This is the Question Evaluate 'chronic Lyme' through the lens of the Barker article 'The Social Construction of Illness' (from week 2). Is chronic
This question has been answered
Question

This is the Question

Evaluate "chronic Lyme" through the lens of the Barker article "The Social Construction of Illness" (from week 2). Is chronic Lyme a contested illness? What are some of the medical questions surrounding chronic Lyme?


This is the article its referring to


The Social Construction of Illness

Medicalization and Contested Illness

This chapter makes a case for the usefulness of a social constructionist approach to medical sociol- ogy, emphasizing the analytic potency of social constructionism for explaining a key cultural and historical trend of our time: medicalization (Clarke et al. 2003; Conrad 2007). It includes a detailed discussion of contested illnesses— illnesses where patients and their advocates struggle to have their medically unexplainable symptoms recognized in orthodox biomedical terms—and suggests that lay practices and knowl- edge, and the consumer demands they engender, are increasingly crucial in advancing medicaliza- tion in the twenty-first century.


Sociology of Knowledge and the Social Construction of Illness

Social constructionism is a diverse set of theories of knowledge developed and used by social sci- entists, historians, and cultural studies scholars. From a constructionist perspective, a social con- struct is an idea that appears to refer to some ob- vious, inevitable, or naturally given phenomenon, when in fact the phenomenon has been (in full or part) created by a particular society at a particular time. Pointing to the socially constructed charac- ter of an idea challenges its taken-for-granted na- ture and the social practices premised on it. As a case in point, feminists claim that gender is a so- cial construction, meaning that our current ideas

Kristin K. Barker, Oregon State University

about gender (i.e., norms and standards concern- ing femininity and masculinity) are not biologi- cally mandated; therefore, the ideas and the social practices they institutionalize are alterable. Social constructionism has been a centerpiece, theoreti- cally and substantively, of the subfield of medical sociology. Stated in brief, its chief contribution has been to demonstrate just how complex the answers are to the seemingly straightforward questions, What is an illness? What is a disease? But before taking on these questions, it's useful to trace the intellectual origins that inform a socio- logical approach to social constructionism.

From its inception as a discipline, sociology has approached ideas as reflections of the spe- cific historical and social environments in which they are produced. The founding sociological thinkers—Karl Marx (1818-1883), Max Weber (1864-1920), and Emile Durkheim (1858- 1917)—each addressed the relationship between the ideas or beliefs of a society and the social and material conditions of that society. Published in 1936, Karl Manheim's Ideology and Utopia rep- resented a significant advance in the sociology of ideas. Manheim urged sociology to study em- pirically how peoples' historical context and their station in life (i.e., class) condition their ideas. In the 1960s, Berger and Luckmann (1967) articu- lated the link between ideas, including taken-for- granted or commonsense knowledge about reality, and everyday social interaction. In more recent decades, feminist and postmodern sociologists

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have demonstrated the relationship between our ideas and our social locations in race, class, and gender hierarchies of power, and have built on Foucauldian views of knowledge as a type of dis- course that arbitrarily gives some groups power over others (Collins 1991; Smith 1987). Finally, sociologists contributing to the interdisciplinary field of science studies claim that scientific knowl- edge, like other ideas, is the outcome of concrete social practices rather than of individual discover- ies of truth that "carve nature at its joints" (Knorr Cetina 1997; Latour 1987; Timmerman 2007). This long and venerable tradition—often called the "sociology of knowledge"—studies ideas not as true or false expressions of the world per se, but as the realized expression of particular social interests within particular social systems and contexts (Merton 1973). In other words, from a sociology of knowledge perspective, our ideas are social constructions (Berger and Luckmann 1967).

Sociologists study the social construction of many different ideas, but of interest to us here are sociologists who study ideas about illness. Although perhaps not immediately obvious, the use of social constructionism in medical sociology can be traced to Talcott Parsons's (1951) concept of the sick role. The sick role describes illness as a form of medically sanctioned deviant behavior, and specifies the rights and obligations given a sick person to ensure that an episode of sickness doesn't disrupt social order and stability. Despite Parsons's social conservatism, his theoretical claims were premised on the conceptual distinc- tion between the biophysical nature of disease and the social experience of sickness. Over the last fifty-plus years, medical sociologists have built on this distinction to make more radical and far-reaching claims concerning the social con- struction of illness and disease (Brumberg 2009; Conrad and Schneider 1992; Freidson 1971; Lorber and Moore 2002).

Social constructionist scholars emphasize the relationship between ideas about illness and the expression, perception, understanding, and re- sponse to illness at the individual, institutional, and societal level. Historical and cross-cultural comparisons are effective ways to illustrate social constructionists' claims. Imagine, for example,

two societies: one defines illness principally as the outcome of moral failings or spiritual transgres- sions (on the part of individuals or communi- ties); the other defines illness principally as the result of organic disturbance within an individual human body. Who (or even what) is identified as "ill" in these two societies will differ dramatically, as will arrangements for how and by whom ill- ness is to be treated. In addition, the subjective experience and meaning of being ill will be mark- edly dissimilar because the two societies provide very different interpretive frameworks of the ill- ness experience. In one society, "the shamed" stand before a sacred figure who rights the wrong, cleanses the soul, or grants mercy; in the other, the individual victim of disease—"the patient"— seeks the physician's technical skills to restore or fix his or her wounded body.

Social constructionists also examine why some illnesses exist in one place and not another, or appear and then disappear in the same place. In many societies, for example, women do not suffer from premenstrual syndrome (PMS) or anorexia nervosa. Likewise, susto and koro are illnesses that exist only in certain cultures. A number of illnesses that were present in Western societies in the late nineteenth and early twen- tieth centuries—including fugue, hysteria, and neurasthenia—have now faded from view (Hack- ing 1998). These so-called culture-bound and transient illnesses effectively advance the social constructionist claim that illness and disease are something beyond fixed physical realities; they are also phenomena shaped by social experiences, shared cultural traditions, and shifting frame- works of knowledge.

From a social constructionist perspective, the task is not necessarily to determine which of the two societies has the correct ideas about illness, or which of the illnesses found only in certain places or certain times are real. Instead, the task is to determine how and why particular ideas about illness appear, change, or persist for reasons that are at least partly independent of their empirical adequacy vis-à-vis biomedicine. So, for example, social constructionists pay close attention to how and why particular definitions or ideas about illness became dominant in particular places and times and how they marginalize or silence

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alternative ideas (Conrad and Schneider 1992; Freidson 1971; Starr 1982; Tesh 1988). Addi- tional questions follow: What factors help explain why one society defines illness in moral terms, whereas another eschews such ideas in favor of observable anatomic abnormality? What are the central consequences—for the society at large and for afflicted individuals—of one set of ideas versus another? What dynamics are at play in the appearance and disappearance of a certain illness or in the existence of an illness in one place but its absence elsewhere?

Although these are some archetypal social constructionist questions, questions about reality and truth inevitably arise: Don't some ideas about illness more accurately reflect the truth than oth- ers? Doesn't the scientific disease model better explain and treat illness than folkloric or religious approaches? Isn't death definitive proof that ill- ness isn't simply a social construction? These questions arise because not everyone agrees what calling an illness "socially constructed" implies. This is largely because there is no single social constructionist perspective in general, or in medi- cal sociology in particular (Brown 1995).1 Instead there are several versions of social constructionism used by many different academic disciplines, each drawing on different intellectual assumptions about the relationship between ideas and the material world. The widespread use of several ver- sions of social constructionism, by scholars from a host of disciplines, applied to an increasing ar- ray of phenomena (e.g., race, gender, sexuality, quarks, disability, illness) has led to a confused and mulled state of affairs with respect to what exactly is socially constructed about phenomena said to be social constructions.

In his aptly titled book 

The Social Construc- tion of What? philosopher Ian Hacking asks the following types of questions: What does it mean to say that race, or a quark, or an illness is a so- cial construct? Does it mean that we made these things and they would not exist as such if we had not made them, and/or we could have made them in a fundamentally different fashion? Or, does it mean that we made our ideas about these things, and we could have come up with very dif- ferent ideas about these things? Does it mean that both the things and our ideas about the things are

socially constructed? Are all things and all ideas social constructions? Or, if all things and all ideas are not equally socially constructed, what makes some things and some ideas social constructions and not others?

Hacking and other analytic philosophers and philosophers of science raise important ques- tions about social constructionism (Boghossian 2001; Hacking 1999; Searle 1995; Slezak 2000). Among the principal charges they raise are that social constructionism explicitly or implicitly de- nies the existence of the natural world (or at least denies the possibility that we can know about it with some degree of accuracy); and, relatedly, that the approach stumbles over questions concerning whether or not some ideas are better representa- tions of the world than are others. Hacking also alleges that social constructionism inevitably re- produces a false binary between things that are real (and therefore have an entirely biophysical basis) and things that are socially constructed (and therefore have no biophysical basis whatsoever). As a result, Hacking contends, social construc- tionism fails to consider the possibility that some- thing can be both real and socially constructed (Hacking 1999, 31). However, sociologists of medicine have often supported this view, insofar as they believe that the social forces constructing the definition and treatment of illness are them- selves real phenomena that can be empirically studied (Brown 1995; Freidson 1971).

What many sociologists mean when they claim that an illness is socially constructed is that the experience of illness is shaped by social and cultural context. The earlier comments concern- ing the variability in the experience of illness across time (history) and space (culture) are il- lustrative. Many sociologists have pursued this line of reasoning and in so doing have given us powerful insights into the cultural fabric of ill- ness. Without question, the experience of cancer, epilepsy, or anxiety differs greatly historically and cross-culturally. Insofar as all illness gains mean- ing within the context of human society, all ill- ness is socially constructed. Yet, if all illnesses are social constructions, then there is no point in singling out any particular illness as being a so- cial construct. In short, the social constructionist perspective loses its expository or investigatory

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power when followed to its logical conclusion. Even here, however, a core conceptual contribu- tion of social constructionism to medical sociol- ogy remains intact: the distinction between the medical model, which emphasizes biological pa- thology, and the social model, which emphasizes the oft-neglected social causes and character of illness and impairment.

There still is the matter of the social construc- tion of illnesses as things. A strict constructionist position would implicitly or explicitly hold that no illness—cancer, epilepsy, or anxiety—exists outside our socially and historically bound mental constructions. These things exist at all, or exist as they are, only because we created them. Although not about illness, this position, which effectively denies the existence of the ontological world or the reality of what Searle (1995) calls "brute facts" (i.e., facts about the physical and natural world), was famously mocked in 1996 when the physicist Alan Sokal published a hoax article in Social Text, a leading journal representing the postmodern critique of science's alleged objectivity in the so- called science wars. Despite the attention given the Sokal hoax and the vocal attacks against the relativism of social constructionism, it is difficult to find scholars who make these strict types of claims. Even Hacking (1999) admits that most social constructionists avoid this pitfall.

A line of inquiry pursued by medical sociolo- gists that thoughtfully negotiates many of these logical problems emphasizes the social construc- tion of medical knowledge. As described by Brown (1995, 37), the social construction of ill- ness stresses the illness experience, whereas the social construction of medical knowledge "deals with the ways of knowing that are based on the dominant biomedical framework" and is chiefly concerned with professional beliefs and diagnoses. Of course, in our society it is impossible to fully disentangle these spheres given that people pri- marily make sense of and manage illness within the dominant biomedical framework (ibid.). In fact, it is difficult to overstate biomedicine's influ- ence in shaping the prevailing ideas about illness in advanced capitalist societies. Among other things, biomedicine plays a dominant role in organizing our experiences and complaints into disease categories.

A disease does not exist, so to speak, until the social institution of medicine creates a representa- tive diagnostic category (Brown 1995; Freidson 1971). For a disease to exist, in this limited sense, it must be identified. Disease begins with "social discovery" or the "the ways in which people, or- ganizations, and institutions determine that there is a disease or condition" (Brown 1995, 38). This is not to suggest that there are no biological facts concerning disease, nor is the point merely one of semantics. As noted earlier, we can claim that a disease as defined in a diagnostic category is a so- cial construction without implying that the suffer- ing it represents has no biological basis. After all, social constructionists are primarily interested in the empirical adequacy of their own descriptions of the social forces behind medical ideas, be these forces at odds with or supplementary to the em- pirical adequacy of the corresponding biomedical ideas. Contrary to Hacking's allegations, medical sociologists and anthropologists clearly recognize the possibility that a condition can be both real and socially constructed (Brown 1995; Freidson 1971). For example, such a both/and stance vis- à-vis the real/social-construction dichotomy has been advanced in the case of post-traumatic stress disorder (Young 1995), mood disorders (Horwitz 2002), and anorexia nervosa (Brumberg 2009), to name but a few. Additionally, the social construc- tionist approach clearly addresses how diagnoses interact with the individuals who are diagnosed, again acknowledging social constructionism's both/and analytic potential (Brown 1995; Freid- son 1971; Horwitz 2002).

But not all diseases, as captured in their diag- nostic categories, are fundamentally or primarily social constructions. Sometimes the factors be- hind the creation of a new disease category and its application are straightforwardly biological. A particular type of human distress is linked to bio- logical pathologies, and the new diagnosis repre- sents progress in medical knowledge. In these instances it might be meaningful to talk about the social practices that resulted in the discovery of the disease and its application, but it would not be particularly meaningful to assert that the dis- ease is a social construction simply because social activity led to its discovery. Here the deft histori- cal accounts of the social processes leading up the

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discovery of tuberculosis (Tomes 1998), end-stage renal disease (Peitzman 1992), and HIV/AIDS (Epstein 1996) come to mind. Often, however, there is a level of arbitrariness concerning why a particular set of attributes comes to be organized and represented under a biomedical diagnosis. Cases characterized by apparent arbitrariness are of most interest to sociologists (Brown 1995). These cases are interesting not because they have no connection to biological facts, but because they demonstrate that "an entity that is regarded as an illness or disease is not ipso facto a medi- cal problem; rather, it needs to become defined as one" (Conrad 2007, 5-6). Hence, the social construction of medical knowledge goes hand in hand with the process known as medicalization.


Biomedical Knowledge and Medicalization

Medicalization is the process by which an ever- wider range of human experiences comes to be defined, experienced, and treated as medical conditions.

One large sector includes the medicalization of deviance (Conrad and Schneider 1992). Calling a drunk an alcoholic or a gambler an addict are such examples. Social problems are also medicalized, as seen in the case of obesity and antisocial person- ality disorder (Lorber and Moore 2002). In some cases, "normal" human variation in such things as height, appearance, or temperament is defined as a medical problem and treated accordingly (Conrad 2007). In other instances, it is appropriate to speak of the medicalization of life itself. Medicine, Illich warned us, "can transform people into patients because they are unborn, newborn, menopausal, or at some other 'age of risk'" (Illich 1976, 78). The medicalization of life, therefore, includes nat- ural physical changes ranging from the profound (e.g., senility) to the trivial (e.g., male-patterned baldness). Biotechnology promises to expand the frontier even further as genetic research medical- izes the state of being "at risk" (Skolbekken 2008). Through medicalization, natural human variation, normal experiences, routine complaints, and hy- pothetical scenarios become medical conditions.

Drawing on social constructionist tenets, feminist scholars have demonstrated how wom-

en's bodies and experiences have been particularly susceptible to medicalization. There are many complex reasons for this tendency, including medicine's conceptualization of male physiology as normative. Borrowing Simone de Beauvoir's (1989) central insight, men and men's bodies represent the biomedical standard and women and women's bodies are the biomedical other. It is but a short step to define normal aspects of women's embodiment as biologically aberrant. For example, women's natural reproductive func- tions are routinely medicalized (e.g., pregnancy, childbirth, menstruation, menopause) (Ehren- reich and English 1973; Lorber and Moore 2002, 2007; Martin 1987). That being said, women have themselves been proactive in processes of medicalization—perhaps because it represents one of a few avenues afforded them to pursue their needs and gain access to resources in a so- ciety characterized by gender inequality (Lorber and Moore 2002, 2007; Riessman 1983; Theriot 1993).

Medicalization is a complex process. Although the general historical trend has been toward ever- greater medicalization, it can be a bidirectional process, as the demedicalization of homosexuality and masturbation attest (Conrad 2007; Clarke et al. 2003). In the 1970s, at the height of the natu- ral childbirth movement, childbirth became less medicalized (Lorber and Moore 2007). Although there is considerable evidence that this trend has reversed itself, the case of childbirth nevertheless illustrates the potential bidirectionality of medi- calization. In a somewhat similar vein, there are individuals and groups who reject a medical clas- sification of their behavior, as seen in the contem- porary examples of pro-anorexia and self-injury (e.g., cutting, burning, etc.) groups (Adler and Adler 2007; Pascoe and Boero 2008). The actions of these groups have not led to demedicalization per se—the diagnoses these groups reject remain well established—but they do demonstrate pock- ets of resistance to the medicalization of deviant behaviors. Specifically, these groups actively pro- duce counterconstructions of disordered eating and self-injury, affirm them as alternative life- styles, and forge virtual subcultures, all far from the dictates of medical practitioners and the clini- cal gaze. Likewise, although parents and parent


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groups opposing childhood immunization don't undermine established medical protocol, they do show some individual and collective opposition to unlimited medicalization (Casiday 2007).

There can also be different levels or degrees of medicalization (Conrad 2007). A condition isn't necessarily medicalized or not medicalized. For instance, although a small number of individuals are treated medically for short stature (Conrad 2007), it would be an overstatement to suggest that the general public perceives shortness as an illness. Similarly, individuals who are dissatisfied with their bodily appearance can seek to have it medically altered, but so far being unattractive isn't considered an illness. In contrast to these cases of medical treatment in the absence of ill- ness or disease, celiac disease is an illness without a medical treatment. In the case of celiac disease, the principal treatment is adherence to a gluten- free diet. Because celiac disease requires no medi- cal intervention, it exists somewhere between a medicalized and nonmedicalized condition (Copeland and Valle 2009). Contested illnesses also illustrate different degrees of medicalization insofar as some of these conditions are further down the road toward accepted medical condi- tions than are others. Sociologists have referred to emergent or partial medicalization (Dumit 2006), or specified different medicalized classi- fications and categories (Brown 1995) to denote that certain human experiences hit a snag in the process of becoming institutionally accepted medical phenomena.

It is also clear that the principal forces behind medicalization in the present era differ from those that expanded medicine's jurisdiction up through the first three quarters of the twentieth century (Clarke et al. 2003; Conrad 2005). Dramatic changes in the organization of medicine toward the end of the twentieth century, most notably the rise of corporate managed care and the cor- responding decline of physicians' professional power, underlie changing patterns of medical- ization. One can briefly summarize the standard twentieth-century story of medicalization as fol- lows: physicians carved out a professional niche for themselves by negating lay knowledge and practices and promoting the medical manage- ment of natural human experiences, social ills,

and personal problems (Conrad and Schneider 1992; Freidson 1970; Illich 1976). The medical- ization of childbirth and pregnancy are exemplars (Barker 1998; Wertz and Wertz 1979).

In contrast, when it comes to the forces pro- moting the expansion of medicine's jurisdiction in the current era, the role of physicians has de- clined in significance, while that of biotechnology (e.g., pharmaceuticals and genetics) and other corporate health industries (e.g., managed-care organizations), in tandem with the markets and consumers they create and serve, have increased in salience (Clarke et al. 2003; Conrad 2005). The popularity of elective cosmetic surgery and fertility treatments attests to consumer demands for medical solutions to personal problems and disappointments (Blum 2003; Conrad 2007). Direct-to-consumer pharmaceutical advertising encourages patients to ask their doctor about particular drugs to treat many previously normal or benign symptoms (e.g., toenail discoloration, heartburn) and to consider them specific medical conditions or diseases (e.g., dermatophytes, acid reflux disease) (Moynihan, Heath, and Henry 2002). The availability of a drug or other biotech treatment for a complaint significantly increases the likelihood that the compliant will be medi- calized. This raises serious allegations that biotech corporations are engaging in "disease mongering" (Angell 2004; Conrad 2007; McCrea 1983).

There are important consequences of medi- calization. By defining disease as a biological dis- ruption residing with an individual human body, medicalization obscures the social forces that in- fluence our health and well-being. Medicalization is depoliticizing: it calls for medical intervention (medication, surgery, etc.) when the best remedy for certain types of human suffering may be po- litical, economic, or social change. Medicalization can also grant the institution of medicine un- due authority over our bodies, minds, and lives, thereby limiting individual autonomy and func- tioning as a form of social control (Illich 1976; Zola 1972). Rarely, however, is medicalization exclusively the result of the medical profession's imperialistic claims. As patient consumers, we are increasingly active participants in the medicaliza- tion of our experiences as we earnestly seek to re- solve and legitimate our suffering.

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A social constructionist perspective that em- phasizes the biological arbitrariness of certain di- agnoses provides a powerful analytic framework for making sense of medicalization, or the process by which our complaints, disappointments, and experiences come to be defined and treated as medical conditions. In addition, such a perspec- tive circumvents many of the critiques of social constructionism. A close examination of the so- cial construction of contested illnesses further demonstrates these claims.


Contested Illnesses

Contested illnesses are conditions in which suffer- ers and their advocates struggle to have medically unexplainable symptoms recognized in orthodox biomedical terms, despite resistance from medi- cal researchers, practitioners, and institutions (Barker 2008; Conrad and Stults 2008; Dumit 2006). In the last several decades there has been a notable increase in the number of contested ill- nesses and contested illness sufferers (Barsky and Borus 1999; Henningsen, Zipfel, and Herzog 2007; Manu 2004; Mayou and Farmer 2002). Tens of millions of Americans are diagnosed with one of several syndromes characterized by a cluster of common, diffuse, and disturbing symp- toms, ranging from pain and fatigue to sleep and mood disorders. Some of these illnesses include chronic fatigue syndrome/myalgic encephalomyeli- tis (ME), fibromyalgia syndrome, irritable bowel syndrome, urologic chronic pelvic pain syn- drome, temporomandibular dysfunction (TMJ), tension headache, multiple chemical sensitivity disorder, Gulf War syndrome, and sick building syndrome (Barsky and Borus 1999; Nimnuan et al. 2001; Wessley 2004) many sufferers and some clinician advocates suggest that these disorders— frequently called "functional somatic syndromes" in the medical literature—are unique disease en- tities with unique natural histories and specific characteristics. At this time, however, there is tre- mendous medical uncertainty concerning these conditions (Mayou and Farmer 2002).

At the very core of the uncertainty is a lack of medical consensus concerning the biological nature of these illnesses. Despite fierce claims to

the contrary, none of these illnesses are associated with any specific organic abnormality. These con- ditions are not detectable in x-rays, blood tests, CAT scans, or any other high-tech diagnostic tool. Instead, they are diagnosed based on clinical observations and patients' subjective reports of symptoms. They are also diagnosed by exclusion, that is, after other possible explanations for the symptoms have been ruled out. Consequently, many physicians approach these "wastebasket" diagnoses, and those so diagnosed, with con- siderable skepticism. What is at issue is whether these syndromes are "real" (have organic biologi- cal origins) or not (are psychogenic, behavioral, or iatrogenic). With the exception of Gulf War syndrome, these disorders are highly feminized (Mayou and Farmer 2002). This unavoidable fact introduces ruminations that these diagnoses are modern-day labels for hysteria (Bohr 1995; Had- ler 1997a, b; Showalter 1997).

The subjective experiences of these illnesses stand in sharp contrast to the medical uncer- tainty surrounding them. Individual sufferers provide persuasive accounts of their distress (As- bring and Narvanen 2003; Barker 2005; Hayden and Sacks 1998; Koziol et al. 1993; Kroll-Smith and Floyd 1997). They report significant reduc- tions in functional abilities, health status, and quality of life, and little long-term improvement in well-being over time (Manu 2004; Nimnuan et al. 2001; Wessley, Nimnuan, and Sharpe 1999). Living with a contested illness, therefore, means managing a constellation of chronic and often debilitating symptoms, as well as coping with medical uncertainty, skepticism, and dis- paragement. Indeed these conditions are called "contested" illnesses precisely because of the clash between medical knowledge and patient experi- ence (Conrad and Stults 2008; Dumit 2006; Moss and Teghtsoonian 2008).

A related line of investigation addresses con- tested environmental illnesses, or illnesses that involve "scientific disputes and extensive pub- lic debates over environmental causes" (Brown 2007, xiv). A growing body of research dem- onstrates that when individuals claim to have an illness caused by exposure to environmental hazards, they meet with considerable resistance (Brown et al. 2004; Zavestoski et al. 2004a, b).

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Specifically, "corporate, government, and medical authorities" contest environmental illness claims in an effort to defend their organizational, pro- fessional, and economic interests (Cable, Mix, and Shriver 2008, 384). The principal contesta- tion is over claims that a specific condition (e.g., breast cancer, asthma, lung cancer) is caused by exposure to a particular environmental hazard. In some cases, however, there are also disputes about the existence of the illness itself (e.g., Gulf War Syndrome, multiple chemical sensitivity disorder) said to be caused by environmental toxins (Kroll- Smith et al. 2000). These latter cases are examples of contested illness as defined in this chapter, but all contested environmental illnesses showcase conflicts between biomedical and lay ways of knowing, and hinge on the inability of medical experts to legitimate lay peoples' symptoms and suffering (ibid., 4).

According to Joseph Dumit (2006, 578), contested illnesses "are researched, discussed, and reported on, but no aspect of them is settled medically, legally, or popularly." Pamela Moss and Katherine Teghtsoonian (2008, 7) describe contested illnesses as "dismissed as illegitimate— framed as 'difficult,' psychosomatic, or even non- existent—by researchers, health practitioners, and policy makers operating within conventional paradigms of knowledge." More than a decade ago, Brown (1995) identified two types of con- flictual or contested diagnoses: conditions that are generally accepted but to which a medical definition is not routinely applied (e.g., environ- mental diseases); and conditions that are not gen- erally accepted but to which a medical definition is nevertheless often applied (e.g., chronic fatigue syndrome). In both cases, for different reasons, sufferers have to convince the institution of bio- medicine that their condition is medical in char- acter. Thus, the term "contested" denotes that these illnesses exist somewhere between entirely discredited and fully legitimate diseases.

The particulars concerning the knowledge and experience of individual contested illnesses differ. For example, each condition is coupled with a body of medical research and a case defini- tion or diagnostic criteria (Dumit 2006; Wessley, Nimnuan, and Sharpe 1999). Having been the beneficiaries of more sympathy from mainstream

medical professionals, some of these classifica- tions are more widely applied (e.g., fibromyalgia syndrome, irritable bowel syndrome) than others (e.g., sick building syndrome, multiple chemical sensitivity disorder). These illnesses can also be differentiated on the basis of subjective features and accounts: the experience and meaning of living with fibromyalgia is distinct from that of multiple chemical sensitive disorder; and individ- uals and groups coalesce around specific diagno- ses. Nevertheless, these illnesses share a number of key similarities that account for their contested status.

Given that sufferers and their advocates want medically unexplainable symptoms to be medi- cally recognized and legitimated, contested ill- nesses are examples of conditions for which individual patients and patient groups demand medicalization.2 That is, they are evidence of a shift in the engines of medicalization: the de- mands of patient-consumers, rather than the professional agendas of physicians, increasingly underlie medicine's jurisdictional expansion (Conrad 2005). In addition, contested illness and medicalization are tied together conceptually via social constructionism: "Both medicalization and contested illness highlight that illness categories (usually, but not always, diagnoses) are socially constructed and not automatically ascertained from scientific and/or medical discoveries" (Con- rad and Stults 2008, 332). What follows is a descriptive account of the social construction of contested illnesses.

Of specific interest to us are the shared factors and influences in the social processes by which contested illnesses were created and propagated. These include public intolerance of or anxiety about medically unexplainable but highly com- mon symptoms; the dynamics of doctor-patient encounters and the corresponding diagnostic imperative; lay knowledge production and the emergence of illness identities and communities; and bureaucratic and institutional demands and practices (Aronowitz 1997; Barsky and Borus 1995; Brown 1995; Freidson 1971; Showalter 1997). I address each in turn.

When delineating the factors contributing to the social construction of contested illnesses, ground zero, so to speak, is the ubiquity of the


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symptoms they represent. Contested-illness symp- toms are widespread in the general public and are particularly common among women (Fillingim 2000; Lorber and Moore 2002; Mayou and Farmer 2002). For example, pain and fatigue are the most common physical aliments reported by the general public (Barsky and Borus 1999). Fa- tigue is so commonly reported that the acronym TATT (tired all the time) now appears regularly in medical and popular media. The additional symptoms that make up these disorders, includ- ing mood, sleep, and bowel disturbances, are also widely prevalent (Mayou and Farmer 2002). This is not to suggest that these disorders are much ado about nothing. Whether these symptoms are common or not, their cumulative effect can be overwhelming. Aggravating this tendency is our cultural impatience with discomfort (Barsky and Borus 1995; Kleinman 1988; Kleinman and Ware 1992).

Accordingly, individuals turn to the institu- tion of medicine for an explanation and remedy. However, even with extensive and very expensive clinical workups, many common symptoms sim- ply can't be explained in biomedical terms (Barsky and Borus 1995; Mayou and Farmer 2002). So it is that sufferers describe a protracted and trou- bling road into medical uncertainty. "Nothing is wrong," they are told by one doctor after another. And yet they feel very ill indeed. In turn, suffer- ers must reconcile a subjective certainty of their symptoms with a lack of objective medical evi- dence regarding the existence of their symptoms (Asbring and Narvanen 2001). Along the way, in- dividuals experience real or perceived accusations that they are faking their symptoms, malingering, or "just plain crazy" (Dumit 2006, 578). Their credibility is called into question. Given the gulf between their distress and the growing mound of negative medical tests, even sufferers sometimes begin to doubt their own grip on reality (Asbring and Narvanen 2003; Banks and Prior 2001). Not surprisingly, many individuals doggedly continue their search for a biological explanation in an ef- fort to prove to medical professionals, their fami- lies, and themselves that they really are ill (Dumit 2006). In her research on chronic fatigue syn- drome, Pia Bülow (2008) aptly calls this arduous search the "pilgrimage."

The dynamics of countless medical encoun- ters that make up many such pilgrimages stand behind the creation and application of these diag- noses. There are many reasons that doctor-patient encounters favor diagnosing. For the physician, a diagnosis represents codified knowledge about a patient's experience and indicates a treatment protocol. For the patient, a diagnosis gives mean- ing and legitimacy to worrying symptoms and provides a framework for what he or she is facing (Balint 1957). Thus, when a doctor encounters a patient with distressing symptoms, both parties benefit from a diagnosis: it effectively legitimizes both parties and the doctor-patient relationship itself. Before contested-illness diagnoses could serve this legitimating purpose, however, they had to be created.

The creation of these diagnoses, in terms of both the specific case definitions and the actors advancing those definitions, differ in their partic- ulars (Barsky and Borus 1999; Wessley, Nimnuan, and Sharpe 1999), but two general points can be made. First, each of these diagnoses is a descrip- tive category or analytic abstraction that stands for otherwise medically unexplainable symptoms (Mayou and Farmer 2002). It has been argued that many medical specialties and subspecialties have at least one functional diagnosis at their disposal to manage a large population of patients whose symptoms lack an understood biologi- cal cause; hence the creation of several different, overlapping syndromes (e.g., rheumatology has fibromyalgia, neurologists have tension headache, gastroenterologists have irritable bowel syndrome, gynecologists have chronic pelvic pain) (Barsky and Borus 1999; Nimnuan et al. 2001). Second, although none of these diagnoses would have come about without the efforts of key players who pushed for their creation—"claims-makers," as Conrad and Schneider (1992) call them—those that were advanced primarily by specialists in the medical mainstream have moved further along in the medicalization process than have those that relied more heavily on lay advocacy or were as- sociated with marginal medical professionals. Examples of the former include fibromyalgia and irritable bowel syndrome. Examples of the latter include multiple chemical sensitivity and chronic fatigue syndrome.3


The Social Construction of Illness 155

Although some support from sympathetic medical professionals is a necessary part in disease discovery, medical professionals also resist discov- ery (Brown 1995). Again, this resistance is what defines contested illnesses. Reflecting the most contested end of the continuum, an article pub- lished in the prestigious 

Annals of Internal Medi- cine referred to multiple chemical sensitivity as a "cult" (quoted in Kroll-Smith and Floyd 1997, 29). But even the least contested of the con- tested illnesses, fibromyalgia, has been resolutely attacked. The essence of the charge, captured in the following quote from a leading rheumatology journal, points to the social construction of the diagnosis: "No one can have fibromyalgia. Fi- bromyalgia is just a word we use to represent the situation of someone complaining about wide- spread chronic pain, fatigue, and sleep distur- bances. . . . It is not a disease, it's a description" (da Silva 2004, 828). The creation of contested illness diagnostic categories represents a decisive move toward the medicalization of common physical and mental distress, but none of these conditions is yet fully medicalized. In the absence of biomedical markers or efficacious treatments, medical professionals will continue to be skepti- cal of further medicalization.

Where diagnoses have been created—by what- ever path and against whatever crystallized medi- cal opposition—a number of factors have ensured their widespread application. First among these is a tendency within medicine to favor assigning ill- ness over health. This is called the "decision rule" (Freidson 1971), but it might also be called the "diagnostic imperative." Concerned about their patients and trained to be proactive, physicians prefer to diagnose illness rather than health. Con- sequently, the existence of these diagnoses gives medical practitioners a new tool for managing the steady influx of patients with otherwise un- explainable symptoms. Under the weight of the decision rule, even physicians who are skeptical about contested illnesses are inclined to diagnose them.

The diagnosing behavior of physicians is only one side of the story. Once contested illnesses ex- ist, again in the narrow sense of the creation of a diagnostic classification, individuals in distress encounter them. This makes possible perhaps the

most crucial moment in the patient's pilgrimage (Bülow 2008)—the moment when her suffer- ing is at last given a name. A diagnosis brings a coherence and order to a collection of symptoms that have heretofore been incoherent and un- ruly. Perhaps even more important, the diagno- sis validates the sufferer and her suffering after a protracted period of disparagement (Asbring and Narvanen 2003; Barker 2005; Dumit 2006). In practical terms, a diagnosis is required to receive health care, disability compensation, and other social reparations. For all these reasons, individu- als often strongly identify with their diagnosis. These are also all key factors that motivate suf- ferers to demand greater medicalization of their condition.

The means by which individuals encounter their diagnosis is also of interest. In some in- stances, the patient learns about her diagnosis only when a sympathetic (or agnostic) medical provider diagnoses her. Increasingly, however, individuals discover their diagnosis without the aid of their health-care provider. Some happen upon their diagnosis by way of a family member or friend battling the same symptoms. Others come to their diagnosis after reading a magazine or newspaper article that describes a condition that fits their symptoms to a tee. As the Internet becomes a primary source of health-related infor- mation (Fox and Fallows 2003), an ever-greater number of individuals find their diagnosis by typ- ing their symptoms into an online search engine. In turn they connect to an extensive network of commercial and nonprofit websites that describe their symptomatic experience as evidence of a diagnosable disease about which they were previ- ously unaware (Barker 2008; and see Conrad and Stults, this volume). Now that the FDA has ap- proved the first drug for the treatment of fibro- myalgia, some individuals find out they have this disease courtesy of a direct-to-consumer phar- maceutical advertisement. Although common- place, self-diagnosis is insufficient; individuals need medical corroboration. Sometimes doctors are amenable, especially given the inertia of the decision rule. But many clinicians are hesitant to diagnose patients with a contested illness. Some patients go from doctor to doctor in search of a willing diagnostician. For this reason, Dumit

156 Handbook of Medical Sociology

(2006, 577) calls these "illnesses you have to fight to get." Again, issues surrounding self-validation and health/disability compensation make the fight for a diagnosis particularly salient.

Illness support communities also play an important role in the social construction of contested illnesses. Although patient advocacy, education, and mutual support are increasingly common in relation to many illnesses, contested- illness sufferers are particularly eager to affiliate with those who share their experiences. To use Bülow's (2008) metaphor again, these commu- nities provide a welcomed shelter for the weary pilgrim. Through a variety of sources (e.g., best- selling self-help books, real and virtual support groups, and a host of advocacy organizational websites), individuals learn the biological facts— those denied by the uninformed in the medical mainstream—about their "real" disease. They also learn how to manage symptoms, deflect medical derision, and find a friendly provider who will diagnosis and treat their disease. Illness support communities produce and disseminate knowl- edge of sufferers' shared embodied experiences in an effort to support fellow sufferers, produce logical accounts of their distress, and challenge medical critics (Barker 2008; Dumit 2006; Kroll- Smith and Floyd 1997). At the level of experi- ence, therefore, affiliation with a contested-illness community validates an individual's diagnosis and the diagnostic category. It would be difficult to overstate the degree to which the Internet has increased the reach and influence of these com- munities (Barker 2008; and see Conrad and Stults, this volume).

In this way, contested illnesses are examples of what Hacking (1999) calls "interactive kinds of things." Herein lies another important factor fueling the development of contested illnesses. In the case of interactive kinds of things, indi- viduals react to being classified in particular ways. Unlike calling a quark a quark, which Hacking notes makes no difference to the quark, an indi- vidual reacts to being diagnosed with fibromyal- gia or chronic fatigue syndrome or irritable bowel syndrome. Individuals come to see themselves as having a particular disease and reorient their symptoms and sense of self in relationship to that disease designation. This is starkly seen with re-

spect to the self-validation that being diagnosed represents. The diagnosis launches a particular illness career, contributes to the creation of an ill- ness identity, and makes possible affiliation with an illness community. Additionally, the creation and application of these diagnoses result in their reification: although these diagnoses are concep- tual abstractions, they have come to garner status as "things." Because contested illnesses include many common symptoms and provide no ex- clusionary criteria, sufferers can readily see the parallels between their own illness experience and the illness experience of fellow sufferers. Not only are contested illnesses interactive kinds of things in terms of how the designation interacts with the individual so designated, but their interac- tive quality also creates a cultural milieu wherein even more individuals, through their brief or extensive encounters with illness support com- munities, come to locate themselves within these designations.

Finally, organizational imperatives and dy- namics also critically influence "the type and amount of conditions discovered" (Brown 1995, 45). Patients with unexplainable symptoms can be very costly. Although managed-care organi- zations erect barriers to limit health-care utiliza- tion, these barriers force patients to "express their 'disease' in more urgent and exaggerated terms in order to gain access to the physician" (Barsky and Borus 1995, 1931) Additionally, health-care providers use these diagnoses to help patients gain access to health-care resources within the constraints of managed care. Curiously, a case can also be made that these diagnoses might, in the end, work to the financial advantage of managed-care organizations. When patients with medically unexplainable symptoms are diagnosed with a contested illness in its early stages, health- care costs are reduced by limiting the number of expensive diagnostic tests, referrals to special- ists, and surgical procedures that otherwise char- acterize the contested-illness experience. Because the standard treatment protocol is often relatively inexpensive (e.g., pain, sleep, and antidepressant medications, as well as behavioral and exercise therapies), managed-care organizations may use contested-illness diagnoses as part of their agenda for cost containment.

The Social Construction of Illness 157

In sum, contested illnesses reveal the concep- tual union between social constructionism and medicalization. Specifically, contested illnesses are social constructions that give biomedical mean- ing to a broad range of distress and suffering that characterize the lives of many individuals, especially women. The contested status of these diagnoses, however, signifies only partial medicali- zation. Whereas advocates for contested illnesses demand greater medicalization as a route to legiti- mate the sufferer and secure necessary health and welfare reparations, critics hope to stem the medi- calization tide to which these diagnoses contribute (Conrad and Stults 2008). There are two obvious paths toward increasing the degree to which con- tested illnesses are medicalized. The first includes identifying biological markers upon which the "social legitimacy and intellectual plausibility of contemporary disease categorizations often hinge" (Shostak, Conrad, and Horwitz 2008, 310). For example, recent reports of potential genetic varia- tions associated with restless leg syndrome bode well for this condition's further medicalization (Shostak, Conrad, and Horwitz 2008). The sec- ond path includes a specific treatment option. Based on my current research, for example, suffer- ers and their clinician-advocates have enthusiasti- cally embraced the recent FDA approval of the first drug specifically for the treatment of fibromyalgia syndrome, more for the drug's disease-legitimating potential than for its therapeutic efficacy.

It is worth restating what it means to call con- tested illnesses socially constructed. As they cur- rently exist, these diagnoses are best understood as intellectual categories whose social etiological is more clearly understood than is their biomedi- cal etiology. The diagnostic criteria for these ill- nesses are descriptive, subjectively determined, and inexactly and inconsistently applied. The cre- ation of these diagnostic categories has more to do with the social dictates of clinical encounters, the influence of illness communities, and insti- tutional demands than with scientific or medical discoveries. Contested illnesses are very large con- ceptual tents under which many dissimilar types of symptoms and distress can be located. What is more, these types of symptoms and distress are widespread in general, and particularly common among women.

Calling these syndromes socially constructed, however, does not deny the reality of their symp- toms. It is clear that the suffering of those so di- agnosed is real: their quality of life is significantly eroded and they would do almost anything to be well (Asbring and Narvanen 2001; Bülow 2008; Kroll-Smith and Floyd 1997). Although the diagnostic labels are social constructions, they might, in fact, represent a number of things that have biomedical correlates that are currently un- known. The socially constructed meanings that mediate our experience of a disorder or condition can be overly simplistic, imperfect, or vague, but that does not mean that the symptoms that com- prise the disorder have no biological basis or that they would cease to exist in the absence of a spe- cific diagnosis. Instead, as Hacking has claimed, things can be 

both 

socially constructed 

and real; this may, in fact, prove to be the case with one or more contested illnesses.

Conclusion

All illnesses, not just those that are contested, are in some general sense socially constructed. With- out exception, the meaning and experience of all illness is innately social. In this regard we can speak of the social construction of epilepsy. To be sure, the seizures are real. At the same time, however, the meaning of the seizures (possession vs. disease) and their experience (stigmatized vs. medicalized) is socially contingent. This chapter has emphasized the social construction of illness in a more limited or restricted sense, focusing on the social creation of new biomedical diagnostic categories for hu- man experiences that do not lend themselves to such categorization, with contested illnesses as a case in point. A restricted definition of the social construction of illness gives medical sociologists a powerful expository tool for charting the con- crete social forces that promote medicalization. Insofar as laypeople, not the medical profession, demand the medicalization of contested illnesses, the creation of contested-illness categories is para- digmatic of the shifting engines of medicalization (Conrad 2005).

It is important to put the social construc- tion of contested illnesses into larger perspective.

158 Handbook of Medical Sociology

Many widely accepted disorders are also charac- terized by uncertainties. Many uncontested con- ditions lack diagnostic precision or are difficult to diagnose (e.g., asthma, osteoarthritis, rheumatoid arthritis); the causal mechanisms of some illnesses are poorly understood or unknown (e.g., lupus, multiple sclerosis, scoliosis, allergies); and many conditions respond poorly or only marginally to medical therapeutics (e.g., Alzheimer's disease, pancreatic cancer). None of these disorders are discredited as biologically unreal on such grounds. Some of these conditions can hardly be in doubt, given that they dramatically and unambiguously manifest themselves in bodily disfigurement or death. But others are neither disfiguring nor deadly. In short, imperfect medical knowledge is ubiqui- tous to contemporary biomedicine.

One might argue that contested illnesses are but exaggerated or extreme cases of contempo- rary medicine's inevitable encounter with uncer- tainty. To a large degree, this can be attributed to the intrinsic difficulties many chronic conditions pose to conventional biomedicine, which proved far more effective in slaying our earlier infec- tious enemies. But biomedical uncertainty alone is an insufficient explanation. Biomedicine's lack of certitude about contemporary illnesses is also the result of its dealings with an ever-expanding range of complex human distresses. Uncertainty grows as patients and clinicians alike seek to frame multifaceted forms of human suffering within the confines of the conventional biomedical model. That is, uncertainty grows as we push for greater medicalization. Most of us live or will live with a number of long-term afflictions that are medically diffuse and elusive but that nevertheless, negatively and very tangibly, impact the quality of our lives. The creation of contested-illness diagnoses puts into sharp relief our sociocultural response to this larger dilemma, suggesting that we either come to acknowledge and address the normalization of suf- fering, or expect to see the creation of many new contested-illness diagnoses in the future.

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