t have lupus, you have lupus-like symptoms…” or
something - because I was so hysterical… I think she had patients in the office and I was just
really going off. I said, “Oh no, I’m gonna die! I’m gonna die! I’m still too young to die!” You
know, I was yelling and everything.
Coping Responses
Social Comparison
Lack of knowledge about lupus coupled with social comparison caused a number
of women to react with fear about the future. Vicky’s reaction to the diagnosis was
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prompted by the knowledge of her cousin’s death from lupus. When she heard the news
she thought she was going to die.
Well at some point when they told me I had lupus, I was hysterical because I had a cousin by
marriage who died from lupus when she was 22. I didn’t know anything about lupus, [so] I
thought when you got lupus you died (snapping fingers).
Given the knowledge that her grandmother died from lupus, Cicely also had a hard time
with her diagnosis.
K: And how did you feel when you got the diagnosis? Not physically, but I mean, what did it
mean to you?
C: Emotionally? Well, the only thing I really knew about lupus was my grandmother died very
young and it was only a year after being diagnosed. The college infirmary doctor told me I had
five years to live. (laugh)
K: Just like that?
C: …So that kind of just really messes you up when you’re told that you have five years to live.
Laura was unfamiliar with lupus when she was diagnosed four years after her symptoms
started. Her reaction to the diagnosis was shaped by learning that an acquaintance was
“dying from” lupus.
K: … when he gave you your diagnosis, how did that make you feel?
L: Scared. Very scared. At the time my husband’s friend that he rode to work with was married to
a woman that had lupus. We were going to a Christmas party. She was in tears and everything and
I didn’t realize why she was in tears. We got to the party and I found out that she had lupus and it
was in her internal organs. She had just gotten out of the hospital and had to go back in right after
the party but she wanted to make sure that she had us all together for this party. Little did I know
how damaged she was - this would be her last Christmas party. It’s hard to find out you have a
disease you know nothing about and here’s this beautiful woman that’s dying from it. So
immediately you’re just overwhelmed by [it] and tongue tied too. That was the worst of it because
I did not know anything. It wasn’t explained to me. It was just, “You have lupus.” “What is
lupus?” I had no idea. All I knew was this friend of my husband’s is dying from it. So I was in
complete shock, tears, my husband is all upset. That was my first dealing with lupus.
Disclosure
Soon after diagnosis, decisions are made about who to tell. For some, reactions
immediately turned to loved ones and consideration of the impact the diagnosis might
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have on them. Initially Bailey thought of her mother and how sad she would be. Later she
decided with the family who to share the diagnosis with.
K: When you went home that weekend to see your family and you’d just found out that you have
lupus, you said that they were thrilled. And I know you were sarcastic. How did they take it? You
were worried about your mom feeling sad.
B: Yeah. They were fine. Well, they all had known for a few months that I really was not well. I
was failing. So, we didn’t tell anyone. I kept it a secret other than the immediate family and then
slowly I told my aunt and uncle who had sort of helped me.
Decisions about disclosure were also made based on the knowledge that family
members had about lupus. When Maggie was diagnosed she decided not to tell her
mother because her sister had died from lupus. Maggie’s weight gain due to prednisone
created problems for her as a result.
You know when I started out with this I was a size, junior 11, because that’s the size I wore. Now
I won’t tell my size now! (laugh) But the Prednisone blew me up. I think I was just as distressed
about my looks as I was about being ill. Because I didn’t tell my mom initially. She knew I was in
the hospital. She didn’t know what was wrong because we had just lost our sister. I didn’t want to
tell her over the telephone, so I waited for about a year. So when I went to see her in Mississippi.
When I got off the plane, she didn’t know who I was (laugh).
Loss of Self
The biographical disruption caused by diagnosis was beautifully articulated by
Darcy. Aware of the chronicity of the illness, she mourned for the loss of her health and
sense of normalcy. In spite of her loss of self, she expressed acquiescence about its
progressive nature. It took three years for Darcy to be diagnosed.
K: I’m interested in knowing how you felt when you got your official diagnosis. When you saw it
on the receipt, how did you feel? What went through your mind?
D: I knew it was chronic disease. I knew that it can be a very serious disease. The medical
textbooks have labeled it a fatal disease - at least my nursing textbook did. So that was kind of
scary. I think I went through some of the traditional phases that a person with a chronic illness
goes through. Some of the grief type phases. You know, where you just kind of mourn for your
health... just that I’m never going to be the same again. I’m always going to have [it]. This is not
something that is going to go away. It’s something that will probably get worse… It probably will
progress hopefully slowly. But it’s something that someday I will die from or as a result of
complications, if the diabetes and the hypertension don’t get to me first.
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It took three years for Lenore to get diagnosed. Within a very short period of time she
was hospitalized twice. Once for a life threatening blood infection caused by the port in
her chest and the second time for kidney failure.
K: So you said that you were feeling devastated.
L: Yeah. I was feeling so bad because I had just graduated from college and I had
just gotten a job, my first teaching job. I had started graduate school working on
my masters. I just thought, mm-hm, “This is when everything oh! get’s started.”
Then I just “Poof!” got hit (clapping) like that. It was really hard for me ‘cause I
wasn’t expecting it really.
Mastery: “I’ll handle it”
A number of women talked about their determination to deal with the diagnosis in
an active manner. This was usually done by expressing their commitment to coping with
whatever challenges lie ahead. Bailey’s attitude about coping with lupus was upbeat and
self-confident.
K: When your doctor called you, before you left for that trip and told you that you had lupus, what
were the emotions that were going through your mind and your heart? How did it affect you?
B: Aside from the initial swearing… I knew something was wrong with me so it was validating.
Somehow I’m very fortunate. I think I have very good coping skills because I just figured I’d get
on the case and handle it. She told me that it was “incurable but not terminal” - her words. That
was a good thing to say to me. Maybe she shouldn’t have said incurable because my first thought
was I have an incurable disease. Oh my God! You know? But life is incurable. I felt now I know
why I’ve never felt well…[I] just thought, well, I’ll just have to handle this.
Cicely had a similar reaction. However, instead of focusing on internal reserve or
personal coping skills, she chose to cope by following her doctor’s orders. Her “I can
beat this if I do what I’m told” approach was employed by other women. Women chose
this strategy for two reasons: 1) diagnosis delays postponed treatment and therefore
compliance with medical regimes increased as a result; and/or 2) most believed that by
following the doctor’s orders they would have the best chance for survival (“being fine
with this”).
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I’m a very competitive person and I just was like, “Forget this. This is not how it’s going to be.
I’m going to do what they tell me to do. I’m going to do exactly what they tell me. I’m going to
make sure there’s absolutely no doubt that I’m going to be fine with this.”
Research
Another way to cope was to learn more about lupus. As previously mentioned
many women initiated research on their own after their doctor mentioned lupus for the
first time. Since physician interest in patient education was sometimes limited, some
women took matters into their own hands. Amelia was surprised about how well the
puzzle pieces fit. She wasn’t convinced about the diagnosis until after she did her own
research.
When she said it I was shocked but I wasn’t devastated or anything. In fact, if anything, it was
kind of a relief because it all made sense then. I didn’t really know what lupus was… But when I
left there, I immediately went to the library and I did all kind of research to find out. Once I got
little pamphlets on it and I started learning what the symptoms were... There’s a little thing that
tells you what the…[K: Is it the checklist?] The checklist. It said you have [to have] eight of the so
many? Well, I had all of them. I think I had all of them except for maybe one. Then I said, “Okay,
I have it.” I knew I had it wrapped once I started reading it and then it all made sense. It was like a
puzzle that all fit in.
Laura’s research lead her to the realization that not every case of lupus was the
same. For that reason, she was thankful and relieved to learn that her disease was not as
serious as she thought.
I went to the library and read. [I] found out that it wasn’t what I thought it was. [I] went to the
computers and did a lot of research and found out that it didn’t affect everybody the same way.
Then I found out that my organs were not affected and that I was a very lucky person. [I] met a
few other people and by doing this I found out that it wasn’t as devastating as I thought it was
going to be.
While Vicky was convinced she was going to die she made a deal with God. The deal
gave her hope for the future and prompted her to learn more about lupus.
… I said, “If God lets me live through this, I will dedicate my life to helping other people with
lupus.” So I called up the Lupus Foundation, I was still in the hospital. They sent me some
material and I read up on it and then I realized, “Oh, I may not die.” (laugh) So I have a chance.
After that and when I got out of the hospital, I went to a lupus office (giggle). I thought I had to
keep my promise.
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Disease Management Responses
Chronicity
The incurability and disability associated with lupus raised concerns for many
women. For those unaware of the disease sequelae, the diagnostic event became difficult
as their doctor informed them about lupus. Didi was symptomatic for 10 years before she
was diagnosed. Unlike others, she was not given a preliminary diagnosis for her mild
symptoms. Instead, the chronicity of lupus was explained to her during a clinical
encounter which didn’t go very well.
K: When you first got diagnosed in 2002 and the doctor told you that she thought you had lupus,
what did you think? Did you know anything about it? What was your first reaction?
D: I’d heard about it and it was shocking. I asked her, “What is it?” She told me some things about
it. I was like, “Okay well, what do I have to do to have it go away? (laugh) “What’s the cure for
it?” She’s like, “There is no cure.” (laugh) I’m like, “Okay, so I’m gonna walk around with joint
pain?” She was like, “No, in some of those people it leads to death.” I was like, “Are you tryin’ to
tell me I’m gonna to die?” (laugh)
The chronicity and invisibility of lupus were frequently discussed at the same time as
coping strategies. Although some women brought up these issues in reaction to diagnosis,
more talked about chronicity and invisibility in reference to post-diagnosis coping
challenges. Since diagnosis delays were common, the women were more focused on
getting a diagnosis than on formulating coping strategies.
Disease and Treatment Complications
For women familiar with lupus either through a personal contact or through
independent research, concerns over disease and treatment complications arose. Valerie’s
concerns were linked to her work at the hospital. Her fear of potential complications
related to kidney involvement played into her feelings of devastation in learning about
her diagnosis.
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I was very, very devastated. I was concerned (voice quivering). My biggest concern was working
in the O.R. (operating room), I saw a lot of people come through for the vascaths (dialysis
catheters) and the graphs for dialysis and all that. Frankly that’s my biggest fear that I will end up
going on dialysis because I’m not a person who likes to be confined. Even if I’ve ever been in the
hospital, I need to get out of there because I go crazy. I just can’t imagine having to do dialysis. I
think that was my biggest fear. I was very upset.
Get Cured or Get Treatment
The flip-side of concerns over disease and treatment complications were optimism
about treatment options and/or potentially getting cured. Mandi’s joints were extremely
painful until her doctor gave her some Cortisone injections. This gave her hope that her
other symptoms might also soon vanish. Mandi assumed that like sarcoidosis she could
take some medication and go into remission. Soon after her diagnosis she learned that
that was not the case.
I was just relieved especially when the Cortisone shots started working that I just really had some
decrease in pain. Because that was all I wanted - just somebody to put the pain down a little bit
and help me maybe not be so tired. …that’s all I wanted - just a little relief. That’s all I wanted. I
was relieved at least maybe to have something that was going to help me. Then they gave me
some medication… Because kind of like with sarcoidosis, I did the steroid thing and it
disappeared. When I heard the diagnosis I thought it was something like that. You just kind of take
the medication, get better, go into remission, and then it’s good to go.
Rhonda’s coping strategy was to ask God to cure her. She believed that if she ate right,
with God’s help, she would be cured. When this didn’t happen she sank into a deep
depression.
When I was first diagnosed I was upset. Then I was like, “Ah, God’s going to heal me.” So I
changed my diet and I did everything. I was really under the impression that God was going to
heal me. I’m sorry, not heal me, cure me… I was like, “Oh I’ll get over this.” That was my first
thought… But when that didn’t happen, I started having problems, emotional problems. Then I
started having depression problems. I’ve had depression problems over the years, clinical
depression. I was actually suicidal.
When Rhonda’s cure was not forthcoming, she sank into a deep depression requiring
medication. Her initial reaction to the chronicity of lupus was to hope that it was
reversible based on her chosen coping strategy. Some coping strategies are more
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successful than others. Didi’s outlook was more practical, she hoped to get treatment
from her doctors.
When I was on my way to the doctor I was prayin’, “Please let them find somethin’.” When she
told me, it was scary but a relief. Because it’s like finally I know what’s wrong with me. It’s not in
my head. I was okay. I was able to accept it... ‘Cause I was like now I know what I have. Now I
can go for treatment.
Conclusion
In an issue of Medical Student JAMA (2001), a group of articles was published
about the challenges physicians face in recognizing and categorizing disease. The articles
suggested that the “concept of disease is inherently elusive and ambiguous” and
acknowledged that classifying and labeling disease had implications beyond the clinical
encounter (Magid 2001:88). One article acknowledged that the disease entity model of
biomedicine worked well for infectious diseases, some cancers, and poisons because of
the “classic” symptoms they generate and the identifiable (usually single) etiologic agents
involved (Chiong 2001:90). The disease entity model of disease causation and cure sets
the expectations of physicians and patients (Chiong 2001). Physicians hope to solve the
mysteries of illness by naming disease based on scientific fact and patients look to
physicians for answers. Not all diseases fit into the acute model of illness. Although lupus
is considered an organically based disease, its overlapping signs and symptoms, unknown
etiology, lack of definitive laboratory testing, and chronicity challenges not only
biomedical objectivity but the very basis of its curative paradigm. These characteristics of
lupus are not unique. Many other diseases share its diagnostic and curative mysteries.
Why is it then that biomedicine is not able to meet the needs of those effected by
such diseases? It has been argued here that biomedicine’s preoccupation with
objectifying subjective experience may be at fault. In the case of chronic illness, this
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priority leads to systematic disregard for lived experience and therefore, disrespect for
patients. In the case of women with lupus, there is ample evidence of the devastating
effects such blatant disapproval has on personhood and perceptions of self. This
orientation to the diagnosis of illness amplifies diagnosis uncertainty and generates selfdoubt. Women who challenge the status quo and attempt to shorten diagnosis delay,
either through self education or taking an active role in problem-solving, are rejected as
malcontents, malingerers, or “hypochondriacs.”
In his book, Medicine at the Crossroads (1993), Melvin Konner describes the
numerous problems facing the American medical system. Trust between doctor and
patient tops the list. It seems that the basic problem with biomedicine is a lack of trust.
The primacy placed on objectivity in biomedicine is not just a paradigmatic principle. It
has become the modus operandi of the physician in relation to the patient. The practice of
biomedicine is not a science, it is art. Therefore, valuing objectivity at the expense of
subjectivity, robs the physician-patient relationship of its trust. When the physician
distrusts the lived experience of the patient, the patient begins to distrust the expertise of
the physician. Konner (1993) suggests that the “patient-as-colleague” model may be one
solution for this problem. It’s goal is to foster “good rather than counterproductive
second-guessing of the doctor” and promotes “understanding of the limits of what doctors
can do.” Chiong (2001) proposes that new modes of characterizing medical problems be
adopted which go beyond the acute model of disease and conventional assumptions about
what the physician-patient relationship entails. Interjecting understanding about human
failings in the doctor-patient relationship might be one way to elevate the importance of
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lived bodily experience while at the same time demystifying the rationality of
biomedicine.
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Chapter 4: Beyond the Subjective Experience of Pain: Narrative and
Visual Descriptions of Bodily Suffering
Introduction
Pain was a ubiquitous feature of the women’s illness narratives. It was used to
describe the physical experience as well as the emotional and psychological sequela of
chronic illness. When asked to describe their experiences most women used language
easily accessible to those unfamiliar with chronic pain. The simplicity of the language
however obscured the deeper reality and untold impact of the lived experience of pain.
Researchers agree that the articulation of pain is problematic. As Scarry observes, there is
a rigidity to pain which resists and often shatters language (1985). This chapter explores
the meaning of pain by examining linguistic descriptions and visual representations of
pain. These characterizations are compared and examined in relation to current and usual
pain levels. The exploration reveals a diverse and often contradictory web of meaning
which surpasses the language of pain and clarifies the relationship between chronicity
and illness experience. Although chronic pain poses significant challenges to those
effected by it, ironically, its very chronicity may be the key to unlocking its mysteries.
Descriptions of Bodily Suffering
Narrative Description: The Language of Pain
Pain was an essential part of the women’s illness narratives. It amplified the
meaning of illness experience and drew on common understandings of pain. The women
talked about their experiences using a variety of descriptive language to characterize the
inexplicable, temporal, spatial, comparative and disabling nature of pain. What unified
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the language was the women’s singular interest in describing the pain experience so that
the listener could better understand it. What complicated this process was that although
pain “connects us to others through mutual susceptibility and common experience… [it]
is ultimately a subjective experience which even the most sympathetic observer is unable
to fathom” (Kleinman et al.1992). The women used a variety of linguistic and narrative
techniques to bridge the gap between subjective and shared understanding of pain. These
methods were identified through a systematic analysis of narrative passages which either
directly or indirectly concerned pain. Once the passages were identified, individual and
combinations of words, phrases, and sentences were grouped by similarity.
Six aspects or ways of characterizing pain were used:
1) Linguistic – word choice & metaphor use
2) Locational – physiological location
3) Temporal – symptom timing/periodicity
4) Comparative – self-comparison to another point in time
5) Disabling – cascade of pain response or disabling results of pain
6) Inexplicable – when words fail to capture experience
These ways of characterizing pain were used alone and in combination with each other.
Separate use usually occurred when pain was listed as one of the myriad unexplained
symptoms before diagnosis. Concurrent use was more frequent and usually part of
complex descriptions of pain. These descriptions fostered understanding in the listener
since embedded in their language were expressions and metaphors which drew on
common experience and suggested ways to identify with the subjective experience of
pain. The narratives revealed multiple layers of meaning related to the lived experience of
pain and its consequences.
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Reckoning pain
Before discussing the six ways women characterized their pain experience, a few
words need to be said about the process of using words and language to describe pain.
When an individual experiences pain the only means available to establish its existence in
a social context is through verbal and/or behavioral cues. These cues externalize
subjective experience and may prompt sympathetic responses from others. Transitory
experiences of pain are frequently satisfied by this type of social response. The
immediacy of the pain, the spontaneity of the response, and the transitory nature of the
experience are enough to satisfy - words are not needed. Externalizing the chronic pain
experience is different. Words are not only needed, they are necessary. When what was
temporary becomes permanent, verbalization and behavioral cues no longer prompt
sympathetic responses. Instead, responses ranging from disbelief to indifference result.
Faced with this situation, those in chronic pain learn to use words and language to
describe experience.
Although the women in this study articulated their pain experiences with apparent
ease, there was a deeper process at work which made this possible. That process involves
reckoning pain which is an evidentiary based process of estimation - a coming to terms
with subjective experience and a conscious choice about how best to articulate that
experience using words and language. The goal of the process is not only to characterize
what it felt like to be in pain but also to prompt understanding in the listener. This type of
understanding may include emotional responses like sympathy but its aim is deeper. Its
purpose is to establish the priority of subjective lived bodily experience over something
mutually shared or substantiated by objective “facts.” It is an understanding from the
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listener that grants the teller the benefit of the doubt and from the teller that grants the
listener the belief that they will comprehend what they are saying.
Reckoning involves two simultaneous processes: 1) mentioning pain; and 2)
describing pain. Mentioning or bringing up pain as a subject indicates that it exists. Its
existence must be established prior to or concurrently with its description. Pain is
mentioned most often as a symptom of illness and therefore helps to characterize the
nature of the illness experience. When mentioned, it signals a level of experience more
serious than the usual. After pain is mentioned, it is usually described so that the listener
can get a better idea about the extent and impact of the pain. Therefore, reckoning pain
not only establishes its existence but also the degree of suffering associated with it.
Linguistic Aspects of Pain
The majority of the pain descriptions were characterized by simple, straight
forward language about the extent of the pain. The adjectives most commonly used with
pain were “so”, “so much”, “bad”, and “real/really”. Other more descriptive modifiers
included “unbearable”, “severe”, “extremely”, “incredible”, “terrible”, “excruciating”,
“radiating”, “killing” and “screaming.” Words synonymous with pain or painful
symptoms were also used like “sore/ness”, “hurt/ing”, and “ache/ing.” Although
adjectives can be illustrative, they are limited by their definition and in the end provide
only two dimensional insight into the pain experience. Descriptive phrases, on the other
hand, open doors to deeper meaning. The most common descriptive phrase took the form
of metaphor. Metaphor is a powerful tool which expresses not only the type and extent of
pain but the suffering associated with it.
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When I get a crisis [flare], normally they start with the real high fever. It is just like an
uncontrollable high fever that I can’t control here at home. Then I have to end up going to the
doctor and sometimes from the doctor’s office being rushed directly to the hospital. I’ll be in pain.
It’s like my joints will be aching and it reminds me a lot of a person that would be in a sickle cell
crisis. Jackie
K: You were telling me about how it felt to have your symptoms which included pain…
D: How it felt? It felt like sinking into a hole. It felt very unnatural. I felt very helpless and
hopeless. It was just scary to know your body’s doing something and it’s just gonna take over. I
had nothing to do [but] go with it. That’s a scary thought. Doris
The pain…. I really was in tears. Then the next day, it was Thursday, I was just so sick I just
called in and didn’t go to work. I was feeling like I was dying. I even thought I saw the Grim
Reaper (giggle) standing over me. Anisa
Pain was often described using descriptors such as “killing” or “dying.” Death
was the strongest metaphor in the women’s linguistic arsenal to describe pain. The dying
metaphor represents a level of pain never before experienced which is often intolerable.
When used by Vicky, diagnosed for 30 years, the meaning of the metaphor took shape.
She understood what it meant to be in pain. When she chose to use death as a metaphor
for pain and suffering, there was little doubt about the seriousness of the circumstances.
V: When I first went into kidney failure they did the peritoneal (port for dialysis). But that tickled
my stomach. I couldn’t tolerate that. It tickled my stomach. Oh that hurt so bad. That’s why I let
them put the thing (port) in my arm... I felt like… Oh, I’ll just die. Just let me go ahead and die.
You know? (laugh) The hospitals they won’t tend to do that (laugh).
K: Let you die? It’s kind of against their mission (laugh).
V: Well, but it was rough - whew. It was rough.
Locational Aspects of Pain
The women’s descriptions usually mentioned the originating point or
physiological location of pain such as “joint,” “wrist,” “elbow,” “feet,” “heart,” “lungs,”
etc. Given the multiple and simultaneous systems that lupus effected, pain locations not
only moved from place to place but did so in an unpredictable manner. It was common
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for the women to simultaneously remark about their pain and then point out that its
unpredictability added to their suffering.
I never had the wrist and hand problem until ’98 and I never had this incredible pain through here
(demonstrating the location) or through the neck and shoulders really until ’97… My foot would
cramp and kill me. Sometimes underneath the balls of the feet it’s just terrible. It can show up
anywhere. I don’t know what that’s from, that kind of agony… in the ankles, the knees and the
wrists… Bailey
I had a lot of joint pain and it moved. It was on both sides. My joints got swollen, got red. Then
also during this time too, I was so tired. I was tired to the point of tears. I was just totally wiped
out… Danielle
Pain was often discussed in combination with tiredness or feelings of general malaise.
Since the inflammation which caused pain was related to increased immune activity, pain
was often accompanied by fatigue. Fatigue exacerbated pain by increasing the uncertainty
of the pain experience. Layli, diagnosed just days before our interview, found herself so
fatigued that she could not get out of bed. Since the level of fatigue related to her increased
immune activity was unlike anything she had previously experienced, Layli began to
question the origin of it.
K: You also mentioned when you were initially feeling sick, you were getting headaches and that
you felt tired unlike what you have felt at any other time before. What did it feel like when you
felt tired? How did you feel?
L: Oh, just exhausted. Like I couldn’t even do anything and I’m very independent. I wasn’t doing
anything. I would go straight home and get into bed and just sleep, and that’s just not me. I don’t
know if part of it was just being depressed – [or] to being in so much pain as well. But it was a
feeling of just pure exhaustion.
K: After you slept did you feel better when you got up?
L: Oh, no. I was still just very tired. Even if I would literally go home and get straight into bed, [I]
just really don’t even want to get up in the morning because I’m still exhausted… I was swelling
all during that time too, so I understand that maybe inflammation can just drain you.
Temporal Aspects of Pain
The women’s narratives also included references to the timing or temporality of
pain. The words and phrases used to characterize how often pain was felt included
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“sometimes,” “periodically,” or “constantly.” The transitory nature of pain – the fact that
it can appear for a short time and then disappear was particularly confounding. When
Kitty experienced this, her reaction was typical: “I’m just going crazy.”
During that time I was having pain in my joints but it was really weird pain. I remember one day I
had pain in my hips. I actually had to sit down on the kitchen floor it was so strong and then it
went away. I thought [to myself] “This is really… just crazy! I’m just going crazy.” Because you
just don’t have… pain like that and it goes away. Kitty
I can’t tell whether it’s because of the lupus being more active than I thought or coming down off
of the Prednisone or just that I’m in constant pain because I’ve got all these broken bones. But it’s
been a really crappy summer, I’ve gotta tell you (laugh). Julie
Changes in the temporal and locational aspects of pain not only caused feelings of
uncertainty, they amplified existing insecurities given the unpredictable nature of lupus
flares and the multiple locations of the body affected. Once diagnosed, women came to
understand the cycle of lupus flares but the locational and temporal uncertainty associated
with periodic pain persisted.
Comparative Aspects of Pain
One of the ways the women described pain was to compare it to previous
experiences. Comparative pain, as it is labeled here, refers to instances when the women
evaluate pain experiences against each other in order to rank them by intensity. The
description characterizes the experience of pain by relying on the accumulated
knowledge and understanding the individual gained over time. The most frequent uses of
comparative pain involved descriptions of the extent of past pain compared to current
pain levels. In most cases, the comparison was made between a point in the past (when
they were in a lot of pain) and a point in the present (when they felt better). When I asked
Jackie to describe the pain she was in before her hip replacement surgery, she used a
descriptive and comparative approach:
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K: Was it like muscle pain and bone aches?
J: It was like, okay, the bone is supposed to be together. The bone was apart like this
(demonstrates). So I guess as I walked it might have been scrubbing or something. ‘Cause I kept
telling him (doctor), “It sounds like something is not connected.” Sure enough it wasn’t connected.
So it was real painful. So I just feel great now (since the hip replacement) compared to then. I feel
really good.
Comparative pain descriptions also provided opportunities to voice appreciation for
current experiences which were less severe. Reflecting on the symptoms of previous
flares, Reba observed:
Sometimes I’ll get a flare where my joints and muscles hurt - get really all swollen... But I haven’t
had any like that since I started taking Celebrex. My hands every once in a while will get swollen
but nothing, nothing like I had before.
Although her description of pain was simple, Reba’s characterization of how well she
was doing left little doubt that she suffered in the past. Comparative pain is used as a tool
to organize and assign meaning to experience. Some pain experiences were worse than
others, so pain was gauged and interpreted in the light of past experience.
Disabling Aspects of Pain
Women frequently described pain as disabling. Characterizing it in this manner
simultaneously acknowledged its presence, impact and associated suffering. Pain which
interfered with normal behavior signified a level of severity more significant than other
pain.
K: So you said that it took about twelve years for you to get diagnosed. What was it that started it
and what did you generally get?
D: It started with the numbing, no feeling in my legs and my arms. Then it started with the back
aches. After I had my son that’s when everything went down hill. I had bad back pains. It was just
completely unbearable. My legs would give out in a way [that] I couldn’t walk. Didi
I was having such severe pain and muscle spasms. It was just one of those things that just
happened so quickly... My little brother carried me into the office because I couldn’t hardly walk.
It was just so painful. I hadn’t changed clothes. I was in a little nightshirt with a housecoat over it.
Well needless to say, I got sick in the waiting room... So they wound up admitting me into the
hospital for a week. Cicely
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Disabling pain capitalized on the experience of the listener by naming a common
behavior like walking as difficult or impossible as a result of pain. The fear associated
with disability made the experience of pain even more troubling. Since disability is feared
by the able bodied, it may also trigger emotional responses like dread or apprehension.
The disabling effect of pain coupled with its emotional impact conveyed a level of
suffering with which the listener could identify.
My stress level was so high because I was feeling so disabled. For someone who’s an independent
person that feeling of disability is terrible. I remember coming home from the network
chiropractor one day, which is energy work, and I wanted to close my sunroof in the car... you
have to just pull the thing… I could not move it. Oh, the pain was just excruciating… I couldn’t
zip up my zipper on my pants because the pain just radiated through. Bailey
Inexplicable Pain
Noting the failure of words to describe pain was another means of explaining the
experience. The numerous references to inexplicable pain in the women’s narratives
provides further support for Scarry’s observation that pain shatters language (1985).
I was in a lot of pain before I had the surgery. A lot of pain. I can’t even explain the pain it was so
bad. Didi
I was in a bad flare… what precipitated the flare was we went visiting some place, drove back in
the car and the sun was beating [down]… It was my turn to drive and I’m thinking, “I shouldn’t be
here. I shouldn’t be here.” But he (husband) had driven for all those hours... Well anyway, we got
home and that was the worst flare I’ve ever had. The pain would just radiate from my head back
down to my hips. I laid there and moaned. Doris
I started having a problem with my right arm… It was like aching. It started up in here
(demonstrates) just aching really bad. The only relief I had was if I held my hand like this
(demonstrates holding hand up toward chest with other hand). I had to walk around like this. If I
took my arm down, I would cry. I mean I would just cry, cry, cry. That’s how bad the pain was.
Jackie
Sometimes I’ll get a flare where my joints and muscles hurt - get really all swollen. Can’t walk,
can’t do anything just scream in pain. Reba
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Visual Description: The Image of Pain
In addition to the rich descriptions of pain in the women’s narratives, they also
filled out the McGill Pain Questionnaire (MPQ) (Melzack 1975). The MPQ is a
quantitative instrument which indexes current pain descriptors, intensity, and frequency.
Current pain is described through the use of an adjective list (78 in total) which is
grouped into four categories: sensory, affective, evaluative and miscellaneous qualities of
pain. Once adjectives are selected which reflect current types of pain, each adjective is
linked to the location on a human figure which corresponds to the woman’s current pain
experience. The intensity and frequency of current pain are assessed using questions with
scaled answers. The women were also asked to compare current pain intensity and
frequency to previous experience. This section presents MPQ results focusing on the
women’s visual descriptions of pain and their assessment of the intensity and frequency
of that pain. The analysis reveals both the peculiar and universal aspects of the
experience of pain.
The MPQ figures are powerful visual representations of pain. They are portraits
of the pain experience. They not only index the locations of pain, they also portray its
cumulative impact. What is profoundly moving about these self-portraits is that they
represent the lived experience of pain. The women inscribed onto those two dimensional
figures – the reality of their pain. As they did it, many of them inventoried their bodies.
Moving arms and legs, twisting their heads, and stretching their torsos – making sure that
what they recorded was true to life. Once the process was complete many of them reacted
with surprise about the number of locations and the apparent extent of the pain.
Regardless of their reactions, it was clear that they had never engaged in such an activity.
183
Some of them asked for copies of the figure to share with families, friends and doctors.
As I examined the MPQ figures, I realized it wouldn’t be meaningful to arbitrarily put
them into categories. Instead, I decided to divide them into groups based on the women’s
self reported pain intensity and frequency levels. This would ensure that regardless of the
number of locations or the type of pain identified, the groups would be based on the
women’s self-assessed experience of pain. After describing how these groups were
created, the differences between the groups by key variables will be discussed.
Categorizing Visual Descriptions of Pain
The MPQ figures were analyzed by indexing the locations of pain and then
grouping the images into categories based on self reported pain intensity and frequency
levels. First, the locations were divided into four categories reflecting the primary
locations of lupus pain: joint, muscle and organ. These categories were assigned based on
the locations selected by the women. Locations which were not clearly identified as a
joint, muscle, or organ were categorized as “other.” Table 4.1 lists the pain locations for
the women in pain (3 African-American and 3 white were not in pain). There were very
few differences between African-American and white women. Virtually equal
proportions African-American and white women reported joint, muscle, organ, and other
locations of pain. White women reported slightly more locations of joint pain (4 vs. 1)
and total pain locations 12 vs. 8). A larger proportion of African-American (69%) than
white (58%) women reported feeling “all over” tiredness or exhaustion. Since differences
by ethnicity were minor, the analysis focused on a comparison of current and usual pain
levels. These results will be discussed in the next section. Table 4.2 lists the total number
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Table 4.1 – Extrapolated Pain Locations based on the McGill Pain Questionnaire Figure by Ethnicity
(N = 35)1
White
(n=22)
Total
0, 41
8
13
16 (100)
3, 38
12
14
19 (100)
3, 41
11
13
35 (100)
Minimum, Maximum
Median
Average
Total with Joint Pain (%)
0, 11
1
4
14 (88)
0, 13
4
5
16 (84)
0, 13
3
4
30 (86)
Minimum, Maximum
Median
Average
Total with Muscle Pain (%)
0, 12
1
2
10 (63)
0, 16
1
2
11 (58)
0, 16
1
2
21 (60)
Minimum, Maximum
Median
Average
Total with Organ Pain (%)
0, 2
0
1
9 (56)
0, 4
0
1
9 (47)
0, 4
1
1
18 (51)
Minimum, Maximum
Median
Average
Total with Other Pain (%)
0, 19
5
6
15 (94)
0, 17
5
6
18 (95)
0, 19
5
6
33 (94)
All Over: Tiredness or Exhaustion3
Total (%)
11 (69)
11 (58)
22 (63)
Categories
All Pain Locations (Total)
Minimum, Maximum
Median
Average
Total with Pain (%)
African-American
(n=19)
Joint
Muscle
Organ
Other2
1
Women in no pain were excluded (n=5); 1 missing
Locations which were not clearly identified as a joint, muscle, or organ were categorized as “other.”
3
This was reported by either circling the entire figure or writing “all over” next to the adjectives “tiredness” or “exhaustion.’
2
185
Table 4.2 – Total Number of Pain Locations by Pain Intensity1, Compared Intensity of Pain2, and Pain
Frequency3 (N = 35)4
Groups
Total Locations
Mild (n=6, 17%)
A lot better today than on other days, brief
_____________________________, periodic
A little better today than on other days, brief
Same today as every other day, periodic
A little worse today than on other days, constant
7
3
6
6, 8
11
Discomforting (n= 20, 57%)
A lot better, periodic
A little better, periodic
__________, constant
Same, brief
____, periodic
____, constant
A little worse, periodic
8, 10
16, 30
7, 11, 14, 17
13
14
4, 22
3, 3, 13
8, 10, 13, 19, 41
Distressing (n= 7, 20%)
Same, constant
A little worse, periodic
8, 10, 12
14
21, 25, 38
Horrible (n= 2, 6%)
A lot worse, constant
6, 13
1
Pain intensity: no pain; mild; discomforting; distressing; horrible; excruciating
Compared pain intensity: a lot better today than on other days; a little bit better today than on other days; same today as every other
day; a little but worse today than on other days; a lot worse today than on other days
3
Pain frequency: brief; periodic; constant
4
1 Missing; 6 excluded (no pain)
2
of pain locations by pain intensity. The majority of the women were currently
experiencing discomforting levels of pain (57%). Only 17% were experiencing mild and
about 26% distressing and horrible levels of pain. Table 4.3 describes the total number of
pain locations by pain intensity and pain frequency. The total number of pain locations
for every group, covered a wide range of locations. Therefore, there is no apparent
association between pain intensity or pain frequency and the number of pain locations.
186
Table 4.3 – Total Number of Pain Locations by Current Pain Intensity1 and Pain Frequency2 (N = 35)3
Groups
Total
Pain Intensity (n, % of total in pain)
Mild (n=6, 17%)
Minimum, Maximum
Median
Average
3, 11
7
7
Discomforting (n= 20, 57%)
Minimum, Maximum
Median
Average
3, 41
13
14
Distressing (n= 7, 20%)
Minimum, Maximum
Median
Average
8, 38
14
18
Horrible (n= 2, 6%)
Minimum, Maximum
Median
Average
6, 13
-10
Pain Frequency (n, % of total in pain)
Brief (n=3, 9%)
Minimum, Maximum
Median
Average
6, 13
7
9
Periodic (n= 12, 34%)
Minimum, Maximum
Median
Average
3, 30
9
11
Constant (n= 20, 57%)
Minimum, Maximum
Median
Average
4, 41
13
16
1
2
3
1 Missing; 6 excluded (no pain)
Second, the women were grouped based on their answers to the first three
questions below. The second and forth questions were used to estimate usual intensity
and frequency of pain levels. Women in no pain were included in grouping process (n=6)
187
in order to capture the periodicity of the pain experience (e.g. being in no pain may be a
temporary experience).
Pain intensity
1) What is your present overall pain intensity today?
No pain
Mild
Discomforting
Distressing
Horrible
Excruciating
Comparative pain intensity
2) Would you say that your overall pain intensity is:
A little better today than on other days
Pain level
3) How would you describe your overall pain level today? How frequently do you feel the pain?
Constant
Periodic
Brief
Comparative pain level
4) Would you say that your overall pain level (how frequently you feel the pain) is:
A little better today than on other days
Initial groups were based on every possible combination (total = 75) of answers to
the first three questions. For example, all women who rated their pain intensity as a lot
better today than on other days, mild and constant were put into one group; then a lot
better today, mild and periodic; then a lot better today, mild and brief; then a lot better
today, discomforting and constant; then a lot better today, discomforting and periodic;
then a lot better today, discomforting and brief, etc. The initial groups were further
subdivided into three main subgroups based on comparative intensity of pain (question #2
above). Table 4.4 lists the groups and the total number of pain locations reported. The
188
primary sorting variable is compared intensity of pain. About 28% reported feeling the
same as every other day, 33% felt better than other days and 39% felt worse than other
days. The majority of those feeling better were in discomforting pain (62%) ranging from
7 to 30 pain locations. The majority of those feeling the same were in mild or
Table 4.4 – Total Number of Locations of Pain for Groups by Compared Intensity of Pain1, Pain
Intensity2, and Pain Frequency3 (N = 39)4
Groups
Total Locations
Group 1 (n=13, 33%)
A lot or a little better today than on other days
No pain – a lot better
(15%)
Mild – brief & periodic (23%)
Discomforting – periodic & constant (62%)
0,0
3,6,7
7,8,10,11,14,16,17,30
Group 2 (n=11, 28%)
Same today as every other day
No Pain (18%)
Mild – periodic (18%)
Discomforting – brief, periodic & constant (36%)
Distressing – constant (27%)
0,0
6,8
4,13,14,22
8,10,12
Group 3 (n=15, 39%)
A lot or a little worse today than on other days
Mild – constant (7%)
Discomforting – periodic & constant
Distressing – periodic & constant (27%)
Horrible – constant (13%)
11
3,3,8,10,13,13,19,41
14,21,25,38
6,13
(53%)
1
2
3
4
3 Missing
discomforting pain (54%) ranging from 4 to 22 pain locations The majority of those
feeling worse were in mild or discomforting pain (60%) ranging from 3 to 41 pain
locations. An additional 40% in this category were in distressing or horrible pain ranging
189
from 6 to 38 pain locations. The results summarized in Table 4.4 were used to select
examples of the MPQ figures.
Table 4.5 lists the details of those selections. For ease of comparison the pain
intensity levels mild or discomforting and distressing or horrible were combined. These
subgroups were further divided into low, medium and high reflecting the minimum,
average and maximum number of pain locations in the group. The MPQ figures are at the
end of the chapter.
Table 4.5 – Description of McGill Pain Figure Examples by Compared Intensity of Pain1, Pain Intensity2,
and Pain Frequency3 and Pain Locations (N = 35)4
Groups
MPQ Figure
(Ethnicity, Years since diagnosis)
Group 1 – Feeling Better Today (a lot or a little)
Pain Intensity: Mild or Discomforting
Pain Frequency: Brief, Periodic or Constant
Pain Location Average: 12
Low
Pain Intensity: Mild
Pain Frequency: Periodic
Pain Locations: 3
Figure 4.1
Lenore
(AA, 13 yrs)
Medium
Pain Intensity: Discomforting
Pain Frequency: Constant
Pain Locations: 11
Figure 4.2
Sally
(W, 6 yrs)
High
Pain Locations: 30
Figure 4.3
Marian
(W, 3 yrs)
190
Groups
MPQ Figure
Group 2a – Feeling Same Today as Always
Pain Frequency: Brief, Periodic or Constant
Low
Pain Locations: 4
Figure 4.4
Doris
(W, 7 yrs)
Medium
Pain Locations: 14
Figure 4.5
Danielle
(W, 7 yrs)
High
Pain Locations: 22
Figure 4.6
Kate
(AA, 17 yrs)
Group 2b – Feeling Same Today as Always
Pain Intensity: Distressing
Low
Pain Locations: 6
Figure 4.7
Julie
(W, 3 yrs)
Medium
Pain Locations: 14
Figure 4.8
Kenny
(W, 8 yrs)
High
Pain Locations: 30
Figure 4.9
Melanie
(W, 7 yrs)
191
Groups
MPQ Figure
Group 3a – Feeling Worse Today (a lot or a little)
Pain Frequency: Periodic or Constant
Low
Pain Locations: 3
Figure 4.10
Laura
(W, 4 yrs)
Medium
Pain Locations: 13
Figure 4.11
Cookie
(W, 4 yrs)
High
Pain Locations: 41
Figure 4.12
Didi
(AA, 3 yrs)
Group 3b – Feeling Worse Today (a lot or a little)
Pain Intensity: Distressing or Horrible
Pain Frequency: Periodic or Constant
Low
Pain Intensity: Horrible
Pain Locations: 6
Figure 4.13
Kitty
(W, 7 yrs)
Medium
Pain Locations: 21
Figure 4.14
Connie
(W, 7 yrs)
High
Pain Locations: 38
Figure 4.15
June
(W, undiagnosed)
1
2
3
4
Women in no pain excluded (n=6)
192
The second and fourth questions (above) asked the women to compare what they
are currently feeling to what they usually feel. Based on their answers to these questions,
an estimate of “usual” pain intensity and pain frequency was calculated for each woman.
This was done by assigning intensity and frequency levels based on their responses. For
example, if a woman said she was currently in mild pain and that it was a lot better today,
then the usual pain intensity assigned was distressing (since it was 2 levels worse). If the
current pain intensity was mild and a little better today, then the usual pain intensity
assigned was discomforting (1 level worse). If the current pain frequency level was
constant but a lot worse today, then the usual pain frequency assigned was brief (since it
was 2 levels better). If the current pain frequency level was constant but a little worse
Table 4.6 – Current and Estimated Usual Pain Levels by Pain Intensity1 and Pain Frequency2
Group
Pain Intensity
No Pain
Mild
Discomforting
Distressing
Horrible
Pain Frequency
Brief
Periodic
Constant
1
Current
n (% )
Usual
n (%)
[N=41]3,4
6 (15)
6 (15)
20 (49)
7 (17)
2 ( 5)
[N=39]5
3 ( 8)
12 (31)
11 (28)
11 (28)
2 ( 5)
[N=35]6
3 ( 9)
12 (34)
20 (57)
[N=30]7
4 (13)
9 (30)
17 (57)
3
1 Missing
4
Total percent greater than 100% due to rounding error
5
2 Missing
6
Excludes those in no pain (N=6); 1 Missing
7
Excludes those in no pain (N=6); 6 Missing
2
193
today, then the usual pain frequency assigned was periodic (1 level better). Women
whose pain intensity and frequency was the same today as always were kept in the same
category. Usual estimates which were off the scale (e.g. distressing pain which is a lot
better today (usual=horrible+1 level)); periodic pain which is a lot better today
(usual=constant+1 level) were included based on the closest level (horrible+1=horrible;
constant+1=constant). Table 4.6 reports the current and usual estimates of pain intensity
and frequency.
Comparing Current and Usual Pain Levels
Feeling better appears related to pain intensity since the lower the pain intensity
the better the women feel (Table 4.4). Women who felt better reported only mild or
discomforting levels of pain, whereas women, who felt worse, reported distressing and
horrible levels of pain. There is a narrower spectrum of pain intensity for women who felt
better (mild & discomforting) and wider spectrum of pain intensity for women who felt
worse (mild through horrible). It is interesting to note that the women who felt the same
today as every other day did not report experiencing horrible pain. This is surprising
given the type and the number of pain locations identified by the women in this category
(for examples see MPQ figures drawn by Danielle, Kate, Kenny and Melanie). It is
unsettling that about 63% of them experienced discomforting and distressing levels of
pain on a regular basis (same today as every other day). Additionally, about 27% of these
women experienced distressing levels of pain constantly.
The range of pain locations is wide for every pain intensity category (Table 4.4).
This suggests that regardless of the number of locations, the women scored pain intensity
based on a subjective evaluation of the meaning of each category. For example, there
194
were 2 women who experienced 6 locations of pain: one considered her pain intensity
mild and the other horrible. This is not surprising given the subjective nature of the pain
experience and the possible range of disease activity. It is also true however, that there
was a certain amount of shared understanding of pain intensity. Graph 4.1 shows an
association between distressing and horrible pain and higher numbers of pain locations.
Graph 4.1 – Pain Intensity 1 by Total Number of Pain Locations † based on McGill Pain Questionnaire
Figure
Total No. Pain Locations
45
40
35
30
Mild
25
Discomforting
20
Distressing & Horrible
15
10
5
0
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20
Number of Women
1
†
Pain intensity: What is your present overall pain intensity today? No pain; mild; discomforting; distressing; horrible; excruciating
Only unique total pain location scores are reported for each group (women with duplicate scores were excluded).
This suggests that in spite of differences in individual interpretations of pain intensity,
there is an association between higher numbers or pain locations and higher pain intensity
categories. The higher the number of pain locations the more likely the pain intensity was
considered worse today than on other days (compared pain intensity) (Graph 4.2). Graph
4.3 provides further evidence to support this conclusion. High levels of pain intensity
(distressing and horrible pain) are associated with higher symptom numbers.
195
Graph 4.2 – Compared Pain Intensity1 by Total Number of Pain Locations † based on McGill Pain
Questionnaire Figure
Number of Pain Locations
45
40
35
30
Better Today
25
Same As Always
20
Worse Today
15
10
5
0
1
2
3
4
5
6
7
8
9 10 11 12 13 14
Number of Women
1
Compared pain intensity: Would you say that your overall pain intensity is: a lot better today than on other days; a little bit better
today than on other days; same today as every other day; a little but worse today than on other days; a lot worse today than on other
days
†
Only unique total pain location scores are reported for each group (women with duplicate scores were excluded).
Number of Current Symptoms
Graph 4.3 – Pain Intensity1 by Current Number of Symptoms† based on McGill Pain Questionnaire Figure
20
18
16
14
12
Mild
10
Discomforting
8
6
4
2
0
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19
Number of Women
1
†
Only unique total current symptom scores are reported for each group (women with duplicate scores were excluded).
196
High symptom numbers are also associated with feeling a lot and a little worse today
than on other days (compared pain intensity) (Graph 4.4).
Number of Current Symptoms
Graph 4.4 – Compared Pain Intensity1 by Current Number of Symptoms† based on McGill Pain
20
18
16
14
12
10
8
6
4
2
0
Better Today
Same As Always
Worse Today
1
2
3
4
5
6
7
8
9
10
11
12
Number of Women
1
days
†
Only unique total current symptom scores are reported for each group (women with duplicate scores were excluded).
Pain intensity was also analyzed in relation to years since diagnosis (Graphs 4.5 &
4.6). Women diagnosed longer reported lower levels (discomforting) of pain intensity
(Graph 4.5). These women were also more likely to rate their current pain experience as
the same today as every other day (Graph 4.6). Women diagnosed fewer years were more
likely to rate their pain intensity as worse today than on other days. Caution must be used
in interpreting these results since the analysis was not adjusted for the current number of
symptoms. It is possible that the women who felt worse were sicker than the women who
felt the same. It is also possible however, that the women diagnosed longer felt better due
197
Graph 4.5 – Pain Intensity1 by Number of Years Since Diagnosis† based on McGill Pain
Years Since Diagnosis
30
25
20
Mild
15
Discomforting
10
5
0
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20
Number of Women
1
†
Only unique total years since diagnosis are reported for each group (women with duplicate scores were excluded).
Graph 4.6 – Compared Pain Intensity2 by Number of Years Since Diagnosis† based on McGill Pain
Years Since Diagnosis
35
30
25
Better Today
20
Same As Always
15
Worse Today
10
5
0
1
2
3
4
5
6
7
8
9
10
11
12
13
Number of Women
1
days
†
Only unique total years since diagnosis are reported for each group (women with duplicate scores were excluded).
198
Graph 4.7 – Pain Intensity1 by Estimated Disease Damage (Self-Reported SLICC/ACR2 Damage Index)†
10
Disease Damage Score
9
8
7
6
Mild
5
Discomforting
4
3
2
1
0
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17
Number of Women
1
†
Only unique disease damage scores are reported for each group (women with duplicate scores were excluded).
2
Disease Damage Score
Graph 4.8 – Compared Pain Intensity1 by Estimated Disease Damage (Self-Reported SLICC/ACR2
Damage Index)†
10
9
8
7
6
5
4
3
2
1
0
Better Today
Same As Always
Worse Today
1
2
3
4
5
6
7
8
9
10
Number of Women
1
days
2
†
Only unique disease damage scores are reported for each group (women with duplicate scores were excluded).
199
to the length of their illness and their experience in coping with it. No differences by pain
intensity and disease damage (SLICC/ACR1) were evident (Graphs 4.7 & 4.8).
Pain frequency appears related to pain intensity (Table 4.2). The majority of the
women (83%) in mild pain reported pain frequency as brief or periodic. The majority of
the women (89%) in distressing or horrible pain reported being in constant pain. At the
time of the interview, about 57% of the women were in constant pain regardless of pain
intensity (Table 4.3). The same proportion of women (57%) was estimated to be in
constant pain on a regular basis (Table 4.6). This is noteworthy considering that all of the
women had access to anti-inflammatory analgesic drugs and most of them took them
regularly. This means that in spite of available medications, about two thirds of the
women were in constant pain at all times. Being in constant pain was exhausting and
tiresome. The impact of pain on the lives of the women and the strategies leveraged to
cope with it will be discussed in the next section.
The women’s usual levels of pain intensity increased and decreased depending on
the category (Table 4.6). About 16% more women were usually in mild pain and 11%
more women were usually in distressing pain. About 21% less women were usually in
discomforting pain and 7% less were in no pain. Not surprisingly, the women currently in
horrible pain considered it a lot worse than usual which shifted them into the
discomforting category for usual pain. It is noteworthy that the usual pain estimates show
an overall decline in pain intensity from discomforting to mild and only an 11% increase
in distressing pain. This is encouraging given that almost half (49%) of the women were
1
Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC/ACR)
Damage Index for Systemic Lupus Erythematosus (Gladman et al. 1996).
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in discomforting pain at the time of the interview. There was little difference between
current and usual pain frequency.
The findings of the MPQ questions and figures yield peculiar individual results by
pain intensity and comparatively similar group results by pain frequency. Each woman
experienced pain as a result of the unique cluster of her symptoms. She was able to judge,
based on past experience, the intensity of current pain and she used this knowledge to
rank experience in the present. Since each woman’s lupus experience was unique based
not only her illness history but also on personal characteristics (like pain sensitivity) – her
assessment of pain intensity was unique and peculiar to her lived experience. Therefore,
few patterns by pain intensity were discernable when examined by time since diagnosis,
disease activity, and disease damage. Pain frequency, on the other hand, yielded more
insight with regard to group characteristics. The majority of the women were in constant
pain on a regular basis. This fits with the periodic pattern of lupus symptoms which ebb
and flow with immune system activity. Based on this, it is possible to argue that although
the occurrence of lupus symptoms may vary over time, when symptoms occur, the
associated pain is usually constant. The fact that comparisons can be drawn across the
sample based on pain frequency may be partially due to its temporal reality. Frequency is
linked to understandable units of time. Thus the women had a shared understanding pain
frequency. Constant pain was constant; it happened all the time. Periodic pain was
periodic; it came and it went. Pain intensity, by contrast, was based on subjective
understandings of pain experience. Mild, discomforting, distressing, and excruciating
were descriptors based on subjective experience which could not be shared. In spite of
this, the MPQ results demonstrate a relationship between pain frequency and intensity –
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as pain frequency increased so did its intensity. Since pain as a temporal entity was
understandable across individuals – this may be a more effective means of expressing
pain than subjective descriptors.
Living with Pain
Coping Mechanisms: Comparing Pain
As part of the MPQ, the women were asked to compare the intensity and the
frequency of their pain to previous experience. Although these questions were asked as
part of the structured questionnaire, the women routinely made these kinds of
comparisons during the open ended interviews. Comparing experience was one the ways
the women learned to cope with their lupus symptoms and the associated pain on an
ongoing basis. Comparing pain may also have helped the women make sense of their
symptoms. Pain needed to be taken seriously because it usually signaled the need for
medical intervention. However, the experience of periodic pain on an ongoing basis
created problems. Giving too much attention to it could prompt unnecessary trips to the
doctor and needless medical expenses and/or unwanted psychosomatic diagnoses. Giving
too little attention to it risked significant adverse health outcomes.
During the night I had a charley horse in my leg. My husband rubbed it and got the charley horse
out. Some hours later I began having pain in my chest that went from my back to my front - all the
way through just like “chuh!” (signaling pain) I gritted through it until it was a reasonable time to
call a doctor, like seven o’clock. When I call doctors I sound calm. I described the symptoms and I
sounded too calm for anything to be really wrong. They said, “Just rest and see what happens and
it’s probably nothing.” So I cancelled everything for the next day. I went into work on Monday…
and called my Internist and spoke to him. He said, “I want you to come to the office right now.
We’re going to do a lung scan.” I went to the office. They did a lung scan. I had a clot in my lung.
He sent me home to pack up some things and come back to the hospital. I went through five days
of IV Heparin and then three months of Coumadin. Josette
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Most women became adept at differentiating between pain experiences. Josette,
diagnosed for 24 years, learned how to differentiate between various conditions by the
type pain she experienced.
K: What is costochondritis?
J: Costochondritis is inflammation of the rib cage. You know everything that holds it together? It
can be more painful than just about anything you can have.
K: So it’s actually inflammation of the muscles?
J: Ligaments and tendons that hold the rib cage. It can be terribly confusing when you have chest
pain to know which it is. But I worked out a system to be able to tell which was which.
K: You can tell? How?
J: … If it’s deep boring pain through here (points to sternum) and I lean forward and it's worse,
it’s pericarditis (inflammation of the lining of the heart). If it’s a ripping kind of pain and I can’t
touch and feel a sore area, then it’s pleuritis (inflammation of the lining of the lungs). But if it
hurts here (demonstrating) and I can touch and feel some soreness, then I’m pretty sure it’s
costochondritis because it’s on the outside. That’s some of the hardest stuff to shake with lupus.
Comparing pain experiences was challenging especially for women without a diagnosis.
June struggled, even with assistance from her doctor, to differentiate between various
types of chest pain. Pericarditis is indicative of autoimmune activity associated with
organ-involvement. Determining whether her chest pain was or was not pericarditis could
help determine whether she had lupus. The uncertainty associated with her undiagnosed
state was exacerbated by the uncertainty of the pain experience.
Now that [aortic insufficiency] has been with me [for some time]. But with what we believe is the
lupus syndrome, I experience a lot of chest pain though I have never had…pericarditis. I haven’t
had that. But there’s always a lot of pain in the chest itself. So you’re never really sure (laugh)
what’s going on… Is it getting worse?
Although the compared experience of pain helped the women differentiate between
symptoms that needed or did not need medical attention, subjective pain comparisons
were frequently discounted in the biomedical setting. Before Kate was diagnosed with
lupus, she experienced unusual pain in her knee. In spite of her pleading, her pain was
repeatedly ascribed to a previously diagnosed condition.
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When I finally saw a Rheumatologist, this knee was like this (demonstrating how swollen it was).
Right? It hurt me so bad, I wanted to die. Okay? I mean this knee was killing me and they told me,
“Oh well you have a little arthritis and la-la-la-la…” I was like, “No, there’s something else wrong
with this knee! Okay?! I know I have osteoarthritis but this is bad. This is something new and it
hurts really bad!” The back of the knee hurt so bad I thought, “I can’t tolerate this...”
Coping Mechanisms: Normalizing Pain
Kate’s decision to get biomedical help was based not only on subjective pain
comparison but also on the fact that she could not “tolerate” it anymore. The notion that
pain should and could be tolerated was pervasive throughout the illness narratives. The
women repeatedly talked about how they discounted or disregarded pain in the past.
Jackie developed avascular necrosis in one of her hips. She put off going to the doctor
because she attributed the pain to osteoarthritis. Avascular necrosis is the progressive
decay of the bone marrow in the hips and shoulders which results from years of steroid
use. It is an extremely painful condition which ultimately requires hip or shoulder
replacement surgery.
I went there (doctor’s office) one day. I was cripplin’. I was walking real crippled because it hurt
so bad. So he (doctor) said, “What’s wrong? Why you walking like that?” I said, “Oh I guess it’s
my arthritis.” He said, “I don’t like the way you’re walking. It seems more like you’re favoring the
hip.” (Jackie was scheduled for hip replacement surgery soon after her doctor’s visit). Jackie
V: See I was doing everything not to have a major surgery. So I went around for years and years. I
didn’t have the hip replaced until ’97 maybe. Then the pain got so bad. Oh that’s why. The pain
got so bad. The pain got so bad. I just couldn’t handle it.
K: And did they ever tell you why they thought maybe the hip needed to be replaced?
V: Oh yeah, thirty years of Prednisone! (clapping for emphasis) Vicky
Part of living with chronic pain was learning to tolerate a certain level of it. For the
women this meant that pain became part of their everyday lives. In order to cope with
regular pain – its existence had to be normalized. Mandi described this realization
eloquently:
I hate to say this but I guess the fatigue and pain just kind of become part of your everyday life. I
don’t even know if I can say that’s bad. It’s everyday. It becomes sort of like a different pain. You
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wake up in pain and you don’t get excited... if I woke up one day and I wasn’t tired and I didn’t
have pain, I’d kind of wonder where am I? (laugh) I may have gone to Heaven (laugh).
Since the symptoms of lupus and the associated pain were periodic – it was disappointing
to the women to continually expect to feel well when they were probably going to feel
unwell. Most women dealt with this uncertainty by normalizing the pain. The
normalizing process was evident in the women’s narratives as they described previous
pain experience.
The rheumatologist is the one that really had told me that he was suspecting lupus or something in
that background. But of course, it’s very hard to diagnose. But in the mean time they did send me
to an orthopedic specialist and when they did their x-rays… the one where you go into the tunnel?
The tube thing? That’s what showed them… I had absolutely no cartilage left on my right hip. I
didn’t even know how bad my pain was. I mean, praise the Lord, I have a very very high pain
tolerance. Because the orthopedic doctor said that she didn’t know [how] I was even walking…
My family has told me, and it’s true, when I saw the pictures. I didn’t know the pain that I suffered
until they had taken some videos before my hip surgery and then took some two years later at
Christmas, again. You could see the difference just in my face around my eyes because I finally
started sleeping again and resting. Connie
That’s when he put me on forty milligrams of prednisone… I was actually [feeling] so good that I
was running on the treadmill. It was the first time I realized I had been in so much pain. ‘Cause
people kept asking me, “Are you in pain?” “No, I’m not in pain. My knees hurt a little bit but I’m
not in pain.” I didn’t realize that I had been in pain all the time. When you’re in pain a little bit
[and] you turn it up over a long period of time, you can tolerate an awful lot of pain and not realize
it. I had no pain, nothing hurt.” Julie
Julie’s observation about pain tolerance is key when attempting to understand
how chronicity influenced the women’s pain experiences. Chronicity normalized pain in
two important ways: 1) physical tolerance increased the longer the period of time pain
was experienced; and 2) emotional responses to pain decreased resulting in a gradual desensitization to pain as a symptom which required immediate intervention. This led the
women to a pattern of behavior I call “pushing through.” Once pain was normalized and
physical tolerance was increased, the ability the women had for tolerating pain made it
less likely they would set aside prior commitments (unless they were completely
incapacitated by it). Instead, they would “push through” the pain and continue to carry
out their roles and responsibilities.
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Evidently, I had inflammation around the heart - pericarditis - and I was having a great deal of
difficulty breathing. My husband’s like, “You can’t go to work.” I said, “But Joe, what better
place to be?” I was working in labor and delivery [as a nurse]. I said, “If I’ve got pains in my
chest, I might as well go to work. If I have a problem, I’m right there.” (laugh) I guess I was
determined that I wasn’t going to let this illness get me down especially because I had just
transferred to a new job. So, I went to work and he [doctor] saw me like a day or two later. When
he heard, he said, “Okay, you really need to come in if you’ve got these kind of symptoms.”
That’s when he immediately started me on the higher doses of Prednisone. Valerie
Well March ’78, I’m on the Coumadin. I’m feeling better. I’ve been told by my nursing director
that if I’m sick one more time that I can no longer work for them. At this point my sons and I had
been passing around strep. They would get it, I would get it, and we’d give it back and forth. We’d
all go to the pediatrician. They’d culture our throats. They’d culture me too along with the boys. I
ran out to go up to get my car and this pain started in my chest again… I thought, “This can’t be
happening again. I’m on Coumadin. I’ll just tough it out.” So, I went home. Came back to work
the next day. As I was trying to do paperwork, I was head of a team, waiting for a team
conference, I started getting chest pain. All through my chest, any time I moved or talked or
whatever. I informed my supervisor I really wasn’t [able to continue working]… She said, “Call
your doctor set it up to see him and then we’ll have somebody take you over there.” By about
noon I had gotten to the doctors. They did another lung scan and there was a clot in the very same
place. They slapped me in the hospital with the IV Heparin again. Josette
We still continued our normal life during all this. We never stopped. We never missed a beat. We
went on this sailboat trip because my husband [and] I used to race sailboats. It was the weirdest
thing. All of a sudden I was getting up in the middle of the night, like every two hours [to man the
vessel] but my hands were falling asleep and extremely painful and like screaming at me. We
were with these other friends and one of them is a Neurologist. He said, “You have carpal tunnel
syndrome.” I said, “Oh, great!” Which is another thing that you can get with lupus for whatever
reason... So it was so funny. We didn’t have anything. We were out in the middle of the ocean. So
every night they took magazines and made splints and taped me up with duct tape and I went to
bed like that so I could get through the trip (laugh). Danielle
K: Have you ever been to a pain clinic or a physician that specializes in pain management?
I: No, sure haven’t. No. ‘Cause I’m like this, I’ve never been one to take like pain medicine. I try
to tough the pain out. But the doctors’ always telling me that that can make me go into a crisis if
you just [take] all that pain. They always tell me not to wait ‘til I get in a whole lot of pain before
coming to them. ‘Cause sometimes like with my hip, I was in pain all that time. I wasn’t on any
pain medicine or anything. I was just takin’ it. Then it got to the point that I was crying and so I
knew then I had to go and see about it. Jackie
It’s one of those things. I have been kind of blessed because I didn’t have severe complications. I
don’t know if I should be able to complain. I guess that’s one of the reasons why I do really need
to rest. I don’t have it severe, so I should be able to go. I should be able to do this. I guess that’s
one of the reasons why I continue to push myself and push myself to do things… I mean, it’s not
right, I don’t have the luxury. I don’t want to say it’s not fair or something that I have pain. You
don’t have pain, so you should be able to get up. Even though there are days when I would give
anything in the world to just not feel weak, but I still get up.” Mandi
I have a tendency if I’m sick to just kind of “No- I’m fine.” You know when you live with illness
all of the time, unless it totally immobilizes me, makes me want to crawl out of my skin, or is
excruciatingly painful, I have a tendency to ignore it (laugh). Julie
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Conclusion: Understanding Pain
Although pain is a subjective experience, it is not un-measurable. Greater
attention needs to be paid to the cumulative experience of those in chronic pain – not only
to provide better medical care but also to increase appreciation for the accumulated
knowledge that results from the experience of chronic pain. For the women in this study,
living with pain necessitated learning to tolerate it. Pain was acknowledged when it
occurred but its extent was not fully appreciated until later. When the pain ceased, the
women realized the full impact of the experience. The origin of this response appears to
be unconscious. Through retrospective recounting, the women compared their pain
experiences and ranked their impact against each other. This made it possible for them to
construct an illness narrative which highlighted the most salient pain experiences during
the diagnostic odyssey. Salient pain experiences often coincided with the most serious
flares in lupus symptoms. The value of the retrospective narrative is that it is shaped by
cumulative illness experience and thus focuses on the most important illness events and
the meaning of those events. An adaptive strategy for dealing with pain emerged from the
narratives. Since full appreciation of a painful illness event was not possible at the time it
occurred, the woman was protected from the immediate impact of that experience. It was
not until some time had passed between the present and that experience, that she was able
to understand the full impact of that event. The process of comparing pain experiences
was important. It offered perspective and qualified pain experience in the present.
Evidence for the adaptive nature of pain self-comparison can be seen in the MPQ
results comparing pain intensity to years since diagnosis. Women who were diagnosed
longer reported lower levels of pain intensity (Graph 4.5) and considered their current
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pain experience as normal (same today as every other day) (Graph 4.6). This suggests
that those in chronic pain may under report current pain experience as part of an adaptive
response to coping with chronic pain. Instead of acknowledging current increases in pain,
the women compared these levels to previous experience. If a woman experienced high
intensity (horrible & excruciating) pain in the past, she understood how bad it could get.
Even high-moderate (distressing & horrible) levels of pain were tolerated as moderate
(mild or discomforting) since the current pain level did not reach the highest level
previously experienced. In this way, pain tolerance levels were reset and normal was
redefined. So, the longer the time since diagnosis and the higher the levels of previous
pain experienced, the more likely the threshold for pain tolerance was raised and normal
redefined. This perspective on pain – the bodily wisdom that comes as a result of
experience – limits the uncertainty of the chronic illness experience. The women learned
to listen to their bodies and to interpret pain experience. The lessons learned over time
provided perspective which normalized pain experience, increased pain tolerance and
decreased the ambiguity of the illness experience.
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Figure 4.1 - McGill Pain Questionnaire Pain Locations
Group 1 –
Lenore (AA, 13 years since diagnosis)
Pain Intensity: Mild
Pain Locations: 3
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Group 1 –
Sally (W, 6 yrs)
Pain Locations: 11
210
Group 1 –
Marian (W, 3 yrs)
Pain Locations: 30
211
Group 2a –
Doris (W, 7 yrs)
Pain Locations: 4
212
Group 2a –
Danielle (W, 7 yrs)
Pain Locations: 14
213
Group 2a –
Kate (AA, 17 yrs)
Pain Locations: 22
214
Group 2b –
Julie (W, 3 yrs)
Pain Locations: 6
215
Group 2b –
Kenny (W, 8 yrs)
Pain Locations: 14
216
Group 2b –
Melanie (W, 7 yrs)
Pain Locations: 30
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Group 3a –
Laura (W, 4 yrs)
Pain Locations: 3
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Group 3a –
Cookie (W, 4 yrs)
Pain Locations: 13
219
Group 3a –
Didi (AA, 3 yrs)
Pain Locations: 41
220
Group 3b –
Kitty (W, 7yrs)
Pain Intensity: Horrible
Pain Locations: 6
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Group 3b –
Connie (W, 7 yrs)
Pain Locations: 21
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Group 3b –
June (W, undiagnosed)
Pain Locations: 38
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Chapter 5: Seeking Support Finding Friendship: Support Group
Participation and the Illness Experience of Women with Lupus
“When we view embodied experience of people in social groups, we gain insights about cultural
phenomena because doing so gives us a window on a place where people and social institutions intersect,
embodied experience in communal life.”
—Gay Becker 1997, page 14
Introduction
Although some social groups share characteristics with support groups, illnessrelated support groups encourage a deeper level of sharing perhaps due to the
vulnerabilities associated with illness. It is possible that the shared illness experience
(whether personal or familial) breaks down the social barriers normally in place in other
contexts. By creating a sense of common predicament, social distance is reduced along
with feelings of vulnerability. Therefore, the shared reality of the support group creates a
sense of community based on common predicament and permeated with the emotional
depth associated with living with a chronic illness.
This chapter describes the characteristics of support groups based on 2 years of
participant observation. It examines the women’s reasons for attending support groups
and suggests that three types of support are generated: informational, emotional and
instrumental. Examples of each category are given and discussed based on participant
observation and the women’s illness narratives. The functioning of support groups is
examined based on Belenky and colleagues (1986) work on women’s ways of knowing.
The premise that women are “connected knowers” who acquire knowledge through
relationships based on friendship is explored as a possible reason for the appeal and
success of support groups.
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What this analysis reveals is that although the women occupied various
epistemological positions, as support group members they participated in a collective
process which validated subjective experience through connected knowing. Ultimately,
support group participation facilitated shifts in epistemological positions which may
never have occurred without the benefit of group process. It is further argued that
connected knowing is rooted in the cultivation of female friendship which creates and
perpetuates a shared sense of community essential to support group functioning.
Literature Review of Social Support and Support Groups
Overview of Social Support: Definition and Types
There are as many definitions of social support as there are researchers interested
in the topic. The lack of a standard definition is the primary criticism of virtually every
review published on social support. The inconsistency has resulted in a body research
which lacks comparability. The most recent review conducted by Williams and
colleagues (2004) is the most thorough to date. They use concept analysis to evaluate all
previously published definitions of social support and their utility for research. Despite
their differences, common themes and characteristics are evident across definitions.
Social support has been described as: “an interpersonal transaction” (House 1981);
“assistance and protection given to others, especially to individuals” (Langford 1997); “a
well intentioned action that is given willingly to a person with whom there is a personal
relationship and that produces an immediate or delayed positive response in the recipient”
(Hupcey 1998); and “the functions performed for a distressed individual by significant
others such as family members, friends, co-workers, relatives, and neighbors” (Thoits
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1986). Sarason et al. (1992) describes the outcomes of support as dependent on “the
motivations and expectations of both provider and recipient, the nature of the relationship
in which the supportive exchange occurs” (Williams et al. 2004:948). For Leavy (1983),
the key attributes of support are “size, setting, reciprocity, accessibility, and make-up of
interpersonal relationships.” Most functional definitions include categories of support
such as informational, instrumental (tangible), or emotional. Campbell and colleagues
describe informational support as knowledge, understanding and coping skills;
instrumental or tangible support as practical assistance with activities of daily living,
finances, and transportation; and emotional support as “empathetic communications”
between individuals and their support network (2004:3). Theories in social psychology
are most often used to explain the motivations for social support. These include: social
comparison theory (Swann and Brown 1990); social exchange theory (Tilden and Gaylen
1987); and social competence theory (White 1959; Lawton 1983; Pender 1987; Stewart
1993; as cited in Langford 1997).
As can been seen from this brief review, most definitions of social support are
rooted in psychological concepts and understandings of human behavior. As a result, the
majority of research considers social support an individual resource and the individual as
the sole benefactor of social interaction. This is considered true whether the individual is
the recipient or the originator of support. For example in the case of the recipient, the
benefit may take the form of informational (i.e. advice about an illness), tangible (i.e.
transportation to doctor’s appointment), or emotional (i.e. supportive talk) support. In the
case of the originator, the act of giving support may boost self-esteem and self-worth
through the provision of such aid (Riessman 1965). Through the social interaction, each
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individual benefits in a mutually advantageous way. Viewed from this perspective, social
support is no more than the sum of its constituent parts – the sum of the benefits to each
individual involved in the social interaction. Given current understanding of the concept,
little attention has been given to the social context of support or the group process that
shapes it. Since the benefit of social interaction is attributed to the individual rather than
the group, social support, as it is currently defined, is a one dimensional concept.
Social Support: Coping with and Preventing Disease
Social support has been widely described not only as a psychosocial factor related
to coping with chronic illness but also a protective factor against disease. Numerous
publications in the fields of psychology, sociology, anthropology, and public health
discuss the mediating effects of social support on health status and disease outcomes.
Social support has been linked to decreased mortality and increased survival rates for
various diseases (Berkman and Syme 1979; House et al. 1982; Schwartzer and Leppin
1989; Spiegel et al. 1989; Kaplan and Toshima 1990; Stewart 1993; Fawzy et al. 1993).
Ample evidence exists demonstrating the relationship between social support and
disease-related morbidity or quality of life (Berkman 1984; Kaplan 1985; Ganster and
Victor 1988; Callaghan 1993; Schreurs and de Ridder 1997; Goodwin et al. 2001; Gallant
2003). Studies also indicate that social support is associated with better physical
functioning and mental health of individuals with lupus (Karlson et al. 1997; Dobkin et
al. 1998; Sutcliffe et al. 1999; Bae et al. 2001; Karlson et al. 2004) and other rheumatic
diseases (Wegener 1991; Savelkoul et al. 2000; Savelkoul et al. 2003). Less social
support in women with lupus has been associated with greater disease activity and worse
physical function (Dobkin et al. 1998; Ward et al. 1999). Despite the methodological
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weaknesses of some studies (O’Reilly 1988; Siegrist and Junge 1990; Callaghan 1993;
Lanza and Revenson 1993; Newell et al. 2002), the evidence suggests that a causal
relationship exists between social support and well-being.
Overview of Support Groups: Background and Types
During the last 40 years, the self-help movement in the United States has grown
into an $8 billion-a-year consumer-driven industry (Salerno 2005). Support groups are
viewed as an outgrowth of the self-help movement (Lagrand 1991; Kessler 1997). In fact,
only recently has the term “self-help group” been replaced by descriptors such as “mutual
aid,” “peer support” or just “support group.” Kessler (1997) estimates that over 25
million Americans will participate in support groups at some time during their lives and
that over ten million participate on an annual basis.1 They have become so prevalent in
the United States that some have described them as a major institution of American
society (Kessler 1997). The success of support groups in the United States has been
attributed to their capitalizing on American notions of individuality and collectivity
(Spindler and Spindler 1983; Wuthnow 1994). Given their roots in the self-help
movement, the majority of support groups concern behavior control problems like
overeating, alcohol and drug addition (Humphreys and Rappaport 1994). However in
recent years, there has been a steady increase in the number of illness-related support
groups (Kessler 1997). Social policy analysts suggest that this may be due to managed
care cost-control strategies and the decreased range of services available to patients
(Riessman and Carroll 1995). Demand for them is expected to grow given the rise in
1
These numbers might be substantially higher since professionally led support groups were excluded from
the analysis (Kessler 1997).
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chronic disease and the concomitant increase in life expectancy (Riesman 2000).
Currently, illness-related support groups exist for every disease recognized by the World
Health Organization (Riessman 2000). Due to this growth, researchers and biomedical
professionals have become increasingly interested in them. Lock (1986) described them
as the “fourth estate in medicine” and called on physicians to embrace them as part of the
“greater medical profession.” Riessman (2000) considers them a consumer-driven
supplement to the health care system and a potential “cure for the chronic illness crisis.”
Characteristics of Illness-Related Support Groups
The most basic characteristic of illness-related support groups is that they bring
together people with the same illness (Thorne 1993). This creates a setting with a “sense
of common predicament” and prompts feelings of mutuality and community (Williams
1989). These feelings are deepened through the sharing of personal narratives which
relate the lived bodily experience, emotions, coping strategies and social interactions
brought on and shaped by illness. As Becker observes, “[n]arrative helps makes sense of
suffering…it enables the narrator to mend the disruption by weaving it into the fabric of
life, to put experience into perspective” (1997:166). The sharing of personal narratives
advances the interpretation of individual experience and mobilizes the social support that
is often lacking in American society (Becker 1997). In the case of women with lupus,
support groups are about finding community and building the social networks necessary
for living and coping with a chronic illness.
The relationship between support group participation and improvements in
physical, mental and emotional health is debated in the literature. Biomedical research on
support groups can be divided into three categories: 1) descriptive studies which examine
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types of support; 2) intervention studies which explore the association between support
group membership, illness morbidity and/or quality of life; and 3) methodological
reviews of support group intervention research. The majority of this research is
suggestive of a relationship between support group participation and improved mental,
and emotional health (Lagrand 1991; Humphreys and Rappaport 1994; Kessler 1997;
Riessman 1997; Gray and Fitch 2001; Campbell et al. 2004; Scheidlinger 2004).
Support group participation has been found to be associated with decreased levels
of depression and anxiety among women with lupus (Bitter 1986). Only one study has
been published on support groups and lupus (Dorsey et al. 2004). It found lower levels of
physical functioning among support group members. This result may have been due to
selection bias. Very few studies have been conducted on support groups and rheumatic
diseases. Those published describe participant perceptions of support group impact
(Savelkoul and de Witte 2004); the educative value of support groups (Gross and Brandt
1981; Potts and Brandt 1983; Barlow et al. 1992; Barlow and Barefoot 1996); or group
strategies to encourage active coping (Savelkoul et al. 2001; Savelkoul et al. 2003). None
of these studies are prospective intervention trials and therefore little can be said about
the relationship between support group participation and rheumatic diseases.
A number of theories have been used to explain the relationship between support
group participation and its impact on health. Campbell and colleagues (2004:3) list them
as follows: 1) stress and coping perspective (Cohen and Wills 1985; Cohen and Mathews
1987; Bloom 1990; Kawachi and Berkman 2001) which posits that social support
“protects or enhances health directly by enhancing coping skills and indirectly by
mediating the stress response”; 2) social comparison theory (Festinger 1954) which
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suggests that “being able to compare one’s own experience with similar others may
normalize the experience, provide positive role modeling, encourage health promoting
behaviors and enhance self-esteem”; 3) helper therapy principle (Riessman 1965) which
proposes that “self-esteem is enhanced not only by sharing experiences and feelings with
others in similar circumstances but also the opportunity to help others and not just focus
on themselves”; and 4) optimal matching theory (Cutrona and Russell 1990) which says
that illness creates many needs and that “need specific support” offers the best results to
the ill.
Support Groups and Anthropological Research
The contribution of anthropologists to the body of research on social support has
been limited. This may be due to the shear volume of work done on the topic which
lessens the impact of anthropological contributions or it underscores the intellectual
hegemony of biomedical constructions of the concept. Although anthropologists have not
offered many alternatives to current definitions of social support, their analyses of
support group meetings has shed significant light not only on the dynamics of the group
process but also on the importance of shared human interaction in formulating new
meaning and understanding of experience. As Jacobson observes, “[f]ocusing on the role
that culturally based assumptions and expectations play in defining the meaning of social
support and in the mobilization of support networks begins to clarify unresolved
questions” (1987:42). Studying the frameworks within which the meaning of support is
determined is one way to move beyond the individual.
Most anthropologists have characterized illness-related groups as a source of
constructive socially embedded support. They “function typically to try to reduce
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patients’ emotional distress and sense of isolation by providing information about the
disease and its treatment, by teaching a variety of coping skills, and by giving patients a
chance to share their personal experiences… in a supportive and safe environment”
(Mathews 2000). They offer a collective or communal forum where individual
understandings of lived bodily experience are made explicit and shared cultural meanings
take shape. Anthropological research on support groups focuses primarily on the meaning
making process of group experience and its outcomes. The topics of this research include
identity reconstruction and/or protection (Karp 1992; Wolkomir 2001; Masequesmay
2003); support group structure and functioning (Merrill 1987; Tutt 1989; Keck 1994;
Masequesmay 2003); and cultural model formation (Karp 1992; Mathews 2000).
Karp (1992) describes the search for meaning among members of an illness
support group for depression or manic depression and illustrates how the group process
provides explanations for members’ experiences and protects self-identity. Wolkomir
(2001) examines the importance of emotion in the support group process and how this
process contributes to individual transformation and success of gay and ex-gay Christian
support groups. Masequesmay (2003) focuses on the identity work of a queer Vietnamese
support group and how the group process leads to the normalization and/or
marginalization of certain identities. Merrill (1987) presents a structural analysis of a
breast feeding support group and how that structure builds oral tradition, promotes
understandings of breastfeeding and provides support to members. Tutt (1989) explains
the social reality of a women’s poker group based on the role that “girlfriending” plays in
the group process. Keck (1994) presents the experiences of women with multiple
sclerosis and describes the types of support generated by membership. Karp (1992)
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examines how the group process creates shared cultural meaning among individuals with
clinical depression. Mathews (2000) illustrates how the group process generates a shared
cultural model of breast cancer experience.
Characteristics of Study Support Groups
From 2000 until 2002, I attended 28 support group meetings sponsored by the
Lupus Foundation of America (LFA), Inc. Georgia Chapter. The LFA sponsored monthly
support group meetings throughout the state of Georgia. The largest proportion was held
in the metropolitan Atlanta area. I attended meetings in Cobb (1), Fayette (1), Fulton (2),
Gwinnett (1), and Henry (1) counties. Attendance varied from a handful (2-5) to
substantial (10-15) participation. Participants found out about the support groups through
personal contacts (family, friends, doctors) or by contacting the LFA chapter office. A list
of support group meetings was included in the information packet sent out to new
contacts. Approximately 79% of the women (80% African Americans; 77% Whites)
attended support group meetings. Those that did were a self selected group. The initial
decision depended on whether the idea of support groups was appealing. The decision to
continue depended on whether the type of support offered met individual needs. The
appeal of support groups and the types of support will be discussed later.
The groups were usually run by lupus patients themselves. Of the six groups I
attended, only one was co-led by a non-patient professional (Henry County) (a health
educator and employee of the hospital where it was held). His co-facilitator had lupus and
was an experienced leader of a myasthenia gravis support group. The group met only
three times before it folded due to a lack of participation. Two support groups were lead
by women with counseling experience. The Fulton County support groups were led by a
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pastor’s wife with over 25 years ministering experience and a nurse/social worker with a
counseling practice specializing in the challenges of the chronically ill. The Cobb County
support group was facilitated by two women who were trained while they were in
Washington, D.C. for the LFA sponsored National Advocacy Day. The national
organization offered training to support group leaders at its annual meeting and other
events that included Chapter participation. I attended the training course with them. It
was a one day skills building workshop on organization and leadership. Both women led
the group for some years (2-5) prior to being trained. The remaining support groups were
led by lay facilitators.
Meetings were divided into three distinct sections. The first part involved a round
robin introduction and general checking-in on members. Participants would talk about
their current state of health, lupus activity, or other topics like important recent life events
(i.e. engagements, marriages, funerals, graduations etc.). The second part featured an
invited speaker who presented on specific topics of interest to the group. The speakers
were often physicians, lawyers, counselors, physical therapists or some other
professionally trained individual with specialized expertise of the chosen topic. The best
attended meetings usually featured presentations from physicians who talked about lupus
and treatment options or lawyers who talked about getting social security disability. The
third part was refreshments. That portion of the meeting was often lively and offered
members an opportunity to follow-up on issues or questions they had for the presenters or
each other. Informational materials that were set out earlier were also perused at that
time.
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Sharing Experience and Creating a Safe Environment
The most successful support groups were led by leaders who relied heavily on
experience, intuition, and member feedback to determine function and content. Since
support group participation was free and open to anyone who wanted to attend (patients,
family, friends, etc.), careful attention was paid to the complimentary but sometimes
competing needs of participants. Skilled support group leaders (with the assistance of
long-time members) were able to establish a group dynamic tolerant of differing needs.
The dynamic was almost always consensus oriented with participants taking great care to
listen openly and offer advice without being pushy. Great emphasis was placed on
finding things in common. By doing so, the women created an open and safe environment
which focused on similarity rather than difference. Mathews described this process
among cancer patient support group participants: “[g]enerally, one woman would raise an
issue in the context of her personal experience. She would usually frame her discussion
of the problem and her tentative solution with reference to specific beliefs…Other
women would respond on the same theme by ostensibly sharing their own personal
experiences, where the responses were clearly structured to try and find points of
agreement between individual accounts, even when the knowledge sources used to
construct and/or rationalize them differed” (2000:400). In this chapter talk focused on
finding commonalities will be referred to as “agreeable but honest talk.” Agreeable but
honest talk occurred across all groups not only during group discussion but also in
conversations during and after the meeting (e.g. while having refreshments or standing in
the parking lot). Particularly resonant topics would precipitate occasional sideline
conversations during group discussion. This would prompt agreeable nods, gestures and
sometimes laughter.
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The priority placed on agreeable but honest talk did not prevent the women from
being open and frank with each other.2 When disagreements occurred they were voiced.
However, great care was taken to present opposing points of view in a sensitive and
caring manner. Deference was given to the interpretation and experience of the other. It
was up to the originator of the idea to accept or reject the opposing opinion being offered.
There were costs associated with voicing a contrary opinion when it was done in a less
than conscientious way. This would usually result in group support for the individual who
originated the point of discussion with some disagreement among members about the
veracity of the opposing opinions offered.
For example, during introductions, Genie mentioned that she was not sure her
doctor was doing everything he could to help her. Her primary lupus symptoms were
musculoskeletal. She was taking prednisone and plaquenil. She was concerned about
whether her doctor was really listening to her and prescribing medications tailored to her
symptoms or just giving her medicine like he gives all his other patients. When it was
Magda’s turn, she asked the doctor’s name. Realizing it was her old doctor, Magda talked
about the problems she had with that doctor and his failure to meet her needs. She also
pointed out he prefered patients who did not ask questions and blindly followed his
advice. This remark prompted a number of comments in support of the doctor and some
general advice from the support group leader about how important it is to find a doctor
that you can trust and to keep in mind that not every doctor is suited to the needs of every
patient.
2
Schaef (1985) and Tutt (1989) observe that when women feel secure “honest talk” emerges. This talk can
occur in groups or in private where women are “free to voice their own perceptions” (Schaef (1985:100) as
quoted by Tutt (1989:24)). Honest talk helps shape the social reality of women’s groups and is
characterized by openness and acceptance (Tutt 1989).
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Members tried to lessen tension by reiterating the importance of offering
constructive advice. The general consensus supported Magda’s right to voice an opinion
but did not support her remarks impugning the reputation of the doctor. Magda’s
characterization of the doctor’s patients as passive, irritated many members of the group
(including his current patients). I did not have the chance to talk with Magda after the
meeting. Perhaps fearing further social sanctioning, she left early. I did talk with her
some months later after the open ended interview. She was apologetic about her
comments and explained that she was trying to protect Genie from a doctor who would
not listen. She wanted her to get out from under his care before she wasted more time.
She was reflective about what happened at the meeting but she never returned.
For Magda, finding a doctor to trust was critically important. In addition to her
diagnosis of lupus, she also had myasthenia gravis, venous thrombosis, an aneurism and
two strokes. Anything that delayed or interfered with her ability to get immediate and
effective care was in her mind “life threatening.” In her narrative she associated how well
she was being treated by her doctors with how well she was doing. She gave her doctors
the credit for saving her life not once but many times. But she was also not willing to put
up with patronizing attitudes along the way. Since she was more seriously ill than Genie,
she had had experiences which taught her the lesson of “get out while you can and before
it’s too late.” Genie, on the other hand, could not relate to the urgency of Magda’s advice.
It did not fit her experience. Magda’s comments disconnected her from the group process
and marginalized her socially. Her comments weakened the “safe” environment for Genie
and others. Magda told me that she did not return because she had moved and the group
was now too far away.
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Support groups are by nature separate from ordinary life. They are peopled by
individuals with common experience and separate from those who do not share those
experiences.3 I was often surprised by the deep level of sharing. Virtually every subject
was fair game including discussions of sexual inhibition and sex drive suppression (due
to weight gain and other side effects of medication). The discussions about sex were
tempered by the semi-private nature of the interaction. To address this, comments were
usually couched with some innuendo but when recognized, prompted personal sharing
and dialogue often peppered with raucous laughter and knowing gestures. In addition to
sensitive topics, the women were open to profound levels of emotional sharing.
An example of this occurred when about one and half hours into a meeting,
Amelia, a fairly new member to the group, arrived late looking particularly distraught.
Her emotional state was evident as she hurriedly entered the room and sat down.
Immediately all attention focused on her. Amelia excused herself for being late and
apologized for interrupting the discussion. She said she had gotten lost, had had an
anxiety attack, and finally figured out how to get to the meeting. She started to cry.
Another member tried to console her by placing her arm around her. I looked around the
room and realized that everyone was visibly moved. Some members were crying with
her. The conversation switched immediately to a discussion of similar experiences of
disorientation, emphasizing how common it is and how scary it feels. Everyone evinced
such deep concern and genuine caring that the empathy drove Amelia into uncontrollable
sobs. When this happened, one member known for her care-free attitude and sense of
3
Tutt describes the atmosphere of a women’s poker group as “not threatened by the existence of
eavesdropping husbands or children” (Tutt (1989:26)). Separation from usual society within the confines of
the poker group promoted information sharing that was “limitless,” “astounding at times” and “nuanced
and revealing in ways that attitudinal studies or questionnaires could never touch” (Tutt 1989:26).
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humor, shared an anecdote about getting lost which made everyone laugh. This moment
of laughter through tears was the perfect antidote for the serious mood.4
The emotional attachment the women had for each other was pivotal to the
meaning making process because it seemed to level the playing field for all members. No
woman could claim singular authority on any experience since others may have
experienced the same thing. Here, the sharing of specific events and their emotional
impact were part of a simultaneous process. A woman would describe an event and either
articulate or imply the associated emotional variance. The group would respond by
presenting similar scenarios. This solidarity with the topic originator gave that person the
knowledge and the associated feeling that they were not alone. It also drew the group
closer together in the knowledge that they had experience in common and could be
supported and understood by others. In this regard, there was never a sense members
were getting too close.
Although illness-specific topics were given priority, the pervasive impact of lupus
across all aspects of life made virtually every topic fair game. Discussions of family and
friends attitudes and behaviors, work, civic or church situations, either tangentially or
directly related to lupus were discussed.5 There were no issues that appeared to be taboo:
financial problems (employment, insurance, disability, medical care costs, etc.); social
problems with husbands, family or friends (fights, arguments, disagreements,
4
Wolkomir (2001) observes that emotional sharing shores up group connectedness and is essential to the
success of support groups. The importance of emotional engagement to the renegotiation of meaning (Karp
1992; Thoits 1996) and identity reconstruction has been discussed in previous research (Mason-Schrock
1996; Denzin 1998; Ponticelli 1999; Mathews 2000; Wolkomir 2001;). As Wolkomir points out,
“[e]motions facilitate and sustain the redefinition process by initiating and securing commitment to the
process and the group” (2001:329).
5
This openness sets apart support group membership from other groups or social clubs. Tutt’s poker group
agreed they would probably not discuss severe financial problems, fights with husbands, their children’s
social problems or problems in school, and their own feelings of inferiority or insecurity (1989:30).
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disruptive/obstructive support, etc.); children’s problems (social, medical, illicit drug use,
etc.); sexual problems (inhibition due to weight gain or sex drive suppression due to
pharmaceutical use); and feelings of inferiority or insecurity whether or not illness related
(covering the topics above and more). The support groups encouraged a deeper level of
sharing perhaps due to the vulnerabilities associated with living with lupus. At each
meeting there was a shared sense of common predicament which appeared to reduce
social distance and in turn the social anxiety usually associated with personal disclosure
of this nature and depth.
The Women’s Reasons for Attending Support Group Meetings
The women gave a variety of reasons for attending support group meetings (Table
5.1). They fell into three broad categories of support: emotional, informational, and
instrumental (or tangible). The most appreciated aspects of support group participation
were emotional. However, emotional support was often simultaneously manifest with the
other two types of support. Offers of support were woven into the various topics of
conversation. These topics included: physiological symptoms and pain (unpredictability
of symptoms, understanding flares, listening to your body); biomedical care (how to find
a good doctor, doctor-patient communication, attitudes of clinic and nursing staff);
biomedical treatment (understanding lab tests, treatment regimens, medication side
effects); alternative medicine (options available, where to get information, warnings
about incompatible treatments); social and familial concerns (changes in relationships,
change in roles, types of support available/absent, impact of chronic illness on day to day
living, misunderstanding); financial concerns (insurance problems/ paying for health
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care, filing for disability /SSI); employment/unemployment issues (disclosure issues,
career trajectory, self-esteem, in/dependence).
Table 5.1 – Reasons for Attending Support Groups
What do you get out of support groups?
1. Emotional support
Feeling understood:
Feeling connected:
Feeling thankful:
Feeling like an expert:
Feeling validated:
“They know what I’m going through”; “They listen and don’t judge”;
“We’re like a family”
“We’re like family”; “I’m not alone” (social isolation)
“Others are doing worse than me” (social comparison)
“I didn’t know I had something to say” (social service)
“Is this real?”; “Have you experienced this?”
2. Informational Support
Disease characteristics, symptoms and progression
Etiology and illness causation
Medication & treatment strategies (biomedical and alternative)
Insurance & disability
Management strategies (medical information, medical records, difficult doctors/nurses/office staff,
multiple doctors, etc.)
Doctor referrals (informal/off-line exchange)
Other referrals (disability lawyers, family counselors, alternative medical practitioners, etc.)
Sources of additional information (books, pamphlets, AV materials, etc.)
3. Instrumental Support (beyond the support group meeting)
Birthing friendship
Forming community
Extending social network
Feeling empowered
Since the topics were never mutually exclusive, a complex pattern of dialogue
developed as each speaker built upon preceding comments. As the dialogue progressed,
offers of support were made outright or sometimes embedded in stories relating to similar
experiences. After months of attending support group meetings, I was able to set aside the
specific topic of conversation and see the web of support as it was being woven. Through
the give and take of the conversation and based on the specific needs being voiced by the
speaker, the women listened and then offered each other the support they needed. It was
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tremendously energizing to the woman on the receiving end and to the group as a whole
when offers of support were woven seamlessly into the fabric of mutual exchange.
Table 5.2 summarizes the types of support available at support group meetings.
Emotional support was primarily offered through verbal affirmation. These affirmations
came from two different types of experience: known experience and imagined
experience. The first was based on actual lived experience. The second was based on
interpolation, imagining what another’s experience must have been like (putting yourself
in someone else’s shoes). Known experience generated empathy in the listener. Imagined
experience generated sympathy in the listener. When verbal affirmations occurred, based
either on known or imagined experience, the originator of the topic came to understand
the power of shared experience. In group context, shared experience generated a feeling
of connectedness in the knowledge that “you are not alone.”
Informational support was offered through verbal communication based on either
verbal advice or visual, auditory and/or written materials. The advice offered originated
from self, distal or expert sources and was based on knowledge generated through lived
experience (self); social comparison (distal: family, friends, other); and expert advice
(physicians or other expert sources through verbal communication, media outlets, or
books/materials). Informational support served three purposes to: 1) increase
understanding of problems; 2) advance problem solving strategies; and 3) resolve
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Table 5.2 – Types of Support at Meetings and Outside Meetings
1. Topics/ Concerns
Symptoms
Biomedical care
Biomedical treatment
Alternative medicine
Social/ familial issues
Financial concerns
Employment issues
Disability
Medicaid
2. Emotional support
Verbal affirmations of:
1) Known experience: empathy
“That happened to me”
“I know how you feel”
2) Imagined experience: sympathy
“That never happened to me, but I can imagine how you feel”
3) Shared experience: connectedness
“You are not alone”
“Call me anytime”
Outside meeting support: Friendship promotion and growth through regular contact
between meetings
3. Informational Support
Information/advice based on:
1) Self knowledge/lived experience
2) Distal knowledge/ social comparison (family, friend, other)
3) Expert knowledge – media/materials verbal/visual/audio/written
(physician or other expert source)
Purpose of advice:
1) increase understanding of problems
2) advance problem solving strategies
3) resolve dilemma
Outside meeting support: Phone conversations, social rendezvous, indirect contact
(messages through others: “Amy told me to tell you that…)
4. Instrumental Support
Verbal affirmation based on:
1) Active listening (uh-huh, mm-mm, mm-hm, etc.)
2) Other verbalizations (laughing, sighing, groaning, Tongue clicking, etc.)
Gestural affirmation based on:
1) Visual gestures (head nodding, clapping, shared crying, hand waving, etc.)
2) Physical contact gestures (touching, stroking, hugging, etc.)
Outside meeting support: Rides to the doctor, food gifts, in-tandem errands
(“While I’m at the store/pharmacy, can I get you something?”, etc.)
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dilemmas. As issues were raised understanding would increase based on the information
shared. Depending on the salience of the issue, the informational support given often
addressed all three purposes. The woman who initially raised an issue could then decide
which advice to accept and which to disregard. The offering of informational support was
usually rich and varied due to the differing experience of the women themselves, their
assorted social connections, and their diverse levels of exposure to expert knowledge.
Primary importance was placed on expert advice given by doctors during the
clinical encounter. Women frequently “compared notes” about medication efficacy and
side effects, treatment strategies by symptom cluster, and the meaning of testing and test
results. Expert advice based on self-research was also considered important. The women
shared their sources of expert knowledge and information by bringing in copies of
materials, announcing new book publications or referring to TV/radio educational
programming. The importance placed on informational support based on lived experience
or social comparison varied depending on the topic. If the advice related to treatment
modalities or pharmaceuticals, it was usually taken with a grain of salt. This was due to
common recognition that lupus symptoms and treatment strategies vary widely from
patient to patient. Therefore, the women understood that what works for one woman may
not work for another. If the topic concerned coping with illness, navigating medical,
insurance or disability bureaucracy, family/friend support, or employment issues, advice
based on lived experience was given primary importance. Informational support based on
distal knowledge (through social comparison) was also considered valid on these topics,
however it was given less importance than advice based on personal experience.
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Instrumental support was offered through verbal and gestural affirmations. Verbal
affirmations took the form of active listening cues like “uh-huh”, “mm-mm”, “mm-hm”
or laughing, sighing, groaning, tongue clicking, or other verbalizations. Gestural
affirmations were offered through visual and physical gestures. Visual affirmations
included gestures such as heading, clapping, shared emotional outbursts (crying/looks of
dismay or disappointment, etc.), hand waving, or other visual cues. Physical contact
affirmations were offered through gestures such as touching, stroking, hugging, or other
physical gestures. Instrumental support was usually offered in a reactionary or
spontaneous rather than a proactive or methodical manner. Although all offers of support
were meaningful, the spur-of-the-moment and impulsive nature of this type made it
particularly significant. Meetings punctuated with frequent moments of instrumental
support were often enjoyed more by the women or characterized as a particularly “good
meeting this week.” Instances of instrumental support underscored the emotional
intensity of the various topics and served to solidify the emotional connectedness of the
participants.
Although instrumental support was a part of every support group meeting, it was
not limited to the meeting itself. Due to the friendships that developed, the women did
not have to wait for meetings to receive support. They got it whenever it was needed by
calling, getting together, or asking friends for specific favors (like a ride to the doctor). In
this way the emotional, informational and instrumental support originating in the support
group expanded beyond that setting into everyday life. Thus by participating in support
groups the women’s social circles expanded and the benefits of participation permeated
their lives.
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In the Women’s Words: Types of Support
This section gives examples of the types of support outlined above. Examples of
informational and emotional support are based on support group experiences. Unlike the
visual and gestural forms of instrumental support described above, examples of
instrumental support are based on experiences outside the support group meeting. These
examples provide evidence of friendship formation, community action, extension of the
social network, and feelings of empowerment.
Informational Support
The most compelling reason for support group participation was the women’s
interest in learning more about lupus. Their interest usually began after being told by a
physician that either they had lupus (definitive diagnosis) or they might have lupus.6
Most women initiated their search for knowledge on the internet or in their local library.
Many also contacted the local chapter of the LFA to request information. The idea of
attending a support group was usually prompted by the support group list sent out to the
women or physician offices by the LFA. Some were aware of support groups due to
previous experience and others were encouraged by family or friends to attend.
K: How did you find out about the support group?
I: I think I saw something in the doctor’s office. Once I found out about [that] I had lupus, I read
everything I could possibly read. I searched for everything I could find. I just saw something on a
flyer... Amelia
K: What made you go the first time? Was it something that you thought about? Somebody
suggested it? How did you find out about it?
6
Women with milder symptoms (without organ involvement) and marginally positive test results were
given a preliminary diagnosis, treated and followed over time. As disease progressed, symptoms worsened
and test results were more supportive, a more definitive diagnosis was given. See Chapter 3 for a
description of the diagnostic odyssey and the women’s reaction to diagnosis (both definitive and
preliminary). The relationship between support group attendance, research and self-diagnosis (after the
possibility of lupus is mentioned or a preliminary diagnosis is given) is an area for future research.
246
I: I thought about [it]… because anytime we’ve had any kind of crisis in the family my thing
would be to get support for it and learn as much as you can with it and that kind of thing. So I
thought I could look for it. Matter of fact my son-in-law’s co-worker’s wife has it [lupus]. He told
me about that group up there…. So he brought me a flyer and I went the first time - me and my
husband… It’s really something that’s really needed especially since lupus is so new in our
society. There’s just not a lot of knowledge out there about it. Antia
K: When did you first go to the support group? How long have you been going?
I: …Maybe five years ago when I was getting a little sicker and I was getting very thirsty for
information. I was realizing that my doctor was not able to provide the information that I needed. I
knew, obviously I knew (laugh) there was a whole lot more wrong with me than just a simple
laboratory result [could show] since no one could give me a definitive [diagnosis]. June
The women’s interest in learning as much as they could about lupus was partially due to
their unfamiliarity with it but also their interest in learning how to manage symptoms and
live successfully with a chronic illness. Topics like getting insurance and applying for
disability compensation were priorities depending on financial security and disease
severity. Four areas were named by the women as important topics of informational
support: disease characteristics, symptoms and progression; treatment strategies and
pharmaceuticals; health care management strategies; and disability, insurance, and
finances.
DISEASE CHARACTERISTICS, SYMPTOMS AND PROGRESSION
Knowledge at support group meetings came from two sources: professional
expertise and lived experience. The presentations made by expert guests and the books
and other reference materials available were the primary source of professional
knowledge and expertise. Knowledge based on lived experience was not limited to a
specific program element. It was shared throughout the course of the meeting. Although
the women talked at length about what they learned at support group meetings, in their
narratives most of them focused on what they learned from each other – rather than what
they learned from the expert presentations. Their understanding of disease characteristics,
247
symptoms and progression were shaped by listening to what others were going through
and comparing that to their own experience. Comparing lived experience created a sense
of commonality and connectedness which was an important source of emotional support
but it also deepened understanding of lupus as an illness and disease. As a result, women
came to understand the complexity of the disease process based not on abstract
information but lived experience.
J: …Some of us over there at the group, we have some of the same problems. When we talk we
can relate, “Oh yeah, I had that. Yeah I had that too. Girl it almost drove me crazy.” We be talking
like that. Some of them have had problems that I haven’t experienced yet. Hopefully, I may not.
I’ve had things that they haven’t experienced yet. You see what I’m saying? So it’s good ‘cause
like if I start getting some of those problems then, I’ll know. So each time we meet, it might be a
different person there that I haven’t met because maybe that person has been out sick or
something, and so we get to find out new things about what’s going on with another person...
K: So lupus is different for every person?
J: It is. Cause in the very beginning I used to think it was the same and then as I started going to
the support group meetings then I would see that each person is really very different. Even how
they started out with their lupus was different. Jackie
I like going to the support group for the - just what it says – you get support from other people that
have had it. I get to see and listen to them talk and everything. I was like, “Oh, I’m not doing that
bad. I’m better than that.” Some of the things that I’m experiencing since it’s all so new, they’ll
say, “I’ve had that too.” So it’s really a blessing to me to be able to go once a month… I guess it’s
like being with your peers. Everybody in here has some form of it and they’ve gone through
various stages of it. So I get to hear them. Hear their complaints and the things that they’re doing
to improve it. It really helps me a lot. I really like to go there. It’s real good support there. Antia
The knowledge generated about lupus based on lived experience was used by
support group members to make sense of not only their own experiences but the
experiences of others. After sharing what her doctor told her about older women and the
likelihood of diagnosis, Reba called into question her doctors knowledge based on the
experience of the women in her support group.
… The doctor [said] that a lot of times Sjögren’s goes into lupus. We were testing along the way
to see if I had gotten it or whatever... testing the DNA and nothing… The doctor didn’t think I
would get it because of my age… Since then I’ve learned that you can get it. There are several
ladies in the support group that I attend that got it older. When they were older. I don’t think he
really knew all that much about it.
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At the time of our interview, Rita was searching for a diagnosis. After talking with a
friend about her experiences, she learned about a possible link between miscarriages and
lupus. Her friend shared this observation based on what she had heard at past support
group meetings.
I had a girlfriend that was diagnosed with lupus and I spoke with her. She and I was talking and
she was telling me that she was a part of a support group. There were women in the support group
that talked about the numerous miscarriages. She suggested that maybe I… do some research. I
did and that’s when I found out about the connection [between] lupus patients and miscarriages.
Rita and her girlfriend compared experiences. Although Rita did not say it, it is likely that
her friend’s symptoms differed from her own. For that reason, her friend recalled the
experience of other women in order to offer Rita solace and support. Sharing information
with friends based on the experience of others (labeled distal knowledge in Table 5.2)
was common among support group participants. By focusing on the collective experience
of the group, the women were able to expand their knowledge beyond individual
experience. This increased support group participants’ ability to offer consolation and
advice based on distal knowledge. The pooling of individual knowledge also increased
participant understanding and coping skills with regard to treatment strategies, financial
concerns, and health care management strategies.
TREATMENT STRATEGIES AND PHARMACEUTICALS
Most participants considered the knowledge shared about treatment strategies and
medication and its side effects to be extremely valuable information. The women
routinely shared knowledge about treatment strategies based on disease severity (antiinflammatory vs. disease modifying immunosuppressive strategies); medication regimens
(including types of medication (brand name vs. generic drugs) and dosages); and
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pharmaceutical side effects (emotional instability, weight gain, sexual dysfunction,
cognitive malfunctions, etc.).
You get support and understanding. You learn from the sharing of information of other people’s
experiences and yours. You learn about different doctors and a tremendous amount about
medication: what the medications are, what their effects are, how they’ve effected different
people. Denise
These discussions were replete with qualifying statements about symptoms clusters and
types of organ involvement. Priority was placed on tempering talk since the women
agreed that every case of lupus was unique and decisions concerning treatment strategy
or medication regimens depended on disease severity. Discussions about medication
types and dosages were usually initiated by women who were having problems with
break-through symptoms or treatment side effects. The women compared experiences
most often about prednisone, especially with regard to its effect on weight and emotions.
Discussions about treatment strategies were usually initiated by women whose
medication regime had been adjusted or changed (by their physicians) to address
worsening symptoms (changes in prednisone dosage or addition of other
immunosuppressive drugs like methotrexate or imuran) or to stave off disease
progression (treatment with cytotoxic pharmaceuticals in the case of lupus involving the
central nervous system (CNS lupus) or kidneys).
The women took the knowledge shared on these topics to give meaning to their own
experience and to apply it in their individual lives. Mouzhan used the knowledge she
learned about drugs and treatment strategies to reinterpret the significance of her
diagnosis delay. Retrospectively she felt thankful for care she did not receive when she
was younger and symptomatic which now she believes could have hurt her. Based on
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other women’s experiences with anti-depressants, Gayle decided not to take medication
for her depression. Instead she opted to use prayer as an alternative coping strategy.
But what I’ve learned in the lupus support group is maybe it was better that they did not diagnose
me down there [Southern city] because they probably would have killed me by now. A lot of
people down there died quickly because they don’t understand the drugs. They’re pumping you up
and trying to experiment to see what works. A lot of rheumatologists don’t understand the drugs
even though they’re rheumatologists. Mouzhan
Listening to the ladies in our group, when they tell me that they’re on anti-depressants, and there
are side effects to that drug too, I just say to myself and I don’t tell them, but I think to myself,
“I’m taking enough drugs.” Especially when I was on a lot of medications, I said, “I don’t need to
be taking all this stuff.” … But prayer works for me... I don’t know what I would do without it. I
really don’t. Gayle
Treatment strategy discussion also included sharing experience with regard to
disease activity tests (e.g. sedimentation rate, red or white cell blood counts, creatinin
levels, etc.).7 The women compared their understanding of the purpose and meaning of
tests so that they were better prepared during the clinical encounter when their test results
were presented. Understanding tests was important to the women since recommended
treatment strategies often rested on test result findings. Understanding tests was also
important because it helped the women claim power over their illness. By demystifying
biomedical language and procedures, the uncertainty of the clinical encounter was
lessened thereby decreasing the overall level of uncertainty associated with living with a
chronic illness. Therefore the acquisition of knowledge gained through support group
participation lessened patient anxiety and facilitated coping.
HEALTH CARE MANAGEMENT STRATEGIES
Due to the complexity of the disease (affecting multiple systems and/or organs
simultaneously) and the specialization of biomedicine, the women encountered
7
See Chapter 3 for more discussion on the understanding and use of diagnostic tests during the diagnostic
odyssey.
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significant challenges with regard to health care management. The primary and most
daunting challenge was finding a doctor who could serve as the primary source of
medical advice. Women asked each other for physician recommendations at meetings.
These personal referrals were always done away from group activities, usually before or
after the formal portion of the meeting ended. Since finding a physician “you can trust”
was an essential part of successful living with chronic illness, the priority placed on
personal referrals was not surprising. When Mouzhan moved to the Atlanta area, she tried
unsuccessfully to find a rheumatologist until her friends at the support group offered
helpful advice.
K: How did you get your doctor’s name?
M: From the lupus support group. [Facilitator name] and the girls, they all said [doctor’s name].
[Doctor’s name] got some problems but… this other young lady told me [that]… she almost died
with this other rheumatologist. I did see another rheumatologist…. He was awful. He was selling
Shaklee products to his patients. Like you’d go in his office and all his books they should be
rheumatology books and internal medicine; he had Shaklee product books. (laugh) … I did see
one or two rheumatologists before ____ (name of suggested rheumatologist). I was impressed with
her. She was knowledgeable. She was smart. She spent like almost two hours with me the first
visit! I was shocked. Mouzhan
For some women the challenge of finding a good doctor was amplified depending on the
number of bodily systems and organs affected by lupus. Mandi’s overlapping symptoms
and multiple organ involvement precipitated such a long list of doctors that she lamented
the need to add another one to the list.
… I do not want to add another doctor to the list. I have a Cardiologist, I have a Neurologist, I
have a Hematologist, I have my Rheumatologist, I have an Internist, and my GI doctor… I didn’t
want to add an Endocrinologist to the list because I don’t feel like going to another one. I just
don’t feel like going to see him. I just asked him to keep my thyroid monitored.
The trouble women encountered finding good medical care was sometimes made worse
by difficult and unhelpful office staff. Difficulties arose with regard to setting
appointments or getting in touch with doctors during symptom flares, transferring
medical records from one specialist’s office to another, and filing insurance claims. The
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mundane but necessary tasks that accompany chronic illness and its management depend
on the efficiency and cooperation of biomedical office staff. Rude and discourteous staff
not only increased anxiety but also made some women take on the management of their
illness like a fulltime job. The women who did this were sicker and were usually also on
disability. The other women had to manage the bureaucracy while continuing to work,
raise children, and generally live up to their multiple responsibilities.
DISABILITY, INSURANCE AND FINANCES
Approximately 36% of the women (58% African American, 18% White) were on
disability when interviewed. All of these women were support group participants. One of
the most popular topics at meetings was disability. When guests like lawyers or state
employees were invited to present and answer questions about disability, meeting turn
out was high. Although many of the women who attended meetings were not on
disability, most understood that given the course and progression of lupus, the need to go
on disability might arise. It was also likely that women unfamiliar with the process
personally, may have heard stories told by other women about the difficult application
process. For these reasons meetings about disability were lively and well-attended.
Every woman on disability in this study told me about her experiences getting on
it. Not a single woman was approved the first time she applied. In fact, most women
waited a period of two to three years before approval was granted. During that time they
were routinely and repeatedly declined until they were summoned to appear before a
judge who would decide their case. Below are few selected quotes about the disability
process and the impact it had on the women:
… Going through the disability process was just such agony. It was like committing suicide. You
know, like saying “My life is over and I’m washed up and done in…” but we were about to lose
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our home. The long term disability at work would not pay until I’d gone through this social
security process. Depending on who we talked to in the insurance office, we got a different
answer… Josette
During all that time I was battling with the VA - the Veteran’s Administration. Because when I
got off active duty I applied for disability… they gave me a service connected condition for 0%;
which means no money and very little care other than what anybody else would be eligible for
with the VA. So for about five, six years, I battled the VA with paperwork. Going here and going
there. Trying to get somebody to help me [to] do whatever it took to get them to pay attention. So
one year they gave me 10%. I appealed. Then they gave me 40%. I appealed. (laugh) Then they
gave me like … it was probably about 70%. I appealed. … when they gave me a 100%, it was ’96
or ’97. So you see, from ’85 to ’97 that’s how long it took them to say, “Okay, yeah she has
something that won’t allow her to work.” Kate
Then I had a big decision to make as far as getting on and applying for social security disability. I
was so sick, like I said I almost died. It took them almost two years before I could get on
disability. It took them that long to approve it. I mean I had no money for myself coming in and it
took them that long to approve it. I was real sick. They saw all the paperwork ‘cause my doctors
was writing and letting them know. They just did not want to approve it. To this day I don’t
believe I would ever have gotten on disability if I had not written to… Sam Nunn’s (U.S. Senator
from Georgia) office. Jackie
The women had various means of sustaining income while they waited for
disability approval to come through. Most of them continued to work in spite of their
symptoms. Many decided to work part-time because they could not physically manage to
work fulltime. For married women like Magda the loss of employment was difficult but
she was so sick, she really did not have a choice. When she quit her job she lost any
possibility for disability retirement. She was in her mid-fifties when she quit.
Well, I had worked for social security for 20 years and then with the government for only 8 years.
So since I was with them only eight years, that didn’t qualify me for disability retirement… I
could have gotten disability had I stayed with them and just used up all my [sick leave]. I had
bushels of sick leave. But I just quit. It was so bad. It was so bad… I would have to sit down on
my way to try to get to the office. I would have to stop at different intervals and sit down and was
having to stay up constantly and that kind of thing.
The decision to go on disability for single women was more complicated. Reba could not
do it because she could not afford to live during the three month conversion period.
When I got sick it was very difficult. That’s one of the reasons that I didn’t go to the hospital in
the early stages. I’d just signed a contract for a new church. I started January 1st and this was like
two weeks into it. When you’re single, supporting yourself - I wasn’t married at the time - and if
you do go on disability under our system, you have to wait 90 days. Who’s going to support me
for 90 days? No one. I had to work. I couldn’t take off. There’s not a whole lot of people out there
that are going to be saying “Yeah, sure, I’ll pay all your bills for three months.”
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Although the personal salience of the topic of disability varied, everyone shared
concerns about insurance and finances. Women of all backgrounds and experience
complained about the health care system in the United States. The observation that sums
up this dilemma is Denise’s reaction to the imminent expiration of her health insurance.
K: I actually had a question about your insurance. So you actually had your insurance from the
University of [State]?
D: Yeah. Well the University of ____ (state name) is part of the state so I have insurance from the
state.
K: Is there any point in time when they are going to say, it’s now 5 years later, you’ve got to find
your own insurance?
D: Yep.
K: Has it happened already?
D: No, but I anticipate it happening in January, February. I stopped working in January of ’95 so it
is a matter of when it actually kicked in. But it will be the first quarter of next year.
K: Do you have any idea what you are going to do?
D: No. ... I want to do some research. Find out what options are. I want to call the insurance
company and find out how they handle people. Do they have any options for you to consider. The
thought of not being covered by insurance scares me to death. Especially with a chronic illness.
Not just because you need the service but because insurance companies refuse coverage. I know
many people with lupus who don’t have insurance. I guess there are various things out here for
people who are indigent status. I continue to get better I guess I hope that I will get to the point
where I won’t need that, but I don’t know. My application for social security disability has been
denied but I’m still appealing an application, a claim for disability in ____ (state name).
Denise’s predicament was typical. Support group participants routinely discussed
problems with insurance coverage and its impact on their lives. They shared with each
other information about state programs focused on offering interim insurance and means
for accessing information and support needed to work things out. The names of helpful
government employees in the Social Security office or private lawyers were readily
exchanged. The kind of encouragement the women offered each other was based on their
own experience but there was also collective agreement about how difficult it was to deal
with the bureaucracy of public social services and private insurance.
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Emotional Support
Feeling understood was the most common type of emotional support mentioned.
In their narratives the women placed great importance on understanding others and being
understood. Support group members articulated their appreciation for this aspect of
participation since “understanding” was something that they felt they did not readily
receive either from family or friends. Initially Amelia had a hard time with her family
until she showed them a video tape about lupus. Julie remarked about the general lack of
interest and awareness about lupus and its symptoms. She described the difficult social
situation this could create since the uninitiated may react with surprise or horror over
what the initiated would consider unremarkable.
K: What is it that you get out of the support group?
J: Understanding. (giggle) Being able to vent and not feel guilty. Yeah, that’s really it –
understanding. It’s other people who know what you’re going through and not judge. It took a
while for my family to understand because there’s nothing visible to look at, and to them it’s just
like “Well, you don’t look sick, just get up!” I think that made it worse for me because that made
me feel bad. Amelia
It’s very very helpful to have somebody who knows what you are talking about… it’s like we
were saying at the table the other day - all of these bizarre things [happen]… “I had my arm fall
off and it was reattached last week...” (laugh) People will look at you like, “Oh my God, what is
wrong with these people.” (laugh) Nobody else understands unless you’re involved in this
(laughs).
Even the initiated had problems understanding what they experienced at support group
meetings. When Hope attended her first meeting, she was not prepared to meet women
who were “happy” and “content.” In spite of the difficulties she was having relating to
the other women, she got the sense that they understood what she was going through.
I went to my first meeting and boy those ladies in there was like a challenge. All of them had had
lupus for years and they were happy and they were content and they had so much love. I was still
angry [and] confused and I didn’t wanna be fat. So I went to the meeting. I had my expectation of
the first meeting. I thought somebody was going to tell me a cure for lupus and how I could not be
sick taking prednisone. But I went to the meeting and I heard people talking about different
medications. They were also talking about herbs. They had a speaker... they kind of knew what I
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was going through. It seemed like because they were doing so much better than me that they
didn’t understand. But somehow I knew they did because everybody in there had lupus.
Hope had just been diagnosed when she started to attend support group meetings.
Denise also started attending right after she was diagnosed. As time passed and her
disease progressed, her willingness to talk with others outside the support group about
lupus and its impact on her life decreased. Denise, like other women, found the
understanding given at support group meetings to be preferable to other sources of
support.
K: In terms of coping with lupus, what do you do to cope with it? How do you deal with it on a
daily basis?
D: Hmmm. This is a hard question… First of all it varies. It really depends on where I’m at. You
know if I’m at a point where I’m very depressed or if I’m at a point where the flare is much worse
or if I’m out of bed and feeling better. It really depends. I found that really outside of talking to my
doctors, I don’t really care to describe what I’m going through. Or the support groups because in
Atlanta one of the greatest assets has been the support groups… I find that beyond my lupus
medical world and I’ll include the support groups in that, beyond that world, I’m less inclined to
describe what it involves… So people ask me out of curiosity and I found myself being more
reluctant to share information... So, I tell people that I figure experiencing it is enough. I’d rather
not discuss certain things... I’ve usually been comfortable saying I have lupus but when I became
very, very ill more recently in the past couple of years I’ve become less comfortable.
By limiting disclosure of her illness experiences, Denise was better able to control its
impact on social relationships. Compartmentalizing expressions of illness experience is a
self-protective coping strategy. Although is may preserve self, it can also lead to feelings
of social isolation. Denise’s limited circle of disclosure developed gradually over time.
For other women (like Amelia above) the transition was abrupt and prompted feelings of
social abandonment and misunderstanding from family and friends.
Bury (1982) characterizes this phenomenon as biographical disruption. For the
chronically ill it involves a re-evaluation not only of self but also social relationships
(Charmaz 1997). After diagnosis, a number of women felt isolated within their social
circles. As part of their quest for understanding the diagnosis, many of them contacted the
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LFA to request information on lupus. When they did this, they also received information
about support group meetings held throughout the state. The desire to gain understanding
prompted many women to attend support group meetings. Once in attendance, the
understanding provided by others started to fill emotional voids. Previous feelings of
social isolation were counteracted by feelings of social connectedness. The importance of
the relationship between understanding and feeling connected is evident in the narratives
of women who stopped attending support group meetings. These women expressed a lack
of connection to other support group members. For example, Sally stopped going because
the membership of the group changed so much from month to month that she found it
hard to “establish any ongoing relationship” in order to have a “meaningful exchange.”
After struggling for months with clinical depression after “God did not heal me”
coupled with feeling abandoned by her friends, Rhonda decided to contact the LFA.
When she did, she realized she was not alone. She also discovered that other women were
experiencing similar depressive symptoms and that prednisone can induce emotional
instability.
I went to the Lupus Foundation. I was like, okay, I’ve got to do something… because all my
friends had kind of deserted me. I really didn’t have anybody. When I went to the foundation and
the support group it was like, “Oh, okay. I’m not by myself. This prednisone sucks!” (laugh)
Reba’s feelings of social isolation stemmed largely from having moved to Atlanta.
Nonetheless, she found “fellowship” with other women by attending support group
meetings and talking about her illness experiences.
K: What are the kinds of things that you feel that you benefit from by going to the support group?
R: Just meeting other women who have the same disease I have. And just fellowship period
because I don’t [know] anyone here. I don’t even know my neighbors. I’ve never been in a place
were I didn’t know my neighbors. (giggle) You can go out and say “Hi,” and talk with them, but
then they disappear and it’s like, o-k-a-y. It’s so strange. So I figured that if I’m going to survive,
especially now that I’m not working… it’s kind of lonely here and then my cat died (sigh). So just
basic fellowship and being with other women.
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Jackie talked about the feelings of connectedness she experienced in terms of familial
support.
… when I first found out I had lupus, I started going to the lupus support groups meetings…
Everybody is so nice. I mean it’s just like a family. There’s a closeness, you know? When
somebody is sick or not feeling well and you send that person cards or that person sends you cards
or they’ll send you flowers or whatever. It’s a closeness. It’s like a family.
Characterizing the support group as surrogate family underscores the significance of the
social relationships formed at support group meetings. The information and experiences
shared by participants not only lessened the emotional turmoil associated with
biographical disruption, but also facilitated understanding based on feelings of common
predicament. While the women benefited greatly from shared common experience, they
also benefited from learning about experiential difference. The realization of common
experience fueled coping strategies linked to connectedness (i.e. building social
relationships). The realization of differing experience fueled coping strategies linked to
social comparison.
Over time participants understood the relationship between disease severity and
illness experience. This understanding came as a result of round-robin updates. During
that time narratives about lived bodily experience were described. Upon hearing those
accounts, the women learned about not only shared but also differing experience. As the
women gained insight into the suffering of others, their perspective on personal suffering
changed. The most common emotional response generated as a result of this process was
appreciation and thankfulness for personal illness experience in comparison to others.
I’m very fortunate that I’m able to walk without a cane and do the things that I do. I really feel that
way because I know that Kitty is in much worse shape than I am. She’s younger than I am but
she’s had a really difficult time… I just always feel very grateful… it could be so much worse.
Connie
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I try not to feel sorry for myself as far as the lupus is concerned because the advantage of the
group is that it keeps me grounded. It keeps me from feeling sorry for myself because there are
others who are so much worse. Amelia
If I have a down morning when I come back I’ll feel great. Everybody’s lupus is different.
Everybody’s is different. You might think today is really a bad day. You might go there and hey there is somebody much worse off than you. You see what I’m sayin’? Or there’s somebody
feeling much greater than you and then with all that combined it just peps you up. It helps you to
understand your problems better I think. Jackie
The emotional impact of listening to other women’s experience was sometimes
overwhelming. A quiet hush often accompanied the recounting of particularly difficult
and/or life threatening disease experience. New support group members voiced concerns
about the potential course of their own illness based on the experience of others. Skilled
facilitators were sensitive to these issues and harnessed the emotional impact of such
stories, either to build camaraderie around helping a participant in need or in pointing out
the diversity of lupus experience.
The experiences of Vicky and Didi provide insight into both ends of the story
telling spectrum: Vicky as narrator and Didi as listener. Vicky was diagnosed with lupus
nephritis which quickly led to advanced kidney disease, dialysis and ultimately kidney
replacement. Her initial illness experiences were harrowing, replete with diagnostic
uncertainty and medical mistakes. Didi was diagnosed with muscular-skeletal symptoms
without organ involvement. Shortly after diagnosis, she began attending support groups
to learn more about lupus. Her initial experience was so troubling that she considered
never attending support group again. Due to the difficulty she experienced finding a
doctor when she moved to Atlanta, she reconsidered.
K: Right after you were first diagnosed when you went to the Lupus Foundation, did you attend
support groups or think about attending support groups?
V: Oh yeah. Mm-hm.
K: Mm-hm. What was your thinking on support groups?
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V: …when I first got started going to in ____ (state name), I went to support groups a lot. Most
people with lupus do not get as sick as I have been (clapping for emphasis). When I was helping
with my little story, I was scaring the be-Jesus out of them. I’d get the look on their faces like, “Oh
my God!” They looked like, “Oh!” (laugh) I was scaring the heck out of them. So I kind of said,
“Hm, maybe I shouldn’t be telling them this.” I had mixed feelings. It’s not the fact that I
survived. It’s like, “Oh! That can happen to me?” It’s horrible. I wouldn’t want that to happen to
anyone but it could happen. In most cases it doesn’t. …But people just got so horrified when they
heard my story… (laugh) Vicky
K: How is the support group here compared to the one in ____ (state name)? Is it different?
D:… the one I went to [in Atlanta] she (facilitator) seemed more encouraging. She gave you like
[hope] that there’s hope and something to look forward to. She like, “Everything isn’t always bad.
You can go in remission. You can live your life.” It was more positive instead of just hearing a
bunch of people gripe about themselves. I understand people need to be heard and want to vent,
but if they have new comers, or even the old ones, they need that word of encouragement. That’s
what I wasn’t gettin’ from the other ones. They would just sit there and they would tell like their
things. I’m like, “This is depressing.” So it really wasn’t pulling me in. But with [facilitator name
in Atlanta], it pulled me in because she made it lively. Didi
The sharing of experience also created a sense of helping others. While telling
their stories, the women talked about lessons learned. Sharing insights provided not only
information potentially valuable to others but also enhanced the women’s feelings of self
worth. These feelings of empowerment were based on the realization that lived
experience could benefit others. The knowledge generated by lived experience increased
understanding of potential problems as well as potential solutions. Providing such support
for others was perceived by the women as a social service. The provision of such aid was
beneficial and resulted in mutual social satisfaction. In addition to providing advice based
on lived experience, the women used each other to gauge the validity of their symptoms.
This type of conversation was usually initiated by someone who wanted to know whether
anyone else had ever experienced what she was experiencing. Comparing experience in
this way, the women were able to validate personal experience and decrease the
uncertainty which accompanied new bodily symptoms and sensations.
… sometimes it’s good for me like, “Oh, I’m having this symptom…” and then you hear
somebody else, “Oh, yeah. I have that too.” You feel better. Whew! As long as I’m not having
something new that nobody else has had, (laugh) or hasn’t ever had… That’s when I get nervous.
Lenore
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When I went to my grandmother’s funeral… the whole right side of my face twitched. It got stuck
there and then I started feelin’ numbness goin’ down my arm and down my leg. It felt like I was
about to black out. It was like dizziness. I asked the rheumatologist about that. I said, “Well, I
went to my support group and they were saying that it sounded like it was a stroke...” She said that
there was nothin’ they could determine if it was because it (stroke) was a year ago. Didi
K: Have you attended support group meetings?
I: Oh yeah. Tons of them! (laugh)… Was a facilitator in [State] so... (laugh) during that time they
had a support group that met… once a month in [city]. I got involved with that group not in doing
anything but just attending. I was able to call them when I had surprises which was helpful.
K: So what was the kind of support they were able to give you?
I: Well mostly, I would call them up for a reality checks. “Okay, is this real? Is this really
happening?” You know! (laugh) And that was a great benefit at that time. Kate
Kate’s question about whether her lived bodily experience was “real” harkens back to her
previous interactions with physicians.
While searching for a diagnosis, she was told on numerous occasions that her
symptoms were psychosomatic. Two years before her lupus diagnosis she was diagnosed
with fibromyalgia. Around that time she started experiencing muscle twitching at night in
her legs and back. It felt like there was something crawling in her mattress so she would
get up during the night to check under the sheets. When she could not stand it anymore,
she decided to tell a friend who also had fibromyalgia about it. “She said you should just
tell you doctor and ask him about it because she had experienced it. So I was like, “Yeah
right. I’m going to tell this man one more thing. He’s going to look at me like I’ve lost
my mind!” Eventually Kate did tell her doctor and he prescribed an anti-anxiolytic
medication which took care of the problem. Kate’s misgivings about her own experience
and her reliance on a friend for validation and encouragement was based on an
underlying concern about physician disbelief in lived experience. Support group
members had the same misgivings about personal experience. Regardless of whether that
insecurity was seeded in previous interactions with physicians, the women relied on
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collective knowledge to determine the veracity of lived experience. Kate described the
source of her misgivings as follows:
In my generation we grew up thinking doctors were like miracle workers. They could fix
everything. They could feel for this, they had a feel for that and I was totally disillusioned. (laugh)
Over that period of time [before diagnosis], I was totally disillusioned… I have a very curious
mind and so I would look up stuff to try to find out what fibromyalgia was and all that kind of
thing... Then after they said it was lupus, I found a lupus support group. I got literature that way of
course so I could find out more along the way. But it was still so frightening because you know
the doctors won’t tell you what the possibilities are. So you get to experience the surprise all on
your own, and then you think, “Well one more thing. How can I trust somebody about this?
They’ll think I’m really crazy now!”
Instrumental Support Beyond the Support Group Meeting
There were three inter-related sources of instrumental support initiated at support
group meetings which extended into the women’s everyday life: friendship, social
networking and community service. What distinguished instrumental from informational
or emotional support was its tangibleness. Inside the confines of the meeting instrumental
support was limited to verbal or gestural affirmations. Outside the meeting, it took the
form of rides to the doctor, food gifts, errand runs, and other concrete and/or material
forms of support. Although the informational and emotional support gained through
support group participation was substantial, until these forms of support were rooted in
meaningful personal relationships, the potential impact of support group participation
was limited. Once friendships formed, monthly meetings proved an insufficient source of
support for some women. When this happened phone calls, e-mails, and social
rendezvous helped to develop nascent social relationships into deep friendship. Some
women stayed on the periphery and did not take steps beyond the monthly meeting to
solidify friendships. However, most regular or long time members were in contact
between meetings. By doing so they were able to offer each other various types of
instrumental support.
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Maggie’s description of the meaning of support group friendships clarifies their
importance.
But I tell you that group it’s a real big support for all of us. (giggle) I mean the friends that we’ve
all made because of our illness… it just blows your mind. (giggle) It blows your mind. It’s been a
lifesaver… That group is a blessing. It’s a blessing.
As friendships formed, the women’s social circles began to expand leading to new
possibilities for social networking. Julie summed up its usefulness given the
unpredictability of symptoms and the need to differentiate between symptoms which
required biomedical attention and symptoms which did not. Julie’s friends made it
possible for her to compare lived experience between meetings, thereby decreasing
uncertainty about illness symptoms and potentially accelerating biomedical care seeking
behavior.
It’s a good thing now I’ve got a network of people that I can call and say, “Is this something I
should mention to Dr. ____? (laugh) They can say, “Oh I’ve had that problem or I know
somebody who has it. And yes it is connected and you probably should mention it.”
When Kitty got really sick, she received tremendous instrumental support from support
group and church friends. In spite of the necessity of the support, she still found it
difficult to ask for help. At a support group meeting she talked about this challenge. She
said it took courage to admit that you needed help. The courage she needed to muster had
to do with both her independent nature and the extent of her needs. Kristian, a friend and
co-leader of the support group offered her that help. They met as a result of the support
group but they became friends in a way that transcended the bounds of chronic illness.
They were friends because they were friends – not because they attended the support
group meeting and both had lupus. It took about 1 year for the effects of the
immunosuppressive drugs that Kitty was taking to drive her into bone marrow failure.
Kitty was unable to cook for herself due to cognitive dysfunction related to her CNS
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lupus. During that year and up until her death, Kristian offered her soup, rides to the
doctor, phone conversation, and much more.
K: You get sick after gamma treatments?
I: Yeah. I have a reaction to gamma, so I’m sick totally that day. The other big thing in my life is
that I need a lot of sleep now. I need really twelve hours of sleep. If I don’t get twelve hours, I’m
really just tired and yucky and all that sort of stuff. So that’s kind of where I am. But I’m just
really so fortunate to have so many people. Kristian takes me places. She makes soup for me on
gamma days and stuff like that. Because I don’t cook very well (laugh). I can’t put all the
ingredients together right (laugh). For some reason, I just keep messing it up (laugh). So anyway,
people have been very good, pretty nice about [offering help]… It’s just as I said at that support
group, “it’s the courage to ask for help.”
Attending support group meetings was a means for the women to get plugged into
community service activities on behalf of the LFA. Kitty volunteered to facilitate a
support group and organized a fundraiser in support of the local chapter. She also
traveled to Capitol Hill with the Georgia delegation to lobby for the “patient bill of
rights” and increased funding for lupus research. After feeling isolated and abandoned by
her friends, Rhonda joined a support group meeting. Soon after, she became active in
community service and was eventually asked to serve on the Board of Directors for the
local chapter.
The support group has been a really important thing for me because it allows me to be a part of
something with other people. I enjoy meeting everybody but also facilitating. It let’s me do
something to give something back. Working for the Lupus Foundation, trying to do the
lobbying… I think that’s where I spend most of my energy. Kitty
Then I started going to the support groups and that’s when… the birthing of my volunteer work
and advocacy and stuff [started]. Because I started going to the support group meetings and I
started getting there early enough so I could see if I could help out. You know put the chairs in
order… Then in November they had a Lupus Awareness Day and I helped out with stuff and they
needed a board member. They looked at me and they said, “We think you might work.” So I ended
up on the board. I still go to support group meetings and stuff… Rhonda
Finding community was an important part of coping with lupus. The women who
attended support groups expressed their appreciation for feelings of connectedness and
opportunities to serve others. This service was as simple as offering advice at a support
group meeting or as complicated as serving on the LFA board. Volunteer service became
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a way of life for many support group participants. The creation of friendship, the
expansion of the social network, and the possibility for future service on behalf of lupus
patients, gave support group participants a unique window into understanding into illness
experience as well as serving others.
The Functioning of Support Groups, Epistemological Positions, and Friendship
The appeal of support groups to the women in this study is of great interest to me.
Not only because of the types of support they received but also because of the educative
process of support group involvement. The process began with a woman’s interest in
learning more about lupus. What made it an interesting subject for study was that each
woman brought to the group a differing point of view based not only on her illness
experience but also on her personal characteristics. The women shared acceptance with
each other as part of the group process. Insodoing, they opened themselves up to ways of
understanding that may have seemed foreign at first. But given the dictates of the group
process, over time they reformulated their understanding of themselves and their illness
experience. Previous research on support groups has focused only on the superficial value
of participation. Based on the experience of these women, it is clear that the value of
participation is the promotion of learning through connectedness with others.
The educative process of the group rested on a form of verbal communication
which was peculiarly female. The emphasis placed on “agreeable but honest talk” and the
great care taken to find things in common points towards an epistemological orientation
that is unusual in other contexts. For this reason, the work of Belenky and colleagues
(1986) is used to explore the educative process of support group participation. What this
analysis reveals is that although the women occupied various epistemological positions,
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as support group members they participated in a collective process which validated
subjective experience and promoted epistemological change. It is further argued that
connected knowing is rooted in the cultivation of female friendship.
Women’s Ways of Knowing: Epistemological Positions and Group Process Dynamics
In Women’s Ways of Knowing: The Development of Self, Voice, and Mind (1986),
Belenky and colleagues describe five ways that women view reality and draw
conclusions about truth, knowledge, and authority: 1) silence; 2) received knowledge; 3)
subjective knowledge; 4) procedural knowledge; and 5) constructed knowledge. Based on
the work of William Perry (1970), Belenky and colleagues propose these epistemological
positions as a way to understand women’s ways of knowing. Support group participants
occupied positions across this spectrum of knowing. Although the epistemological
positions are described separately, the distinctions made are for the purpose of argument.
In practice, the women embodied multiple ways of knowing simultaneously. This fluidity
was apparent at support group meetings as the women stretched themselves beyond their
own position in order to understand the perspective of someone else. These shifts in
epistemological orientation occurred as a result of connected knowing and would not
have been possible without the benefit of the group process.
Silence
Silence, as a way of knowing, was rare among members. This was probably
because the women who chose to attend understood that social interaction through
verbalization would be part of the experience. Given that women in this category
represent “an extreme in denial of self and in dependence on external authority for
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direction” (Belenky et al. 1986:24), it is unlikely they would have decided to attend of
their own accord. If they were to find their way to a meeting, undoubtedly the group
process would have been too intimidating and driven them away. Silent women,
however, also feel passive, reactive, and dependent. These states of being were to a
greater or lesser degree familiar to women with lupus due to the expectations placed upon
them during visits to the doctor. Historical emphasis placed on patient submissiveness,
obedience, and passivity in the clinical encounter fits silent women well since they tend
to see authorities as “all-powerful, if not overpowering” (Belenky et al. 1986:27). From
this perspective, the self/patient is passive and incompetent and must rely on others to
“figure things out” and make them right (Belenky et al. 1986:29). Although some women
may have inhabited this state of being at one time, most women who attended support
group meetings had moved beyond silence as a way of knowing.8 A woman who was
“silent” could not have abided the group process because it depended on a level of
introspection and critical thinking that had not been realized.
Received knowledge
Received knowledge was central to the support group process. It involved
listening to the voices of others. “Unlike the silent, who think of themselves as ‘deaf and
dumb’ and are unaware of the power of words for transmitting knowledge, women who
rely on received knowledge think of words as central to the knowing process” (Belenky
et al. 1986:36). Words were powerful in group context because women were usually
“relieved to hear others saying the very same things that they would say” (Belenky et al.
8
The uncertainty associated with biomedical diagnosis including the objectification of subjective
experience and psychosomatic diagnoses (see Chapter 3), may have accelerated the women’s movement
between epistemological categories.
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1986:37). They had a tendency to shape their perceptions and thoughts to match others.
Upon this basis, intimate friendships were formed. Although some support group
participants may have taken to heart the perspectives expressed by other women, they
were more likely to use the intimate experience to learn to differentiate themselves and
their opinions from others. As Belenky and colleagues suggest the symbiotic quality of
friendship based on received ways of knowing “provides women with experiences of
mutuality, equality, and reciprocity that are most helpful in eventually enabling them to
disentangle their own voice from the voices of others. It is from just such relationships
that women seem to emerge with a powerful sense of their own capacities for knowing”
(1986:38).
There was a tendency for those women who “think that they receive all
knowledge” to consider authorities rather than friends as sources of truth (Belenky et al.
1986:39). This was occasionally evident in support groups when women parroted
information their doctors gave them. Their words reflected a style of learning that
equated received knowledge with truth. When challenged in this circumstance, these
women often lost their voice. Preferring to remain silently resolute rather than call into
question the “truth” of another. These women also questioned the interpretation or
opinions of others if they differed from what they were told by their doctor.
One such incident occurred during a discussion of flare causation and diagnosis.
June, a relatively new member to the group, said that she went to the doctor because she
knew she was having a flare. She described her symptoms and the doctor ordered some
tests. When the tests were done, he told her that she was not having a flare because the
results were negative. He suggested that maybe she had the flu instead. She accepted his
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diagnosis and mused to the group about how confusing symptom flares could be. This
prompted some comments about how doctors seemed to believe test results more than
what they were told by patients. Most women agreed that determining what was and was
not a flare could be confusing. Some confided that since they knew when they were
having flares, they would adjust their medication (usually prednisone) until they felt
better.9 If their symptoms persisted, then they would go to the doctor for help. Others
observed that doctors made mistakes and that tests did not show everything. They
encouraged June to pay more attention to what her body did during a flare and to write it
down so that she could share it with her doctor.
After the support group meeting, I asked her to join the study. She said that she
had not yet been diagnosed and that she was not sure if she was going to continue
attending the support group. I asked her “Why?” She said she did not know whether to
believe that what the women talked about applied to her. June’s reaction is not surprising
given the fact that she was still waiting for a diagnosis. In her narrative, she described her
diagnostic odyssey as a mystery that she and her doctor were going to solve. She referred
to herself and her doctor as “we.” “So every muscle, every joint hurts, but we feel the
disease has hit the muscles even more. We feel like it’s a fibromyalgia tack [moving]
toward probably lupus…” Her use of “we” combines self with other and may signal
dependence on physician expertise and/or the importance she places on it. In joining
herself with him, she becomes dependent on the knowledge he imparts about her lived
experience. June’s reliance on his expertise is typical given her lack of diagnosis. Most
women in this predicament occupied a position as receivers of knowledge since diagnosis
9
Some physicians allow their patients to increase and decrease their steroid dosages. This facilitates coping
with illness symptoms and gives the women more control over their suffering.
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must be sought from and meted out by biomedical practitioners.10 Whether external
authority (received knowledge) was considered the only source of truth depended on the
extent to which lived experience was considered to be a source of truth. Subjective
knowledge is based on an understanding of truth as “personal, private, and subjectively
known or intuited” (1986:54). Subjectivist knowers move “from passivity to action, from
self as static to self as becoming, from silence to a protesting inner voice and infallible
gut” (1986:54). “For women at the position of silence and received knowledge, there is
absolute truth that is true for everyone; at the position of subjective knowing, truth is
absolute only for the individual. The subjective knower…sees truth as subjectified and
personal” (1986:69).
Subjective Knowledge
Subjective knowledge was essential to the support group process. It accepted
subjective experience as truth and encouraged listening to the “small voice” from within.
It represented a transition away from the silent self with improvements in “self-concept
and self-esteem, morality and behavior” (1986:54). Subjective knowers relied on their
“intuitive processes” to understand experience. Belenky and colleagues (1986) consider
this “an important adaptive move in the service of self-protection, self-assertion, and selfdefinition” (1986:54). Indeed, women who voiced their experiences from a position of
subjective truth seemed to acknowledge their greater autonomy and independence.
Sharing of this kind typically acknowledged everyone’s right to their own opinion but
privileged personal understanding over others. For a number of years Doris searched for a
10
Being a recipient but not an originator of knowledge prompted some women to rely too much on
direction from others. See Chapter 6 for discussion on “grateful patient syndrome” and how it contributes
to decision making with regard to treatment strategy.
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good rheumatologist and finally found one through a support group friend. At the support
group meeting and in her interview, she expressed great frustration over having to wait
hours to see that doctor in spite of the fact that she always had a scheduled appointment.
Many of the women echoed her frustration but pointed out that that is the price for seeing
that doctor. The delays were blamed on her popularity and the growing number of her
patients. One woman justified the wait based on the fact that since she spent a lot of time
with every patient, each patient could expect that same attention. Doris would not accept
this justification and remarked: “I don’t know what’s going on there (in the clinic) but it’s
not good. (laugh) I figure maybe she just wants to get rid of me as a patient.” Doris’
reluctance to accept the opinions and interpretations of others is indicative of subjective
knowing. She stood up for her truth: appointment delays are unacceptable and no
explanation can justify them. Her resolve signals self-protectionism rooted in self-respect.
She refused to accept the status quo and in so doing moved towards greater autonomy
and independence.
Not all subjectivist knowers are as self-assured as Doris. Many are tentative and
unsure of themselves. As they begin to listen to their inner voice, interpret experience and
articulate knowledge, they look to others for confirmation. The support group setting
provided a safe environment for this to transpire. “…[B]y being given the opportunity to
talk things over with a sympathetic, non judgmental person with similar experiences, a
woman can begin to hear that maybe she is not such an incompetent, a dummy, or an
oddity. She has experience that may be valuable to others; she, too, can know things”
(1986:60-61). When Anisa attended her first meeting, she felt like she did not have much
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to say. The other participants helped her realize that not only were they interested in
hearing about her experiences, they also wanted her advice.
It was funny, I didn’t think anybody wanted to hear all that was wrong with me. Because we go
around the table and I said [to myself], “Oh they don’t want to hear.” But then other folks started
going on about what was bothering them. I still didn’t want to [talk] but then they kind of coaxed
it out of me. Then it turned out a lot of folks were experiencing the same things [as me] - kidney
problems - and they hadn’t gotten good answers. [Then] they asked me for advice.
Subjectivist understanding of lupus was based on personal experience but this did
not prevent them from listening to others. As Belenky and colleagues observe:
“Subjective knowers may be shaky about their own judgment but are proud if others
affirm their conclusions and opinions” (1986:68). The periodicity of symptoms creates
feelings of imbalance and uncertainty. As a result, it is sometimes difficult to understand
lived bodily experience. This uncertainty led to what Belenky and colleagues describe as
an “unsettled sense of an ever-changing self” (1986:85). Subjectivists used listening and
observation to make sense out of what they were going through. Listening and
observation are “the primary means they have available for articulation and
differentiation of self. They watch and listen to themselves and begin to notice inner
contradictions; they watch and listen to others and begin to draw comparisons between
their own and other people’s experiences” (1986: 85). At this stage, observation and
learning were important. There was a heightened awareness of bodily functioning and
critical thought about the relationship between physical symptoms and disease course. As
awareness of physiological experience of lupus grew, each woman began to understand
her constellation of symptoms within the universe of possibility. This realization was
based on the knowledge of self when compared to the experience of others.
Since comparisons were continually being drawn between self and other,
disagreements over the interpretation of experience sometimes happened. When this
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occurred, subjectivists agreed to disagree. This decision rested on the widely held belief
that subjective experience was distinctive. Therefore, in group context, no one was
permitted to openly doubt the veracity of another’s subjective experience. “When faced
with controversy, subjectivist women become strictly pragmatic – ‘what works for me.’
They refer back to the centrality of their personal experience, whether they are talking
about right choices for themselves or others. They insist that, since everyone’s experience
is unique, no one has the right to speak for others or to judge what others have to say”
(1986:70). Resolving controversy in this manner worked well in support group meetings
for two reasons. First, it capitalized on “agreeable but honest talk” by encouraging
members to be deferential to each other when controversy occurred. Second, it fit the
varied spectrum of lupus experience. Since lupus was understood to be different in each
woman, it was natural for differences in experience to arise. When controversy occurred,
if “agreeable but honest talk” could not resolve the conflict, an explanation based on
differences in disease severity was deployed.
Subjective knowing in group context depended on listening to others. Knowledge
of the self increased based on the iterative exchange of information. This exchange
depended on the ambience of the group and whether shared interest in service of self
discovery was prioritized. Listening was not a solitary exercise. It demanded an “other.”
Although subjectivists understood this dynamic, they appreciated the knowledge gained
about themselves more than “the mutual exchange of experience” (Belenky et al.
1986:85). Comparisons of illness experience prompted feelings of gratitude in some
women. Learning that they were not as sick as others, these women differentiated
personal experience from the experience of others. By means of social comparison, the
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women were better able to cope with their own symptoms and disabilities. In this way,
understanding of illness experience was enriched in group context. The women benefited
from listening to each other in a mutual exchange of experience. Belenky and colleagues
point out: “To some extent listening to others is self-serving. It is a way of learning about
the self without revealing the self; however, good listeners draw others to them.
Watching, listening subjectivists attract other persons’ trust, in part because they listen
and in part because they seem nonjudgmental” (1986:85). Prioritizing connectedness to
others through the mutual exchange of experience distinguishes subjective knowledge
from procedural knowledge.
Procedural Knowledge
Procedural knowledge is based on reasoned reflection. The previous sections
described how some participants relied on a combination of subjective and received
knowledge to assign meaning to experience. The women used feeling and intuition
combined with expert biomedical opinion to find answers. The extent to which lived
experience or biomedical knowledge was given precedence varied by woman. When
confronted with opinions of outside authorities which differed from their own, the
women in Belenky and colleagues’ study began to favor reasoned reflection over blanket
acceptance of expert knowledge. “The stories many women told began when authorities
attempted to inflict their opinions in areas in which the women believed they had a right
to their own opinions. The conflict was between the absolutist dictates of the authorities
and the women’s own subjectivism” (Belenky et al. 1986:88).
During diagnosis delay, many women experienced a similar conflict which played
out according to differences in disease severity. Women with pathophysiological
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evidence of disease (easily confirmed through laboratory testing) were less likely to
doubt the expert opinion of their doctors. These women were usually diagnosed rapidly
and as a result encountered little resistance to their subjective descriptions of illness
experience. Women whose subjective complaints were not supported by positive test
results, experienced longer diagnosis delays. As diagnostic uncertainty continued, their
symptoms were often characterized as psychosomatic or the women themselves were
labeled “hypochondriacs” or “malingerers.” Support group participants fell across the
spectrum of diagnostic delay. The women who experienced longer delays were more
skeptical of biomedical authority. This skepticism was based on two realizations: 1)
physicians believe only what they can prove through objective means (lab testing); and 2)
in the absence of objective proof (negative test results), physicians attribute physiological
symptoms to psychological cause. Differences of opinion over biomedical authority
usually occurred between women who viewed physicians as absolute experts on their
bodies and women who questioned biomedical authority. Women in the former group
had little reason to doubt since uncertainty about their diagnosis was low. Women in the
latter group were more skeptical due to high diagnostic uncertainty and concomitant
physician disregard for their subjective experience.
Reba described what she called doctor “patronizing” during her diagnostic
odyssey. At a meeting she expressed concerns about the way she was treated and found
other women had experienced the same thing. Before we closed the interview, I asked her
if there was anything else she wanted to tell me:
The only thing that I wanted to share… was how doctors patronize women... put a star at that
(laugh). For years, even before 1992 or ’93 when I thought I had rheumatoid arthritis, I had
symptoms of pains in my joints and in my muscles years before. The doctor just kind of pushed
them off. I was told to see a psychologist… I’m sure you’ve heard this from other women. I’ve
had a hard journey when it came to doctors not believing that I knew there was something wrong.
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But I didn’t know what it was. That’s another thing I found out from the women in the support
group. Most of them go through the same thing which is patronizing. I’m sure that’s not just with
lupus patients. I think that’s across the board.
Reba’s observations were based on lived experience. Her understanding that biomedical
practice was flawed (due to the patronizing attitudes of physicians) echoed the sentiment
of other women. When subjective experience was at odds with biomedical opinion, some
women began to doubt the veracity of subjective experience (see Chapter 3). For others,
the longer subjective experience was disregarded or characterized as psychosomatic the
greater their skepticism. Instead of viewing physicians as the absolute authority on
biomedical knowledge, they took matters into their own hands and initiated independent
research. This information gathering often placed them at odds with their doctors during
the clinical encounter. But it also confirmed their understanding that physicians were not
the absolute authority on their bodies.
Once such a realization took hold, subjective and received knowledge were no
longer sufficient. A more complicated understanding of illness experience was needed.
“The world that procedural knowledge reveals is more complex than the world revealed
through received or subjective knowledge” (1986:97). These women were no longer
satisfied with simple answers. Their illness experience was more than what subjective
knowledge indicated or what biomedical authority was willing to recognize. The
complexity of their illness experience required a fundamental change in world view. It
demanded change in the acquisition of knowledge focusing on the procedure generating
such knowledge. It demanded a critical eye with regard to not only subjective experience
but also expert opinion. Retaining trust in authority under these circumstances was
difficult. However, the women understood that despite their new found skepticism, they
were dependent on biomedical practitioners to legitimize their suffering. Solving the
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mystery of their illness was no longer a simple matter of receiving knowledge from an
expert source, it was now a contested process complicated by distal sources of
knowledge.
Prior to diagnosis, procedural knowers focused their attention on research and
information gathering often diagnosing themselves before their physicians (see Chapter
3). After diagnosis, procedural knowers continued to do research by turning to support
groups for information. They refocused their problem solving efforts on post-diagnostic
dilemmas like differentiating lupus flares from other illness experiences. Belenky and
colleagues observe that “[w]omen who put their trust in procedural knowledge believe
that communication can occur, but that it requires talk” (1986:97). Communication for
procedural knowers was much easier during support groups than during the clinical
encounter. Sharing personal ideas with a physician about illness etiology caused some
women embarrassment and humiliation. In the support group context, these fears could
be set aside in favor of an open exchange of ideas. Procedural knowers were the product
of lived experience. They were the worldly-wise who decided to take charge not only to
make sense of their illness experience but also to be able to bring it under control.
“Procedural knowers are practical, pragmatic problem solvers. Far from will-o’-the
wisps, their feet are planted firmly on the ground. They are trying, with more or less
success, to take control of their lives in a planned, deliberate fashion” (1986:99).
Constructed Knowledge
Constructed knowledge comes from a place where reason, intuition, and the
expertise of others is integrated (Belenky et al. 1986: 133). Women who occupied this
stage of epistemological knowledge recognized that “even the most ordinary human
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being is engaged in the construction of knowledge” (Belenky et al. 1986:133). Whereas
procedural knowers questioned expert opinion based on previous negative experiences,
constructed knowers took this realization to the next level. Instead of criticizing
biomedical knowledge, constructivist women acknowledged its shortcomings while
simultaneously increasing respect for lived experience. During meetings this level of
understanding was evident when women talked about the problems they encountered and
then instead of railing against the process, they encouraged each other to discontinue and
seek out care from a new physician or get a second opinion. The default position was to
accept lived experience as implicitly valid while acknowledging that physicians may
disregard this expertise. Instead of venting about the inherent problems with the system,
the women taught each other how to navigate it. From this vantage point biomedicine
was no longer viewed as a black and white enterprise of diagnosis and cure. Old notions
of curative miracles gave way to a more complicated understanding of chronic illness.
The certainty previously ascribed to physician as diagnostician and curer was replaced by
an understanding of biomedicine as inherently uncertain.
As a result of this understanding, constructivist women evaluated and reevaluated biomedical assumptions about illness experience but no longer expected to
resolve uncertainty. “Whereas at other positions ambiguity can be deeply troubling,
constructivists… are not troubled by ambiguity and are enticed by complexity” (Belenky
et al. 1986:139). Due to past experiences they came to understand that biomedical
ambiguity would continue. Since constructivist women understood the complexity of the
chronic illness experience and the problems it created for biomedical practitioners, they
sought out physicians with an equally complicated understanding of disease and illness
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experience. They also sought out physicians who were open to information exchange and
respectful of their needs not only to understand but also to be part of treatment strategy
decision making. Like the women in Belenky and colleagues’ study, the “attention and
respect that they might once have awarded to the expert is transformed. They appreciate
expertise but back away from designating anyone an ‘expert” without qualifying
themselves. An evaluation of experts is not only possible but is an important
responsibility that they assume. For most constructivists, true experts must reveal an
appreciation for complexity and a sense of humility about their knowledge” (1986:139).
Constructivist women found physicians who combined listening and respect for their
ideas irresistible. It was these physicians, that the women openly recommended to each
other.
Once the women understood that they were chronically ill and that the extent to
which their doctors were able to help them was limited (no cure possible), tolerance for
uncertainty increased. When this happened their world view changed. Their lived
experience of illness was not simple and neat; it did not meet the criteria of an acute
model of disease causation and cure; it was complicated and messy. They came to
understand that “simple questions are as rare as simple answers” (Belenky et al. 1986:
139). They understood the requirements of living with a chronic illness and they
demanded care that met their needs. “We observed a passion for knowing the self in the
subjectivists and an excitement over the power of reason among the procedural knowers,
but we found that the opening of the mind and the heart to embrace the world was
characteristic only of the women at the position of constructed knowledge” (Belenky et
al. 1986:141 emphasis in original).
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A critically important aspect of these epistemological positions was the way each
generated understanding. Belenky and colleagues (1986) suggest there are two ways:
separate and connected knowing. The next section will briefly discuss these ways of
knowing and their applicability to the support group process.
Separate vs. Connected Knowing
Belenky and colleagues note that Gilligan (1982) and Lyons (1983) “use the terms
separate and connected to describe two different conceptions or experiences of the self,
as essentially autonomous (separate from others) or as essentially in relationship
(connected to others). The separate self experiences relationship in terms of ‘reciprocity,’
considering others as it wishes to be considered. The connected self experiences
relationships as ‘responses to others in their terms’” (1986:102; emphasis in original).
Belenky and colleagues propose two epistemological orientations: “a separate
epistemology, based upon impersonal procedures for establishing truth, and a connected
epistemology, in which truth emerges through care” (1986:102). The pursuit of truth in
the support group context is based on the latter epistemology which supports connected
knowing through collective experience (i.e. caring through empathy).
Separate knowing embodies three types of behavior: doubting, listening to reason,
and self-extrication. Separate knowers use critical thinking and engage in these behaviors
in their journey to discover truth. Separate knowing is the opposite of subjectivism and
prioritizes “weeding out the self” in pursuit of objective truths (Belenky et al. 1986:104).
It is adversarial, encouraging a doubtful stance toward knowledge until tested and proven
acceptable. It prizes reason over all other means of discourse and regards with suspicion
subjective experience. Separate knowing is a lot like biomedical knowing. Support group
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participants did not openly demonstrate separate knowing behaviors. This was probably
due to the self-selected nature of participation. Given general knowledge about the
priority placed on group process, separate knowers either did not choose to attend
meetings in the first place or when they did, left soon after. Some women may have
chosen to suppress such behavior. However, given the primacy placed on subjectivism
during the support group process, they were probably too uncomfortable to continue their
participation.
Darcy stopped going to support groups after one meeting. She found the group
process too permissive with regard to the sharing of subjective experience.
K: What was missing in the support group experience?
I: …I felt that the lupus support groups were more of a place where people came to complain.
Complain about their doctors. Be suspicious of their doctors. Try and find alternative ways of
curing the disease. One of the speakers that day was a man who said he cured himself of lupus.
There’s some therapy that he wanted us all to buy. Of course just having gone through nursing
school, I was very skeptical. I was very entrenched in the medical model. I just thought these are a
bunch of kooks. (laugh)
Although the speaker was not going to benefit financially from his recommendation, he
nevertheless challenged Darcy’s notions of acceptable treatment strategies. By using
personal experience to support the use of alternative medicine, the speaker’s priorities
were at odds with the priorities of separate knowing. Long-time support group
participants did not object to the sharing of this type of information because of the
diversity of participants’ interests and needs. For Darcy, who readily admitted she was
“entrenched in the medical model” the only characterization possible for a group tolerant
of this type of information exchange was mental illness.
The majority of the women at support group meetings were connected knowers of
every epistemological position. Connected knowing is based on the subjectivists belief
that “the most trustworthy knowledge comes from personal experience” and the
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proceduralists skepticism about the “pronouncements of authorities” (Belenky et al.
1986:112). Since appreciating subjective experience was fundamental to connected
knowing, support group participants deployed various strategies for drawing out personal
stories. These included personal (such as encouraging words, questions about
experiences, and asking for advice) and structural (such as round-robin updates)
strategies. However, the most effective means of connecting with others was through
empathy. Had it not been for the women’s capacity for empathy, the depth of support
offered to Amelia after her anxiety attack would not have been possible. Belenky and
colleagues observe: “Connected knowers develop procedures for gaining access to other
people’s knowledge. At the heart of these procedures is the capacity for empathy. Since
knowledge comes from experience, the only way they can hope to understand another
persons’ ideas is to try to share the experience that has led the person to form the idea”
(1986:113).
Although the support offered to Amelia was immediate and tangible, the capacity
for empathy was also operational under more abstract circumstances. Participants
routinely shared experiences that took place outside meetings. By describing the
circumstances of the event, the women were drawn into others’ subjective experience and
granted insight into the source of the personal ideas. Connected knowers understood that
the process of empathetic engagement gave them only partial access to actual lived
experience. However, due to commonality of illness experience even partial access was
more than enough to precipitate understanding.
Although connected knowing hinged on feelings of empathy, the women did not
check rational thought at the door. Doubting was permitted especially in the pursuit of
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truth. However, unlike the incredulous stance of separate knowers, doubting among
connected knowers was tempered and deployed in the collective search for
understanding. The purpose of doubting was not to question subjective experience but to
clarify, enhance and otherwise facilitate understanding. Belenky and colleagues suggest
that this type of an approach is based on a type of caring which may be peculiar to the
character of interactions between women: “While women frequently do experience
doubting as a game, believing feels real to them, perhaps because it is founded upon
genuine care and because it promises to reveal the kind of truth they value – truth that is
personal and particular and grounded in first hand experience” (1986:113). The doubting
game for separate knowers is a demonstration of authority. Authority for separate
knowers rests on the power associated with ascribed status (i.e. expert knowledge).
Authority for connected knowers rests on the “commonality of experience” (Belenky et
al. 1986:118). Support group participation was a collaborative exploration of subjective
experience which brought the group closer together over time. Connected knowing is
suited to group contexts in which members “meet over a long period of time and get to
know each other well” (Belenky et al. 1986:119).
Belenky and colleagues (1986) observe that both separate and connected knowers
need to meet in groups. Separate knowers “bring their propositions that they have
developed as fully as possible and that they hope to sell in the marketplace of ideas”
(Belenky et al. 1986:118). Separate knowers exchange ideas but do not need to know
each other. Connected knowers “utter half-baked half-truths and ask others to nurture
them... [s]ince no one would entrust one’s fragile infant to a stranger, members of the
group must learn to know and trust each other” (Belenky et al. 1986:118). Support groups
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with high levels of trust between participants were sustained by a core group of women
who knew each other well for long periods of time. These women were friends and
maintained contact outside the meetings through phone conversations, rendezvous or
other means of staying in touch.
The practice of “agreeable but honest talk” created a safe environment not only
for sharing subjective experience but also nascent ideas which some may have considered
“half-baked.” Although the women’s ideas differed, they were open to listening and
understanding each other. Occasionally differences of opinion occurred. When this
happened, the group worked to defuse them as quickly as possible. High priority was
placed on building relationships among members. By setting aside personal opinions to
really “listen” and attend to another’s point of view a feeling of connectedness was
created between participants. The purpose of connected knowing is not justification (to
see the proof of an argument) but connection (Belenky et al. 1986). At support group
meetings, connected knowing promoted understanding which involved intimacy between
self and object. In this case, the object was the articulation of another’s experience and
their interpretation of it. Arguing jeopardized the feeling of connectedness and threatened
the dissolution of relationships. New members learned not to be adversarial through the
example set by the more experienced. If disagreements occurred, the group leader and
other members would actively work to re-establish an atmosphere of understanding. In
this way, the counter-productive behaviors of separate knowing were systematically
excised from the group process.
The women’s trust of subjective experience led them to “advise their friends to
do whatever feels right to them” (Belenky et al. 1986:120). The priority placed on
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intuitive decision making suited the way participants asked each other for advice. Usually
due to the number of women in attendance a wide variety of potential options were
presented. It was also left to the discretion of the requestor of advice to decide which
avenue to pursue. When advice was offered it was done from the perspective of
subjective knowledge. For this reason, it was taken at face value and either noted or
discarded based on the needs of each woman. Participants were free to express
themselves in whatever way they saw fit. They did not judge the veracity of advice.
Instead, if it seemed really off or contradicted what they knew to be true, questions were
asked and additional discussion took place to clarify it. In this manner, the women took
responsibility as connected knowers to “understand how their friends feel and to help
them think the problem through” (Belenky et al. 1986:121). The women took their
participation seriously and as a result they took the perspectives of other women to heart.
Through their actions they demonstrated over and over again a sincere desire to help each
other.
What the women did during the group process required effort and active
participation. They extended themselves to each other to facilitate understanding and by
doing so they extended their own epistemological position. Although it may have been
challenging for some to see the perspectives of others, each attempt to do so broadened
not only understanding of other but also understanding of self. “It is important to
distinguish between the effortless intuition of subjectivism (in which one identifies with
positions that feel right) and the deliberate, imaginative extension of one’s understanding
into positions that initially feel wrong or remote. Connected knowing involves feeling,
because it is rooted in relationship; but it also involves thought” (Belenky et al.
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1986:121). Ultimately support group participation facilitated shifts in epistemological
positions which may never have occurred without the benefit of connected knowing.
“Each individual must stretch her own vision in order to share another’s vision. Through
mutual stretching and sharing the group achieves a vision richer than any individual
could achieve alone” (Belenky et al. 1986:119).
The Creation of Friendship and Shared Community through Connected Knowing
The previous discussion focused on what Belenky and colleagues (1986) call
“connected knowing.” This section examines the nature of friendship and argues that in
the support group context, connected knowing took on the form of friendship which
created and perpetuated a shared sense of community essential to support group
functioning. A great deal of research has been conducted on friendship in the
psychological and sociological literature. It is also addressed in the anthropological
literature to a lesser extent. Although support groups have been the topic of research
across disciplines, the communal or social aspect of the support group has rarely been
characterized as “friendship.”11 This section argues that the fundamental social cohesion
of the support group depends on the dynamic of friendship, and in this case, female
friendship. The practice of “agreeable but honest talk,” the sharing of life experience,
ideas and personal truths are features of female friendship.
What occurred during the support group meetings was a large scale version of
what girlfriends do for each other. Personal recollections of subjective experience were
characterized in keeping with epistemological positions. From week to week group
dialogue transformed subjective understanding and shifted participant’s epistemological
11
Tutt (1989) discusses the implications of friendship in a women’s poker group.
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positions. At the heart of this process was a distinct learning process based on speaking
and listening. This process produced collective knowledge based on the experience of
self, commonly shared. The tendency for women to equate “voice” with ways of knowing
through personal experience is of particular importance (Belenky et al. 1986) to the
production of women’s knowledge. Belenky and colleagues observe “[v]isual metaphors,
such as ‘the minds’eye,’ suggests camera passively recording a static reality and promote
the illusion that disengagement and objectification are central to the construction of
knowledge. Visual metaphors encourage standing at a distance to get a proper view,
removing – it is believed – subject and object from a sphere of possible intercourse.
Unlike the eye, the ear operates by registering nearby subtle change. Unlike the eye, the
ear requires closeness between subject and object. Unlike seeing, speaking and listening
suggest dialogue and interaction” (1986:18). The dialogue at support group meetings
facilitated sharing of personal experience. As this information was shared, the women
forged relationships with each other based on friendship.
Defining Friendship: Kin vs. non-kin
Popular notions of friendship usually exclude kin relationships. In the literature
however, both kin and non-kin are considered as sources of friendship. Carol Stack’s
(1974) work on African Americans living in an urban setting focused attention on the
complex exchange network of supportive friends and relatives. Friends whose exchange
behavior met expectations were considered as kin. The role of fictive kin in the structure
of African-American social relationships is well documented. The tendency to attribute
familial roles to close friends however, is not limited to any particular group. Considering
a close female friend like a “sister” or “daughter” still holds great emotional and social
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importance for the women in that relationship and to whom the relationship is described
as such. The social network consists of friends who, to a greater or lesser degree,
participate in an exchange of emotional, instrumental and tangible support. During the
course of life, many choices are made about friendship formation (both inside and outside
the family). These choices rely in large part on individual preferences and social context
but may also be precipitated by life events. Some attention has been given to the
importance of disruptive events such as separation, divorce, or death of a partner to social
network changes (Pahl and Pevalin 2005). However, little attention has been given to
studying the disruptive impact of chronic illness on friendship formation. There is ample
evidence to suggest that individuals who are newly separated or divorced turn to nonfamily members for support and consider them as their closest friends (Pahl and Pevalin
2005). Although many have suggested that social networks change as a result of chronic
illness events (Bury 1982; Charmaz 1997), few studies have examined the formation of
friendship in the wake of such events.
Friendship, choice and identity formation
Some have argued that due to the demands of modernity, identity has become a
more fluid entity (Allan and Adams 1998). Since friendship is an essential social
component of the formation of identity, it has become more important as post modern
society has become more fragmented and uncertain (Allan and Adams 1998). Choice in
relation to friendship formation looms large in contemporary analyses. It is considered
the base upon which the social dynamic of friendship rests. As a result, friendship can be
consciously shaped over a lifetime depending on the needs and priorities of the
individual. The intersection of shifts in friendship and identity formation may be of
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particular importance to women. As O’Connor observes, “[f]riendship offers a way of
inventing and re-inventing the self in an authentic way throughout one’s life. As such it is
particularly important to women whose idea of themselves is typically rooted in social
relationships” (1999:118).
Connected knowing in group context is based on an understanding of self
grounded in connectedness to others. As a result, the women took responsibility for what
they said and did. As they talked about personal experiences they were ever vigilant of
the impact of their words on others. High priority was placed on maintaining a cohesive
group process. Participation required responsibility. Gilligan (1982) and Lyons (1983)
work on gender differences in identity development indicates that women tend to have a
“responsibility oriented” moral perspective. This orientation may be due to the tendency
for women to “define themselves in terms of their relationships and connections to
others” (Belenky et al. 1986:8). As Belenky and colleagues observe, “[r]esponsibility
orientation is more central to those whose conceptions of self are rooted in a sense of
connection and relatedness to others” (1986:8). This orientation is key to the success of
group discussion because it encourages an outward orientation – one grounded in self but
connected to others.
Friendship and Self-disclosure
Self-disclosure is considered an act of intimacy and a maintenance strategy in
close relationships. It is the “process of telling another about one’s intimate feelings,
attitudes, and experiences” (Sprecher and Hendrick 2004:858). It is usually characterized
as the complementary flip-side of privacy and confidentiality in close relationships. Each
complements and promotes the other in mutually reinforcing ways (Baxter and
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Montgomery 1996). Studies of self-disclosure by gender show few differences in
heterosexual romantic relationships. However, there is evidence to suggest that women
disclose more to their same-sex friends than men do (Derlega et al. 1993). In women
links have been found between the ability to elicit disclosure in another and satisfaction
with long-term intimate relationships (Hendrick et al. 1988). Self-disclosure contributes
to a sense of intimacy in close relationships and contributes to their long-term success
(Reis and Shaver 1988; Prager 2000). It has also been described as the basis for the
“shared meaning system” of friendship (Duck 1994).
As previously mentioned, Denise refused to talk about her illness experience with
just anyone. As she got sicker, she grew increasingly tired of having to explain herself to
others. In spite of this, she continued to talk about her experiences at support group
meetings. She exempted support group participants from her non-disclosure strategy.
Jackie described the closeness she felt to the other women at support group meetings as
“just like a family.” Rhonda and Reba felt socially isolated and friendless, by attending
support group meetings they were not only able to mitigate these feelings, they were able
to connect with women like themselves and expand their understanding of the meaning of
personal and others experiences.
As women who attended support groups transitioned into subjectivism, they were
no longer willing to rely on “higher status, powerful authorities for knowledge and truth.”
They turned instead to “people closer to their own experience – female peers.” For these
women truth was “grounded in the first hand experience of others most like themselves”
(Belenky et al. 1986:60). Finding refuge among peers in the support group context
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facilitated the creation of a group process based on the shared meaning of mutual
friendship.
Conclusion
As support group participants, subjectivists, proceduralists and constructivists
received the informational, emotional and instrumental support they needed in order to
better understand and live with chronic illness. Armed with healthy skepticism about the
absolute authority of biomedicine and its practitioners, the women shared subjective
truths based on lived experience. No longer satisfied with physician’s didactic talk or
separate knowing behaviors, these women created safe environments for “agreeable but
honest talk” relying on principles of connected knowing. The women engaged with each
other in deeply empathetic ways as a means to share experience. In the process, they
opened themselves up to new ways of knowing. Connected knowing operationalized
through the formation of friendship facilitated shifts in epistemological positions which
would not have occurred outside the group context.
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Chapter 6: Ill-Fated Alchemy: Biomedical Power, Treatment Practices
and their Implications for Women with Lupus
“Take pneumonia. It has been treated by bleeding, and got well. It has been treated by brandy and got well.
It has been left to itself and got well. And the bleeders, the brandy givers, and the doers of nothing at all,
respectively, have had a vast deal to say for themselves and against their rivals. And which of them are to
be our guides and master in the treatment of pneumonia? None of them for a single day, much less for
always.”
—Peter Mere Latham (1789-1875), Physician and Educator, as quoted in Bean 1962
“The dose makes the poison.”
—Paracelsus (1493-1541), “Father of Toxicology”
“True science teaches us to doubt and, in ignorance, to refrain.”
—Claude Bernard (1813-1878), “Father of Physiology”
Introduction
I met Marian in 2000 at a lupus support group meeting at the Gwinnett Medical
Center Hospital. She was 2 years older than me, a career woman now on disability from
work. Her countenance was serene, focused intently on what the other women had to say
about their experiences. She was calm and always ready with an intelligent comment or a
well punctuated laugh to ease tension. She was apologetic about her weight, embarrassed
over the 65 pounds she had gained during the 2 years she had been on prednisone. Her
story, like the other women in my study, began long before her diagnosis – as she
struggled to understand her symptoms and find legitimation for her suffering from
doctors, family and friends. Her life with lupus was a struggle to regain health. It was not
until 2 weeks before her death, sitting at her bedside, that I realized her struggle was
nearing its end. It seems strange now that I did not realize it earlier but I was swept into
the biomedical circumstances that pervaded her life. Drawn in so closely, I was
blindsided by it – I was so invested in her life that I could not fathom her death. She had
been struggling with lupus for four years. Her suffering was a direct result of lupus
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complications, as well as the secondary effects of the treatment she received: achy joints
and muscle pain, unexplained fevers, difficulty breathing, cognitive impairment and
memory loss; diabetes, cataracts and bone marrow decay from prednisone; chronic low
blood counts and bone marrow failure due to chemotherapy with chlorambucil; graft
versus hosts disease from a failed bone marrow transplant from her brother; and viral and
fungal infections in her blood.
Marian’s kidneys were failing and a decision needed to be made about dialysis.
Marian waited until the hospital room was empty, “Well, what do you think, girls?” I sat
across the bed from Penny, a friend of Marian’s and a fellow lupus patient. At that
moment I knew that someone had to say something. I looked into Marian’s eyes, “I do
not really know what to say – all I can tell you is that your body is tired but your spirit is
strong, focus on that.” Penny said a few words – but I was lost in thought. What I said
was not what Marian expected to hear. The nephrologist was waiting for a decision about
dialysis but I felt compelled to talk about something other than another medical decision,
another means to intervene, another way to prolong life. We needed to talk about letting
go. We needed to talk about death.
When we are sick and go to see a doctor, fundamentally we are seeking a means
to better ourselves, better our sicknesses, prolong our lives… We forget that illness, pain,
suffering and even death are a part of life. It is not until we are confronted with death that
it becomes more than a distant potentiality or remote possibility. It is only when we know
through lived experience what is about to happen that the quest for life, the drive to get
better, the search for a cure becomes what occupies our thoughts, our hopes, our entire
beings.
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During my fieldwork four women died. Death was not something I expected to
encounter; lupus is no longer necessarily a deadly disease. Treatment usually staves off
death, but in Marian’s case, it hastened it. The loss was personal. Still appalled by its
needlessness, I wish I could have done something more to prevent it. But by the time I
interviewed her, the damage was already done. She had been exposed to doses of
chemotherapy drugs that drove her bone marrow into failure. There was really nothing
anyone could do, not even her doctors.
This chapter is about the struggle women with lupus go through given the
philosophical foundation of biomedicine and the treatment modalities currently available.
Although death is not often a result of treatment; death and treatment are intimately
linked. Marian’s story provides a glimpse of an unfortunate end of the treatment
spectrum. The outcome is uncommon but the process that set it in motion and the forces
that shaped it influence the life of every woman with lupus. Marian’s story illustrates
how biomedical and sociocultural forces can combine to create ill-fated alchemy. It is an
unusual story of one woman and one doctor; however it highlights critical issues that
arise in the treatment experience patients and their physicians confront in much more
common circumstances.
Brief Background on Treatment Modalities
The prospect of dying as a result of having lupus is an ever present fear for
patients (Schur 1996). This apprehension was well founded until the discovery of
corticosteroids in the 1950’s. Corticosteroid treatment not only prolonged life, it
improved the quality of life by decreasing problematic symptoms. The vast majority of
lupus cases can now be managed effectively with a combination of corticosteroids and
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non-steroidal anti-inflammatory drugs. More difficult and advanced cases are treated
more aggressively with immune suppressants and chemotherapy. Treatment
complications, or “side effects,” are a serious concern though - even with first line
treatment options. Non steroidal anti-inflammatory drugs can cause liver and kidney
damage. Steroidal drugs can cause weight gain, mood swings, psychiatric malfunctions
(psychosis), vision loss (cataracts), diabetes, and bone marrow decay (necessitating joint
replacement). Immune suppressants may cause nausea, vomiting and hair loss, increase
the risk of infection, can induce temporary or permanent infertility, and in rare cases even
death. Because most treatment options for lupus are long term, the complications of
treatment often threaten quality of life as much as the disease itself.
Apprehensions about prognosis are bound up with concerns about disease
progression and treatment side effects. This creates a dilemma for patients and providers
alike. The progression of the disease must be halted so that symptoms can be brought
under control, but the interventions that bring this about create additional problems. A
great deal has been written in both popular and scientific publications about the need to
find a balance between symptom control and treatment side effects. It is generally agreed
that the lowest effective dosage of any treatment is optimal. Once symptoms are brought
under control a maintenance dose is typically determined and continued in order to keep
symptoms and disease progression in check. Given the chronic nature of lupus, this
approach is logical and reasonable. Yet this approach is often complicated because of
symptom flares, the potential development of organ involvement, and the fact that the
disease will inevitably progress despite efforts to keep it in check.
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Although most patients are initially relieved to receive a diagnosis and hear that
lupus is “treatable,” they soon come to realize that not all “treatments” are created equal.
Most treatments have to be endured for so long for the length of time that they have to be
endured create more problems than they solve. As in the past, the major cause of death
associated with lupus is still infection (Schur 1996). Historically, infection was linked to
septic discoid lesions due to unsanitary treatment and living conditions whereas today
they are due to either complications of active disease and/or the result of its treatment. In
1955, the average five year survival rate was less than 40%; forty years later the ten year
survival rate was about 90 percent (Gladman 1994). This improvement is probably due in
part to earlier diagnosis of mild cases which benefit from the treatments that are currently
available (Schur 1996). Although death is no longer an imminent threat for most patients,
increasing survival rates do not take into account quality of life issues. Morbidity due to
advancing disease processes and treatment side effects is a persistent problem.
Marian’s Story
In August of 1998 Marian experienced what she would later learn was her first
lupus flare. At the time she was working as a trade show manager for an industrial die
works firm. It was her responsibility to organize, set up and manage the booth at the
international show scheduled to take place that year in Atlanta. Marian was a valued
employee known for her dedication to the job and her “let’s get it done” attitude. Just
days before the show, she broke out in a severe rash on her forearms which spread to her
chest and breasts. The primary care physician at her HMO gave her a 10-day pack of
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prednisone1 to bring it under control. Since she thought the rash “was not that bad” and
so many details needed attention, Marian worked the entire show from set-up to clean-up.
Afterwards she began to feel like she was getting the flu; she had achy joints with muscle
pain, fatigue, no appetite, dizziness, fever, and night sweats. Over the next three weeks
Marian could not work or drive and spent most of her time in bed. Her symptoms
worsened to include tremors, visual disturbances, edema and numbness in her hands and
feet, a face rash and hair loss. During that time she began to experience anxiety which
developed into full scale panic attacks. Her primary care physician prescribed antianxiety and anti-depressant medications to help her cope with the emotional impact of the
undiagnosed symptoms.
In October 1998 she was admitted to Gwinnett Medical Center for testing. The
results showed a high sedimentation rate, indicative of a high level of inflammation,2 and
a positive antinuclear antibody test,3 which her doctors said was indicative of an
autoimmune disorder. They confirmed her 1990 diagnosis of hypothyroidism and she
tested negative for HIV, hepatitis, and Lymes disease. An MRI showed no “organic
central or peripheral nervous system disorders.”
Between September 1998 and January 1999, Marian saw seven physicians in the
fields of primary care, endocrinology, infectious disease, neurology, and rheumatology,
but still did not have a diagnosis. Fed-up with the diagnosis delays, she started to do her
own research on autoimmune disease on the internet. Marian also talked with her
1
Pre-packaged steroidal medication (in this case prednisone). The dosage starts out high and tapers over a
set number of days.
2
SED rate or sedimentation rate is used to detect and monitor inflammation in the body; the higher the rate
the greater the amount of inflammation. High rates usually indicate increased immune activity which is
indicative of infection or in the case of lupus patients, disease activity. The test measures the precipitation
of red blood cells in a column of blood. The normal SED rate for women is 0-20 millimeters per hour.
3
ANA or anti-nuclear antibody test determines if autoantibodies (a specific protein that reacts with the
nuclei of cells) are present in the blood. About 96% of lupus patients have positive ANA test results.
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employer about her disappointment over the HMO care she was receiving. The personnel
manager wrote a letter to the insurance company and she was allowed to switch to a PPO
plan mid-stream (not during open season). Based on a recommendation from a friend
with Lou Gehrig’s disease (ALS), she saw a neurologist at the Shepherd Spinal Center in
Atlanta. The neurologist suspected her symptoms were related to a “connective tissue
disease” and referred her to a rheumatologist. He described the rheumatologist as
“aggressive” but able to help. As a result of her switch to the PPO plan, Marian was able
to see that rheumatologist. I will call him Dr. X. Before the appointment Marian wrote a
letter to Dr. X describing everything she had been through including a list of physician
names, specialties, tests, test results, preliminary and disproved diagnoses, and past and
current medications. In her first visit with him, Dr. X diagnosed Marian with systemic
lupus erythematosus, cutaneous vasculitis, Sjögren’s syndrome and Raynaud’s syndrome.
Marian describes her reaction to the diagnosis as follows:
Well, he had spent like about an hour and a half going over everything and talking to me. It was
funny because when he first walked in and introduced himself to me, I had the Lupus Handbook
for Women. Have you ever read that? [K: Yeah.] It’s great. It has those little stories in it that
people wrote? Anyway, he looked at me and goes, “What do you think of that book?” I said, “It’s
pretty good.” And he said, “Is that you?” I said, “Yeah.” (giggle) He spent like an hour and a half
with me and he got up to leave the room twice. Once one of the girls had to ask him a question.
The other time he got up and got some pamphlets and a box of Kleenex… He just turned to me
and said, “I don’t understand why you’ve been passed around so much. It’s very, very typical. I
see it every day. You have lupus. You have a pretty good case of it and you’ve had it for a long
time.” I just burst into tears. He goes, “Okay, well, what is that? Is that happy? Is that sad? Is that
I’m going to die? Is it I’m worried?” I said, “No. I think it’s happiness because you didn’t tell me I
was crazy.” That’s exactly what I said to him. I said, “You know everybody else has been telling
me all this is in my head. You didn’t tell me I was crazy.”
Then after that I was scared… I just remember I cried the whole way back to the office. I
shouldn’t have probably been driving. But my friend, he’s got Lou Gehrig’s disease,
unfortunately… he called me on my cell phone. He’s like, “What’s going on?” I was like
“Ooooh,” crying and said, “I’ll tell you when I get back.” Then it was mixed emotions. I was
scared but I was glad that somebody finally told me what was wrong. Now I can get some
treatment. It was pretty devastating but at least I was glad I had a diagnosis.
After the diagnosis, Dr. X put Marian on Plaquenil, an antimalarial medication
used to treat skin inflammation, hair loss, mouth sores, fatigue and joint pain in lupus
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patients. She also took an anti-depressant, an anti-anxiety medication, anti-histamine, non
steroidal anti-inflammatory medications, vitamins, and a medication to increase moisture
in mucous membranes in order to diminish the effects of Sjögren’s syndrome.
He instructed her to leave work for two months so that she could recover. At her
follow-up visit, Marian had a rash on her face and was still experiencing joint and muscle
pain, hair loss, and fatigue. She reported having “less confusion” but described her short
term memory loss as “horrible.” Dr. X noted in Marian’s chart a secondary diagnosis of
neuro-psychiatric-SLE (NP-SLE), often referred to as central nervous system lupus, and
prescribed prednisone4 to suppress immune activity. Marian returned for a follow-up visit
a month later to report that her rash had cleared up and she “felt like a new person.”
Nevertheless, she was still experiencing joint pain in her fingers, elbows, knees, and feet
as well as muscle pain in her forearms and calves. She reported some continued hair loss
and fatigue, and noted that her memory and confusion was much better during the first
two weeks of treatment but that “my memory is still bad” and “I had to concentrate so
much when I was writing out checks a few days ago.” Dr. X ordered a standard blood
work-up and prescribed methotrexate5 treatment in combination with leucovorin6 to
further suppress immune activity and lessen the persisting symptoms. This treatment
4
Over the next 2 and ½ years Marian’s prednisone dose was adjusted (raised and lowered) depending on
the severity of her symptoms up to 180 mgs per day. Plus IV steroids (Solumedrol) were administered
during hospital stays up to 1500 mgs per day. Corticosteroids (or steroids) are anti-inflammatory hormones
produced naturally by the adrenal cortex. Pharmaceutical medication contains synthetically manufactured
corticosteroids. Steroids (cortisone) have been used to treat lupus patients since 1950. See Wallace
(1995:202) for discussion on why steroids are “the most used and abused therapeutic interventions” for
lupus.
5
Methotrexate is an antimetabolite drug which means it blocks the metabolism of cells. As a result, it has
been found to be helpful in treating diseases associated with rapid cell growth like cancer. It is one of a
number of drugs commonly referred to as “chemotherapy” by cancer patients. It is also used to treat autoimmune diseases like rheumatoid arthritis (licensed) and lupus (off-label). Although the exact reasons why
it works is unknown, it is thought to alter aspects of immune function which causes auto-immune activity.
6
Leucovorin or folinic acid (active form of folic acid) is used as an antidote to protect normal cells from
high doses of the cancer drug methotrexate.
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signaled a significant shift from the use of first-line drugs for symptom management to
chemotherapy to decrease autoimmune activity.
A month later, Marian was admitted to Gwinnett Medical Center hospital with a
high fever. She was diagnosed with a lupus flare, treated with high-dose steroids7 and
discharged a few days later. After she returned home, her fever spiked. She was
readmitted to the hospital, diagnosed with pneumonia and treated with high-dose steroids
for four weeks as an in-patient. After her recovery, Dr. X decided to switch to an
immunosuppressant drug that acts differently, discontinuing methotrexate in favor of
azathioprine,8 Marian took the medication for two weeks and was re-admitted to the
hospital with a fever of 105◦F. She was admitted, treated with high-dose steroids and
released. The Gwinnett Medical Center physicians discontinued azathioprine treatment
while she was in the hospital, and Marian noted that they suspected she had an adverse
reaction to the drug resulting in a “drug fever.” Marian’s flu-like and neuro-psychiatric
symptoms such as memory loss and concentration problems persisted after her release
from the hospital.
At her next appointment, Dr. X asked Marian to come to the office with a family
member to discuss treatment options. Marian was accompanied by her brother, Gary.
During the appointment, Dr. X informed them that he wanted to start chlorambucil
(Leukeran)9 treatment, another type of chemotherapy used in treating certain types of
7
Steroids administered in hospitals are usually given intravenously since the dosages are much higher than
those taken to treat symptom flares on an out-patient basis. Any subsequent reference to “high dose
steroids” administered in a hospital setting refers to high-dose intravenous steroid treatment.
8
Azathioprine (Imuran) is usually prescribed for kidney transplant patients to lower immune response to
lessen the likelihood of rejection. It is also used to treat auto-immune diseases like rheumatoid arthritis
(licensed) and lupus (off-label). Its mechanism of action is unclear but since it suppresses the immune
system, it decreases auto-immune activity and offers patients’ symptom relief.
9
Chlorambucil (Leukeran) is an alkylating agent which prevents cell division. Lymphocytes whose normal
function involves antibody production and other immune activities are very sensitive to the effects of
301
cancer. Marian told him that she was “scared” about taking another drug given her
reaction to the azathioprine. Gary asked about the side effects. Dr. X told him that it
would probably “fry” Marian’s ovaries and could lead to cancer in 20 years. When
Marian and Gary voiced concern about the possibility of cancer, Dr. X replied,
“Wouldn’t you rather have 20 good years than nothing at all?” Marian, with her brother
in agreement, began chemotherapy treatment with chlorambucil on August 25, 1999.
Marian’s treatment with chlorambucil would last for the next year and seven
months. Within 3 months, she experienced premature ovarian failure and menstruated for
the last time. Within 6 months, she was no longer able to work and keep up with the
demands of her illness, so she resigned from her job and went on disability. Over the next
few months, Marian’s neuro-psychiatric symptoms and cognitive decline worsened. Dr.
X reconfirmed his diagnosis of NP-SLE (central nervous system lupus) in May 2000, and
increased her dosage of chlorambucil. He also increased her thyroid medication to treat
her worsening hypothyroidism, and changed her hormone medication to treat her
recurrent hot flashes and low levels of follicle stimulating hormone (FSH).
During her next monthly visit Marian reported “feeling a lot better” and “really
good, almost normal” as well as thinking “a lot clearer.” Her appearance was severely
“cushingoid”10 due to the dosage and length of time she had been taking prednisone. She
had gained 44 lbs, and her blood pressure was slightly elevated (132/56) as was her
temperature (99.1◦). She also reported having bloody stools occasionally which Dr. X
alkylating agents. Thus its use may decrease immune activity and improve symptoms in those affected by
auto-immune disease. Chlorambucil is most often used to treat certain types of leukemia, myeloma, ovarian
cancer, and lymphoma. It is unclear why Dr. X chose to prescribe chlorambucil rather than the standard of
care cytotoxic drug cyclophosphamide (Cytoxan).
10
Facial puffiness and weight gain are typical side effects of long-term prednisone use. The term
“cushingoid” is used to signal physical appearance similar to patients with Cushing’s disease. Cushing’s
disease is a malfunction of the endocrine system involving overproduction of the hormone cortisol. Cortisol
and prednisone are both steroids.
302
considered to be of unknown etiology. Chlorambucil treatment was continued at the
elevated level for the next 3 months, although suspended briefly when she developed a
sinus infection which was treated with antibiotics.11 At her next regular visit, she reported
feeling “good” in spite of increased nausea from the resumed chemotherapy. She had a
slight malar rash across her face, but normal blood pressure and temperature.
On October 18, 2000 chlorambucil treatment was discontinued because Marian’s
platelets fell precipitously12 (see Graph 6.1). In spite of her falling blood counts, Marian
reported feeling “great.” “I was back to typing 95 words per minute,” she reported. Yet
her lupus symptoms continued to increase and her blood tests worsened including the
SED rate that measures inflammation (see Graph 6.2), indicating that she was probably in
a lupus flare. She reported to Dr. X that her memory was “good” but “foggy”; that she
was forgetting words at times and easily confused when asked to do several tasks at one
time; and that she was “mixing up letters and numbers” when typing or writing. She also
reported having “clumsy hands, a common side-effect of long-term steroid use, joint
pain, a malar rash, muscle weakness and fatigue. She had gained 20 more pounds since
her last appointment and was experiencing active hypothryroidism. Dr. X attributed her
flare in symptoms to the temporary suspension of chlorambucil. He also noted that her
low platelet and white cell counts were likely due to the chlorambucil treatment.
As a result of Marian’s worsening neuro-psychiatric symptoms coupled with her
decreasing blood counts, Dr. X asked a hematologist in an oncology practice, Dr. Y, to
consult with him on the case. At Marian’s appointment with Dr. Y, he recommended
increasing her chlorambucil dosage for two months. He had discussed this strategy with
11
Infections are taken seriously during treatment with immunosuppressive agents. Even sinus infections
can lead to serious complications if not properly treated.
12
A normal platelet count is in the range of 140,000 to 400,000/ml; her level was 87,000.
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Dr. X, but was unaware that Marian was hearing about it for the first time, and described
it in a way that “scared” her. In response, Marian wrote the following letter to Dr. X.
Date: October 24, 2000
Dr. X:
I met with Dr. Y yesterday, we had a very nice chat and I gave him all of the paperwork you gave
me, plus some from my PCP. He was very nice.
Either I am confused or I can’t remember what you and I discussed last week, I was feeling pretty
bad that day.
Dr. Y discussed with me yesterday a very aggressive treatment of Chlorambucil (very high
dosage) for the next two months, monitoring my blood counts and possibly giving me transfusions
and platelets if necessary. As he put it “blast” me. I was under the impression that he was going to
monitor my blood with my current dosage. Was it your intention for him to increase my dosage
for the next couple of months to get me into remission? If this is necessary, then I’m OK with it, I
was just a little surprised and I’m a little scared. I couldn’t read your orders (doctor language), but
he said he was going to contact you to discuss everything.
He increased my Nueprogen [Neupogen] to a shot everyday for the next week, then I go back to
him on Monday, for him to check my blood counts again. My counts were low again yesterday,
my WBC was about 2,100. He told me that he’s not afraid of low blood counts, that most of his
patients stay that way because of their treatment, that between what you know about lupus and
what he knows about blood counts, he can help me into remission. I’ll be taking Nueprogen
everyday, plus an additional drug if necessary (can’t remember the name of it). [probably Procrit]
If you get the chance, can you please call me this week sometime so we can discuss my questions,
or I can come in if necessary. I’d really appreciate it. I really don’t want to start any of this
treatment without talking to you about it first. [emphasis in original]
Thank you,
Marian [signed]
Dr. X responded by calling Marian at home that night. She agreed to the “blast”
chemotherapy treatment with increased dosages of Chlorambucil. For the next six months
(November 2000 to April 2001), Marian drove to Piedmont Hospital every week to have
her blood work done. Dr. Y monitored her blood counts (see Graphs 3-6 for white blood
304
cell count, red blood cell count, hemaglobin and hematocrit levels), ordered blood
transfusions, and varied the Neupogen13 and Procrit14 dosages as needed
Midway through this treatment, Marian developed an upper respiratory infection
which required three weeks of antibiotics. She complained about stuttering and not being
able to “find words to say” or “process anything,” having decreased blurred vision and
confusion and an “okay” memory.15 Dr. X lowered her prednisone but then raised it again
in order to manage other symptoms as her fatigue and joint and muscle pain increased. In
the end of March, Marian and I traveled to Washington D.C. to attend Advocacy Day on
Capitol Hill sponsored by the Lupus Foundation of America (LFA). She was so sick, she
could barely walk. I carried her suitcase and carry-on bags; we got a wheel chair so she
could make it through the terminal and to the gate. She met with Congressmen and
Congressional aids, described her experiences, and lobbied hard for changes in medical
coverage and increases in NIH funding for lupus research. When she returned from the
trip she called repeatedly to thank me for all my help and to apologize for being such a
burden.
In early April 2001 Marion’s platelets fell to dangerously low levels16 and Dr. X
instructed her to stop taking the chlorambucil – her dosage had reached the maximum
allowable amount (20 mgs). During her meeting with Dr. Y the next week, he told her
13
Neupogen is used for treating neutropenia (abnormally low number of a specific type of white blood cell)
a common side effect of chemotherapy. Neupogen is a protein that stimulates the production of white blood
cells. Its use during chemotherapy decreases the likelihood of infection.
14
Procrit is used for treating anemia (abnormally low hemoglobin levels). Procrit is a protein that
stimulates the production of red blood cells. It is frequently used in combination with chemotherapy
treatment to decrease the fatigue associated with anemia.
15
As her illness progressed, it became increasingly difficult to differentiate between symptoms of disease
and treatment side effects. Some of Marian’s cognitive difficulties could have been induced and/or
exacerbated by the high dose steroid treatment she was undergoing.
16
Between March 16 and April 2 her platelets fell from 67,000 to 49,000. On April 3, when she stopped
taking the chlorambucil, her platelets were 53,000.
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that the current dose was “toxic” and that he was “no longer comfortable with it”
especially since it did not seem to be decreasing her lupus symptoms. He also said he was
troubled that the original 2 month regimen had continued for almost 5 months. With the
discontinuation of the chlorambucil, Marian’s prednisone dose was increased to help
manage persistent symptoms. A week later, Marian sent a FAX to Dr. X complaining of
fever (101◦F), chills, shortness of breath, and inflammation (signaled by a SED rate)
which was “off the charts.” She noted, “I still can hardly walk, my legs hurt so bad. I
guess I’m a mess. Should I adjust my meds again? Please advise.” Dr. X told her to go to
the emergency room. The next day Marian was admitted to the hospital. A lung biopsy
suggested that she had lupus pneumonitis17: the attending physician requested a consult
from the staff rheumatologist, Dr. Z, who noted that Marian’s current problems may have
been due to bone marrow suppression from the chlorambucil treatment. She was given
high-dose steroids for six days and released. Two days later, Marian’s fever spiked and
she was readmitted, treated with high-dose steroids for two more days, and discharged.
At follow-up, Dr. X doubled her daily prednisone dose.
At her appointment with Dr. X a week later, he proposed high-dose
immunoablative therapy with cyclophosphamide (Cytoxan)18 which would involve
immune suppression (bone marrow suppression) to a point just before its complete
17
Lupus pneumonitis is a rare form of pulmonary involvement in which high levels of white blood cells in
the lungs precipitate symptoms. It is considered a very serious condition and is usually treated with
steroids.
18
Cyclophosphamide (Cytoxan) is an alkylating agent which prevents cell division. It comes in pill form
but is usually given intravenously. It is used most commonly to treat cancers including: breast, ovarian,
lung bladder, bone, lymphoma, leukemia, myeloma. Due to its immunosuppressive activity it is also used
to treat autoimmune disorders. It is considered standard of care in the treatment of lupus patients with brain
and/or kidney involvement.
306
eradication (bone marrow failure).19 Dr. X told her that she needed this treatment “in
order to survive her lupus.” Marian, an avid reader and skilled networker, talked with
friends20 and did some research on her own, and found out that there was a clinical trial
Johns Hopkins University that, was recruiting lupus patients for experimental high-dose
immunoablative Cytoxan therapy. She mentioned it to Dr X and he responded favorably.
In the meantime, Marian had an appointment with her hematologist, Dr. Y, which Gary
and his wife attended with her. Dr. Y told them that he could not safely administer
Cytoxan to Marian given her current “condition” and the high-dose steroids she was
taking. He was afraid “she might get an infection which she would not survive.”
As an interim measure, Marian went through Plasmapheresis, a process much like
dialysis which “cleans” the blood by removing autoantibodies. 21 Although this treatment
has fallen out of favor in recent years, it remains an alternative for providing a temporary
relief of symptoms in severe cases that are not responsive to other treatments. Dr. X
probably prescribed it because high-dose steroids were not improving Marian’s condition
and he was keen on decreasing her immune activity (even temporarily) while cytotoxic
chemotherapy was suspended. A subclavian port22 was implanted in her chest to make it
easier. After the procedure, which lasted three days and was followed up with two days
of high-dose steroids, Marian complained about breathing problems and showed
19
This treatment is commonly referred to as a “warm-reboot” since the patient’s immune system comes
back on its own. A “cold-reboot” involves complete bone marrow eradication with subsequent allogenic
(donor) autologous* (self) bone marrow transplantation. In the case of autologous bone marrow
transplantation, the patient’s own bone marrow is harvested prior to high-dose Cytoxan treatment and then
replanted. *This procedure was successfully carried out on Danielle at Emory University.
20
Marian found out that a friend of hers, Kitty, was undergoing chlorambucil treatment under Dr. X’s care.
21
Plasmapheresis was pioneered in the 1970’s as a way to mechanically remove autoantibodies from the
bloodstream. Plasmapheresis is a process like dialysis that separates endogenous plasma and replaces it
with other fluids. Excessive immune suppression can occur since the procedure removes all antibodies from
the blood. Since it does not affect the immune system directly, it offers only temporary relief of symptoms.
307
diminished lung capacity. Dr. X raised Marian’s prednisone to 160 mgs per day, double
her previous level. Within two weeks, Marian had prednisone induced diabetes requiring
insulin injections23 and was developing cataracts.24 At this point under Dr. Y’s care, she
was receiving regular platelet and blood transfusions to keep her blood counts as high as
possible. She sent a fax to Dr. X informing him about her worsening symptoms: low
blood counts (even after Procrit injections), achy joints, muscle pain, and difficulty
breathing. She wrote: “I’m so overwhelmed, don’t know if I should call you, Dr. Y or my
PCP (primary care physician). Don’t have an appointment with Dr. Y until Friday. I need
some advice please, I’m home alone and I’m quite scared.” After her appointment with
Dr. Y, Marian faxed him again.
Dr. Y pretty much told me he can’t do any treatment without harming me on this much steroids.
He told me that platelets and blood are only a bandage if lupus is affecting my bone marrow. I’m
so disappointed. What are we going to do now? More Pharesis? If you need to put me in the
hospital to get me down off these steroids and get my bone marrow and blood right, then let’s do
it. I’m sure you’re as frustrated as I am! Thanks Dr. X, Marian [signed]
What Marian did not understand was that the bone marrow suppression was not
caused by her lupus, it was a result of the chlorambucil chemotherapy. Two days later,
Marian faxed him again to report her symptoms, and asked:
Could I have an infection? I’m having a really hard time breathing today, worse than yesterday.
I’m having a dry cough also. My white count was 4400 the other day25…. Could I have something
septic going on?.... Sorry about all the questions. I know you are very busy, please at your earliest
convenience.
Three days later, she had such difficulty breathing that she drove herself to the
emergency room, where she was admitted for observation and tests. Chest x-rays showed
some infiltrates and the doctors thought she had bronchitis perhaps due to a slight
23
Prednisone induced diabetes can occur in patients on long-term corticosteroid regimens. Marian’s
diabetes was induced in a shorter time due to repeated exposure to high-dose IV and tabular prednisone.
24
Prednisone induced cataracts can occur in patients on long-term corticosteroid regimens. Marian’s
cataracts were induced in a shorter time due to repeated exposure to high-dose IV and tabular prednisone.
25
The normal range for white blood cells is 3,800 to 10,800/ml.
308
infection. She was discharged with a Nebulizer for home breathing treatments and
antibiotics. On June 1 Marian sent a FAX to Dr. X entitled “Progress Report.” After
listing her symptoms and the steps she took to deal with them (Tylenol for fever and
Ibuprofen for pain), she wrote:
I’m ready for my trip, I just want everything to be over with. I spent an hour this morning in my
bathroom picking up two bottles of pills that I dropped because of my clumsy hands.26 I can’t hold
onto anything, of course it didn’t come without a pity party crying in a puddle on the floor…
please Dr. X, get me off these steroids, I’m an emotional wreck! By the way, thanks again for your
kind words before I left the other day, it really means a lot! Regards, Marian [signed]
The next day, Marian traveled with her sister-in-law to Johns Hopkins to meet with the
clinical trial team. She underwent chest x-rays, blood tests, and a bone marrow biopsy.
Her blood counts were so low, she received a platelet transfusion. But she was not
selected for the clinical trial.
Soon after her return, Marian awoke in respiratory distress. She called an
ambulance. When she got to the emergency room her pulse oxygen level was extremely
low at 72%. She was admitted and not released until a month later, on July 16, 2001.
While she was in the hospital a pick line27 was implanted in her upper arm so that she
could get blood transfusions, and blood work (leaving the port free for other purposes).
She also had a barrage of other tests done: chest x-rays, chest CT scan, EKGs,
bronchoscopy, open lung biopsy and a bone marrow biopsy. Marian received several
blood and platelet transfusions during her stay; the admitting physician noted that her low
blood counts (see graphs) may be due to either lupus activity or drug toxicity.28 At the
time of admission, Dr. Z, the attending rheumatologist who had consulted on her case
26
A side effect of prednisone is shaky hands. In some cases, the shaking is so severe it hampers patient’s
ability to manipulate their hands.
27
A peripherally inserted central catheter (PICC) is inserted into one of the large veins in the arm (usually
near the bend of the elbow) from where it is threaded into the superior vena cava.
28
Her platelet count was 26,000, her WBCs were 1,900 and her SED rate was 89.
309
previously, suspected that Marian had an infection of some kind. The chest x-rays and CT
scan showed no evidence of pleural disease (which is indicative of lupus pneumonitis);
the open lung biopsy determined that Marian had pneumocystis carinii pneumonia.29 She
was treated with antibiotics. The consulting infectious disease doctor noted in his report
that despite the persistent low blood counts thought to be due to the “secondary effects of
chlorambucil… bone marrow fails to show any evidence of long-term drug toxicity.”
While she was in the hospital, Marian continued to correspond with Dr. X. via fax
and by phone. She updated him on her progress and asked many questions about her
status and treatment plan. Her letters grew more apologetic. “Sorry about all the
questions,” she wrote “I just feel I need some questions answered by you, my Doc!
[emphasis in original] You know me best!” In response, Dr. X advised Marian to undergo
immediate treatment with Cytoxan. The attending oncologist refused saying that Marian
would not survive it. The attending rheumatologist, Dr. Z, who was by then familiar with
her case, concurred and said such therapy was “out of the question.” Midway through her
hospitalization, two of Marian’s brothers and their wives met with Dr. X. By this point
Dr. X was growing tired of the constant attention Marian required, and he informed her
that the meeting would cost $300 and that they should bring a check. That evening Dr. X
told Marian’s family that she would not survive without high-dose Cytoxan therapy.
Marian refused to undergo the treatment.
After Marian was released, she required two months of in-home nursing care. She
had an oxygen canister, a walker, a cane, a home health aide to help her bathe three times
a week, and an in-home nurse to draw blood and clean out her pick line. She also had a
29
Pneumocystis carinii pneumonia is frequently seen in severely immune suppressed persons (e.g. late
stage AIDS patients).
310
physical therapist to help her exercise to gain strength. Her prednisone dose had been
lowered to 40 mgs daily (from 160 mgs). During this time, Marian and I spent a lot of
time together. Our favorite activity was making greeting cards and watching television.
She would always make me laugh and warn me about “millimeterizing” every card I
made. “Just finish it! For Gosh sakes – it takes you forever. How are you ever going to
make enough cards for your friends if it takes you so long.…” Her teasing made me
laugh at myself - something I did a lot when she was around.
In August 2001, Marian decided to leave Dr. X. She informed him that he was
“out of network” for her and that she would now be seeing Dr. Z, who was “in network.”
Marian confided that she could not think of any other way to let him know. She decided
to switch because she felt Dr. X had misdiagnosed her lung condition as lupus
pneumonitis and “over medicated me,” referring to the prednisone-induced diabetes. She
said she “owed” her life to Dr. Z and the pulmonologist who diagnosed the PCP and that
she “would have died” if they had not “figured out what was wrong.”
That Fall Marian continued to have blood and platelet transfusions. Her weekly
CBC counts showed small improvements but her new oncologist advised no Cytoxan
treatments until her bone marrow recovered. He told her that he believed her bone
marrow problems were directly related to the high doses of chlorambucil she was given
under Dr. X’s care. He told her it could take as long as one year for her to get better.
In September, Marian started experiencing hip pain. An MRI showed bone marrow decay
or avascular necrosis30 in both hips, a painful and cumulative result of long-term highdose steroid use that usually requires joint replacement surgery. At the time she was not
30
Avascular necrosis is the progressive decay of the bone marrow in the hips and shoulders which usually
results from years of cumulative steroid use. It is an extremely painful condition which ultimately requires
joint replacement (usually the hips or shoulders).
311
strong enough for hip replacement surgery. Dr. Z put Marian on intravenous immune
globulin treatments to try to improve her immune status.31 For the next six months, she
received treatments lasting five days, six hours each day. By the end of October she was
down to 20 mgs of prednisone daily. In November, however, Marian’s blood counts
began to drop again and she had very high levels of inflammation, as evidenced by her
SED rate of 140. She continued to have her blood monitored on a weekly basis.
Between January and March 2002, Marian required blood transfusions every two
weeks. In February, Marian was admitted to the hospital again with confusion, shortness
of breath, and a rash over her entire body. While she was in the hospital another bone
marrow biopsy was performed. The results confirmed that she had drug-induced
Leukemia due to the chlorambucil treatment.32 Marian was in bone marrow failure. The
only intervention that could save her life was an allogenic (donor) bone marrow
transplant.
Marian’s doctors contacted Emory University hospital to schedule her for a bone
marrow transplant. Gary’s bone marrow was a “perfect” match. Between April 18 and 23,
what was left of Marian’s bone marrow was eradicated with high-dose cytotoxic drugs,
and the transplant occurred on April 24. Two weeks later she was discharged from the
hospital, only to be readmitted later that month with acute Graft-Versus-Host-Disease
(GVHD).33 She was treated with prednisone. When that failed, she was diagnosed with
31
IVIG is routinely used for the treatment of patients with antibody deficiency syndromes. These patients
are at risk for recurrent infections, primarily involving the upper and lower respiratory tracts. IVIG
treatments decreases morbidity and mortality in patients with certain immune deficiency disorders.
32
The biopsy showed bone marrow aspirate counts of only 8% promyelocytes (precursor white blood cells)
and 10% myeloblasts (early white cells). Platelets were severely decreased. Cells analyzed for
chromosomal anomalies showed loss of chromosome 7 and deletion of part of chromosome 13. Marian’s
bone marrow was producing abnormal blood cells incapable of sustaining life.
33
Graft-Versus-Host-Disease (GVHD) is a common side effect of an allogenic bone marrow transplant. In
GVHD, antibodies from the donated marrow attack the body of the transplant patient. In Marian’s case the
312
steroid resistant GVHD and enrolled in a clinical trail. In July she developed a viral
infection and then a fungal infection. By mid-August she was in kidney failure. When the
randomly assigned drug treatment failed and things began to look grave, she was dropped
from the study. In consultation with her family, she refused dialysis. By late August she
was in a coma and in liver failure. The morning of September 9, 2002 Marian died.
The Objective and Subjective Uncertainty of Treatment Modalities
“Much of medicine still lacks the basic organization and commitment to make sure we do what we know to
do. But spend almost any amount of time with doctors and patients, and you will find that the larger,
starker, and more painful difficulty is the still abundant uncertainty that exists over what should be done in
many situations.”
—Atul Gawande 2002, page 236
In general, changes in treatment modality are based on standard of care practices
and clinical judgment. The reason Dr. X deviated from standard of care and initially
prescribed chlorambucil rather than cyclophosphamide (Cytoxan) is unclear. However his
justification for the change was unambiguous. Similar to every other change in treatment
modality, Dr. X switched Marian to increasingly stronger medications based on an
evaluation of her blood work and self-reported symptoms. The use of objective and
subjective measures of illness severity coupled with the type of lupus diagnosed, led Dr.
X to make some surprising decisions: 1) he did not establish the organicity of her disease
(MRI is negative); and 2) he overlooked falling blood counts after chlorambucil treatment
and continued to recommend immunoablative therapy with high-dose Cytoxan. Thus
relying more on Marian’s self-reported symptoms in combination with some objective
GVHD affected her gastro-intestinal organs. It would be comparable to rejecting a kidney after a kidney
transplant but GVHD is more serious since the transplanted bone marrow is producing antibodies which
attack host organs. GVHD is usually treated with steroids to weaken the immune system. Marian’s GVHD
was steroid resistant for which there is no effective treatment/cure.
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signs (skin rash which indicates flare in lupus activity), Dr. X overlooked the declining
blood counts in favor of an aggressive treatment strategy.
As previously discussed, the modalities employed to treat lupus can vary widely
from patient to patient. This is due to the constellation and severity of symptoms
experienced by each woman. Women with non-organ threatening disease (primarily joint
and muscle pain), are treated with non-steroidal anti-inflammatories and antimalarials
(hydroxychloroquine). Women with organ threatening disease are treated with steroids
(to prevent lose of organ function). Women with serious organ-threatening disease (for
whom steroids alone is not sufficient to deal with their problems) are treated with
cytotoxic drugs (chemotherapy). Antimalarials, steroids and chemotherapy are called
“disease-modifying anti-rheumatic drugs” (DMARDs) by some rheumatologists. At some
point during the course of illness, virtually every woman will be treated with one or more
of these drugs and endure side effects that vary in intensity based on the dose and length
of time taken.
When Marian was diagnosed she was immediately put on an anti-inflammatory
and an antimalarial. When her symptoms did not improve, Dr. X added prednisone, a
steroid. From that point forward she was never taken off steroids; her dosage was
periodically readjusted in order to manage her symptoms. When her symptoms continued
to worsen, immunosuppressive and eventually cytotoxic drugs were prescribed: first the
immune suppressants methotrexate and azathioprine (from which Marian got a “drug
fever”) and then the cytotoxic drug chlorambucil (Leukeran). When Marian’s symptoms
did not improve the dosages of the chlorambucil were progressively increased until her
“blast” treatment which lasted 5 months. Since the chlorambucil was suppressing her
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bone marrow, during her treatment with chlorambucil she also took Neupogen and
Procrit shots to stimulate white and red blood cell production. This strategy boosted her
energy levels while undergoing treatment but it also masked what was really going on
with Marian’s bone marrow.
The decisions to switch her from one treatment modality to another were based in
part on physiological signs, blood counts and self-reported symptoms. Her main
physiological sign was a rash that would come and go based on immune system activity
(flares). Early on, her temperature could have been indicative of flares but later it was
more than likely due to the pneumonia she contracted due to her suppressed immune
condition. Her blood counts started out normal but rapidly declined as her chlorambucil
treatment continued for the first year and then increased over the last 5 months. Graphs 1
to 6 document her rapidly declining blood counts and her increasing SED rate.34
Powerful drugs require a level of caution before they are employed. In the
absence of objective tests, Dr. X relied heavily on Marian’s self-reported symptoms to
assess her illness experience. Her SED rates were bad, her blood work was worse, but he
relied on her self-reported cognitive function to diagnose central nervous system lupus
and to adjust her treatment. Beyond the initial MRI showing no basis for the organicity of
her disease, no tests were conducted to establish disease progression. Given Marian’s
repeated demands for treatment, Dr. X continued to tinker with her therapy in a hopeful
attempt to get it right. However he overlooked the possibility that does not Marian’s
worsening problems with memory loss and concentration could have been a side effect of
34
As her illness progressed, Marian’s SED rate was used as a proxy for lupus disease activity (and also
contributed to the incorrect diagnosis of lupus pneumonitis). However, its rapid increase beginning in
December 2000 was probably due to her severely suppressed immune state and the beginning stages of
pneumonia (Graph 2).
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the prednisone. High-dose and long-term prednisone use has been shown to cause
cognitive dysfunction, confusion, paranoia, extreme changes in mood, hallucinations,
depression and even psychotic breaks (Greenhalgh 2001; McLaurin 2005).35
What Went Wrong?
Marian’s Frame of Mind: The Influence of Character and Experiences
Before discussing the sociocultural and biomedical forces which shaped Marian’s
experiences, it is important to characterize more fully Marian’s frame of mind and social
circumstances. When I interviewed her in August 2001, Marian knew that the treatment
she had received from Dr. X had probably caused her current complications. However,
the extent of the damage was still unknown since her first bone marrow biopsy had come
back normal. Although she was seriously ill and incapacitated by her symptoms, she was
philosophical about her situation and hopeful that in time things would improve. Her
hopefulness was in part based on her faith in biomedicine but also on her
uncompromising demands for care. Marion knew what it meant to be an “empowered”
patient. In a word, she was demanding. Yet her demands were never meted out in a selfcentered way. She demanded care and believed that her requests were justifiable. She
expected her doctors to give her a diagnosis and help her feel better. Her demands for
care were evident throughout her illness narrative. Even prior to diagnosis she actively
sought answers:
35
In this study, Hope experienced a psychotic break due to prednisone use (only 20 mgs daily for two
weeks) and had to be institutionalized for a short time. Greenhalgh’s (2001) depression and cognitive
deterioration were due to her treatment regimen which included Indocin. Kitty’s “break through” symptoms
(discussed later) and what she calls cognitive “shut downs” could have been due to treatment side effects.
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He (primary care physician) put me in the hospital for testing and my ANA came back positive….
It was low positive. I was only in there for like 24 hours so they could test [me]... He sent in a
Rheumatologist and the man said, “Well, I think it’s something developing but we’re just going to
have to wait and see.” You know, I wasn’t satisfied with that. (giggle) So I said, “You send me to
another one.” So I went to another Rheumatologist. Their office was really disorganized. She
couldn’t really tell me what was going on. I already had an appointment with my third
Rheumatologist (Dr. X) (giggle), so I kept it and finally in January I went to see him.
Marian’s determined quest for diagnosis is evidence of her faith in biomedicine. If the
current doctor was not able to diagnose it, then maybe the next one would. Early in her
diagnostic odyssey, the possibility of an autoimmune disease was considered. Once it was
mentioned, Marian educated herself about autoimmune diseases including lupus. As she
visited physicians across a broad spectrum of specialties, she became increasingly
puzzled by their inability to diagnose her. Like other women in this situation, the
expectation of the certainty of science was not met. Unable to offer a definitive diagnosis,
one of Marian’s doctors attempted to justify this based on life insurance eligibility. This
exchange served to underscore Marian’s growing frustration with what she believed was
now outright reticence to give a diagnosis based on unimportant considerations. What she
did not understand was that her doctor did not know what was going on:
I thought I had it [lupus] but I couldn’t get anybody to diagnose me. In the mean time, I was
getting sicker and sicker. You know? It’s like the first doctor that came to see me in the hospital,
he goes, “Well, I don’t want to diagnose you because you’re too young and you won’t be able to
get life insurance.” I’m like, “I can’t get up and go to work. I’m a workaholic - OK? I’ve got life
insurance at work. I’m fine. Somebody needs to figure out what’s wrong with me.”
Still confused by her ’doctors seeming unwillingness to give her the diagnosis of lupus
(as if they were trying to “protect” her from the truth), Marian wrote the following in a
letter to Dr. X before her first appointment: “By the way, you are doctor number seven. I
assure you that I am not a hypochondriac. My dear friend with ALS was not upset when
he was diagnosed. He said ‘have you ever just known something?’ He knew before he
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went that day. I know my body and I know that something is not right. I want to thank
you for your time and I am looking forward to meeting you. Sincerely, Marian [signed].”
Marian’s faith in biomedicine did not flag, even when her symptoms were
considered psychosomatic. Her insistence that she was not a “hypochondriac” was a clear
attempt to shut out what was becoming a routine response in her diagnosis story. In spite
of this, Marian still gave her doctors the benefit of the doubt when she was diagnosed
with psychosomatic symptoms. She surmised that their reaction was normal given the
circumstances.
K: What do you think it was, from doctor to doctor, why couldn’t they diagnose it?
I: Well, it’s hard to diagnose anyways. I think a lot of it was I was so stressed out and under so
much anxiety. I mean, I would just go into like my Endocrinologist, and just sit down and cry. He
even put me on [anti-depressants]… They thought I was crazy. They thought I was going crazy
and I was imagining it; which is a typical response unfortunately to a lot of women’s problems.
You know? I was having the panic attacks and I just wasn’t myself. I was really, really in a
different state of mind. I would go in there and I would just cry and say, “I’m desperate.
Somebody’s got to help me. There’s something wrong with me.” They see this woman sitting
there falling apart and they tell you to take an antidepressant. You know? I just knew something
was wrong because my body just wasn’t right.
Marian’s self-doubt, which borders on self-blame, is particularly poignant given her
demanding character. Driven to the point of complete frustration, her undiagnosed
symptoms increased her anxiety and panic attacks. As that happened, she began to blame
herself for her predicament. Greenhalgh had a similar experience, which she describes as
“living by the codes of femininity,” “silencing” the doubtful self, and ultimately adopting
her physician’s truths as her own (2001:190). Marian’s feminist self is aware of the
contradiction but she doubts herself nonetheless.
Once she had a diagnosis, and by association a doctor who believed in her
symptoms, Marian became a compliant patient. When Dr. X asked her to take 2 months
leave from work, she did it. When he suggested she leave her job and get on disability,
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she did it without question. She followed every order he gave and took every medication
he prescribed. For someone who considered herself a feminist, this might seem
surprising. But once she was diagnosed, she trusted her doctor, and began to define him
as the expert on her body. When she was hospitalized with pneumonia and confused
about what to do next, she pleaded with Dr. X to help her: “you know me best!” Her trust
gave him the power to decide what should happen next, and how she should be treated.
Her pleading with him shored up his power. But ultimately, it also led her to question his
judgment as the expert on her body and on her disease. How could the doctors at
Gwinnett Medical Center disagree with Dr. X’s recommendation for high-dose Cytoxan
treatments? Could he be wrong? In his response to her plea, Dr. X reiterated his
recommendation for high-dose Cytoxan treatment. At that point, for the first time after
almost 3 years, Marian decided not to follow his advice. She justified the decision based
on the emphatic urgings of the attending pulmonologist and rheumatologist; she followed
two powerful expert opinions over one. They feared she might cascade into bone marrow
failure as a result of the Cytoxan treatments. What they did not know was that the
chlorambucil treatments had already set that process in motion.
Social Circumstances: The Reaction of Family and Friends
When Marian was first diagnosed, she was displeased with the reaction of family
and friends. She felt they did not understand the seriousness of the diagnosis until her
symptoms got worse.
My family really didn’t realize how sick I was until I had to leave my job; which was a year and a
half ago. A couple of my brothers, they were upset, but they had no idea what it was and how it
was treated. I kept telling them, “It’s very serious, I could die from this.” “Oh, you’re not going to
die!” You know, all that kind of reaction. I was pretty sick at first, but nowhere near what I am
now. They really didn’t get the gist of it until like this year when I was in and out of the hospital.
My one sister-in-law sat me down and said, well, I’m the youngest and the only girl… “They’re
used to you being really independent and never having to ask for anything. You were a career
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woman and had your own job. It’s denial, you know. They don’t want to believe that their little
sister is as sick as you are.” So, at first, they all didn’t really seem that concerned.
As evident in the quote above, Marian’s illness narrative included “death discourse” to
convey the seriousness of her illness.36 She struggled not only to get her doctors to take
her disease seriously but also family and friends. When Marian was hospitalized after the
bone marrow transplant, I asked one of her brothers about his initial reaction to the
diagnosis. He said he thought she had something like AIDS and it didn’t make any sense.
“I didn’t understand what she was talking about half the time.” Since Marian often
described lupus as a “disease I could die from,” her brother thought she was being
melodramatic and took it in stride. Marian repeatedly gave members of her family books
and information about lupus. She felt “they needed to know what was going on.” Her
family’s understanding of the seriousness of her condition did not deepen until her
hospital admissions became more frequent. Marian’s friends had a similar reaction; they
did not understand until she started to get sicker.
My friends, they’re really good. Well, some of them understood, some of them didn’t. It was like I
was always the social one at work. I was always having people over for cocktails because of the
job that I did - the trade show manager. I would treat the technicians out to dinner or have them
over here [her house] or whatever. When I started telling people “no”, they didn’t understand.
“Let’s go have some drinks after work.” Well, I couldn’t go into a smoky bar because it would
make me sick. Some people would take it personally. This was mostly my friends at work. Some
people understood. But when they gave me a hard time it would make me feel really guilty. I had a
really, really tough time dealing with that….
Everybody, for the most part, [now is] being really supportive. Especially this year since I’ve been
so sick, I’ve got people coming over and cooking for me and cleaning. I’ve got great friends. I
think it just took a while for it to sink in for them too, because like I said I was always the one at
work that organized everything. Even our Thanksgiving dinners where everybody brought in a
potluck and all that stuff, I did everything. When I stopped being able to do stuff, they didn’t know
how to act. You know? I had to learn how to say “no” to people. That was a big, a big step for me
too because I just wanted to accommodate everybody. But I learned. (laughs) I learned.
36
Invoking death was a narrative convention shared by many women in this study. Kitty had a tombstone
candle inscribed with the phrase “I told you I was sick.” She jokingly said she bought it for her parents.
Women at support group meetings remarked that cancer patients had it easier since everyone understood
the relationship between cancer and death. Lack of knowledge and the variability of the severity of lupus
may contribute to misunderstandings over the seriousness of the diagnosis.
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Marian’s family and friends had a similar reaction to her lupus diagnosis. Unable
to comprehend its chronicity and unaware of its treatment consequences, her family and
friends reacted with qualified sympathy and limited support. During the initial phases of
her treatment Marian was virtually on her own. In order to cope, she began seeing a
therapist. He advised her to “say no” and put herself first. “You’re the one that’s sick. Let
them call you, and if they don’t call you, then that’s just their problem.” The lack of
social interaction was difficult for her. Among the chronically ill, a lack of understanding
from family and friends can result in social isolation which amplifies emotional distress
and depression (Ware 1999; Clarke and James 2003). She did the best she could to
reinvent her social circle. She contacted the LFA and started attending support group
meetings. The fact that her family and friends eventually came to understand her
predicament had more to do with the acute nature of her illness at that time. Already
suffering from the effects of bone marrow failure, her consecutive hospitalizations
signaled a level of sickness which was worthy of note. If Marian was sick enough to be
hospitalized, then she must really be sick. Her family and friends reengaged and offered
the support she urgently needed.
Institutional Factors: Interactions with the American Health Care System
Marian’s feelings of social isolation and lack of support were compounded by her
interactions with the biomedical establishment. Unable to breathe and not yet diagnosed
with pneumonia, Marian was discharged early from the hospital only to be readmitted
again the next day. At the time she was confused by the discharge but later found out
what really happened.
M: In April, they wanted me out of the hospital and they discharged me early. They discharged me
on a Thursday and I was back in there on Friday because I had a fever that night. There was
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something written in my chart by the RN nurse that wanted me out of there. I saw it because my
doctor gave me a copy of it [Marian routinely asked her doctors for copies of her medical records]
…You know the order sheet where everybody just kind of makes notes? The nurse will write the
date, the time, “I gave her two Tylenol and then blah blah blah…” It was at the bottom of one of
those sheets that had like four other notes on it. It said: “Dear doctors, this is Christie from Blue
Cross/Blue Shield. Please discharge this patient by Thursday or you will make me permanently
gray headed.” Then it had her name and RN. So, I read it and I was like, “What is this?” …So,
anyways, I sent it [the note] to our personnel managers and they were livid. I debated should I
send them it, shouldn’t I? I thought this girl was more worried about having to do some
paperwork…
K: Than about a human being?
M: Right. That’s exactly what my personnel manager said to me before I even said that to him.
They gave a copy of it to the agent along with [the letter] I had written him. I said I was really
sick. I was in a lupus flare which you can die from, which isn’t no exaggeration, on top of
pneumonia. It just seemed like they were more worried about getting me out of there than taking
care of me. Our agent was livid. Then he got a hold of them and apparently the girl was
reprimanded. I got a letter of apology from them and that’s when they gave me the case manager.
But that’s what was in there and that’s typical ... When you’re chronically ill [breaths out] you
know, [its] just more stress. (giggle)
Under the circumstances, Marian’s actions were warranted. The fact that she
weighed her options carefully before taking action was typical. She carefully considered
the impact her complaint would have on the nurse and then decided to act based on
principle. In spite of the inappropriate note on her chart, Marian’s early discharge from
the hospital indicates the depth of uncertainty surrounding her case. The attending
physicians knew she had lupus and initially ascribed her symptoms to lupus pneumonitis.
When her symptoms worsened despite repeated treatments with high-dose steroids, a
lung biopsy was ordered and she was diagnosed with pneumocystis pneumonia.
Marian’s demands for care did not make her popular on the hospital ward. When I
went to visit, I became her advocate. I communicated with the nurses on her behalf and
frequently found myself caught between her needs and the needs of the nurses. When the
nurses made mistakes – and this happened more often that I realized prior to my
fieldwork - I would talk with them to try to re-establish trust. If that did not work, I would
involve the head nurse. Marian had a lot of charm as a patient because she was extremely
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appreciative of the hospital staff and everything they did for her. She made a point of
getting to know every nurse by asking questions about family, hobbies and interests. She
greeted and thanked each for the care they provided no matter how insignificant. But she
also expected a lot. She expected to be told the dosage of every drug before it was given.
Some nurses found this irritating and would not wake her during the night before
injecting medication into her IV.
Patient care is a tricky business. Nurses need to be able to do their jobs but
patients also need to feel that their autonomy is respected. Marian’s case was confusing
to everyone, including the doctors and nurses. As Marian’s hospitalizations became more
frequent and as she became sicker, she could no longer track every change in her
treatment regimen. Her friends and family had to do it for her. The general consensus was
that she needed to feel protected, taken care of – because of the biomedical mistakes of
the past, she was no longer able to trust without question. Protecting Marian from wellmeaning but all-too-human doctors and nurses became the daily security and small solace
her friends and family could provide.
Although my retelling of Marian’s story is replete with biomedical facts about her
illness condition, an equal amount could have been said about what she went through
financially. She left her job and went on disability. She spent her savings on medical care.
Marian took responsibility for managing her illness finances. She did it not because she
wanted to but because she had no choice. I have notebooks full of receipts, mileage logs
to pharmacies, and letters and faxes to account managers at every doctor’s office and to
her insurance company (discussing inconsistencies and misunderstandings about every
conceivable financial aspect of her illness). She was a meticulous record keeper because
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she was organized to begin with but also because the situation demanded it. As a result of
the nurse’s note, Marian was assigned a case manager by her insurance company. This
meant that she had one point of contact with a person not only familiar with but
responsible for her case. Disagreements with the insurer continued but at least the lines of
communication were clear. Marian managed her illness like an accountant and she was
always on top of things even up until the very end.
Diagnosis and Treatment: The Exchange of One Uncertainty for Another
“The core predicament of medicine – the thing that makes being a patient so wrenching, being a doctor so
difficult, and being a part of a society that pays the bills they run up so vexing – is uncertainty. With all that
we know nowadays about people and diseases and how to diagnose and treat them, it can be hard to see
this, hard to grasp how deeply the uncertainty runs. As a doctor, you come to find, however, that the
struggle in caring for people is more often with what you do not know that what you do. Medicine’s ground
state is uncertainty. And wisdom – for both patients and doctors – is defined by how one copes with it.”
— Atul Gawande 2002, page 229
Marian’s reaction to her diagnosis was relief. She was happy that she was not
crazy, but she also was relieved to have a diagnosis. The uncertainty that plagued her
every thought and emotion was replaced by something certain: a diagnosis. In that pivotal
moment when her doctor told her she had lupus, she finally had an explanation for her
symptoms. There was no longer doubt about the legitimacy of her bodily experiences.
She had a cause that justified her suffering. Marian’s relief was short lived. Soon after
she began to worry about what would happen next. She talked about feeling “scared.”
Perhaps she felt that way because she already knew that lupus was an incurable chronic
illness. In spite of this, she was hopeful: “Now I can get some treatment.” Marian’s
optimism about her lupus treatment is central. She knew that treatment really meant
“management.” But she was certain that the doctor who gave her the diagnosis could also
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treat her. The biomedical diagnosis gave her certainty about the illness and now she
expected the same from the treatment.
In his book, Complications, Atul Gawande discusses the problem with this
assumption. “You have a cough that won’t go away – and then? It’s not science you call
upon but a doctor. A doctor with good days and bad days. A doctor with a weird laugh
and a bad haircut. A doctor with three other patients to see and, inevitably, gaps in what
he knows and skills he’s still trying to learn” (2002:5). Despite the fact that “biomedicine
has become pervasive in modern life, it remains mostly hidden and often misunderstood.
We have it to be both more perfect than it is and less extraordinary than it can be”
(Gawande 2002:8). Biomedical treatment in Marian’s case was far from perfect and only
extraordinary because it was unconventional. What Marian did not understand was that
her rheumatologist, like any other treating physician, was going to do the best he could to
provide treatment based on standard of care but with a healthy dose of uncertainty of his
own.
Since lupus symptoms vary widely from case by case, rheumatologists routinely
take a trial and error approach to treatment until a good fit is found. Finding the
appropriate treatment modality takes longer for some patients than others. Finding a good
fit is especially challenging for women with organ-threatening lupus, as they usually
require treatment with high-dose medications that cause serious side effects. Since there
is no definitive lab test for lupus activity, proxy measures like the sedimentation rate and
blood counts are used in combination with self-reported symptoms to adjust treatment
strategies. What Marian and her doctor wanted her treatment to do was make her feel
better. Yet her symptoms became progressively worse. Although Marian did not know it,
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the certainty she felt when diagnosed with lupus would not be repeated. Her treatment
strategy changed almost as often as she saw Dr. X. She eventually learned that lupus
treatment was far from certain. In fact, it was as uncertain as diagnosis.
The Grateful Patient: Exchanging Biomedical Certainty for Self-Doubt
The trust Marian placed in her doctor is a critical factor in the circumstances
fueling her death. By the time she was diagnosed, she had seen seven doctors from
various subspecialties, including rheumatology. Overwhelmed by her unexplained
symptoms she developed anxiety attacks. The uncertainty of her situation was labeled
psychosomatic and she was made to feel like a hypochondriac. “They thought I was
crazy,” she would say. She had seen many physicians but felt they were discounting her
lived experience. She knew something was wrong with her body and she struggled to find
a doctor who could figure it out. Marian’s experience is not unique, but as a patient and a
woman, she began to doubt herself. This doubt reinforced the uncertainty surrounding her
diagnosis as well as the validity of her symptoms. On one level Marian knew that the
symptoms she was experiencing were real, but at the same time she was being told that
they may not be real at all. As she put it, “They thought I was going crazy and I was
imagining it.” This state of uncertainty was extremely confusing because she expected
the doctors to diagnose her and not blame her for her problems.
As Marian’s diagnosis delays continued, she started to interpret her doctor’s
uncertainty as hedging the truth. The combination of her self doubt and repeated
encounters with uncertain physicians created fertile ground for Dr. X. He offered not only
the certainty of a diagnosis which validated the reality of her symptoms and legitimized
her suffering; he also questioned previous physician uncertainty. “I don’t understand why
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you’ve been passed around so much. It’s very, very typical. I see it every day. You have
lupus. You have a pretty good case of it and you’ve had it for a long time.” She was not a
hypochondriac after all and she was not crazy. She had encountered a series of physicians
who were unable to diagnose her due to lack of experience. Dr. X offered Marian
biomedical certainty in place of self-doubt. He legitimated her suffering and reaffirmed
her faith in biomedicine. With the diagnosis came a promise of treatment, and Marian
was ready to do whatever it took to feel better.
When I interviewed Dr. X, I found him personable and forthright. I asked him
about the relationship between diagnosis reaction and diagnosis delays.
K: One of the things I’ve been noticing from the stories that I’ve been collecting is that there
seems to be a direct correlation between the length of time until the diagnosis takes place, and
whether a woman feels that it’s a good thing that she got a diagnosis or whether it’s a really
devastating diagnosis. Do you tend to see the same thing?
Dr. X: That’s very good, so the longer they have not had a diagnosis, there’s almost a relief
sometimes.
K: Exactly. It’s like a water shed-event where they finally feel someone has put credence into what
they are saying and now has actually . . .
Dr. X: To the ones who’ve been doing it [searching for a diagnosis] for a long time, I’ll often say,
“You’ll feel ten percent better tomorrow.” Because they will. [The diagnosis is] just like this huge
load off their shoulders. Especially if they’ve been sent to a psychiatrist when they haven’t needed
one. Sometimes they do need one because they’ve been depressed or anxious, but… if they’ve
been told all their symptoms are in their head…. and you give them the diagnosis, they’re thankful
for the diagnosis. That’s correct.
Marian’s reaction to her diagnosis did not include thankfulness but her conduct as a
patient was replete with gratitude. Greenhalgh (2001) and others have described the role
of the “good” patient as complaint, obliging, deferential, self-effacing, and subordinate.
Marian was all these things but with a twist; her situation was complicated by diagnostic
delays which reinforced the status of her diagnosing doctor. She would not dream of
doubting his approach because he was the one, the first and the only, who legitimized her
suffering. She owed him a debt of gratitude and unfortunately it would cost her life.
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Finally, A Doctor Who Really Listens: The Bedside Manner of Dr. X
Dr. X’s understanding of diagnosis delays and the concomitant psychosomatic
attribution of symptoms that inevitably results, brought forth a bedside manner that was
very pleasing to his patients. Although the reactions to diagnosis among the women in
this study were similar – ranging from fear to relief – his patients were particularly vocal
about his bedside manner. They were appreciative that he listened, spent time with them,
and “believed” what they said. Other doctors who validated their experiences and did not
call them “crazy” were also celebrated, but in the case of Dr. X, the descriptions were
more effusive. For example, when Kitty was networking to find a new rheumatologist,
she turned to a friend and patient of Dr. X. Kitty retold her friend’s first encounter with
him: “… she said she loved him. That he’d spent four hours with her. He had listened to
her and what she’d said. He believed her. You know? He believed what she said and that
was really important because nobody else had believed her, and stuff like that….” Kitty
and Melanie described the attention he gave them:
He told me that he had good news and bad news. The good news was that he knew what I had.
The bad news was that it was lupus. (laughs) Then he gave me a pamphlet to read… he went back
and read some more of my records and then he came in and talked to me for another two hours.
Kitty
We had a four-hour appointment. I took all of my records and all of my labs. He diagnosed me
with central nervous system lupus that day… when I finally got to a doctor who had experience
with it was an easy diagnosis but I had seen countless physicians, including Emory physicians
who missed the diagnosis, and left me feeling like I was a little bit nuts. Melanie
Kitty’s and Melanie’s mention of time appears incidental but it is highly significant.
Talking with a patient, giving them attention for two to four hours is unusual given the
current priorities of biomedicine. The women appreciate Dr. X precisely because of the
time he spends with them. They understand the privilege of that attention. Time signals
respect. In the context of a clinical encounter, time is usually dictated by the needs of the
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doctor and his practice, not the needs of the patient. Dr. X provided unusual care in this
regard and understandably, the women liked it.
Part of Dr. X’s appeal was also that he took an interest in his patients’
surrounding circumstances. Kitty was encouraged to leave work, just like Marian. After
describing a “power struggle” at the office which was unlikely to be resolved amicably,
Kitty relates Dr. X’s advice:
[He] was like, “You’ve got to quit - you’re killing yourself. You’re making it worse. You know
your CNS is getting worse. Your everything is getting worse…” I just kept hoping - “Well, it’s
going to go in remission.” (laugh)… Dr. X has a positive attitude! (laughter) I remember that day.
He said, “Two years from now you’ll be slimmed down. You’ll be (laugh) feeling good. You
won’t have any problems.”
Dr. X’s interest in his patient’s ability to cope with lupus extended beyond the
physiological and into the social sequelae of the illness. He believed there was a
relationship between the two and the women seemed to agree with him. Like Marian,
Kitty and Melanie left their jobs and went on disability at his urging. They had all been
diagnosed with central nervous system lupus by him and they openly acknowledged that
their memory and cognition problems made it difficult to continue working. y The were
all also undergoing treatment with chlorambucil under Dr. X’s care, and this may have
contributed to their inability to function at work. Nevertheless, Dr. X’s willingness to
spend time, to listen to concerns, and to express a hopeful attitude, made his advice
appealing. He was in a position to persuade not only because of their disappointment with
previous doctors but also because of his amicable and interested bedside manner.
The Power of Persuasion: Discourses about Death in the Biomedical Encounter
When Marian began to cascade into bone marrow failure, Dr. X’s advice was to
undergo immunoablative Cytoxan treatments. When he met with her family, his
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justification for the treatment was to stave off death. He argued that she would not
survive without it. He had used the same logic when he introduced the idea to Marian
privately. Just as Marian felt the need to invoke the possibility of death with friends and
family who didn’t seem to take her condition seriously, Dr. X used death as a persuasive
device for treatment. Both knew that the threat of death would get their listener’s
attention. However Dr. X’s use of death framed the treatment decision on the worst case
scenario by creating an all-or-nothing dichotomy, a life versus death situation. Rarely is
the condition of a lupus patient so dire that it would require such a polarized
characterization. Organ involvement is a serious matter requiring biomedical
intervention, but decisions are replete with questions and uncertainties. Available
treatment modalities have serious side effects. Some would argue that the side effects in
many cases are worse than the disease. But choosing not to act is really more difficult.
Atul Gawande writes, “It is a reality of medicine that choosing not to do something – to
not order a test, to not give an antibiotic, to not take a patient to the operating room – is
far harder than choosing to do it.” (2002:235). For the physician it is easier to act; where
does that leave the patient in her decision making when she has been told that refusing to
act will hasten death? It essentially leaves her with no choice at all.
Death also figured into patient conversations with Dr. X concerning decisions
about which treatment strategy to pursue. Kitty was presented with such a decision about
going through chemotherapy with either Cytoxan or chlorambucil. Before starting the
treatment, she held out hope that she might be able to return to work. Since Kitty had quit
work and Melanie was refusing to, Dr. X introduced them to each other and they met for
lunch. Instead of focusing on the merits of quitting work, they compared experiences and
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discussed their treatment strategies. Melanie also had central nervous system lupus and
mentioned that she was receiving treatment with chlorambucil. Kitty was excited about it
because Melanie described it as her “miracle pill” and her reason for being able to
continue working.37 Kitty asked Dr. X whether she could try chlorambucil treatment. Dr.
X. agreed. Kitty described her decision and his characterization of it as follows:
But the real choice in taking Leukeran (chlorambucil) and taking it for the length of time that I’m
taking it, is that [it] has some real serious side effects. That’s what you start getting into with
Cytoxan and some of these other drugs. Then you start looking and you start balancing side effects
versus value. For me, the Leukeran really works great for the CNS (central nervous system lupus)
but it can cause myeloma, cancer of the bone [marrow]... and leukemia.
K: Wow.
I: Dr. X said I’ve chosen quality of life over quantity of life… it’s really clearly documented in my
file that I’ve made that choice because this protocol is very unconventional. And like Dr. W
wouldn’t do it. There’s only Dr. X [who is] willing to do it… not all doctors are willing to do it.
In our conversations about chlorambucil treatment, Marian did not focus on the
unconventional nature of the strategy. Instead she talked about how hopeful she was that
the chemotherapy would finally relieve her worsening symptoms. She was hopeful that
the quality of her life would improve. When Dr. X posed the question: “Wouldn’t you
rather have 20 good years than nothing at all?” Marian hoped for the best and agreed to
the treatment strategy in spite of the potential serious side effects. Like Kitty, Marian was
asked to make a choice about quality versus quantity of life. What no one could know
was that in her case, she was sacrificing both. When faced with the specter of death,
potential side effects, even terrible ones, paled in comparison. Dr. X’s death avoidance
discourse increased patient’s willingness to endure unconventional treatments with
adverse outcomes.
37
Melanie’s treatments with Cytoxan had ceased being effective. This is probably what prompted Dr. X to
begin treating her with chlorambucil.
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Fighting Lupus: Aggressive Treatment, Military Metaphors and the Flexible Immune
System
Dr. X’s reputation as a proponent of “aggressive” treatment was well known
among his patients and colleagues. The neurologist who referred Marian described him as
“aggressive” but able to help. I met women at support group meetings and LFA functions
who openly discussed Dr. X’s exceptional treatment style. Many of them considered it
not only justifiable but also preferable given the organ-threatening nature of the disease.
During the advocacy trip to Washington D.C., his patients joked that they needed an extra
suitcase to bring along all their medications. Joking aside, some of his patients were
concerned about how much medication they were taking. Darcy voiced her concerns in a
manner typical for Dr. X’s patients.
He’s just always been very, very helpful with the medications. Like that’s his job, but I mean…
very… “If this is what you need and if this helps you keep the lupus under control.” That’s our
goal is for me to be functioning the way I want to function... I had worked so hard to get through
nursing school. [I] wanted to have a career. [I] waited to time it to where my children wouldn’t
have to be in day care. I mean I had stayed home for ten years with them, and had this whole thing
planned out and then boom hit with the lupus. So he was very supportive of me getting to a state
where I could work, take care of the kids, keep up with life. He’s a little weird, but you either like
him or you don’t. He’s one of those doctors… I do like him and so I’ve stayed with him. I think
he’s very, very competent. It’s just scary sometimes to be on so many drugs. I’m on a lot of
medication, a whole lot of medication.
Darcy’s concerns about large quantities of medication were less important to her than the
ability to function. Her diagnosis of lupus came at a time in her life when she was getting
ready to focus on herself for a change. The lupus threatened her ability to achieve her
goals. Dr. X understood and encouraged her to pursue them, but in order to achieve them,
she would need to follow his advice. Her willingness to take “a lot of medication” was
based on her trust in him and her belief that treatment would make her feel better.
Dr. X was open with his patients about his aggressive treatment style. He
regarded it as appropriate and routinely mentioned it, especially when discussing
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chemotherapy. I asked him to explain how he deals with patients who may need to go
through chemotherapy but who do not readily agree.
K: Some of the women that I’ve interviewed, on the sicker end of the spectrum, have shared with
me concerns over going through chemo treatment. That it’s really a trade off. That they feel they
don’t really have a lot of alternatives when they’re so sick, and that they feel sicker after the
chemotherapy. How do you deal with women who need to go through the chemo and may be
reticent to do so?
Dr. X: We have to twist their arms in a nice way and you always have a family member [present].
I mean, unless the person has no friends whatsoever, I will almost never go through [describing]
chemotherapy [with them alone]... [instead] I’ll say, “I think you might need chemotherapy. I’m
pretty sure. Bring your husband with you next time, bring your mom, bring your dad...” So, it’s a
combined effort. That’s the way you do it… Then [I tell them] “I’m very aggressive. While I treat
[you] some oncologists [will] give you medications so that [you] don’t get sick (feel nauseous)
with the chemotherapy.” [In some cases] no matter what you do, they get sick. But most patients
don’t have that illness (feel nauseous) if you give them enough Zophran and Decadron or
whatever else you need to give.
The intent of my question was actually aimed at the long term side effects of
chemotherapy. When I interviewed Dr. X, Marian was in bone marrow failure and Kitty
had already died from complications of extreme bone marrow suppression. Nevertheless,
Dr. X’s answer is instructive. First, he acknowledges his aggressive approach to
chemotherapy. Second, he focuses on the immediate adverse effects of the treatment.
Getting “sick with the chemotherapy” might include side effects such as nausea and
vomiting. The medications he mentioned help to counteract such symptoms. Focusing on
immediate side effects makes tolerating treatment easier. But immediate side effects are
only part of the chemotherapy trade-off. Long term side effects, like those mentioned by
Kitty (above), are a serious concern for the chronically ill. Chemotherapy treatment does
not cure lupus. It suppresses immune activity temporarily.
The term “blast” used by Marian’s hematologist to describe the high-dose
chlorambucil treatment scared her. Doris was concerned about her doctor’s interest in
“blasting” her with high doses of prednisone. Having attended support group meetings,
she learned that prolonged use of high-dose steroids could lead to avascular necrosis and
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joint replacements. “One of the reasons why they had their replacements is because
they’d been taking so much prednisone. Now he wants to blast me with it, and I say, “Nothank you very much.” Doris does not have organ involvement so the choice for her is
somewhat simpler. Julie described the rationale for her switch from methotrexate to
Cytoxan as follows: “I had not been able to get below thirty milligrams of prednisone. I
was on all of this methotrexate and everything. Then, I had an enlarged heart in January.
That’s when Dr. X said “We’ve got to get out of the big guns. Obviously, methotrexate is
not doing it.”
Physician’s use of military terminology to describe chemotherapy treatment is
common. In The Lupus Book: A Guide for Patients and Their Families (1995), Wallace
includes a chapter entitled: “Big Guns and Magic Bullets: Disease Modifying Drugs.”
The chapter actually describes the serious and significant costs associated with
corticosteroid and chemotherapy treatments. Nonetheless, patients and families relate to
military metaphors especially when it comes to sickness. “Fighting” disease is one of the
most common ways to describe coping with illness. Disease is something that should be
fought. We don’t “live” with cancer, we “fight” it, we cut it out; we poison it; we
“eradicate” it.
Military terminology is part of the dialogue about lupus because it is rooted in
biomedical understanding of how the immune system functions. Martin (1994) traces
how biomedical notions of “fortification” and the “body as castle” shift from a focus on
keeping “germs and viruses” from penetrating the body to a fascination with what goes
on once the “walls of the castle” have been breeched. This understanding of the immune
system focuses not on protecting the body but on defending it from foreign invaders. The
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very basis for understanding the immune system becomes one of differentiating between
self and non-self. This notion is “often accompanied by a conception of the non-self
world as foreign and hostile” (Martin 1994:53). Even basic scientific language is replete
with military terms. For example, the killer cells, a type of T lymphocyte, are “’the
immune system’s special combat unit in the war against cancer. Killer cells ‘strike,’
‘attack,’ and ‘assault’” (Nilsson 1985, as quoted in Martin 1994:54). “‘The killer T cells
are relentless. Docking with infected cells, they shoot lethal proteins at the cell
membrane. Holes form where the protein molecules hit, and the cell, dying, leaks out its
insides’” (Jaroff 1988:59 as quoted by Martin 1994: 54). Autoimmunity is frequently
described as a problem with the immune system in which the body attacks itself. It has
also been described as the “immunological equivalent of civil war” (Root-Bernstein
1993:87 as quoted in Martin 1994:62).
Stein (1985) examines the emotional dimensions of physicians’ urge to practice
aggressively and the moralistic tone of clinical discourse. Acting aggressively is viewed
as morally justified when faced with a formidable adversary challenging your right to
live. In the same way, when health is threatened by disease, steps must be taken to stop it;
the stronger the adversary, the more powerful the needed response. Since the 1950’s and
the discovery of steroids, lupus has been a treatable chronic illness. In spite of this, lupus
is routinely described as a “devastating” disease in the popular press. In the scientific
literature terms such as “organ-threatening” are frequently used to describe organ
involvement. The fact that lupus affects important bodily organs like the brain, heart,
kidneys, and lungs increases the perception that it is dangerous and life-threatening. Yet
organ involvement is relatively rare for most women with lupus.
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The use of military terminology is dangerous for understanding lupus because it
buttresses aggressive action. Lupus is a chronic disease. It cannot be “fought” and
vanquished in the traditional sense. It is incurable. If lupus has to be “fought” then
“fighting” it should be viewed as a “cold war” and not a conflagration with a clear winner
and loser. The loser in war on lupus is the patient. At an NIH conference on autoimmune
disease in 2001, a prominent researcher remarked, “Treating NP-SLE (central nervous
system lupus) with Cytoxan is like doing brain surgery with an atomic bomb.” In Atlanta
in 2006 at an LFA event, a local rheumatologist echoed this sentiment by saying, “Using
chemotherapy to treat lupus patients is like trying to dig fence posts with a nuclear
bomb.” It is widely acknowledged that current treatment modalities that are considered
“disease modifying” have toxic side effects. When these interventions are metered out in
the treatment of acute disease, their toxic effects are short-lived. But for the chronically
ill, aggressive treatment hastens and heightens side effects precipitating outcomes which
can be grim.
Martin (1994) argues that our fascination and awe over the power of the immune
system, rests on its flexibility. An appreciation of this flexibility has led us to believe that
we can tinker with it and it will bounce back. Rheumatologists routinely refer to two
types of chemotherapy treatment with cytotoxic drugs: 1) “warm-reboot”; and 2) “cold
reboot.” Referring to the process of rebooting a computer, the warm-reboot involves
immune suppression to the point where the body teeters around immune failure but
spontaneously regenerates its immune function; and “cold-reboot” refers to complete
immune ablation followed by bone marrow transplant. This mechanistic understanding of
immune suppression persists, despite calls for a systems theory understanding of
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immunity (Martin 1994). Belief in the fundamental flexibility of the immune system has
led physicians, and especially rheumatologists, to use drugs and treatment strategies that
are not only toxic but constantly place individuals at the outer edges of health. Doing so
tests the flexibility of the most fundamental system governing the life of the human
organism. Perhaps when mechanistic computer talk is replaced by more organic
metaphors, a deeper appreciation for the limits of organic systems will result.
Inducing Remission: Practicing Acute Medicine on the Chronically Ill
Part of the logic of Dr. X’s aggressive treatment approach was to achieve
“remission” in his patients. This meant giving high enough doses to induce bone marrow
suppression which would in turn decrease immune activity. When done correctly, bone
marrow suppression lasts long enough for the patient to get a reprieve from symptoms –
hence the term “remission.” Using chemotherapy to achieve this end is standard practice
in treating lupus patients with kidney involvement. Jamie explained her doctor’s
reasoning as follows:
K: …did he tell you the reasons why he wanted you on chemotherapy?
I: Well, he told me that… if I started on the chemo and get it started now, I could go into
remission because it’s in an early stage… the lupus, the protein wasn’t damaging the kidney. But
by me retaining all that fluid I was getting to that point. So I was taking the water pills and chemo.
Slowly my legs started going down, and the fluid started coming out. That’s where I am now.
Taking the chemo.
It is also standard practice to treat central nervous system lupus with cytotoxic
medications. Kitty underwent Cytoxan treatment for nine months before being switched
to chlorambucil. She described Dr. X’s goal as “to put me into remission.” Julie also
talked about her treatment strategy in those terms. Although she did not have brain
involvement, as other organs became affected her treatment strategy was adjusted and
337
readjusted. Below is the continuation of the “big guns” passage above. In it she describes
how the treatment modalities changed until she finally reached “remission.”
…I had not been able to get below thirty milligrams of prednisone. I was on all of this
methotrexate and everything. Then, I had an enlarged heart in January. That’s when Dr. X said
“We’ve got to get out of the big guns. Obviously, methotrexate is not doing it.”… “We’ve got to
do something else. We’ve got to really stop this because this is serious.” …I didn’t think I was that
bad off, but my husband was really frightened. Later on he said “I didn’t think you’d be here by
June”… I had Cytoxan for five months in a row… He gives mega doses of Cytoxan. I started at
eighteen hundred milligrams and we went up to three thousand. But the fifth one really seem[ed]
to put things into remission.
The use of the term “remission” to describe temporary disease suppression is
problematic for lupus patients. It reinforces the idea that biomedical interventions can
control disease activity but it also minimizes the potential costs associated with such
treatment. The term “side effect” usually refers to the “adverse effects produced by a
drug, especially on a tissue or organ system other than the one sought to be benefited by
its administration” (Anderson 1988:1519). Side effects are indexed by the pharmaceutical
manufacturer through clinical drug trials based on patient feedback. Most effects that are
not a drug’s primary aim are considered of secondary importance. An important
exception to this definition is what Nichter (1989) calls the “negative primary effect.” In
the case of cytotoxic drugs, a negative primary effect occurs when immune suppression
progresses into immune failure. The primary purpose of chemotherapy treatment is to
suppress immune activity but if treatment continues too long and at doses higher than the
immune system can withstand, system failure results. The negative primary effects of the
drugs used to induce remission are much more than “side effects.” They are examples of
the power that pharmaceuticals hold to go further than suppressing immune function.
They can end it.
The term “remission” is also problematic because it is used to refer to periods of
disease inactivity whether drug-induced or not. Lupus symptoms are periodic. When
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symptoms increase most women describe those periods as “flares.” When they disappear
for longer periods of time, many women describe those episodes as “remission.”
Conflating the periodicity of lupus symptoms with drug-induced remission further dilutes
the serious physiological consequences of repeated and long-term steroid and cytotoxic
drug treatment. Use of “remission” to describe periods of time in which symptoms
decrease naturally is not equivalent to drug-induced remission. Women who experience
natural lulls in symptom activity are not as sick as women undergoing chemotherapy
treatment. Kitty discovered that her understanding of remission needed to be revised after
her symptoms continued in spite of prolonged chemotherapy treatment. As she put it:
It (Cytoxan) stopped working, what we call “breaking through” about my seventh round. So I
started having real symptoms again… they then sort of revised my diagnosis to chronic lupus. My
lupus [is] kind of just always there… if I stopped taking my medication, my lupus will be full
blown. It doesn’t go back into remission.
Melanie had been on so many rounds of Cytoxan and chlorambucil over the years that
she was not sure she even understood what remission meant.
K: Since the last round of chemotherapy, do you feel like now you’re getting better than before
you had it?
I: Mm-hm. Yeah. Oh yeah. Yeah, I think this course is probably, I don’t know if I’m in remission,
but I feel like I could be close to that. Whatever that means, because I don’t know. But, you know,
my problems now in general are a lot. They’re not involving any organs. They’re just more fatigue
and battle scars from all of this, you know, so.
Melanie’s “battle scars” resulted from the negative primary effects of the treatment she
received, including bone marrow suppression which required hospitalization, blood
transfusions and immune boosting treatments (intravenous immune globulin). Her “battle
scars” were not from the lupus but from the treatment she received. Women whose
disease activity involved major organs like Marian, Kitty, Melanie and Jamie represent
one end of the lupus spectrum. Their quest for “remission” involved disease modifying
treatments that could be highly destructive. Three months after Marian started the
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chlorambucil treatment she went into ovarian failure. Her menses did not return. In spite
of this she agreed to 2 months of high-dose treatment “to get me into remission.” Even
after five months of treatment, Marian did not go into remission. She went into bone
marrow failure.
In his book, Bittersweet: Diabetes, Insulin, and the Transformation of Illness
(2003), Chris Feudtner describes the consequences of medical advances in diabetes
treatment. With the advent of insulin, diabetes was transformed from an acute to a
chronic condition. The result was ‘bittersweet’ – people lived longer because of insulin
but they also suffered from nerve, eye and kidney damage. Feudtner demonstrates that
American faith in biomedicine and technology does not necessarily improve the lives of
the chronically ill. Instead, new problems are created by the treatment breakthroughs that
occur. In response to her own questions about the biomedical approach to treating lupus,
Doris wondered whether:
“…low, very low, doses of medicine taken for long periods of time can kill whatever it is that is
creating all the symptoms of lupus. [Maybe] that [is] the reason why you can never… you can’t
just blast it out… because it hides inside.”
The notion that biomedical interventions can induce “remission” gives women with lupus
a false sense of security and an unfounded willingness to endure serious adverse effects.
Feudtner (2003) argues that controlling the disease is not possible. He suggests a new
approach be taken by doctors and patients to understand the disease experience – one that
acknowledges and works to minimize the harmful effects that come with medical
interventions.
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Conclusion
“Medical care has more often than not compounded the suffering as a result of iatrogenic effects of
powerful but dangerous surgical and pharmacological treatments and of costly and at times equally
dangerous tests.”
—Arthur Kleinman et al. 1992, page 6
“In recent years, we in medicine have discovered how discouragingly often we turn out to do wrong by
patients. For one thing, where the knowledge of what the right thing to do exists, we still to frequently fail
to do it. Plain old mistakes of execution are not uncommon, and we have only begun to recognize the
systemic frailties, technological faults, and human inadequacies that cause them, let alone how to reduce
them.”
—Atul Gawande 2002, page 236
From antiquity practitioners of medicine have occupied a liminal space between
life and death. Drawing on symbolic and empirical methods to diagnose and treat illness,
they intercede on an individual’s behalf to reverse misfortune and disease. They are
mediators of benevolence and malevolence, good and evil, virtue and immorality, purity
and contagion. It is perhaps not surprising that the individuals called upon to arbitrate
such a vulnerable human condition were and still are ascribed great power. This power is
based not only on causality beliefs (personalistic, naturalistic) (Foster 1976) but also on
demonstrations of power through the use of therapeutic interventions. Regardless of
disease etiology, effective interventions evidence the power of the curers and their
medicine. Historically these therapies were magico-religious or pharmacologic in nature,
but it was commonly understood that healers possessed great knowledge about how to
cure but also about how to kill. The word pharmakos in Greek means both remedy and
poison (Porter 1997). In the anthropological literature there are ample examples of the
power to cure and to harm among healers. Those in possession of this knowledge have
the power of life and death in their hands. The vulnerability of patients to unscrupulous
practitioners of medicine was clear from the beginning of the profession. The Hippocratic
oath stands out as the prime example of biomedicine’s priority to first “do no harm.”
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Although the practice of medicine and the treatments available to its practitioners have
advanced significantly since the time of Hippocrates, its basis premise remains
unchanged.
The standard approach to diagnosis and therapy has been thoroughly inculcated in
the practitioners of biomedicine. However, chronic disease challenges the limits of this
approach. The etiology of lupus is unknown, its diagnosis uncertain, and its treatment
inferential. Yet physicians are called upon to lessen pain and relieve suffering. The
treatment modalities that are currently available have serious costs associated with them.
The patients’ quest for diagnosis, particularly if it lasts for years, often results in such
gratitude for that one moment of certainty that they surrender themselves completely to
the dictates of uncertain but well-meaning physicians. Under these conditions of
uncertainty and armed with medicaments powerful enough to drive flexible systems into
failure, the confluence of social and biomedical forces can precipitate ill-fated alchemy in
women with lupus.
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Table 6.1 – Chronology of Marian’s Medical History
1990
9/98-1/99
8/98
10/98
12/99
2/99
4/99
6/99
7/99
8/99
11/99
2/2000
3/00
5/00
6/00
9/00
10/00
1/2001
4/01
5/01
6/01
7/01
8/01
9/01
Hypothyroidism diagnosed
Seven physicians seen prior to diagnosis
First lupus flare, coincides with trade show
Positive ANA indicative of an autoimmune disorder
Starts searching the internet and reading books on autoimmune diseases including lupus
Switches to PPO plan with insurance carrier
Dr. X diagnoses SLE, cutaneous vasculitis, plus Sjögren’s and Raynaud’s syndromes
Dr. X diagnoses neuro-psychiatric SLE (NP-SLE) diagnosis
Two-month sick leave ends
Hospitalized with azathioprine induced “drug fever”
Flu-like plus neuro-psychiatric symptoms persist
Dr. X proposes chlorambucil treatment
Chlorambucil treatment starts
Ovarian failure due to chlorambucil treatment
Permanently leaves work with disability pay
Reports increasing cognitive decline during March and April
Increasing hypothyroidism
Severe “cushingnoid” appearance caused by prednisone; 44-pound weight gain since 11/99
Chlorambucil dosages discontinued due to low platelet counts (87,000)
Reports increase in symptoms; weight gain (20 more pounds); increasing hypothyroidism
Punctal plugs in eyes inserted (10/6/00) to decrease Sjogren’s symptoms
Dr. X asks Dr. Y (hematologist) to monitor “blast” (high-dose) chlorambucil therapy for
two-months
Diagnosed with respiratory infection requiring antibiotic treatment
Chlorambucil treatment discontinued; Dr. Y “no longer comfortable” due to three additional
months without symptom decreases
Hospitalized with lupus pneumonitis (4/20/01) (diagnosis will later be changed to
pneumonia)
Dr. Z (rheumatologist) suspects chlorambucil-induced bone marrow suppression (4/20/01)
Dr. X confers with Dr. Y on 4/2 about immunoablative therapy (bone marrow suppression)
with Cytoxan
Plasmapheresis treatment
Develops prednisone-induced diabetes and cataracts
Dr. Y continues to administer platelet and blood transfusions to elevate blood counts
Johns Hopkins declines trial admission; receives platelet transfusion in Baltimore
Hospitalized (6/18-7/16) with pneumocystis carinii pneumonia
Receives two months of in-home care
Dr. X recommends immunoablative Cytoxan treatments;
Attending oncologist and rheumatologist at Gwinnett Medical advise against Cytoxan
treatment
Family members meet with Dr. X
Cytoxan treatment refused
Switches to Dr. Z (rheumatologist) as primary physician
Prednisone dosage lowered from 160 mg/day to 40 mg/day
Oncologist estimates that bone marrow recovery from high-dose chlorambucil toxicity could
take 1 year
Bilateral avascular necrosis of hips diagnosed (prednisone induced)
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10/01
11/01
1/2002
2/02
3/02
4/02
5/02
7/02
8/02
9/9/2002
Starts intravenous immune globulin (IVIG) to improve immune status
Decreasing blood counts raise concerns
Starts biweekly blood transfusions to improve blood counts for two months
Hospitalized and diagnosed with chlorambucil-induced leukemia (bone marrow failure)
Platelet levels crash (mid-teens) requiring blood transfusion in ER
Decision made to undergo allogenic bone marrow transplant
Bone marrow transplant begins
Hospitalized with graft versus host disease (GVHD); treated with steroids
Diagnosed with prednisone resistant GVHD and enrolled in clinical trial
Diagnosed with viral and fungal infections
Kidney failure begins
Refuses dialysis
Liver failure and coma begins
Death
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Graph 6.1 – Platelet Count Levels from February 1999 through April 2002
1 = 8-25-99: Chlorambucil treatment starts
2 = 11-8-00: Chlorambucil “blast therapy” starts
3 = 4-3-01: Blast therapy stopped; chlorambucil
treatment discontinued
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Graph 6.2 – Sedimentation Rate Levels from October 1998 through March 2002
346
Graph 6.3 – White Blood Cell (WBC) Count from February 1999 through April 2002
347
Graph 6.4 – Red Blood Cell (RBC) Count from October 2000 through April 2002
348
Graph 6.5 – Hemaglobin Levels (gm/dl) from February 1999 through April 2002
349
Graph 6.6 – Hematocrit Levels from February 1999 through April 2002
350
Conclusion
“The study of chronic illness challenges medical anthropology to further examine the relationship between
suffering, ambivalence, ambiguity, and struggle for life.”
— Els van Dongen and Ria Reis 2001, page 293
“The existential meaning of living with a chronic illness enables a view of the chronically ill not so much
as people who are ‘sick’ as people who are capable of reconstituting themselves.”
—Els van Dongen and Ria Reis 2001, p. 296
This research raises fundamental questions about biomedicine and its
paradigmatic roots. The lens of systemic lupus erythematosus was used to peer into the
realm of biomedicine and critically examine its power to diagnose and treat chronic
illness. The analysis reveals not only the inadequacies of the acute model of disease in
diagnosing illness but also the dangerous sequelae of its treatment strategies. By focusing
on the topic of diagnosis delay, this research explored the challenges faced by patients in
search of diagnosis, the impact of the diagnostic event, and the implications of living with
chronic illness. Although diagnostic delays were frustrating and at times overwhelming
for the women, ironically they prepared the ground for significant growth in individual
and collective knowledge about the practice of biomedicine. Most of the women began
their diagnostic odyssey by placing themselves willingly into the hands of biomedical
practitioners. They surrendered their knowledge of subjective experience to scrutiny and
evaluation in the hope that by doing this, their problems would be solved. Instead their
suffering was exacerbated by the basic assumptions and priorities of the system in which
they took refuge. Out of these experiences grew insight and understanding which forged
resistance to passive receipt of knowledge and spurred desire to seek answers
independently. The ambiguity of the diagnostic process presaged the persistent
uncertainty of living with chronic illness. Treatment strategies lessened physiological
351
symptoms but it was the women themselves who transformed suffering into the dignity of
simply living life.
Diagnosis delays offered the women ample opportunities for learning about
biomedicine and its priorities. The biomedical preoccupation with objective testing led to
unnecessary diagnostic delays and increased suffering for many women in this study.
During the diagnostic odyssey, the women were frequently disrespected by biomedical
practitioners by being told that their subjective experiences were psychosomatic. These
women experienced symptoms which were less severe or did not involve major organs.
Due to the overlapping nature of lupus symptoms and the likelihood that laboratory tests
would not support a definitive diagnosis, many of these women waited years to receive a
diagnosis that validated their lived bodily experience. During the intervening years, many
began to question not only their sanity but also the veracity of sensory experience.
Systematic disregard of subjectivity invalidated lived bodily experience, prompted
notions of psychological deficiency and reinforced feelings of inadequacy and self-doubt.
Some women delayed seeking care based on previous interactions with physicians and
their acquired knowledge of biomedicine and its requirements. The priority placed on
objective measures of illness caused some women to anticipate the denial of subjective
experience and therefore postpone health seeking behavior.
Diagnosis delays were also exacerbated by the structure of biomedicine. The
compartmentalization of the human body into subspecialties deconstructed the wholeness
of the lived experience of illness and complicated not only the diagnosis of lupus but also
its treatment. Conflicting views on illness etiology led to differing views on treatment
strategies. Although diagnosis was a legitimizing experience, its beneficial impact was
352
short-lived. The periodicity of lupus symptoms coupled with the priorities of biomedicine
extended the diagnostic odyssey into a post-diagnosis phase. In this phase physicians
employed the same inferential laboratory tests to differentiate flares in lupus symptoms
from symptoms of other diseases. The women reacted unfavorably to the biomedical
tendency to objectify subjective experience since many of them believed they could
differentiate between flares and other symptoms of illness. Post-diagnosis testing raised
the same concerns about the validity of subjective experience as pre-diagnosis testing.
These concerns were exacerbated by the failure of test results to support subjective
experience due to temporal delays in pathophysiology. Unless symptoms co-occurred
with pathophysiological evidence of disease in the blood, test results were negative. The
dis-synchronous nature of test results especially among women with less severe cases of
lupus prolonged their suffering.
The major findings related to the diagnostic odyssey were: 1) diagnosis delays
were longer for women with invisible and/or less severe symptoms or no organ
involvement; 2) diagnosis delays were exacerbated by biomedical subspecialization;
diagnosis delays comprise three periods – pre-diagnosis, preliminary diagnosis, and
definitive diagnosis – and the length of time in each period is related to disease severity
(which determines the visibility and/or measurability of symptoms). Diagnosis delays
were characterized by physician disregard of subjective experience; psychosomatic
diagnoses and feelings of “craziness”; patient self-doubt and questioning of sensory
experience; delayed care seeking due to biomedical mind-body dualism; doctor
displeasure with self-research and/or self-diagnosis behaviors. Diagnosis delays were
exacerbated by physician reliance on objective (visible) measures of disease (lab testing).
353
This approach: 1) objectified subjective experience which leaves patient feeling
demeaned and confused about self-understanding of lived bodily experience; and 2)
disregarded the dis-synchronous nature of test results (temporal dissonance between the
experience of illness and laboratory evidence of physiological imbalance (disease)).
Diagnosis is a legitimizing event but its effects are short-lived due to biomedical
priorities. Post-diagnostic testing (to legitimize symptom flares) raised the same concerns
about objectifying subjective experience (differentiating lupus flares from other illness
symptoms). Diagnosis delays taught lessons about biomedicine that facilitated long-term
coping with chronic illness. These lessons included: the realization that “doctor’s don’t
know everything”; the utility of self initiated research and education about lupus; the
actualization of trusting subjective experience regardless of doctor disregard or test
results; and the implementation of self-management strategies to cope with illness
symptoms.
Pain was a ubiquitous feature of the lupus experience both before and after
diagnosis. Reckoning pain through the use of words and language rather than
verbalizations or behavioral cues established the existence of pain and the extent of the
suffering associated with it. Narrated pain was accessible to others and facilitated
interpersonal understanding of subjective experience. The commonly held notion that
pain should and can be tolerated normalized the pain experience and made it a part of
everyday life. Emotional responses to chronic pain decreased due to a gradual desensitization process. Comparing current and past experience gave the women the benefit
of hindsight and enabled them to qualify pain in the present. Over time this comparative
354
process increased pain tolerance by resetting and redefining normal. The bodily wisdom
resulting from accumulated knowledge normalized pain experience, increased pain
tolerance and decreased the uncertainty associated with living with a chronic illness.
Major findings related to pain experience were: 1) chronicity of illness created the
notion that pain should and can be tolerated; 2) emotional responses to pain decreased
over time; 3) comparing pain experiences over time – qualified current pain experience
and increased pain tolerance by resetting/redefining what is “normal.” The accumulation
of the knowledge of pain over time resulted in normalized pain experience and increased
pain tolerance. This decreased the uncertainty usually associated with living with a
chronic illness.
Diagnosis delays called into question the fundamental power of biomedicine to
diagnose, treat, and cure disease. Once the symbolic core of biomedical meaning was
challenged, alternatives to the acute model of illness were actively sought. Getting a
diagnosis was the beginning of larger interpretive work about self and the meaning of
chronic illness. Feelings of social isolation also contributed to the women’s need to reach
out to similar others. For the women in this study, this search for meaning was pursued at
support group meetings with other like minded women. Support group participants
occupied a variety of epistemological positions. These ways of knowing rested on
individual experience born out of the crucible of diagnosis delay. Quests for knowledge
were rooted in subjective experience and cultivated through the collective process of
female friendship. This process created understanding through empathy and perpetuated a
shared sense of community essential to support group functioning. By participating in
support groups, the women’s social circles expanded and the socially deconstructive
355
impact of chronic illness was lessened. The acquisition of knowledge (informational
support) lessened uncertainty about immediate and potential illness experience which in
turn decreased anxiety and facilitated coping. Emotional support based on mutual
understanding counteracted feelings of social isolation with feelings of social
connectedness. Instrumental support rooted in meaningful personal relationships
increased the benefit of support group participation by enhancing the effect of
informational and emotional support.
The benefits of participation were not limited to improvements in social support.
With friendship as the basis of group process, new ways of understanding self and other
became possible. The process of connected knowing transformed concepts of self and
transitioned participants into new epistemological ways of knowing and being in the
world. Elements of this new found perspective were respect for subjective experience and
skepticism of absolute biomedical authority. The women engaged in the support group
process used empathy to disarm disagreement and to construct shared understanding of
the meaning and methods of living with chronic illness.
The major findings related to support group participation were: 1) diagnostic
delays prompted women to search for knowledge and understanding about living with
chronic illness; 2) in the support group setting, quests for knowledge were rooted in
subjective experience but grew through collective experience (the women learned from
each other); 3) the women at support group meetings occupied various epistemological
positions or “ways of knowing.” These positions shifted over time due to the collective
group process; 4) the process and functioning of support groups was based on “honest but
agreeable” talk, empathetic group process, and female friendship; 5) the types of support
356
gained were informational, emotional and instrumental; and 6) support was initiated
inside but went beyond meeting boundaries due to the extension of the women’s social
circle based on friendships grounded in meeting attendance.
In her book, Under the Medical Gaze: Facts and Fictions of Chronic Pain, Susan
Greenhalgh (2001) presents a cautionary tale about the power of “objective” science and
the dangers of biomedical treatment of chronic illness. Marian’s story provided a glimpse
into one end of the treatment spectrum for women with lupus. The trust that Marian
placed in her doctor was critically important in the circumstances leading to her death.
Due to diagnosis delays and attributions of psychosomatic illness, by the time Marian
was diagnosed she was primed to become a “grateful’ patient. The diagnosis not only
legitimized her subjective experiences but restored her faith in biomedical power.
Marian’s renewed faith coupled with her gratitude, led her to surrender herself almost
completely to the dictates of her physician and his pharmaceutical arsenal. Despite
Marian’s support group savvy, her empowered demands for care were addressed through
an unorthodox treatment strategy. It was argued that belief in the fundamental flexibility
of the human organism has led physicians and especially rheumatologists to use drugs
and treatment strategies that are not only toxic but place women at the outer edges of
health. It was further argued that treatment with “powerful” medicine may be effective in
treating infectious disease and traumatic injury but may pose significant dangers to the
chronically ill due to the long-term side effects of pharmaceutical treatment strategies.
Since from a biomedical perspective, chronic illness is viewed as a failure of either
prevention or treatment efforts – the research contends that a new concept of chronic
357
illness is needed; one that equates dignity with disease and disability rather than suffering
and despair.
Marian’s story highlights the problematic consequences of: 1) the biomedical
belief in the fundamental flexibility of the human organism and immune system (which
supports the use of highly toxic and potentially life threatening pharmaceutical drugs in
the treatment of lupus); and 2) the acute/curative disease model (which supports
aggressive intervention strategies that may not be suited for treating lupus and/or other
chronic illnesses). Evidence is also presented about how diagnosis delays may contribute
to “Grateful Patient Syndrome.” This situation may result from a confluence of
circumstances including: isolation/alienation from family and friends and self-doubt
about living bodily experience (due to biomedical and/or social attributions of
psychosomatic illness) preceding diagnosis; definitive diagnosis which strengthens
biomedical and physician power at the time of diagnosis; diagnosis of organ threatening
disease which justifies aggressive biomedical intervention; an “empowered” patient who
demands biomedical treatment through determined insistence and resolve; an aggressive
treatment strategy in which treatment side effects co-mingle with disease symptoms
making it impossible to determine the etiology of illness symptoms. In Marian’s case
these factors reinforced dependence on her physician and accelerated a devastating
cascade of events leading to death.
Major Research Findings
The overarching conclusions of this research study were:
1) Biomedicine’s paradigmatic roots in curing infectious disease (acute disease
model) may be ill suited for diagnosing and treating chronic illness.
358
2) Biomedical preoccupation with objective testing measures may lead to
unnecessary diagnostic delays which increase and extend patient suffering.
3) Mind-Body Dualism (Cartesian Thinking) has serious adverse implications for the
chronically ill including unnecessary psychosomatic diagnoses (hypochondria,
depression) and outright disregard of subjective experience which may lead to
patient distrust of physicians and patient self-doubt (of lived bodily experience).
4) Biomedical specialization and compartmentalization of the body (treatment of
disease by body part) complicates diagnosis and treatment of chronic illness.
5) Diagnostic odyssey encompasses pre-diagnosis, diagnostic event, and postdiagnosis phases. Although diagnosis offers relief, the periodicity of lupus
symptoms coupled with biomedical reliance on objective testing reinitiates
diagnostic uncertainty.
6) Chronic pain poses significant challenges to those affected by it, ironically, its
very chronicity may be the key to unlocking how the chronically ill cope with
pain.
7) Treatment with “powerful” medicine is effective in treating infectious disease and
traumatic injury but poses significant dangers to the chronically ill due to
pharmaceutical side effects and toxic treatment regimens.
8) Chronic illness and chronic disease is viewed as biomedical failure of either
prevention or treatment efforts. The concept of quality living with
disease/disability needs to be adopted and championed by physicians and patients.
359
Future Areas of Research
This research was a cross-sectional retrospective study of the diagnostic odyssey.
Future research should include longitudinal (prospective) study of the periods before
diagnosis, between preliminary and definitive diagnosis, and after diagnosis. By
comparing the experiences of women in these three categories, a more temporal specific
picture will emerge with regard to diagnosis meaning, understandings of self and lived
bodily experience, doctor-patient relationship, sources and extent of social support (i.e.
family, friends, and other sources of support), and coping strategies for living with
chronic illness.
Although the women’s narratives provide powerful insight into their perception of
doctor-patient interaction, additional research needs to be done on doctor-patient
communication. This research should examine the actual language used by the doctor and
patient during the clinical encounter to discuss: 1) subjective illness symptoms and
objective measures of disease; 2) laboratory testing (i.e. understanding of lab tests as
confirmatory and/or inferential); and 3) treatment strategies, specific modalities, and their
adverse effects. Patient understanding of this communication and its effects on patient
perceptions of self, subjective illness experience and biomedicine should also be
examined.
Grateful Patient Syndrome needs to be further studied in relation to degree of
doctor patient-trust, patient empowerment, length of time to diagnosis and disease
severity. It should also be examined with regard to biomedical notions of compliance
with treatment regimens, cooperative doctor-patient relationships, and patient
empowerment (self-research). Additional research needs to be done on doctor-patient
360
communication and patient empowerment examining and comparing doctor attitudes
towards patients who engage in self-research and self-diagnosis behaviors; doctor
entrenchment in the biomedical model based on understandings of subjective illness
experience vs. objective measures of disease and understandings of laboratory testing (i.e.
the function of lab tests as confirmatory or and/or inferential); and the degree of doctorpatient trust.
Longitudinal studies of pain experience examining and comparing language and
visual depictions of pain, pain tolerance and pain normalization need to be conducted.
This research should examine how these issues relate to: doctor-patient relationship and
communication; sources and extent of social support; and coping strategies for living
with chronic illness.
Finally, cross-sectional studies should be conducted which examine doctor
attitudes towards support groups in relation to their sources of information (i.e. patients,
fellow doctors, others); personal support group experience; degree of entrenchment in the
biomedical model; openness to cooperative doctor-patient relationships; personal
communication style (authoritarian vs. cooperative); and gender issues (attitudes, patterns
of speech (interruptions), power sharing tendencies, etc.).
361
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Dissertation - Emory University

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