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The Sociology of Mental Illness Case Study
Chapter 5
“II The Meaning and Experience of Illness Chapter 5The Social Meanings of Illness Chapter 6 The Experience of Disability, Chronic Pain, and Chronic IllnessChapter 7 The Sociology of Mental Illness Our commonsense understandings of the world tell us that illness is a purelybiological condition, definable by objectively measured biological traits. As wewill see in Part II, however, definitions of illness vary considerably over timeand across social groups. In Chapter 5, we explore the social meanings of illnessand consider how ideas about the nature and causes of illness have changed his-torically, from biblical explanations that attributed illness to punishment for sin tomodern explanations that attribute illness to risky lifestyles. We also examinehow defining something as an illness can act as a form of social control.Whereas Chapter 5 discusses the meaning of illness in the abstract, Chapter 6looks at the consequences of chronic illness, chronic pain, and disability for indi-viduals. Beginning with a discussion of how Western society historically has trea-ted those who have chronic illnesses and disabilities, we then consider themodern experience of illness and of chronic pain, including the processesinvolved in responding to initial symptoms, searching for mainstream or alterna-tive therapies, and coming to terms with a changed body and self-image.” “LEARNING OBJECTIVESAfter reading this chapter, students should be able to:•Understand how cultural explanations for illness have changed over thecenturies.•Compare the medical and sociological models of illness.•Assess the impact of medicalization.•Use and critique the concept of a sick role.According to Lunesta.com, a website aimed at the general public and run by thecompany that manufactures the popular insomnia drug Lunesta:Approximately 20 million adults in the U.S. suffer from insomnia—a medicalcondition in which difficulty falling asleep and/or staying asleep has a negativeimpact on the next day…Symptoms [include] difficulty falling asleep, wakingup frequently during the night, difficulty returning to sleep, waking up tooearly in the morning, unrefreshing sleep, daytime sleepiness, [or] difficultyconcentrating…. It [insomnia] is a serious medical condition that can affect yourmind and body [and cause] daytime fatigue, irritability, decreased feelings of well-being, decreased ability to concentrate, decreased ability to problem solve, [and]difficulty in making decisions.To encourage readers to seek (drug) treatment for sleep problems, the websitenot only stresses the need to seek medical help but also offers suggestions on what tosay when seeking help from doctors; information on getting Lunesta at discountedprices; and web links to national nonprofit organizations (partly funded by pharma-ceutical manufacturers) that focus on identifying and treating sleep problems.Does this seem like a reasonable way to deal with sleep problems—many ofwhich are caused by nonmedical issues such as working odd hours, job stress, anover-firm mattress, or watching late-night television? According to many doc-tors, the answer is yes. Diagnoses with insomnia have skyrocketed in recentyears, following intensive marketing campaigns for these drugs—even thoughresearch suggests that they provide only a few extra minutes of sleep per nightbut can cause traffic accidents, crippling falls, and amnesia-like episodes duringwhich individuals may eat, walk, engage in sex, or do other activities theywould not consciously have chosen (Moloney, Konrad, and Zimmer, 2011).This raises the question: What do we mean when we say that something is adisease? In this chapter, we examine the meaning of illness and disease. We lookfirst at how people have explained illness across history and then at the medicaland sociological models of what illness is and means. Then we consider how” “medicine can act as an institution of social control, highlighting the processthrough which behaviors or conditions become defined as illnesses, the conse-quences of these definitions for individuals and society, and the potential conse-quences of our growing reliance on genetic explanations for disease.EXPLAINING ILLNESS ACROSS HISTORYThroughout history, people have feared illness. To relieve their anxiety andmake the world seem less frightening, they typically have sought explanationsfor why illness occurs and why it strikes some rather than others. Most often,these explanations defined illness as a deserved punishment for sinful or foolishbehaviors and blamed individuals for their own illnesses (Brandt and Rozin,1997; Weitz, 1991). Such explanations provide psychological reassurance byreinforcing people’s belief in a“just world”in which punishment falls only onthe guilty (Meyerowitz, Williams, and Gessner, 1987). For example, both theJewish and Christian Bibles describe leprosy as punishment for sin. As a result,throughout the Middle Ages, Christian society required anyone diagnosed withleprosy to participate in a special mass for the dead, in which a priest wouldshovel dirt on the individual’s feet to symbolize his or her civil and religiousdeath. From then on, the individual was legally prohibited from entering publicgathering places, washing in springs or streams, drinking from another’s cup,wearing anything other than the special“leper’s dress,”touching anything beforebuying it, and so on (Richards, 1977:123–124).By the early nineteenth century, pre-scientific ideas about illness had begunto erode as the idea grew, especially among the elite, that scientific principlescontrolled the natural order. According to the new scientific thinking, illnessoccurred when biological forces combined with personal susceptibility. Doctors(still lacking a concept of germs) argued that illness occurred when personswhose constitutions were naturally weak or had been weakened by unhealthybehaviors came in contact with dangerousmiasma, or air“corrupted”by foulodors and fumes. As a result, whereas earlier theories had blamed illness onimmoralbehavior, these new theories blamed illness onunhealthybehavior.As the history of cholera shows, however, these new ideas still allowed thehealthy to blame the ill for their illnesses. Cholera first appeared in the Westernworld in about 1830, killing its victims suddenly and horrifyingly through over-whelming dehydration brought on by uncontrollable diarrhea and vomiting.Cholera is caused by waterborne bacteria generally transmitted when humanwastes contaminate food or drinking water. It most often strikes poor personsbecause they are the most likely to lack clean water and to be weakened byinsufficient food, clothing, or shelter.To explain why cholera had struck, and why it struck the poor especiallyhard, early nineteenth-century doctors asserted that cholera could attack onlyindividuals who had weakened their bodies through improper living (Risse” “1988; Rosenberg, 1987). According to this theory, the poor caused their ownillnesses, first by lacking the initiative required to escape poverty and then bychoosing to eat an unhealthy diet, live in dirty conditions, or drink too muchalcohol. Thus, for example, the New York City Medical Council concluded in1832 that“the disease in the city is confined to the imprudent, the intemperate,and to those who injure themselves by taking improper medicines”(Risse,1988:45). Conversely, doctors (and their wealthy patrons) assumed that wealthypersons would become ill only through gluttony, greed, or by“innocently”inhaling some particularly noxious air. This theory of illness allowed the upperclasses to adopt the new scientific explanations for illness while retaining oldermoralistic assumptions about ill people and avoiding any responsibility to aidthe poor or the ill. In sum, instead of believing that immorality directly causedillness, people now believed that immorality left onesusceptibleto illness.Despite the tremendous growth in medical knowledge about illness duringthe past 200 years, popular explanations for illness have remained remarkably sta-ble. Theories connecting illness to sin continue to appear, as do theories thatconceptualize illness as resulting from poorly chosen (although not necessarilysinful) behaviors and attitudes (Brandt and Rozin, 1997; Tesh, 1988). Parentsstill act as if colds are caused by playing in the rain rather than exposure toviruses, and public health authorities more often focus on urging people to exer-cise than on addressing the conditions (such as dangerous neighborhoods, lack ofgyms, or the need to hold down two jobs) that keep people from exercising.Similarly, author Rhonda Byrne, in her hugely popular bookThe Secret, arguesthat individuals“attract”health, wealth, sickness, or poverty to themselves simplyby thinking about these conditions (Byrne, 2006:130–132). In sum, theories ofillness that focus on individual responsibility continue to reinforce existing socialarrangements and to help us justify our tendency to reject, mistreat, or simplyignore those who have illnesses.MODELS OF ILLNESSBut what do we mean when we say something is an illness? The answer is farfrom obvious. Most Americans are fairly confident that someone who has a coldor cancer is ill. But what about women whose bones have become brittle withage; men who have bald spots or enlarged prostates; or young boys who havetrouble learning, drink excessively, or enjoy fighting? Depending on whomyou ask, these conditions and actions may be defined as normal human varia-tions, illnesses, bad character, or bad behavior. As this suggests, defining illnessis not a simple task. In this section, we explore how doctors and sociologistsapproach these issues.The Medical and Sociological Models of IllnessThemedical model of illnessrefers to what doctors typically mean when theysay something is an illness. This medical model is not accepted in its entirety by” “body’s normal ability to regenerate bone; and men develop urinary problemswhen their prostates grow excessively large and unnaturally compress the urinarytract. By extension, the medical model assumes that each illness has specific fea-tures that any doctor can recognize (Mishler, 1981).In contrast, the sociological model of illness begins with the statement thatillness (as the term is actually used) is asubjectivelabel, which reflects personal andsocial ideas about what is normal as well as scientific reasoning (Weitz, 1991).Sociologists point out that ideas about normality differ widely across both indi-viduals and social groups. A height of 4 feet 6 inches would be normal for aPygmy man, but not for an American man. Drinking three glasses of wine aday is normal for Italian women but could lead to a diagnosis of alcoholism inAmerican medical circles. In defining normality, therefore, we need to look notonly at individual bodies but also at the broader social context.Moreover, even within a given group,“normality”is a range and not anabsolute. The median height of American men, for example, is 5 feet 9 inches,but most people would consider someone several inches taller or shorter thanthat as still normal. Yet medical authorities routinely decide what is normal andwhat is illness based not on objective markers of health and illness, but on arbi-trary, statistical cutoff points—deciding, for example, that anyone in the fourthpercentile for height or the fiftieth percentile for cholesterol level is ill (Cohenand Cosgrove, 2009; Hadler, 2008).Similarly, sociologists note, the process of assigning diagnoses to individualsis far from objective. For example, African American patients with chest painoften receive diagnoses of indigestion, whereas white patients more often receivediagnoses of heart disease. Meanwhile, French doctors often attribute patients’headaches to liver problems, whereas US doctors more often attribute them toneurological causes (Hoffman and Tarzian, 2001; Nelson, Smedley, and Stith,2002; Payer, 1996).Because the medical model assumes illness is an objective, scientificallydetermined category, it also assumes that moral judgments play no role in label-ing conditions or behaviors as illnesses. Sociologists, on the other hand, arguethat illness is inherently a moral category because deciding what is illness alwaysmeans deciding what is good or bad. When, for example, doctors label meno-pause a“hormonal deficiency disease,”they label it an undesirable deviationfrom normal. In contrast, many women consider menopause both normal anddesirable, and enjoy the freedom from fear of pregnancy that menopause brings(Avis and McKinlay, 1991). In the same manner, when we define cancer, polio,or diabetes as illnesses, we judge the bodily changes these conditions produce tobe both abnormal and undesirable rather than simply normal variations in func-tioning, abilities, and life expectancies. (Conversely, when we define a conditionas healthy, we judge it to be normal and desirable.)Similarly, whenever we label someone ill, we suggest there is somethingundesirable about that person. By definition, an ill person is one whose actions,abilities, or appearance don’t meet socialnorms: expectations within a givenculture regarding proper behavior or appearance. Such a person is typically con-sidered less whole and less socially worthy than those deemed healthy. Illness,”
“then, like virginity or laziness, is amoral status: a social condition that we believeindicates the goodness or badness, worthiness or unworthiness, of a person.From a sociological standpoint, illness is not only a moral status (such ascrime or sin) but also a form ofdeviance(Parsons, 1951). To sociologists, label-ing something deviant does not necessarily mean that it’s immoral. Rather, devi-ance refers to behaviors or conditions that socially powerful persons within agiven cultureperceive, whether accurately or inaccurately, to be immoral or toviolate social norms. We can tell whether behavior violates norms (and thereforewhether it’s deviant) by seeing if it results innegative social sanctions. Thisterm refers to any punishment, from ridicule to execution. (Conversely,positivesocial sanctionsare rewards, ranging from token gifts to knighthood.) Thesesocial sanctions can be enforced by parents, police, teachers, and peers, as wellas doctors. Later in this chapter, we’ll look at some of the negative social sanc-tions imposed against ill persons.For the same reasons that the medical model doesn’t recognize themoralaspects of illness labeling, it doesn’t recognize thepoliticalaspects of that process.Although doctors sometimes participate actively in these political processes—arguing, for example, that insurance companies should cover treatment for newlylabeled conditions such as fibromyalgia—few doctors recognize how politicsunderlie the illness-labeling process in general. In contrast, sociologists point outthat any time a condition or behavior is labeled an illness, some groups will benefitmore than others, and some groups will have more power than others to enforcethe definitions that benefit them. As a result, open political struggles often emergearound illness definitions (a topic we’ll return to later in this chapter). For example,US vermiculite miners who were constantly exposed to asbestos dust in their workand who now have strikingly high rates of cancer have fought with insurance com-panies and doctors in clinics, hospitals, and the courts to have“asbestosis”labeledan illness. Meanwhile, the mining companies and the doctors they employed haveargued that no such disease exists and that the high rates of cancer in mining com-munities are merely coincidences (Schneider and McCumber, 2004).Finally, the medical model of illness assumes that each illness has not onlyunique symptoms but also a unique biological cause (Mishler, 1981). Modernmedicine assumes, for example, that tuberculosis, polio, and other infectiousdiseases are each caused by a unique microorganism. Similarly, doctors continueto seek limited and unique causes of heart disease and cancer, such as high-cholesterol diets and exposure to toxins. Yet even though illness-causing micro-organisms exist everywhere and environmental health dangers are common,relatively few people become ill as a result. By the same token, although choles-terol levels and heart disease are strongly correlated among middle-aged men,many men eat high-cholesterol diets without developing heart disease, andothers eat low-cholesterol diets but die of heart disease anyway. Belief in uniquebiological causes discourages medical researchers from asking why individualsrespond in such different ways to the same health risks and encourages research-ers to search formagic bullets—a term used by Paul Ehrlich, discoverer of thefirst effective treatment for syphilis, to refer to drugs that almost miraculouslyprevent or cure illness by attacking one specific etiological factor.” “In sum, to sociologists who work from a critical perspective, illness is asocial construction, something that exists in the world not as an objective con-dition, butbecause we have defined it as existing. This doesn’t mean that the viruscausing measles does not exist or that it doesn’t cause a fever and rash. It doesmean, though, that when we talk about measles as an illness, we have organizedour ideas about that virus, fever, and rash in only one of the many possible ways.In another place or time, people might conceptualize those same conditions asmanifestations of witchcraft, as a healthy response to the presence of microbes, oras some other illness altogether. To sociologists, then,illness, likecrimeorsin,refers to biological, psychological, or social conditions subjectively defined asundesirable by those within a given culture who have the power to enforce suchdefinitions.MEDICINE AS SOCIAL CONTROLIn everyday life, we use the wordmedicineto refer to the drugs that doctors pre-scribe. But we can also use the wordmedicineto refer to the world and culture ofdoctors. For example, we might say that modern medicine is an exceedinglycomplex enterprise or that modern medicine primarily focuses on treating diseaserather than on looking for environmental causes of illness. Even more broadly,sociologists refer to medicine as aninstitution. Sociologists use the terminstitutionto refer to enduring social structures that meet basic human needs, such as thefamily, religion, and education. When we talk of medicine as an institution, werefer to the world and culture of doctors as well as to the economic, social, andpolitical underpinnings of that world. We might, for example, talk about how thepower of medicineas an institution—doctors, hospitals, the medical way of think-ing about the world, and so on—has grown over the past century. Importantly,sociologists (and others) increasingly talk aboutbiomedicineas an institution.Biomedicinerefers to the ways in the which medicine, science and technologyoften now work together as one social institution—an institution that can increaseor reduce the power of medicine as an institution (Clarke et al., 2003, 2010). (Forsimplicity’s sake, we will primarily use the termmedicinein this book.)One of the central concepts in the sociology of health and illness is the ideathat medicine is, among other things, an institution of social control.Socialcontrolrefers to the formal and informal methods used by a social group toensure that individuals conform to social norms and to protect the existing bal-ance of power among groups. When we say that medicine is an institution ofsocial control, we are saying that medicine is a basic structure of our societythat sometimes serves to“keep people in line.”For example, doctors have thepower to decide whether someone is a malingerer who should be shunned or istruly ill and deserves sympathy. In such a situation, doctors act associal controlagents: individuals or groups (such as parents and religious leaders) that enforcesocial norms.Contemporary Issues: Citizenship and Biomedicineexplores how thebroader institution of biomedicine now plays a powerful role in deciding whocan become a US citizen” “definition of the situation. Not surprisingly, doctors often play a major role inmedicalization because medicalization can increase their power, the scope oftheir practices, and their incomes. For example, during the first half of the twen-tieth century, improvements in the standard of living coupled with various pub-lic health measures substantially reduced the number of seriously ill children. As aresult, the market for pediatricians declined, and their focus shifted from seriousillnesses to minor childhood illnesses and well-baby care. Pediatrics thus becameless well paid, interesting, and prestigious. To increase their market while obtain-ing more satisfying and prestigious work, some pediatricians have expanded theirpractices to include children whose behavior concerns their parents or teachersand who are now defined as having attention-deficit hyperactivity disorder(ADHD) (Conrad, 2007). Doctors have played similar roles in medicalizingcrooked noses, obesity, drinking during pregnancy, impotence, and numerousother conditions (Grob and Horwitz, 2009; Loe, 2004).In other instances, however, doctors have actively opposed medicalization(Swoboda, 2008). This by definition is the case with anycontested illness: dis-tressing and painful symptoms that affected individuals believe constitute anillness even though many doctors disagree. For example, fibromyalgia is charac-terized by many common symptoms, including pain, dizziness, insomnia, andheadache. Moreover, no blood test or X-ray can identify an individual as havingfibromyalgia. As a result, many doctors question whether it really is a disease.The same is true for chronic fatigue syndrome, multiple chemical sensitivity,and Gulf War syndrome, among others. In these cases, consumers often pressfor medicalization to get validation for their experiences, stimulate research ontreatments and cures, and get health and disability insurance coverage for theirproblems (Barker, 2005, 2008; Conrad, 2007). The rise of the Internet hasmade it much easier for such consumers to find each other, reaffirm each other’ssense that they suffer from a real illness, and lobby for medicalization.Another major force in battles over medicalization ismanaged care orga-nizations (MCOs). MCOs (discussed in detail in Chapter 8) are health insur-ance providers that restrain costs (and ideally improve quality of care) bymonitoring closely the health services given to patients. MCOs either supportor oppose medicalization, depending on which tactic best protects their interests(Conrad, 2007). For example, in the past, MCOs typically rejected requests forgastric bypass surgeries to help obese patients lose weight, implicitly arguing thatobesity was a personal rather than a medical issue. More recently, MCOs havestarted approving these surgeries in hopes of reducing their long-term costs forobesity-related disease.The final major force behind medicalization is the pharmaceutical industry(Conrad, 2007). The industry has a vested economic interest in medicalizationwhenever it can sell a drug as a treatment (Cohen and Cosgrove, 2009; Conrad,2007; Rothman and Rothman, 2003). For example, in 1985, the pharmaceuticalcompany Genentech patented a genetically engineered human growth hormonedesigned to increase height in children with pituitary gland defects. Such defects,however, are rare. To expand the market for its drug, Genentech sponsored in-school screening programs that identified the shortest three percent of students” “and then informed the students’parents that the students might benefit fromhormone treatment. That treatment, however, carried significant side effectsand only increased height in children with pituitary defects.Case Study: Working Together to Medicalize Attention-Deficit HyperactivityDisorder (ADHD)Successful medicalization often depends on the interwoveninterests and activities of multiple interest groups. The history of ADHD illus-trates this process.Scientists have yet to discover any biological markers (such as viruses orgenes) for ADHD (Furman, 2009). As a result, doctors instead diagnose indivi-duals with ADHD if they are overactive, impulsive, or easily distractible butshow no evidence of brain damage (Conrad 2007).The diagnosis only became popular in the 1960s, following a massive adver-tising campaign for Ritalin (methylphenidate). That campaigned aimed to con-vince both doctors and the public that ADHD was a real disease and that Ritalinwas a safe treatment. Ritalin is indeed safer than other amphetamines and can, inthe short term, improve individuals’concentration, impulse control, and disci-pline. But it may cause addiction, loss of appetite, sleep deprivation, headache,stomachache, and cancer (Davis, 2007; Vastag, 2001), and doesnotimprove indi-viduals’chances of graduating high school, holding a job, avoiding drug abuse,or avoiding trouble with the law (Diller, 1998).Despite these problems, pediatricians proved a ready audience for this mar-keting campaign, which promised a way to boost their flagging income and pres-tige. Teachers, too, began recommending that certain students get tested (andtreated) for ADHD, in part because the drugs could make students more man-ageable, and the diagnosis could shift blame for student problems away from theteachers themselves (Diller, 1998). Meanwhile, parents hoped that diagnosis withADHD would move blame for their children’s school or behavior problemsaway from both their children and their parenting skills. Finally, parents hopedthat diagnosis would give their children the benefits federally guaranteed to anychildren with disabilities: special educational services plus protection against sus-pension or expulsion for disciplinary problems related to ADHD (Conrad 2007;Diller, 1998).Currently, 11 percent of US schoolchildren—and almost 20 percent of highschool boys—have been diagnosed with ADHD, and sales of drugs to treat ithave more than doubled in the last few years (Schwarz and Cohen, 2013). Inaddition, diagnoses have spiked among toddlers, even though official definitionsof ADHD limit it to children age four or over (Schwarz, 2014).Unintended Consequences of MedicalizationIn some circumstances, medi-calization can be a boon, leading to social awareness of a problem, sympathytoward those diagnosed with an illness, and the development of helpful treat-ments. Persons with epilepsy, for example, lead far happier and more productivelives now that their seizures are treated with drugs rather than treated as signs ofdemonic possession. But defining a condition as an illness does not necessarilyimprove the social status of those who have that condition. Those who use” “alcohol excessively, for example, continue to experience social rejection evenwhen alcoholism is labeled a disease. Moreover, medicalization also can lead tonew problems, known by sociologists asunintended negative consequences(Conrad, 2007).First, once a situation becomes medicalized, doctors become the only expertsconsidered appropriate for diagnosing the problem and for defining appropriateresponses to it. As a result, the power of doctors increases while the power ofother social authorities (including judges, the police, religious leaders, legislators,and teachers) diminishes. For example, now that troublesome behavior by chil-dren is increasingly diagnosed as ADHD, parents, teachers, and the childrenthemselves have lost credibility when they disagree with this diagnosis. Similarly,doctors are now given considerable authority to answer questions such as whoshould receive abortions or organ transplants, how society should respond todrug use, and whether severely disabled infants should receive experimental sur-geries, while the authority of the church and family members to answer thesequestions has diminished.As this suggests, medicalization significantly expands the range of life experi-ences under medical control. For example, the natural process of aging is increasinglyregarded as a medical condition. Doctors now scrutinize all aspects of the aging bodyand recommend psychological tests to measure mental decline, hormones toimprove virility, cosmetic surgery for wrinkles, and more (Conrad, 2007).Second, once a condition is medicalized, medical treatment may seem theonly logical response to it. For example, if woman battering is considered a med-ical condition, then doctors need to treat women and the men who batter them.However, if woman battering is considered a social problem stemming frommale power and female subordination, then it makes more sense to arrest themen, assist the women financially and emotionally, and work for broader struc-tural changes to improve all women’s status and options.Third, when doctors define situations in medical terms, they reduce thechances that these situations will be understood inpoliticalterms. For example,China, Pakistan, and other countries have removed political dissidents from thepublic eye by committing them to mental hospitals. By so doing, these govern-ments discredited and silenced individuals who might otherwise have offeredpowerful dissenting voices. In other words, medicalization allowed these govern-ments todepoliticizethe situation: to define it as a medical rather than a polit-ical problem.Fourth, and as the examples of China and Pakistan illustrate, medicalizationcan justify involuntary treatment. Yet treatment sometimes harms more than ithelps. For example, since the 1980s, US doctors have legally forced small num-bers of women to submit to cesarean deliveries, in which babies are surgicallyremoved from their mothers’uteruses rather than delivered naturally throughthe vagina (Daniels, 1993; Roth, 2003). In these cases, doctors argued success-fully that childbirth is a dangerous medical condition rather than a natural pro-cess, that doctors are better qualified than pregnant women to judge fetuses’needs, and that fetuses’right to health is more important than women’s rightto control their own bodies. Yet the rate of cesarean section in the United” “States is twice that recommended by the World Health Organization, suggest-ing that doctors are far too ready to perform this potentially life-threateningsurgery.Ethical Debate: Medical Social Control and Fetal Rightsexplores how thegrowing acceptance of the idea of“fetal rights”is affecting the lives of preg-nant women.Medicalization and the“Potentially Ill”In addition to creating new illnesses,medicalization has also led to labeling increasing numbers of individuals as“potentially ill”(Boyer and Lutfey, 2010; Conrad, 2005; Scott, Wood, andGray, 2005). Thepotentially illare individuals identified as having an aboveaverage risk of illness, whether because of age, stress level, tobacco use, familyhistory, medical test results, or other factors.The risks faced by the potentially ill vary substantially. Some learn that theycarry a gene guaranteed to cause a fatal disease. Many more, however, learn thatthey have a condition such as high cholesterol that may increase their risk ofillness. The numbers of such individuals continues to increase as corporationsdevelop more tests for risk factors and as doctors (often reimbursed per test)adopt such tests. Similarly, the ranks of the potentially ill have expanded as phar-maceutical companies have encouraged both doctors and consumers to expandtheir ideas about health risks and to adopt treatments for those risks. For exam-ple, pharmaceutical companies have worked not only to broaden the definitionof osteoporosis but also to create a new category, osteopenia, for those atriskofosteoporosis. Becauseosteoporosisrefers to the risk of bone fractures caused by lowbone density, osteopenia is essentially theriskof ariskof a health problem.As this suggests, the health benefits of learning that one is potentially illdepend on the magnitude of the identified risk and the effectiveness of availabletreatments (Scott et al., 2005). Those benefits, however, must also be balancedagainst the psychological distress caused when people without any symptomslearn that illness might strike at any moment (Marteau and Richards, 1996). Inaddition, some of these individuals experience the stigma of illness without anyof the benefits that those who have illnesses may receive, such as legal protectionfrom discrimination.The Rise of DemedicalizationThe problems inherent in medicalization havefostered a (much smaller) countermovement ofdemedicalization(Conrad,2007). A quick look at medical textbooks from the late 1800s reveals many“dis-eases”that no longer exist. For example, nineteenth-century medical textbooksoften included several pages on the health risks of masturbation. One populartextbook from the late nineteenth century asserted that masturbation caused“extreme emaciation, sallow or blotched skin, sunken eyes,…general weakness,dullness, weak back, stupidity, laziness,…wandering and illy defined pains,”aswell as infertility, impotence, consumption, epilepsy, heart disease, blindness,paralysis, and insanity (Kellogg, 1880:365). Today, however, medical textbooksdescribe masturbation as a healthy part of human sexuality.Like medicalization, demedicalization often begins with lobbying by con-sumer groups. For example, medical ideology now defines childbirth as an” “neurological disorder that invariably causes progressive insanity, total disability,and death.Even these individuals, though, gain some options and benefits. They cancommit to living life to the fullest, make wills, or otherwise plan for their futures.They also can choose to avoid becoming pregnant; to abort any fetuses that carrythe defect; or to continue a pregnancy to term, knowing that the fetus carries thedefect and hoping that this foreknowledge will better prepare them for the birthof an ill or disabled child. Finally, they can try to have a healthy child who isbiologically theirs by surgically removing the woman’s eggs from her body, mix-ing them with the man’s sperm in the laboratory, having a doctor test the result-ing fetuses for genetic defects, and implanting only nondefective fetuses in thewoman’s uterus. This strategy is rare because the physical, financial, and psycho-logical costs are extremely high, and the odds of success are low.In most cases, however, instead of directlycausingdisease, genes merelyincrease theprobabilityof disease. In these cases, disease occurs when genescom-binewith environmental factors, in a process known as anepigenetic effect(Landecker and Panofsky, 2013). For example, stressful conditions can“turn on”illness-causing genes and weaken the effectiveness of illness-preventing genes,thus increasing risks of depression, heart disease, and other illnesses (Shanahan,Bauldry, and Freeman, 2010). This explains why identical twins may not getthe same genetic disease, even though their genes are identical (Roberts et al.,2012).Genetic testing for this second sort of“genetic”disease can benefit indivi-duals if it motivates those who test positive to take potentially health-preservingactions. For example, women who learn that they carry the BRCA-1 gene, andthus have an increased risk of breast cancer, might choose to adopt a low-fat dietor to have their breasts removed prophylactically.On the other hand, researchers so far have had little success in treatinggenetic factors (Wade, 2010). Yet individuals identified through genetic testingas having an illness or being at high risk for illness may lose their jobs, healthinsurance, or life insurance, even if they are healthy and despite laws banningsuch discrimination (Council for Responsible Genetics, 2001). Moreover,genetic tests can’t tell how soon or how severely an individual with a particulargene will contract a given disease. Increasingly, too, tests are identifying geneticanomalies whose effects, if any, are unknown. As a result, individuals often mustmake life plans with little knowledge of what their futures (or their fetuses’futures) will be like.Social Control and the Sick RoleSo far, we have looked at how medicine functions as an institution of social con-trol by defining individuals as sick or defective. Medicine can also work as aninstitution of social control by pressuring individuals toabandonsickness, a pro-cess first recognized by Talcott Parsons (1951).Parsons was one of the first and most influential sociologists to recognize thatillness is deviance. From his perspective, when people are ill, they can’t perform”
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