Chapter 1: Introduction
Typically, the immune system can discern between “self” and “not self” and attacks only those tissues that it recognizes as “not self”. This is frequently the preferred reaction, but not always. Autoimmune disorders are diseases produced by the body making an inappropriate immune reaction hostile to its own tissues (American Association for Clinical Chemistry 2009). The immune system will stop identifying one or more of the body's normal parts as “self” and will create ‘autoantibodies', which attack its own cells and systems. Systematic Lupus Erythematosus is an inflammatory autoimmune disease of unspecified etiology, and is characterized by a broad variety of symptoms (Herrmann, Voll & Kalden 2000, Rudich & Zerman et.al. 2008, Olowu 2007, Hansen, Heipe, & Dorner 2007). Lupus can be triggered by numerous means and can present itself in a bewildering number of ways, even to the extent of mimicking other diseases such as rheumatoid arthritis or multiple sclerosis. Although Lupus affects many organs some of the more common symptoms are extreme fatigue, joint pain, the destruction of vital organs, as well as muscle aches (The Lupus Site 2009). Symptoms of Lupus can appear and wane with time, and they vary from person to person; symptoms of Lupus can intensify with flare-ups, but these can also clear up. Flare-ups may be triggered by changes in the patient's health status, such as physical or emotional stressors and/or by outside stimulants.
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Lupus is not a commonly discussed disease, although it has been said that it is more common than leukemia, muscular dystrophy, and multiple sclerosis. It is estimated that 30,000-50,000 people in the United Kingdom have Lupus, of which 90% of its sufferers are female (Lupus UK 2005). Based on fieldwork, Internet postings, and published papers on uncertain diseases, this paper examines ways in which sufferers attempt to gain diagnoses.
I turn to the collective online action, where users grapple with the systemic nature of health care denial; they discuss health care, and use these discussions to create tactics that the weak can use in response to the domination of the medical system. However, because of the pervasiveness and uncertainty of the illness, the biomedical facts are susceptible to being framed and reframed by participants in these discussions. Lupus characterized by great uncertainty regarding etiology, diagnosis and treatment; it is an emergent disease, in that it is researched in the medical community, discussed and reported on occasionally, however it is not settled upon in regards to diagnosis. There are many structural characteristics of Lupus, and these should be taken into account, as they play major roles in online discussions and methods of coping with the disease.
First, Systemic Lupus Erythmatosus is a chronic condition, and shares with other chronic conditions, the inability of fitting into acute disease models of treatment, the sick role, and health care. Second, Lupus is a biological condition that is fraught with mental characteristics; and due to this it is often misdiagnosed as a mental condition. This is added onto the fact that the onset of lupus is contested as to social, genetic, or toxic determination; exactly what causes the onset of the disease is unknown. Lupus is therapeutically diverse, how people treat their condition and what therapies that are used are varied. There are common drugs that are prescribed once diagnosed, including a batch of steroids, however alternative medication is wide open. Lupus is a disease that is characterized by fuzzy boundaries and is cross-linked to other illnesses and ailments as mistaken diagnosis. And finally Lupus can be legally volatile; conditions can be caught up in legal battles and extended administrative cataloging. When seeking disability status, it can be applied at a whim; it is a highly contested status, as the disease is an ‘invisible disease'. A recently diagnosed patient best summarizes the structural conditions listed above:
"I was recently diagnosed with lupus, I sometimes wonder why the doctors couldn't have found it before now. It has been 3 years since my first symptoms. I knew that something was not right. I was misdiagnosed with several ailments and was beginning to think it was all in my head or that i was making it up. It's funny how you even start to doubt yourself. But something told me to keep digging keep insisting that something has to be wrong. I feel so much better now that I know what it is I am facing. It is the unknown that is scary.”
Always on Time
Marked to Standard
Many lupus patients often say they feel like hypochondriacs when visiting their doctor because of all the minor symptoms that they want to report. It can be a long, hard road to get a diagnosis and it's easy to want to give up. Sometimes, even their families begin to question whether there is anything really wrong. Diagnosis is one of the few ways that sufferers feel that they can gain legitimacy in the eyes of society, a way in which they can adapt the sick role with a solid backing to it. Fitting into society and the place that Lupus sufferers have within society often leads to a reflexive theorizing about society, which will be touched on later in the paper. As with many emergent, contested illnesses, the social problem is the apparently intractable uncertainty at each turn. There are always too many facts, too many symptoms to list, and not enough research done. The fight to get diagnosed thus depends disproportionately on the small amount of research and publicity of the disease; and many sufferers feel that they are systematically excluded from the medical system. Beck has shown how living in modern society necessitates the need to have a ‘do it yourself' attitude. The collective accounts of experiences with doctors online allow for a creation of a tool-kit to battle against the constant denial of the sick-role. In the remainder of this paper, I will use the online forums among sufferers to examine what they have learned in order to live and talk strategically in the medical system, in society, and in the family setting that constantly denies them their illness, and the tactics that are used.
Chapter 2: Methods
This chapter is dedicated to discussing the methods used to create the transcripts that shaped the foundation for the analysis of lupus sufferers' fight for recognition and methods of dealing with the denial of the sick role. In particular, this chapter will address the outline for the preparation of the interviews, how the targets were reached, and the ethical issues that were met. I will also explain the procedural reasons behind using the online forums and questionnaires as the underpinning of the study, as well as the limitations that these sources provided.
The use of critical ethnography for this project was key in building a better understanding of illness as a social and biological fact. Systematic Lupus Erythematosus is an illness that is beset with medical and social stigma, an illness that is surrounded by uncertainty, and is often referred to as an ‘invisible disease'; which is discussed in the following chapters. The main aim of research was to look at how sufferers were speaking about their experiences with Systematic Lupus Erythematosus and how they were discussing their problems and tactics together in a public forum. In order to address this, the primary data used are in-depth interviews conducted with Lupus sufferers, their family members, and various use of online discussion groups. I turned to online action in order to follow how the extremely systemic character of medical denial can be archived, argued and used to create tactics against this very denial. The postings in the forums are public commentary with no access restrictions and are often personal stories about struggling with getting diagnosed. The bulk of the data for this project came from postings such as this, and was spread between three main thread topics ‘Living with Lupus', ‘Not Diagnosed Yet?' and ‘Symptoms', as there are over 53,000 views and 9000 postings. Use of these online sources opened up the amount of people I could reach in regards to my research.
Data for this project was collected between the months of April 2009 and August 2009, from life history interviews, online questionnaires, online discussion groups, as well as participant observation from support group meetings. There was no attempt at contacting people individually in order to participate in these studies, however the online community was given the opportunity to contact me if they wished to participate in the study. Preparation for the interviews was undertaken through browsing the online forums and analyzing which topics were appearing the most in postings. From the topics that appeared the most through out the threads I created a thesaurus of common terms, this thesaurus was used to code the conversations that were held on the threads. As well as examining through the threads I undertook large readings of scientific journals on the subject of Lupus. This was done in order to gain background knowledge on the subject, to gain useful guides prior to further research, and to access data that already exists from past research on Lupus. Attention was paid to the quality and validity of source materials by using various documents published by different agencies. Internet data such as Google Scholar, JSTOR, PubMed, and Academic Search Complete provided me with a broad search area to get a variety of Lupus documents published. Special care was also taken into looking at the research that sufferers were posting on the Lupus website, of which there were only 72 posts available on the UK Lupus website. Reading these documents, analyzing the online postings, and taking care to note what the responses were to these online posts formatted the basis for all interview questions.
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Fieldwork was cultivated through contact with the administrator of a UK based Lupus support website. It was through this medium that I garnered permission to post a description of my research; which allowed me to answer questions surrounding the use of my research, and on the content of my research. The majority of my informants were Lupus sufferers, although a few participants were the family members of those diagnosed with Lupus. Those that were included in the response had all been diagnosed with Lupus, although there was a large community of online users that were in contact that had symptoms of the disease, but yet were not diagnosed. People that were included in the project were all ones that had been formally diagnosed with Lupus or their family members, this was not a de-legitimization of those who were not formally diagnosed, but those that volunteered their life histories and answers were those that had been formally diagnosed. The interviews were set up after contacting a large database of lupus sufferers, which were followed up with postings on the online forum. Interviews ranged from one to three hours long, which were followed up upon with the individuals at later dates. Following the interviews with Lupus sufferers, I formulated an online questionnaire that people could fill out anonymously, this method allowed me to include those that didn't want to participate in interviews, but still wished to express their views on the research topic.
Questions that were posted online were broad open-ended questions, which were used with the intentions of getting respondents to give a greater account of their experiences and problems. This online questionnaire was posted by my research proposal, on the online forum, as well as circulated via email to various Lupus sufferers.
Regular users and intermediate users of the site all had access to my research proposal, which got over 600 reads after posting. By posting up my research proposal I allowed for the participants of the study to know exactly what I was research, and how I wanted to achieve these goals. It also allowed them to submit questions and general inquiries, this feedback that I received from informants have been fed back into my research and developed the findings presented here.
Having already touched very briefly the ethical concerns earlier, it would seem practical to address them at this point. Dealing with data that concerns individuals' lives means that granting anonymity to the identity of the individual and anyone else they may mention is a chief concern. Permission for my research was given by the UK Lupus website administrator, and although this permission was given formally I also the aims and objectives of my research accessible and clear by posting my proposal for viewing prior to participation in the research project. Individuals also gave their sanction prior to interviewing and were made aware of the right to withdraw their contribution at any stage. Transcripts of the interviews have been made for my own use but to protect the identity of the participants the pseudonyms they used online were kept. Anything that the participants wanted to withdraw in hindsight was also taken into account. For the postings in the three above-mentioned threads no consent was taken, as all contributors use pseudonyms. The use of pseudonyms at times can be a drawback in the research, as these give no indication of their social status, their sex, or their age.
Chapter 3: Literature Review:
“Truth is to be understood as a system of ordered procedures for the production, regulation, distribution, circulation, and operation of statements.” Michael Foucault
The foundations of medical anthropology are numerous, but some of the most influential sources are the physical anthropologist's research in evolution, adaptation and other spheres, the ethnographic curiosity in witchcraft and magic, the partnership of anthropologists and psychologists during the wartime period, and finally the international public health movement that occurred after World War II (Foster & Anderson 1978). Following from World War II, the study of ‘popular and modern medicine' became an important area of research, with comparisons between modern biomedicine used in the western world and the ethno-medicine beginning to dominate the medical anthropology sphere (Bendix 1967, Foster & Anderson 1978, Press 1978, & Simmons 1955). History, time, and processes within societies have often been combined into one overarching category; however writings from Evans-Pritchard have drawn attention to the unity of anthropology and history when discussing social orders, and these social orders cannot be analyzed without knowledge concerning its ‘internal dynamics' (Comaroff & Comaroff 1992). Put simply all societies are involved in processes with multiple components, elements which create a social environment, and these components engage human actors and different agencies in a dialectical relationship (Comaroff & Comaroff 1992). Ethno-medicine and disease etiologies acknowledge and incorporate input from various sources, including “economic, familial, ritual, moral and other institutional sectors” (Press 1978:71), whereas the modern (biomedicine) can be seen as a “closed system, ‘based on precisely defined knowledge, technique and procedures, all of which are discontinuous from ordinary social process'”(Press 1978:71).
“Human life cannot be studied without taking into account both how individuals are situated within and constrained by social structures and how those individuals construct an understanding of and impose meaning on the world around them” (Dressler 2001:455). Explanatory models of illness (EM) are a set of beliefs which provide people with ways of thinking about modes of and models for reality, they create order and meaning; this set of beliefs is constructed not by a culture, but by individuals (Young 1982). Sickness can be seen as a process through which disease is given socially identifiable meanings (Crandon 1983, Young 1982, Foulks 1978).
The way in which people describe their social world through medicine is a reflection of political and economic realities of the time; it shows the meaning of ethnic relations (Crandon 1986). Cultural identity can affect directly the type of illness believed to have (Crandon 1983 [B], Last 1990, Press 1978, Simmons 1955 and others), and thus affects the type of treatment that people are seeking. The medicinal system utilized can become a cultural domain from which people negotiate their identity, “medical ideology is a particularly powerful instrument through which certain kinds of negotiation take place; specifically those pertaining to cultural identity, how people define themselves and others and their own relationships to others” (Crandon 1983 [A]:79).
There are three main ways that someone seeks treatment: “self-treatment, treatment by a curer, or treatment by medical doctors” (Reeve 2000:102), and these choices are made based upon the gravity of the illness as well as the type of treatment that is required (for either social reasons, or the cause of the illness). Within these methods of treatment, there are areas of overlap and intermingling. Medical systems, while important indicators of political and economic situations, and a dialogue of ethnic relations, should be grappled with not only as systems of thought, but as thought-in-use (Worsley 1982). In short, medical beliefs play an important role in the day-to-day lives; they have historical meaning, influence behaviour, shape ethnic identity, and constitute a dialectical relationship with a vast range of agents.
The pain that is experienced by individuals is influenced heavily by their personality, social and cultural background, as well as the doctor-patient interaction (Rudich et. al 2008). The way in which the body, illness, and pain are understood is under direct influence of emotions, which is shown in images of the functioning body politic and social body (Lock 1993, Scheper-Hughes & Lock 1987). It has been argued that it is virtually “impossible to rid powerful human experiences of metaphor, of cultural representation (although it is, of course, both possible and in many cases necessary to change the images and meanings of sickness, pain, and suffering)…that the reification of illness (as disease alone) is a form of self-alienation, of false consciousness” (Scheper-Hughes & Lock 1986:138).
Dealing with confusion and uncertainty
“The I in illness is isolation, and the crucial letters in wellness are we” (Author Unknown).
One Latin proverb pronounces, “illness shows us what we are”, this is seen in ethno-anatomical perceptions, which give rich ethnographic material on the social and cultural aspects of being human, on health and ill health, and on the social experiences that we are believed to have. “The ways in which the body is received and experienced in health and sickness are, of course, highly variable” (Scheper-Hughes & Lock 1987:7), which can be seen especially in regards to autoimmune disorders where the body is perceived to be attacking itself, it is a highly personalized experience. Lupus is an incapacitating immunological disorder, which is often difficult to diagnose, as there is no objective test for it. It's a disease that's non-objective, varying in time, and unclear. Illness in the context of a breakdown of the immune system enables it to accommodate all illnesses; thus, the illness is both an individual illness, different for each person, but also collective and a common syndrome. The immune system allows the explanatory system to ultimately flexible. The immune system also was an overall explanation, justifying why it was that there are so man different illnesses and illness experiences. The immune system was damaged: with each person responding to this diminished immune system in different ways, emphasizing the uniqueness of the illness for each individual. “Human life cannot be studied without taking into account both how individuals are situated within and constrained by social structures and how those individuals construct an understanding of and impose meaning on the world around them” (Dressler 2001:455). Explanatory models of illness (EM) are a set of beliefs which provide people with ways of thinking about modes of and models for reality, they create order and meaning; this set of beliefs is constructed not by a culture, but by individuals (Young 1982). Sickness can be seen as a process through which disease is given socially identifiable meanings (Crandon 1983, Young 1982, Foulks 1978). For these reasons one of the main concerns throughout fieldwork was the relationship between getting diagnosed and gaining social legitimacy, as, often without this diagnosis people are at risk of being denied the social recognition of being ill and accused of ‘faking it'. One user relates her issues of just wanting her diagnosis to happen:
I'm quite nervous of going to my doctor and saying that I've trying to self diagnose on the internet because I know that's not a good thing to do, but I just want to know that I'm not a hypochondriac or that I'm not going mad. Each time I search yet another virus/pain/problem, the word lupus often appears. I go to my doctors usually to be told I'm run down, I'm depressed, my blood tests are generally fine so nothing to worry about.
This accusation of faking it is felt among many sufferers; and as a result online communication becomes a useful tool in battling this accusation. Online forums are utilized as a soapbox, users take the time to attempt to educate others in their experiences, and what was successful for them in the battle for diagnosis. The use of biomedical facts, the documentation of illness symptoms that are visible, and uses of journals to document pain are often sited as ways to gain access to the socially acceptable sick role, to gain diagnosis. These tips, strategies, biomedical facts, and shared medical articles can be seen over and over again in a variety of forums. The pain that is experienced by individuals is influenced heavily by their personality, social and cultural background, as well as the doctor-patient interaction (Rudich et. al 2008).
I am ready for bed but wanted to post quick with a update from my appointment today….for the biopsy he told me that he will not do a biopsy as they really do not show much OK, so I proceed to politely challenge him and tell him about The Lupus Site, my friends here, the stories I have read about skin biopsy's that clearly show a lot and are very helpful to aid in diagnosis or at least help to paint a clearer picture. He did not like that very much and reminded me that in fact he was the M.D., not me. …So the moral of the story here is I pissed off the doctor today because he was just a pompous know it all who in my humble opinion did not do his job and disregarded the requests of my Rheumy. When I got home I called my Rheumy and left a message for him to call me back and discuss this. I know that he will not be happy and the war between doctors will begin
The obvious senselessness of suffering from illness and the biomedical conjecture of rationality will be addressed in the context of long-term chronic illnesses, such as lupus. Being rejected by doctors if one doesn't fit into the ideal sick role is often a common experience, as one sufferer here relates:
Over the next couple of weeks the devastating dizziness and motion sickness returned (which would later leave me incapable of driving a car for over a month) and I couldn't even ride in a car without getting sick. I told the next doctor I was scared I had chronic EBV, and handed him my labs. He took one look at them and threw them away. Literally, he threw them away in the trash can. He said, your EBV panel shows no active disease, but only results of someone who had mono in the past. This was the first time I learned the lesson that doctors weren't always right….the back of my mind for so many years I knew my issues were getting worse and hated that the dr. always just dismissed it.
Lupus sufferers always start from a standpoint of uncertainty, no one seems to realize what is happening, and many have not even heard of Lupus until official diagnosis. There is a clear knowledge that something is not right with their bodies, and their illness symptoms become a useful narrative when they come into contact with others who are experiencing the same issues. The onset of Lupus is often just a list of symptoms to sufferers, a chronology of failures, and things that they can no longer do; and it seems in many cases that these symptoms do not make sense, they are not cohesive or comprehensible. Explanations that are given to sufferers are often not satisfactory; they are either dismissed, or are still having symptoms that they believe are not answered by the diagnosis given to them. Searching for an explanation, or just to further explain doctors' explanations and interpretations, many stumble upon online forums. It can be seen as Kirmayer (2000) has shown, that the clinical situation is based on the use of medical language, as parties, lupus sufferers and doctors, attempt to convince the other of their illness. For many, this lack of certainty, living with an unknown disease, or an undiagnosed illness led to different ways of research. Once online, and browsing through the forums on lupus, if they managed to find them, many feel a sense of self-recognition. The narratives that are available online are remarkably similar to their own, and the experiences begin to make sense. As Kilshaw points out “this moment can be seen as what Dilthey has referred to as an ‘impression point', a newly inspired reading of one's life reflecting a fundamental shift in personal meaning” (Kilshaw 2004: 152). Sufferers begin to see their illnesses as a medical issue, and no longer believe that it is a psychological disorder; they are armed with medical explanations to talk to their doctors about. This medicalization allows for a means of helping those suffering through the construction of their own personal narratives, which help to make sense out of what they are living through. Forums can often take the form of a sufferer listing off symptoms, to see if anyone else is experiencing the same issues. This can be seen many times over, and is illustrated by this user:
I am suffering from widespread ahces/pains, some sever all chronic, extreme debilitating fatigue, brain fog accompanying speech difficulties, IBS, blood pressure runs on average anywhere from 82/47-95/53, labs always ‘off' high sed, white cell up, ANA wonky, various peripheral neuropathes, bizarre toe/leg cramps, continueous chills/low basal body temperature, fingers turn red/white sensitive and hurt when cool, vision deteriorating, blurring….This last, what I call 'flare', I had sudden onset high fever, pleurisy, small white blisters on my fingers that finally peeled, I work 12hr shifts and on my off days I literally slept round the clock and did absolutely nothing else...nothing, except conserve energy for my next run at my job….I'm sorry this has been so long. I don't believe I've ever sat down and put it on 'paper' before. I'm not sure I wrote it all down, ya'll know how that goes. I probably missed some stuff..my dry eyes, see..I keep thinking of little things. I don't think it's hypochondria?
There is a swap of symptoms and they discuss the outcomes of these, and ways to document and keep track of the symptoms. As Kilshaw demonstrates, it is “through dialogue these single events or experiences are linked together, held up and understood as pathological” (2004: 153); the belief is no longer based on a psychological disease, something that is just in their head. The illness narrative provides coherence and legitimacy to the experience of the sufferers, the collective action online orders and provides meaning for the sufferers experiences of chaos and falling apart. And at the same time, the individual is providing support for the collective, as it is an addition to the narrative.
Lupus is a known condition, although it is a vague one that is extremely hard to diagnose, which can in cases add a different dimension to the online narrative. Because the tests are not conclusive, and many of the tests are not able to diagnose the disease straight off the bat, the narratives that are posted in the online forums often provide structure and weight to the illness. There are countless posts in the forums that reading the online lists of symptoms, and online narratives of other sufferers provided more legitimacy to their cause, the fact that so many other people are going through what they are allows them to believe that it isn't a case of “faking it”. One woman here relates her experience, including her symptoms, and social problems when battling with the disease:
I'm a 42 year old woman just looking for clues and for someone to tell me I'm not losing it. I may be way off the mark here but I came across this site a while ago while searching the internet in my attempt to make sense of all my illnesses. Each time I search yet another virus/pain/problem, the word lupus often appears. I go to my doctors usually to be told I'm run down, I'm depressed, my blood tests are generally fine so nothing to worry about. But this year alone I've had tonsillitis 4 times, 3 UTIs, thrush a fair few times, labyrinthitis, a flu-like illness (which I'm still recovering from), a HPV flare up and on top of that I have, and have had for ages, constantly buzzing ears, painful knees, small dry sore patches of skin with a large patch of something bumpy, flakey and scabby on the back of my head (yuk). I also have a platelet function disorder which was discovered because I bruise easily and had very heavy periods, I ended up having a hysterectomy because nothing else worked. If I go further back than this year I've also had things such as shingles, pleurisy, scarlet fever (!), glandular fever and a large variety of viral illnesses with no name. I have restless leg syndrome and I quite regularly get really bad shoulder pain in my left shoulder that lasts for weeks and hurts to breathe even. I do take antidepressants because I do get depression but surely all of my illnesses can't be because I'm run down and depressed.I also worry that my employers will eventually lose patience with me.
After reading people's experiences on here I understand that what I'm suffering isn't half as bad as what others live with, however does any of this sound familiar? Is it possible that all of my illnesses could be related and due to a condition such as lupus? I'm quite nervous of going to my doctor and saying that I've trying to self diagnose on the internet because I know that's not a good thing to do, but I just want to know that I'm not a hypochondriac or that I'm not going mad.
Adding to and ascribing to the online Lupus narrative results in the individual gaining an identity and a community of people that they can relate to, it releases them from the isolation that is often felt when battling to get diagnosed. It provides a sense of cohesion to the experience of chaos, through this dialogue their individual narrative becomes clearer to the sufferer, it is legitimized. Although the disease is felt differently for each user, the narratives that are created online are consistent narratives, one that is able to incorporate different essentials and experiences. Collective sharing of information is one primary purpose of a social movement. These individuals used to feel isolated and alone, they were facing down the medical institutions that were built to help; they are now able to draw from the collective online experience in order to help them navigate these institutions.
Fighting for recognition
Drawing upon work done by Joseph Dumit, Alan Young, and Susie Kilshaw, one can see how people are understanding, experiencing and using their bodies as resistance to the positivism of biomedicine. The squeezing of variable symptoms into remarkably tiny bureaucratic holes requires meeting the requirements of ones variability into often-strict requirements of the judgments of the experts.
My current nurse practitioner scheduled me to see a nurse practitioner working at a Rheumatology office. My appointment included a history of symptoms, which at the time were not that varied, but still included developing joint pain, and even more increased fatigue. I told her that I had a feeling it was Lupus, but I had no real hard evidence behind me except for one lab result, a bad memory of doctors appointment, and an internal instinct screaming the answer.
The collective sharing of personal narratives helped in the resistance of psychological blame and psychological responses. Because Lupus is such a debilitating immunological disorder, it is very difficult to diagnose; this leads to psychological diagnosis's, which can weaken the claim to the sick role, sufferers are constantly having to work towards convincing friends, family and coworkers that their illness is real, legitimate and debilitating. Being able to fulfill the sick role is important to many people with Lupus, because there are often no codes for their suffering, no quick diagnosis for their diseases, and no visible ailments of the disease they are often subjected to judgments of faking and laziness. Attempting to manage and hold a sick role in society is near to impossible when one is being categorically denied being ill by the doctors that sufferers are seeing. There is a passing off of patients, from doctor to doctor as the Lupus sufferer tries to get diagnosis. Gaining access to a diagnosis often gives the patient proof of suffering, as psychological diagnosis weakens their claim to the sick role in society. One sufferer relates the amount of doctors visited in their battle for diagnosis:
I saw my GP in June after several months of tiredness. By the time I saw him a rash had developed and I was having shivering fevers at night and had swollen glands in my neck….I was referred to a dermatologist who diagnosed urticarial vasculitis….Since then I've been trying different drug regimes; currently on loratidine, fexofenadine, hydroxyzine and ranitidine. After a course of steroids my skin is great. I gave however developed shooting pains at random places, usually my hands and feet, and alcohol gives me fever symptoms. My dermatologist has referred me to a rheumatologist and ophthalmologist(my eyes occasionally show signs of uveitis). My GP has advised that in light of my symptoms and positive auto antibodies (DNA, Ro and La) I almost certainly have SLE.
One must account for illness under the biomedical system, and this requires attending to both the ways in which the scientific facts are circulated and used, and the ways in which these same facts are used in social experiences, how they are used, controlled, and subjugated. Dumit shows how through many doctor-patient interactions there is a comined effect of discourse of disease to produce ‘symbolic domination'; patients experience this “as a system in which they must ‘prove' their illness and their suffering through mobilizing facts” (2005:577). However, collective wisdom of individual experiences offers a powerful mode of resistance to this kind of power. When a doctor cannot name the illness after series of tests and examinations, many people come to think of the patient as not really being ill, and not really suffering. This is a clear case in Lupus, as it is both hard to diagnose, and has very few visible symptoms. The pain that is felt is something that cannot be seen, however it is often described as debilitating. And there are cases, that even if one does achieve diagnosis of lupus through the doctor, and thus has legitimate access to the sick role through that means, friends, family and co-workers for the sheer reason that it is not a visible disease deny them access. Following these denials, sufferers now have a toolbox that they can access in the form of the online forums. There are set out letters that can be used to express the feelings and sentiments of Lupus sufferers, both a letter to family and friends that is vouched for, as well as a story called the Spoon Story. All these attempts at explanation and taking part in the medical system is to achieve some sense of proper role in society. The sick role has specific requirements, and these requirements are often subject to change and manipulation.
Many sufferers have rejected their normal self, as because they are chronically ill, they have a huge desire to return to when they were healthy, being constantly denied the sick role in society has huge effects on their sense of identity and self. Many sufferers were busy individuals, who held normal jobs, and have now become isolated from friends and family, many of whom doubt the illness. The following sufferer relates to being ostracized by those who are close to her:
Keeping it off paper saved me when I moved, changed jobs and needed to redo my insurance. Now I'm in a different region, different rheumy [sic] and my condition has deteriorated...Now a diagnosis on paper would be a good thing!!! The reason for my sudden urgency in getting a diagnosis is my job. My concern is that mine is more of a CNS type because of the difficulties I have with words/speech. I have a delay sometimes in my thought process and more and more in getting the connection between getting the words to/from the brain to the mouth. I'm not thinking as quickly as I need to. Part of my job is 911. I have to be able to think/speak or get a diagnosis explaining why I cannot. Something that says it is only an aches and pains, can sit in my chair and still move my mouth kind of illness is not gonna [sic] help the next screaming caller I answer….The worst thing is I feel so bad that I finding it hard to get up to go into work which is sad as I love my job. I was attracted to the sight because everyone seems so supportive and I could do with some of that right now because everyone keeps telling me I look so well now I have developed a rash - previously my face was pale.
Thus online communication has several important factors. First, the discussion groups are citing the media all the time, it is one way in which sufferers are keeping each other informed to what is happening in the public sphere with their condition. News articles, television appearances, and current research papers are often cited and posted. This can be used to both raise awareness, encourage education about the disease, and as a useful forum to create arguments in response to those articles that aren't fitting with the views of those posting online. Second, the forum provides a safe haven where self-depiction can take place. Many sufferers of lupus are not all that easy to engage with face to face. They are too fast or too slow, too tired, agitated, pained or unreliable. The Internet, with its asynchrony and bandwidth mediates this tremendously allowing fluent ‘normal' communication to take place. Online posters are able to show their feelings, and not have the judgmental viewpoint of doctors, friends, and family; depression is not just something that is psychological to them, it is something that is from the illness that has attacked their very ability to perform in society. For many sufferers of this illness, a common topic of discussion on as well as off the internet concerns how a sufferer should approach their doctor, instructions are given on how to dress, how to act, what to bring, and what symptoms they should relate to the most. These instructions are often accompanied by what the doctor might say in response, or what tests they then might order, and what tests a person should be pushing for in the doctors office. The sufferers are taking control of the situation, and manipulating doctors into diagnosis; but it has also been seen that although doctors are asking questions and giving responses, they are asking questions that elicit a response that the doctor believes is correct (Dumit 2006). The manipulation of the clinical encounter can be seen as walking a thin line, as if one does not do the part convincingly enough, they can be accused again of faking it, of acting ill; however if they do not, there is a chance that they might not be considered ill at all. Therefore “their only choice is to pretend to be who they actually are, in the institution's view. They must work at ‘achieving appropriate appearance' and ‘look and act sick'” (Dumit 2006: 586).
Sufferers often experience Lupus, as a contested disease, in the form of social exclusion. Since the disease is so hard to diagnose, there is often a lack of care and support for those with it. They deal with this uncertainty by giving the illness facts that they see online, and they frame them in medical terms, in order to eliminate this uncertainty and social exclusion. The resultant discussions form the basis of constant experimentation with strategies, tactics, identities and relationships. They also form discussions on the expected alternative therapies, referrals, and provide a place for emotional support. The Internet, with its asynchrony and bandwidth mediates issues of being ill tremendously, it allows those that are ill to act normal, and allows for an easy form of communication. The issues that are addressed and the resources provided to the sufferers online provide the basis for the networks of small groups, and larger internet communities, and allows for dealing with mass media, in order to make life more livable for sufferers. The Internet provides a community and offers alternative personal narratives, and strategies for surviving, giving emotional support to those that are in need.