Using autoimmune strategically: Diagnostic lumping, splitting, and the experience of illness

Social Science & Medicine 246 (2020) 112785

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Social Science & Medicine journal homepage: www.elsevier.com/locate/socscimed

Using autoimmune strategically: Diagnostic lumping, splitting, and the experience of illness

T

Kelly Joycea,∗, Melanie Jeskeb a b

Sociology Department, Center for Science, Technology & Society, Drexel University, 3141 Chestnut Street, Philadelphia, PA, 19106, USA University of California, San Francisco, 3333 California Street, Suite 455, San Francisco, CA, 94118, USA

ARTICLE INFO

ABSTRACT

Keywords: Autoimmune disease Experience of illness Diagnosis Lumping and splitting Diagnostic categories

Experience of illness and sociology of diagnosis literatures offer valuable insights into how people live with chronic illness. In this article, we argue that investigating autoimmune illnesses contributes to the sociological understanding of illness experiences and diagnosis practices. Autoimmune is a broad category of illnesses in which a person's immune system identifies healthy cells as pathological. Drawing on 45 in-depth interviews with people who live with autoimmune illnesses, this article shows how both broad diagnostic classifications (lumping) and narrow diagnostic classifications (splitting) are integral to diagnostic work and illness experiences. Combining the illness experience and sociology of diagnosis literatures, we theorize diagnosis as an iterative process in which people strategically use broad illness categories such as autoimmune in combination with specific illness categories such as multiple sclerosis a way to negotiate heterogeneity and uncertainty and to make sense of what is happening in their bodies. In this article, we argue that in an era of specialization, broad diagnostic categories can help both patients and clinicians navigate the experience of illness.

Patient foundations, journalists, and biomedical researchers have transformed autoimmune disease into a salient way of categorizing a range of diseases. Although the categories “autoimmunity” and “autoimmune” have been in use since the 1950s, the autoimmune bandwagon began rolling in the 1990s (Fujimura, 1996). More than 80 illnesses are considered autoimmune or autoimmune related—these include illnesses such as lupus, multiple sclerosis (MS), type 1 diabetes, rheumatoid arthritis (RA), and Crohn's disease (AARDA, 2017). The category autoimmune is used in a variety of arenas to organize the diagnosis, treatment, and experience of illness. Offering a provocative case for sociological inquiry, the diagnosis and experience of autoimmune illnesses furthers research in the experience of illness and sociology of diagnosis literatures. Experience of illness and sociology of diagnosis literatures offer valuable insights into how people navigate and live with chronic illness. Experience of illness scholarship focuses on the multiple ways diagnoses shape one's sense of self, their social relations, and participation in daily life. This work has taken the diagnostic utterance as the starting point, from which one's experience is then reconstructed and configured (Pierret, 2003). Such work shows how being diagnosed with a chronic illness creates a “biographical disruption” (Bury, 1982), how people practice narrative reconstruction to explain the cause of illnesses and its connections to the social world (Bell, 2000; Williams, 1984, ∗

2000), and how people's sense of time and self change when living with a chronic illness (Charmaz, 1991). More recent work examines how age, gender, race, and ethnicity relate to people's experiences of illness (Heaton et al., 2016; Mendenhall et al., 2010; Monaghan and Gabe, 2015; Sanderson et al., 2015), how the illness experience may or may not involve digital support groups and internet spaces (Barker, 2008; Conrad and Stults, 2010; Pitts, 2004), and when and how illness experiences are catalyzed into social movements (Bell, 2009; Brown, 2007; Brown et al., 2011; Klawiter, 2008). This body of work decenters the centrality of medicine, starting with a focus on people's everyday understandings of living with illness (Conrad, 1987). Once the diagnosis is made, though, illness experience scholars typically turn their attention to the lived experience of illness. Similar to the experience of illness scholarship, work in the sociology of diagnosis has shown how diagnosis is a social process—one in which social factors converge, including the doctor-patient relationship, resource allocation, authority, certainty, and meaning making (Brown, 1995; Jutel, 2009, 2011a, 2016; Pickersgill, 2014). Emphasis is placed on the diagnostic tools themselves, providing close examination of the techniques used to produce a diagnosis (Copelton and Valle, 2009; Ebeling, 2011) or the political mobilizing that is needed to secure a diagnosis in the case of contested illnesses (Brown et al., 2011).

Corresponding author. E-mail addresses: [email protected] (K. Joyce), [email protected] (M. Jeske).

https://doi.org/10.1016/j.socscimed.2020.112785 Received 14 December 2018; Received in revised form 18 December 2019; Accepted 3 January 2020 Available online 07 January 2020 0277-9536/ © 2020 Elsevier Ltd. All rights reserved.

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Both bodies of scholarship treat the diagnostic moment as a critical point that shapes one's illness experience, though they focus on different moments in an illness trajectory. Experience of illness scholarship typically concentrates on the period post diagnosis, and, in response, sociology of diagnosis calls for renewed attention to diagnostic classification and the acquisition of diagnoses (see, for example, Jutel, 2011a; Jutel and Nettleton, 2011). Autoimmune illnesses present a challenge for the current paradigm of understanding illness experiences and diagnosis practices. Paying attention to autoimmune illnesses demonstrates that it is important to theorize the diagnostic process as an iterative one in which diagnostic categories change over time and across specialists, and where different types of diagnostic classifications are in use. People who live with autoimmune illnesses strategically use different types of diagnostic labels—broad labels that highlight similarities between illnesses (i.e., the result of lumping) and specialized, precise ones that highlight differences between illnesses (i.e., the result of splitting)—to understand and explain their condition. Sociology of diagnosis has not paid attention to the difference between diagnostic classifications or examined the work different types of diagnostic categories might do in clinical care. In addition, it pays little to no attention to the ongoing experience of illness. In this article, we ask the following questions: What role do broad and specialized diagnostic categories play in medical classifications? How does attending to different types of diagnostic classifications impact sociological understanding of illness experiences and of diagnostic processes? How do broad umbrella diagnostic categories such as autoimmune help people manage illness and social relationships? Drawing on 45 in-depth interviews with people who live with autoimmune illnesses, this article shows how investigating the experience of autoimmunity in the 21st century contributes to our understanding of the social shaping of diagnosis and illness. Combining the illness experience and sociology of diagnosis literatures, we theorize diagnosis as an iterative process in which people strategically use broad illness categories such as autoimmune in combination with specific illness categories (e.g., MS) as a way to negotiate uncertainty and heterogeneity, and to make sense of what is happening in their bodies both at initial diagnosis and overtime. Use of broad umbrella categories (lumping) goes against the contemporary emphasis on precision in medicine (National Research Council, 2011; Olson, 2017; Prainsack, 2017), making it harder to see and understand their value. In this article, we argue that in an era of specialization, broad diagnostic categories can help both patients and clinicians navigate the experience of illness.

as RA, MS, and Lupus), stress, infectious agents, and environmental toxins and chemicals, but more research is needed (Costenbader et al., 2012; Schmidt, 2011; Selmi, 2010). Estimates suggest that 3.2–9.4% of the population may be affected with autoimmune conditions depending on study parameters (Cooper et al., 2009). In the United States, for example, the National Institutes of Health (NIH) estimates that autoimmune illnesses affect more than 23.5 million Americans (NIEHS, 2012, USHHS, 2012) whereas AARDA, a patient foundation organization, estimates the number to be higher, suggesting that approximately 50 million people live with autoimmune diseases in the United States (AARDA, 2017). NIH's estimate draws on 24 diseases for which rigorous epidemiology studies are available whereas AARDA's estimate includes the 80 plus diseases believed to be autoimmune related. Many autoimmune illnesses disproportionately affect women in comparison to men (Ngo et al., 2014; Pollard, 2012). As this description demonstrates, autoimmune is a broad category—one that highlights similarities between illnesses instead of highlighting the differences between them. It works to “lump” a variety of illnesses together, helping clinicians, patients, and researchers to see what illnesses perceived as distinct might have in common. In this article, we argue that broad diagnostic categories do productive work for people living with chronic illnesses marked by uncertainty and heterogeneity. 2. Methods This research draws on 45 in-depth interviews with people who live with autoimmune illnesses in the United States. Participants were 20–67 years old. Autoimmune illnesses disproportionately affect women in the United States, and as such our interviews were conducted primarily with women: of the 45 people interviewed, 35 were women and 10 were men. 40 participants identified as white, 2 identified as black, 2 as Asian, and 1 as Latinx. All participants were diagnosed with at least one autoimmune related illness at the time of the interview, e.g., celiac disease, Crohn's disease, Guillain–Barré syndrome [GBS], Hashimoto's thyroiditis, IgG1-related sclerosing disease, lupus, mixed connective tissue [MCT] disease, MS, psoriasis, and type 1 diabetes. The majority of participants self-reported white collar, middle class occupations and were insured; 7 participants were students who reported that their parents have white collar, middle class occupations. Two participants, who held white collar occupations in the past, were supported by social security disability income. Most participants had a four-year college degree, or were in the process of attaining one. Some had graduate level education. Participants were recruited by word of mouth, flyers posted about the study in community centers, and at patient foundation events. Potential participants were considered eligible for the study if they had been diagnosed with an autoimmune-related disease, were at least eighteen years of age at the time of the interview, and currently living in the United States. To ensure regional diversity, participants primarily were recruited from California, Pennsylvania, and Virginia. Each interview lasted between 60 and 140 min. Each interview included open ended questions that asked participants to describe their specific illness diagnoses, using the name of the illness that they provided, as well as how they understand autoimmune illnesses more generally, and whether and why they considered their illness to be an autoimmune illness. Participants were asked to describe their diagnostic process, how they manage their illness, where they get information about their illness, and if and how living with illness has impacted their relationships and identity. Interviews were conducted in person, over the phone, or over Skype by one of four research team members. The research team included a medical sociology professor, one graduate student research assistant, and two undergraduate student research assistants. All interviews were recorded and transcribed. Personal identifiers were removed from the data. The Office of Research Institutional Review Board at Drexel University approved the study protocol. ATLAS.ti was used to manage and code interview data. To ensure intercoder reliability, the

1. A short introduction to autoimmune illnesses Autoimmune illnesses can affect different parts of the body, including the skin and connective tissues, the central nervous system, blood, and gastrointestinal and endocrine systems. Though the illnesses included under the autoimmune umbrella vary widely, their common thread is the immune response: a person's immune system attacks its healthy cells, tissue, and/or organs. In some cases, such as celiac disease, where the cause is known (the person's immune system reacts to gluten), treatment involves removing the item that triggers the immune reaction (i.e., gluten). In most cases, though, both a cause and a “cure” are unknown. Instead, most medical treatments typically aim to dampen the body's immune response to prevent the reaction from continuing. This process aims to manage symptoms (not eliminate the underlying cause of symptoms), and can entail a lifetime of treatment. Autoimmune illnesses are well-documented in Europe and North America, with incidence rates of autoimmune illnesses such as type 1 diabetes, MS, and RA on the rise (Agmon-Levin et al., 2011; Lerner et al., 2015; Ramos-Casals et al., 2015). The increase in incidence rates of autoimmune illnesses is thought to be related to a variety of contributing factors, including genetics, lack of exposure to a diverse range of microbes, vitamin D deficiency (in some autoimmune illnesses such 2

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two authors independently coded interview transcripts following the grounded theory tradition. Grounded theory methodology is an inductive, qualitative approach to research in which researchers develop codes, diagrams, and memos to trace emergent themes and concepts from data (Strauss and Corbin, 2008; Charmaz, 2006). Codes that emerged from analysis included the importance of the category autoimmune for both one's personal understanding of one's illness and as a way to explain one's illness to others, the heterogeneity of illness experiences, the uncertainty of illness trajectories, and the importance of war metaphors to understand and explain autoimmune illnesses. All proper names of individuals, doctors, or hospitals have been changed to ensure confidentiality except for names on publicly available materials. All quotes used in this article have been edited to remove false starts and filler words for ease of reading.

Berg, former Director of the U.S. NIH (2018, p.1309) notes, “Consider the classification of cancer cells. Too much lumping, such as defining cancer cells only by their tissue of origin, will obscure biologically and clinically important differences, whereas too much splitting will yield too many categories with insufficient information available about any given one.” In addition to guiding research, both types of diagnostic classifications are also used routinely in diagnostic work as clinicians try to classify a person's symptoms. Training to use broad categories starts in medical school. Medical students are taught mnemonic devices such as VINDICATE or VITAMIN CDE to remember broad diagnostic classifications when encountering a patient (Collins, 1981; Zabidi-Hussin, 2016). The letters in each mnemonic stands for a broad category of disease; each letter, or category, represents a bucket that lumps together related illnesses and condition. The letters in VINDICATE, for example, stand for vascular, infectious, neoplastic, degenerative, iatrogenic, intoxication, congenital, autoimmune, traumatic, and endocrine. The letters in VITAMIN CDE stand for vascular, infectious and/or inflammatory, traumatic and/or toxic, autoimmune, metabolic, iatrogenic and/or idiopathic, neoplastic, congenital, degenerative, and endocrine. The mnemonics help trainees sort information gleaned from a patient's personal history and laboratory tests into broad diagnostic categories in order to narrow their evaluation of a person's condition. In doing this, trainees develop a differential diagnosis, that is, a list of possible conditions or illnesses that could be causing a person's symptoms. As trainees become experienced physicians this thought process becomes automatic and they no longer rely explicitly on mnemonics. As experienced clinicians, they may be able to quickly narrow in on specific diseases, but still use the interplay between the broad and the narrow to conduct diagnostic work, especially in challenging cases. People with autoimmune illnesses may present such a challenge. Considered a broad diagnostic classification, autoimmune illnesses are thought to share a common underlying mechanism that initiates the autoreactivity (Anaya et al., 2008; Davidson and Diamond, 2013). Aspects of the genetic predisposition thought to contribute to autoimmunity are believed to be similar across multiple autoimmune diseases (Cho and Gregersen, 2011). In addition, the autoimmune response at the cellular level has been found to be similar across autoimmunerelated illnesses (MacKay and Rose, 2013; Shoenfeld et al., 2014). Using this framework, researchers determined that pharmaceutical treatments, such as tumor necrosis factor [TNF] inhibitors, that work for one autoimmune illness, may work for others (Davis, 2018). Moreover, shifting diagnoses as well as the presentation of multiple autoimmune illnesses in one person or families has been used as evidence of a common underlying mechanism (Anaya et al., 2008). The availability of the category autoimmune as with other diagnostic categories is the result of the actions of multiple actors. The American Autoimmune Related Diseases Association [AARDA], working with clinicians, research scientists, and journalists, has promoted the use of autoimmune since its founding in 1991. AARDA has been an important actor in the category's creation and circulation. As part of this effort, AARDA sponsors public forums such as “What Every American Needs to Know About Autoimmune Disease” at locations across the United States, a national toll free patient information phone line, webinars, autoimmune walks, television and radio advertisements, and contributes to research conferences. AARDA, working with individual autoimmune patient foundations such as the National Multiple Sclerosis Society, also works at the regulatory level. AARDA successfully lobbied the US Congress to require the NIH to organize and count diseases within the category autoimmune through the NIH Autoimmune Diseases Coordinating Committee (ADCC) in the late 1990s. It also successfully lobbied the US Congress to designate March as National Autoimmune Disease Awareness Month in 2010. Such efforts are linked to collaborations with journalists who publish pieces on autoimmune illnesses in magazines such as Ladies Home Journal and Glamour (Homes, 2001). These efforts increase the visibility of the

3. Classifications in medicine: to lump or split? Within medicine, clinicians and researchers use the language of lumping and splitting to distinguish between two valuable diagnostic classification practices. Lumping is when a classification highlights the similarity between illnesses or conditions. The process of lumping creates broad categories and emphasizes connections. In contrast, splitting emphasizes the differences between illnesses. Splitting creates categories that tend to be narrow and more specific, prioritizing difference rather than similarity. The process of lumping and splitting is ongoing: a diagnostic category that seemed narrow and specialized at one point of time, for example, can later become perceived as a broad or “lumping” category, and subsequently be divided into smaller subcategories. Similarly, “split” categories can become viewed as too narrow and subsequently are “lumped” together to form broader categories. This latter process happened when the American Psychiatric Association published the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013. In the DSM-5, the categories autistic disorder, Asperger's syndrome, pervasive developmental disorder not otherwise specified, and disintegrative disorder were “lumped” together to form one category “autism spectrum disorder” (Hyman, 2013). Lumping and splitting has a long history in medical research. George Simpson (1945) is credited with bringing this language into the mainstream. Introducing these ideas in a chapter called “Splitting and Lumping,” Simpson (p.23) writes: Both splitting and lumping have a place … It is desirable that all distinguishable groups should be distinguished (although it is not necessary that all enter into formal classification and receive names). It is also desirable that they should all be gathered into larger units of increasing magnitude with grades, each of which has practical value and which are numerous enough to suggest the degrees of affinity that can be and need to be specified. Fields such as medicine, ecology, biology, and sociology use the language of lumping and splitting to describe two common strategies for developing taxonomies (Zerubavel, 1996). As with other fields engaged in creating taxonomies, medicine cycles between the two processes. As a physician participating in a discussion of disease classification noted, “There are certain cycles in medical investigation. If one goes back in the history of medicine to the last century, one finds in the beginning there was splitting, and then came lumping, and then came splitting again” (Bohrod, 1954, p.639). Lumping and splitting is an iterative, ongoing process that requires constant adjustment as new tests and treatments are created, older practices are refined, and new knowledge is produced. Medical researchers in particular wrestle with when to lump or to split conditions in an effort to fine-tune diagnostic categories and develop more impactful treatments. At times, researchers will decide that too much lumping or splitting has occurred, arguing for adjustments. Explaining the problem with too much lumping and splitting, Jeremy 3

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category autoimmune, helping it circulate in society. Understanding the commonalities across autoimmune illnesses, referred to as the “kaleidoscope of autoimmunity” in the scientific literature (Anaya et al., 2007), helps to make sense of the importance of broad categories in diagnostic work and illness experiences.

you say?,” a woman living with MS, for example, noted, “No two people are alike. Anything that you know about one person does not necessarily apply to another person. Or apply to you should you happen to get that [an autoimmune illness].” A woman living with psoriasis further highlighted the heterogeneity of autoimmune illnesses when she explained, “Autoimmune illnesses could benefit from having some sort of multifaceted approach as opposed to just medication, [this] could be really beneficial because they seem to be very different in the way that they result in symptoms in the body and the way they go about inflicting those symptoms.” Heterogeneity was also evoked when individuals talked about their narrow illness diagnosis. While most participants knew others who shared their specific diagnosis, it did not mean that their experience of symptoms, their triggers for symptoms, or their responses to particular treatments were similar. Exemplifying the emphasis on heterogeneity within specific illness categories, a woman who lives with GBS noted, “The thing about Guillain-Barré Syndrome, and you probably already know this, is that you can't compare with any other patients, because it's different for everybody.” This idea that specific autoimmune illnesses “are different for everybody” was echoed across participants, regardless of which autoimmune illness they had been diagnosed with. A woman who lives with lupus shared, for example, “When I think of lupus, I think of the diversity of how it – the different ways it affects different people.” Across interviews, participants highlighted the heterogeneity of autoimmune illness, both within the broad category autoimmune and within their specific illness category. In the face of this heterogeneity, the category autoimmune did important work. In interviews when participants discussed heterogeneity, they moved between discussions of autoimmune and specific illness labels to understand the varied presentation of illness. An understanding of autoimmune processes gave participants a category that helped tie such heterogeneous, disparate experiences together—both for themselves and, as will be discussed below, for when they explained their illness to others. Participants also used the category autoimmune as a way to make sense of illness experiences that are unpredictable. One of the most challenging aspects of autoimmune related illnesses is the unpredictability of symptoms—a dimension of autoimmune illness that is also discussed in popular science texts and patient education efforts (Faust and Buyon, 2003; Lahita, 2004; Shomon, 2002). The experience of unpredictability, coupled with attempts to predict and control the onset of symptoms, mirrors other social science research on chronic conditions (see, for example, Barker, 2005; Charmaz, 1991; Nowakowski, 2016). Across all participants, the unpredictability of autoimmune illnesses was a central theme. For example, a woman living with ulcerative colitis explained that when her father became ill with an autoimmune illness:

4. Findings: using ‘autoimmune’ strategically Despite the centrality of broad and narrow categories in medical practice and research, the sociological literatures on the experience of illness and on diagnosis have not attended to the different types of diagnostic categories employed in clinical care and their implications for the experience of illness. As noted above, the sociology of diagnosis importantly provides close examination of the techniques used to produce a diagnosis (Copelton and Valle, 2009; Ebeling, 2011; Jutel, 2009), how health social movements lobby for recognition of diagnosis in the case of contested illnesses (Brown et al., 2011), and the process and politics of particular diagnostic categories (Jutel, 2011a). When sociologists examined attempts to create larger psychiatric diagnostic categories in the DSM-5, they raised important questions about the process and politics of category creation, but the tension between broad and narrow categories was not discussed (see, for example, Pickersgill, 2014; Whooley, 2014, 2016). As Jutel (2011b, p.190) notes, “Understanding classification must be part of the quest to understand better the social context and implications of diagnosis.” This article contributes to a better understanding of the types of classification used by people who live with chronic conditions. People who live with illnesses make the illness experience—they are not passive actors in the face of illness or diagnosis. In our study, we found that people who live with autoimmune illnesses strategically use both broad and specific diagnostic categories to make sense of and manage the experience of their bodies and interactions with health care. That is, participants use “autoimmune” in addition to narrow illness categories such as lupus or MS, not instead of using a narrow diagnostic category. The autoimmune category helps participants make sense of their narrow illness label. The broad and narrow diagnostic terms work together to help participants understand what is going on in their bodies. Regardless of gender, age, or specific disease diagnosis, we found that participants make use of the broad category of autoimmune in three different ways in their daily lives. The three ways are (1) use of the category autoimmune to provide continuity and certainty in the face of heterogeneity, unpredictability, and diagnostic uncertainty, (2) use of war metaphors that are central to medical descriptions of autoimmune responses to understand what is happening in their bodies, and (3) use of war metaphors to make their illness visible to others. In addition to these three strategies, participants who live with type 1 diabetes use the category autoimmune in a distinct manner—to distinguish their illness from type 2 diabetes thereby managing stigma and blame. Each of the findings is described in-depth below.

Most people assumed that he had a stroke, but in fact, he contracted an extremely rare autoimmune disease called Guillain–Barré syndrome [GBS]. Like me, he was told that it was completely unpredictable, and there was no telling when, if ever, he was going to get his feeling back … I don't think people realize what an autoimmune disease can do. It's scary knowing your body is attacking itself with a mind of its own.

4.1. Creating continuity and certainty The majority of participants highlighted how the broader classification of autoimmune provided continuity and a form of certainty in the face of heterogeneity, unpredictability, and diagnostic uncertainty—all key dimensions of autoimmune related illnesses. Regardless of gender, age, or specific autoimmune illness, participants described how autoimmune illnesses are varied and unpredictable. The broad category autoimmune thus helped provide continuity and certainty—certainty that heterogeneity and unpredictability were normal parts of their illness experience— as participants negotiated a seemingly constant state of flux. Across interviews, participants repeatedly described the heterogeneity of autoimmune illnesses as a hallmark of the autoimmune experience. When asked “If you were going to tell people who don't have an autoimmune illness and don't know anything about it, what would

“A mind of its own” suggests that autoimmune illness does what it wants. For this participant, this phrase highlights how its presentation is unpredictable. Further exemplifying this finding, a woman living with lupus explained, “For a person with an autoimmune disease—it takes tolerance and understanding of that. Because one day your symptom can be this, and another day it can be something else.” Participants also emphasized unpredictability when describing their narrow illness category. While describing her experience of illness, for example, a woman explained how lupus “can be quiet at times and tame, if it's not bothered, if it's at a distance. But it can attack randomly 4

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at any time.” For participants living with type 1 diabetes, the unpredictability came from changes in blood sugar levels, which can be affected by the types of food eaten, heat, or physical activities such as exercise, housework, or sex. Exemplifying this point, a man living with type 1 diabetes noted that changes in blood sugar “can definitely interrupt your doing something … There have been a couple times that I've gotten a low blood sugar in the middle of something [sexual]. It's kind of really embarrassing and annoying to have to stop and go tell someone, ‘Hold on. Let me go get some sugar.’” Regardless of the narrow illness diagnosis, participants experienced the onset of symptoms as changeable and irregular. Finally, participants found that the category autoimmune provided continuity and certainty in their illness experience even when they experienced diagnostic uncertainty. The stress associated with diagnostic uncertainty for patients is well-documented in the literature (see, for example, Nettleton, 2006; Stockl, 2007). In our study, many participants experienced diagnostic uncertainty that was caused by the way narrow diagnostic labels could change over time. For participants with autoimmune illnesses that have single diagnostic tests, such as type I diabetes, the diagnostic journey may only take a few weeks or months. With such illnesses, diagnosis is often a linear process that ends with a fixed diagnosis. But for others, with illnesses that do not have simple diagnostic markers such as GBS, MCT, and lupus, or for those who do not fit the imagined population who are thought to be affected by particular autoimmune diseases (Anaya et al., 2008), achieving a narrow diagnostic classification sometimes took several years. Even after a narrow diagnostic label was achieved, this diagnosis could continue to change depending on information produced by tests and the types of specialists consulted. Many participants reported how shifting diagnoses was part of living with illness. Highlighting this process, a woman living with lupus explained, “I have had ANA positive, ANA negative,” referring to a diagnostic test used to indicate lupus. When the test produced an ANA positive result, it confirmed the lupus diagnosis. When the test produced an ANA negative result, it did not. This is not an example of “misdiagnoses” becoming “the correct diagnoses.” The back and forth, or shifting between diagnostic categories, is considered routine in autoimmune illnesses, documented in the medical literature, and serves to normalize this experience (Anaya et al., 2008; Davidson and Diamond, 2013). A participant exemplified this experience when she explained her diagnostic journey:

present in a variety of ways, creating challenges for precise diagnostic work. Use of the category autoimmune thus meant that participants did not have to put their lives on hold even as aspects of their specific diagnosis changed from ulcerative colitis to Crohn's disease, from lupus to MCT, from one type of MS or lupus to another type of MS or lupus, and from having MS to not having MS to having MS. Autoimmune, although an umbrella or broad category, is productive for those experiencing illness, lending legitimacy to the symptoms a person experiences. Participants found out about the category autoimmune through their own research and through interactions with physicians. One man's first doctor rejected the possibility of MS outright because he did not fit the demographic associated with the illness, which disproportionately affects women. After conducting his own research on his symptoms and knowing a relative who had been diagnosed with MS a few years earlier, he was convinced that he had an autoimmune condition and drew upon this certainty to seek a second opinion. The priority during this period for this man and for other patients, as they explained to us, was to get their illnesses under control so that it is not a constant intrusion into their lives. With the category autoimmune, participants began to develop a rich set of strategies to manage their flares, symptoms, and develop a new normal (Joyce and Jeske, 2019). Participants' experiences of changing autoimmune diagnoses are now being recognized by some health care organizations. Some organizations are taking the lead and reorganizing the delivery of services in recognition of the changing diagnoses and, at times, unknowable, dimensions of autoimmune illnesses. A clinic dedicated to autoimmune illnesses at the West Penn Hospital in Pittsburgh, Pennsylvania that opened in February 2018 is an example of this reorganization. As Dr. Manzi, one of the co-founders of the Autoimmunity Institute at the West Penn Hospital, explains, “People are not textbooks … Many people in these families have a sprinkling of things. They don't meet criteria for this disease or that disease, but they have features of autoimmunity. We tell people, ‘You don't need a label. We can still help you’” (Tucker, 2018). The broad category autoimmune helps doctors work with patients even when their more specific diagnostic labels shift or when their symptoms do not map neatly into diagnostic tests or markers. 4.2. Use and acceptance of war metaphors to understand one's illness In scientific textbooks, the autoimmune response is typically explained using a war metaphor, in which the body attacks itself in response to outside invaders or triggers. The majority of participants repeatedly used these war metaphors to describe what was happening in their bodies. Regardless of their narrow disease label or gender, participants described their experience of autoimmune illness using the language of attacks, battles, fights, and killing. A participant living with lupus noted, for example, that she imagines autoimmune illnesses as “the body attacking itself. I just picture an internal battle going on inside me, just like competing for control over my body.” A man living with Crohn's explained, “I'd always heard the phrase autoimmune and how it's your body attacking yourself as foreign. And that was an interesting concept for me because I'm thinking, ‘Well, gee, why is my own body attacking myself as if it were foreign?” … It was a useful tool for me.” Turning to descriptions of specific illness categories, the war metaphor that is central to definitions of autoimmune reactions continued to be evoked. When asked to describe what he thought caused his diabetes, for example, a participant living with type 1 diabetes explained, “They [my cells] attacked the pancreas and essentially killed off the pancreas which resulted in me becoming diabetic.” Or, as a woman living with GBS explained, “It [GBS] attacks your nervous system. It's like the antibodies are trying to fight off, but at the same time they are attacking your body.” Participants were especially likely to use attack language when describing flares, that is, moments when the illness is active in their

[MCT was] radically impacting my life. I couldn't get it under control. So I went to a second doctor. I kept the rheumatoid arthritis diagnosis and I think it was about four years into the disease after some doctor had made a mistake on the lupus diagnosis. He had actually tested blood work right after I had done Remicade. Remicade gives you a false negative for lupus. It was my fourth doctor that finally said, “Oh my God. You've got mixed connective tissue disease.” It was about four to five years into the diagnosis that I finally actually heard about mixed connective. During the time of changing diagnostic labels, participants found that the idea of autoimmunity provided continuity. Indeed, some participants emphasized how the autoimmune response is an underlying condition that could present in various illnesses. A participant living with Crohn's illustrated this point when she noted, “I think that many of these autoimmune diseases, I think there's something like an autoimmune syndrome where you can manifest the diseases that – psoriasis or lupus or any of this stuff you're studying. It just happens to be how your body's showing the damage when the actual problem is an autoimmune system that is overreactive.” Further exemplifying this perspective, a woman living with lupus explained, “That's what I think an autoimmune disease is—you know so many varying symptoms, so many things that people don't think of. And you think, ‘Oh this doesn't happen to me.’ But you have to realize that autoimmune means that it’s systemic.” Because they are systematic, autoimmune illnesses can 5

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bodies. Flare is a concept articulated in the medical literature that is also used by people who live with autoimmune illnesses to describe living with autoimmune illnesses when they are symptomatic. Describing a flare, a woman who lives with Hashimoto's thyroiditis explained, “When I first got this diagnosis, it seemed to make sense that my thyroid was perceived as a threatening agent and the rest of my body, you know, would be attacked.” Further exemplifying this broader pattern in the interview data, a woman living with lupus noted that the body's antibodies “don't recognize what's going on and say, ‘Okay, let's fight.’ And so they attack the body's good tissue.” Flares can be triggered by various stressors, environments, and foods, among other things, and vary from person to person. When describing flares, participants noted how the body “attacks” healthy cells or tissues. The person's own body is now perceived as what some participants described as “a foreign body” or “a foreign agent,” terms also found in the medical literature. In using this language to understand and describe their bodily experiences, participants, who were primarily middle class, adopted medical language to describe their bodies. As anthropologists and sociologists who have studied the traffic between metaphors used in science and lay people's understanding of an illness have shown, middle class people tend to adopt medical metaphors and explanations (Martin, 1988, 1994).

term autoimmune to negotiate blame, she then stated, “Type 1, which is what I have, is the autoimmune one and that's totally not the case [of what leads to type 2 diabetes]. You didn't do it to yourself. It's not because I ate sugars every day, and I was a fat, chubby kid. So I would think that, if people could be more aware and educated on actually the difference between the two.” The majority of participants who live with type 1 diabetes worked hard to decouple type 1 and type 2 diabetes in order to manage stigma and blame. Illustrating the effort to differentiate between the two types of diabetes, a man who lives with type 1 diabetes explained: I still jump back to the whole type 1, type 2 distinction. You know whenever people really ask me about it, well this really gets me. People will say, “You don't look like somebody that has diabetes.” And I go, “What should somebody with diabetes look like?” And they'll say, “Well you're not fat. You look pretty fit.” And I go, “Well of course!” Autoimmune provides a strategy for some participants to make that distinction clear to others. When asked, “Do you consider diabetes to be an autoimmune disease?”, for example, a woman living with type 1 diabetes responded, “Yes. Not type 2. I hate that people confuse the two. Or think that just because you have diabetes means you're overweight. You're obese. Or you live an unhealthy lifestyle … That drives me up the wall. Type 1 is a completely different disease in my mind, than type 2. And, absolutely, I think type 1 is definitely autoimmune disease.”

4.3. War metaphors make illness visible Most participants described how the war metaphor used to describe autoimmune processes helped make their often invisible bodily experiences visible and recognizable to others. Explanations of autoimmunity, participants reported, served as a useful tool when explaining their condition to others. A woman living with Crohn's highlighted the value of medical descriptions of autoimmune illness when she explained, “When I describe what an autoimmune disease is to people who largely don't know, I basically tell them something very similar. That the body in one form or another, in one area or another, attacks some portion of itself as being a foreign body that needs to be eradicated. Because of that, it causes either inflammation or ulceration or lesions or whatever.” Yet another participant living with lupus summed up the effectiveness of the war metaphor when she said, “It [the war imagery] brings it down to a more simplistic level that people can understand.” While friends, family, and co-workers may be unable to grasp the specific characteristics that define an illness such as Crohn's, the basic explanation of attack made what are often invisible illnesses, i.e., illnesses in which the symptoms, pain, and damage are invisible to bystanders, visible and legible.

5. Discussion Our analysis demonstrates how participants strategically use broad diagnostic categories such as autoimmune (lumping) as well as narrow categories such as lupus (splitting) to make sense of their illness experiences. The experience of autoimmune illness is marked by heterogeneity and unpredictability: symptoms and flares within an individual's body are often unpredictable and the same condition in one individual may be vastly different for another. Moreover, patients may exhibit symptoms that suggest autoimmune processes, and may have a family history of autoimmune illnesses, yet their symptoms may not match the diagnostic criteria for a particular autoimmune illness (e.g., lupus or MS). The category autoimmune provides both patients and clinicians with room to maneuver in the face of heterogeneity and unpredictability, helping manage the stress that comes from diagnostic uncertainty (Nettleton, 2006: Stockl, 2007). The category autoimmune is productive for those experiencing illness, lending legitimacy to the symptoms people experience even as their specific diagnoses may change. This article contributes to the sociology of diagnosis literature by paying attention to the different types of diagnostic labels available (e.g., broad and narrow), and investigating the work these do in the experience of illness. Attending to how people live with autoimmune illnesses demonstrates that the diagnostic process is an iterative one in which patients use both broad and narrow diagnostic categories to understand what is going on in their bodies and make sense of their illness experiences. In this study, participants overwhelmingly drew upon medical descriptions of autoimmune illness as processes of war, attacks, and fighting to understand and explain autoimmune conditions. Participants used war metaphors to describe both autoimmune illnesses in general and their narrow illness diagnosis in particular, further demonstrating the movement between the broad category autoimmune and narrow diagnostic categories such as GBS. Combining the illness experience and sociology of diagnosis literatures demonstrates the importance of lumping in the age of specialization and precision medicine. Although specialization has a role to play in medical practice, this article demonstrates the importance of broader diagnostic categories such as autoimmune. In contrast to the contemporary emphasis on precision and specialization, e.g., splitting,

4.4. Managing stigma In our study, people living with type 1 diabetes used both lumping and splitting as a strategy to manage stigma. For approximately half of the participants living with type 1 diabetes, the term autoimmune was important because it allowed them to distinguish their illness from type 2 diabetes, which in turn allowed them to manage the stigma and blame associated with type 2 diabetes. Type 1 diabetes develops when one's pancreas does not produce insulin or is producing an insufficient amount; type 2 diabetes develops when cells do not respond normally to insulin and as such over produce insulin (CDC, n. d.). Participants who lived with type 1 diabetes were concerned that type 2 diabetes is perceived as the result of poor diet and exercise choices; they wanted to distance themselves and their illness from this framework, and to help others understand that type I and type 2 diabetes were not the same illness. Exemplifying this point, when asked what she would like to come out of our research, a participant said, “An understanding of the difference between type 1 and type 2. A lot of times when you say you have diabetes people are going to assume it's because you're overweight or because you ate too much sugar. You did it to yourself.” Using the 6

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both broad and narrow diagnostic categories play an integral role in medical practice. As this study demonstrates, use of the broad category autoimmune by patients challenges the emphasis in medicine on specialization and the priority placed on the development and use of specialized diagnostic tests and treatments to split diseases from other diseases. This quest can be seen in the narrowing in on different types of cancer as well as the rise of personalized or precision medicine (National Research Council, 2011; Olson, 2017; Prainsack, 2017). The findings presented in this article have implications for clinical practice at both the patient-provider interaction and institutional levels. First, we suggest that clinicians consider presenting patients with both broad and narrow disease classifications when discussing autoimmune diagnoses initially and over time. Inclusion of broad categories such as autoimmune may provide continuity and certainty as narrow disease categories change. Lumping may also help patients explain their illnesses more easily to others and to imagine a shared experience with others who have autoimmune illnesses. Second, our analysis highlights a potential avenue for institutional change. The integrated clinic at West Penn Hospital, discussed in the findings section, is organized around the broad autoimmune classification. This creates a one stop shop for patients in which key specialists are located in the same unit instead of dispersed across sites. In addition to helping coordinate care, efforts like this may improve the experience of care by lessening the need for patients to travel to different locations; an obstacle that requires sufficient time and health coverage, placing additional expectations on patients coming from varied economic situations. Future research should investigate how and when clinicians strategically use broad/lump and narrow/split diagnostic categories in medical care. Such an inquiry will provide insight into how clinicians use a repertoire of diagnostic classifications as part of their assessment processes. In an era of specialization, when emphasis is placed on precision and personalization, paying attention to the use of broad categories in diagnostic processes and experiences of illnesses complicates how we understand and value specialization in medicine.

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