In the Kingdom of the Sick: A Social History of Chronic Illness in America

by Laurie Edwards

  “There’s a big part of me that fears getting a chronic fatigue syndrome or fibromyalgia label,” says Brandt, “because those are diagnoses that are still controversial. Many lay people and even many in the medical community think they are essentially psychological problems; some even think the people who get those diagnoses are mostly drug seekers, looking for prescriptions for narcotics and other painkillers. So I want a label, but I want one that’s accepted and acknowledged as a ‘real disease.’ “

  As a patient with CFS as well as a researcher, Dorothy Wall experienced the skepticism as it unfolded. In Encounters with the Invisible, she discusses the “utterly dismissive” attitude of psychiatrists, medical historians, journalists, and cultural critics that prevailed for most of the 1980s and ’90s. “From the disbelievers there are scathing polemics, a whole literature that dismisses patients as ‘victims of sensationalist media propaganda and medical charlatanism’ … The diagnosis of CFS is dismissed as breeding hopelessness … a cover for what is primarily psychological distress,” she writes.43

  What we now call chronic fatigue syndrome has appeared in various forms throughout history. It was often attributed to emotional rather than merely physical origins. One of CFS’s best-known predecessors is neurasthenia, which was the term given to supposed “nervous exhaustion” in the nineteenth century. The term represented the belief that lack of strength in the nerves caused the overwhelming fatigue, and it was primarily a diagnosis of exclusion, when more obvious physical causes of exhaustion, like anemia, were ruled out.44 Like today’s chronic fatigue syndrome patients, many of these patients were female and upper-class, and many medical minds of the time attributed the malaise to the stress of increased educational and employment opportunities.

  In the early 1980s, research into Epstein-Barr (EBV), the virus that causes mononucleosis, revealed that chronic fatigue can begin during a bout of acute infectious mononucleosis and, moreover, that some patients with chronic fatigue have unusual levels of antibodies to EBV antigens. However, researchers concluded that EBV does not cause CFS.45 It wasn’t until 1988 that researchers at the CDC called together clinicians and researchers to try and find some consensus on the issue. Since CFS does not have diagnostic tests, the definition was designed for research purposes and was made intentionally restrictive so that research studies could best detect associations between risk factors or laboratory abnormalities and CFS itself.46 Patients had to have severe fatigue without another known physical cause for at least six months, and along with that needed to have at least four of the following symptoms: malaise following exercise, difficulty with memory or concentration, lack of refreshing sleep, muscle pain, joint pain in the absence of redness or swelling, swollen lymph nodes, and sore throat.47

  The name itself has sparked ongoing controversy. One argument patients have is that giving a condition a name based on its symptoms and not its disease process can add to the misconception it is not a true disease. Moreover, attributing the bulk of the suffering many patients experience to fatigue does not offer a realistic picture of the quality-of-life issues and debilitation the condition can cause. The term “chronic fatigue” is readily met with the sentiment that “we all get tired sometimes.” Patients try to explain that this fatigue is profound, overwhelming, and something entirely different from the tiredness that accompanies a long week at work, or the sleep deprivation that parenting a newborn entails. Part of the problem with the doubt many have about the condition and its psychological attributions is that depression and anxiety can cause many of the same symptoms. It is not unreasonable, then, to think that someone who is anxious and not sleeping well will feel poorly, or have trouble concentrating. But what if the person is anxious because he or she has been sick for weeks or months and physicians can’t seem to help? What if the person is depressed because he or she is at home sick, isolated from social events and falling behind in work? Who is to judge which comes first? This is why a concrete label and, more notably, a specific medical cause for the symptoms is so important to patients.

  The controversy over the name exists within the patient community itself, too. One alternative name that is often used interchangeably is chronic fatigue and immune dysfunction syndrome (CFIDS). It alludes to the immunologic component many see involved. Some patients prefer the term often used in Europe, myalgic encephalomyelitis (ME). Since it points to a medically based explanation for illness (albeit one not supported by empirical evidence of brain or spinal cord inflammation, as the name suggests), many feel it substantiates the “realness” of their disease.

  “Patients have led charges to change the name, to adopt the English term myalgic encephalopathy, but the CDC says that changing the name isn’t a valuable use of their resources. Considering that a few years back they considered siphoning off funds set aside for the treatment of CFS to use for things like Alzheimer’s, I’m not really sure that they are the best judge of how the public funds for this disease should get spent,” Melissa McLaughlin says. In fact, after years of suspected misuse of federal funds ear-marked for CFS research, the CDC’s program director for CFS, Dr. William Reeves, acknowledged the funding problem and asked for an official audit of the agency. The resulting Inspector General’s report found that from 1995 through 1998, the CDC had inflated its CFS expenditures anywhere from 48 to 72 percent.48 Though the funds have since been replaced, the years spent disregarding CFS in favor of other diseases put patients at a clear disadvantage and illustrates a built-in bias against the condition. In 2010, Dr. Reeves was reassigned to a different division, and one of his colleagues, Dr. Elizabeth Unger, replaced him. While advocates and researchers acknowledge a tone shift toward chronic fatigue syndrome with the departure of Reeves, it has been a gradual one, and more substantive progress needs to occur for them to feel confident in it.49

  * * *

  It is not hard to see why early AIDS patients, who were fighting homophobia and intolerance in addition to a ravaging physical disease, faced stigma. Yet illness that is invisible through the lens of the medical science we’ve come to prize so highly is a cause for stigma, too. Though they emerged at practically the same time, the history of early AIDS is synonymous with political action and concrete results that the CFS community, despite the extensive work of disease advocacy groups and patients, cannot claim. Perhaps part of this is simply a question of demographics: AIDS patients were already marginalized in a way CFS patients were not, so the stakes were even greater. At the same time, it is clear why the iconic awareness and cause-related marketing breast cancer received in the 1980s and ’90s does not apply to CFS. Remember, this was a time when self-reliance and physical fitness gained more prominence, when questions of character and moral integrity were mixed up with issues of economic well-being and philanthropy. If chronic illness in general is impervious to the concept of a finish line or a valiant victory, then one as subjective as chronic fatigue syndrome is that much more at odds with this projected ideal.

  Patients with conditions like chronic fatigue syndrome occupy a frustrating space in the medical landscape, similar to that of patients with fibromyalgia, irritable bowel syndrome, migraine and chronic daily headache, and other concomitant conditions. The ability of medical science to reliably identify physiological, neurological, and biological causes of these conditions is critical to better acceptance and better treatment options. If we know what causes some of these invisible illnesses, perhaps someday they can be prevented. This is another reason why the emergence of a particular condition (CFS) at a particular time (the 1980s) has a far-reaching impact on the evolution of chronic illness in our country, the same way the growth of AIDS activism and breast cancer activism does.

  Chapter 6

  A Slight Hysterical Tendency

  Revisiting “The Girl Who Cried Pain”

  When Cynthia Toussaint read the New York Times’ January 14, 2008, front-page story (“Drug Approved. Is Disease Real?”) about Lyrica, the drug approved by the FDA to treat fibromyalgia pain, he
r reaction to the skepticism put forth about the condition’s existence was immediate and impassioned. In the first paragraph reporter Alex Berenson writes, “Fibromyalgia is a real disease. Or so says Pfizer in a new television advertising campaign for Lyrica, the first medicine approved to treat the pain condition, whose very existence is questioned by some doctors.”1

  “I was personally insulted and shocked. It hurt so many people, especially women,” Toussaint says. She considers the condition’s front-page treatment to be a reflection—an indictment, really—of how society views women: weak, vulnerable, and dependent.

  “It took us back to the dark ages,” she adds.

  That Toussaint is quick to associate the Lyrica story with far-reaching implications for gender bias in chronic illness and chronic pain is not surprising. As the founder of For Grace, an organization dedicated to empowering women and ensuring equality in treatment for women in pain, she is professionally entrenched in the politics of pain and gender. She’s also a patient whose pain was routinely dismissed for years, and is all too aware of the gender bias in treatment and diagnosis of pain.

  Widespread pain conditions like fibromyalgia or chronic fatigue syndrome are especially social conditions, since their symptoms have a direct impact on a patient’s ability to maintain various roles and identities. Ties to the outside world via employment, family obligations, activities and hobbies, and social engagements are whittled away, and physical and psychosocial isolation increases. Add to this process the fact that their symptoms and complaints are routinely viewed with skepticism from physicians, loved ones, or both, and the alienation of individual patients takes on more momentum. In The Culture of Pain, David B. Morris writes that pain “cannot be reduced to a mere transaction of the nervous system. The experience of pain is also shaped by such powerful cultural forces as gender, religion, and social class … Even when it just grinds on mercilessly, pain, like love, belongs among the basic human experiences that make us who we are.”2

  Given how many people experience chronic pain—some 116 million Americans—and how harmful and often ineffective painkillers can be, it is hardly surprising that pain is a hot-button research area.3 Yet what makes pain a research field with so much pull is also what makes it almost impervious to quantitative data: pain is inherently subjective. Unlike blood tests that reveal certain abnormalities or X-rays or CT scans that reveal fissures, breaks, or masses, there are no universal, definitive tests for pain. Most often, the ubiquitous Comparative Pain Scale that asks patients to rate their pain from zero to ten (ten is the worst pain imaginable) is the standard benchmark. Pain is self-reported, and there is the fundamental problem: the person reporting it must be beyond skepticism, hesitation, or bias. While many would like to believe we’ve abandoned the days of hysterical illness and great strides have been made in the realm of sex-based research and understanding of psychosocial and biological differences in the perception and experience of pain, the female patient still confronts bias. If she is a patient of lower socioeconomic status, the difference is even more pronounced.

  Research is beginning to show some promising information in terms of the perception and manifestation of pain between the sexes, data that could lead to more effective treatments and dispel the lingering stereotypes regarding both men and women who live with chronic pain. As it pertains to research, a person’s sex as male or female refers to his or her biological and chromosomal attributes, while a person’s masculine or feminine gender refers to the cultural roles and expectations attributed to that person. We talk about sex when discussing research, since these biological differences play an important role in the development and perception of pain, but we more commonly discuss gender when referring to patients living with pain. Sex-based clinical research that accounts for the differences between men and women is an indispensable part of more effective treatments and improved outcomes. While much work remains, the changes in research, policy, and advocacy that came about in the 1990s and early 2000s provided a foundation.

  Sex Matters: Pain, Gender, and Medical Research

  At its core, the Lyrica-fibromyalgia controversy has less to do with the specific diagnosis and all to do with the nature of pain itself. Of all the symptoms that manifest from chronic ailments, pain is the most frequent unwelcome accompaniment. An estimated 25 percent of the population lives in chronic pain, and it accounts for more than 20 percent of visits to physicians. According to the Chronic Pain Research Alliance, inadequate physician training and education in diagnosing and treating just six of these pain disorders—fibromyalgia, chronic fatigue syndrome, endometriosis, interstitial cystitis, temporomandibular joint disorder (TMJ), and vulvodynia, which affect 50 million women—adds as much as $80 billion in both direct and indirect costs annually.4 From multiple doctor visits to lost wages and productivity due to flares, chronic pain is an expensive, exhausting endeavor.

  Chronic pain, especially severe chronic pain, is so encompassing and omnipresent it makes concentrating on anything else other than it nearly impossible. Chronic pain can make it excruciating to engage in physical activities, keep up with a regular work schedule, or even leave the house. Over time, chronic pain erodes so many aspects of the patient’s identity that sometimes it seems all that is left is the minute-by-minute experience of simply surviving the pain itself. It makes the threads of everyday life blurry and out-of-reach, yet pain becomes the narrow, sharp lens through which everything else that matters is filtered. This is the reality behind the statistics, the jobs left behind, and the co-pays for painkillers that invite as many problems as the fleeting relief with which they tempt.

  The women’s health movement did a lot to change the doctor-patient relationship and the quality of life for women, especially those living with chronic illness, but it did not address gender and chronic pain. In fact, pointing out that women lived in pain that just might be associated with hormonal and other physiological differences between women and men was anathema to the push for recognition of women’s equality. In what many consider the third wave of the women’s health movement (with the Progressive Era in the early twentieth century and the women’s health mobilization in the 1970s being the first two), the 1990s saw an increase in the number of female physicians and medical school students, and more female representation in Congress; ultimately, the federal government could no longer ignore the glaring disparities in sex-based clinical research.5

  In 1990, the Society for Women’s Health Research (SWHR) was founded. A collaboration by physicians, researchers, and women’s health advocates, the organization’s aim was to draw attention to the blatant lack of inclusion of women in medical research and trials supported by the National Institutes of Health and, specifically, the lack of research on the numerous diseases that either solely or disproportionately affected women.6 To address inequity in medical research, the SWHR asked the Government Accounting Office (GAO) to look into the problem of sex-based research and examine if American women were truly at risk due to biases in clinical research. The GAO’s report, released in June 1990, found that the National Institutes of Health’s vague policy to encourage the inclusion of women in its trials was poorly communicated and not well understood in the research community, which clearly did not bode well for the millions of women depending on research to give them a better life.

  By the early 1990s, chronic fatigue syndrome was already a contentious issue affecting many women, cause-related marketing for breast cancer was ramping up, and the iconic female survivor was growing more popular in public consciousness. The Americans with Disabilities Act (ADA), which prohibited discrimination in employment, transportation, and other public accommodations, was also passed in 1990. By the end of that decade, almost three-quarters of women of working age with a disability characterized as non-severe were in the workforce.7 It was long past time for women’s health and, in particular, women’s pain as it related to chronic illness, to get recognition. A pivotal point came in 1993, with the passage of the NIH [National Ins
titutes of Health] Revitalization Act, a law written with direct input from the Society for Women’s Health Research that mandated women and minorities be included in all federally funded clinical research and that Phase 3 clinical trials to bring drugs to the market be analyzed by sex.8

  The same hormonal and physiological differences between men and women that were problematic for women’s health activists in the 1970s are especially important in terms of how medications and dosages work in male and female bodies. Once again at the request of the SWHR, the GAO stepped in to examine how the Food and Drug Administration (FDA), which has the discretion to approve drugs for sale and as arbiter of what passes muster for safety and quality, handled the inclusion of women in trials for drugs seeking approval for marketing to the public. The subsequent report found the FDA was not effective in managing the presentation and analysis of data in drug development that pertained to sex-based differences.9 In response, both the FDA and the Centers for Disease Control and Prevention established Offices for Women’s Health, another key step in the process toward better understanding, treating, and legitimizing women’s pain.10 The interest in sex-based biology and research continued to grow, and in 1996, the prestigious Institute of Medicine (IOM) received a proposal from the SWHR seeking validation of it and planning out the appropriate direction for research.11 Another piece of the foundation was put into place when the ban on women of childbearing age from participating in early clinical trials, which had been put in place in 1977, was lifted. The ban was a leftover from the thalidomide tragedy of the 1960s and ’70s, when babies of women who had taken the drug while pregnant were born severely deformed.12 The lifting of this ban was a significant step, considering how many women manifest chronic and autoimmune conditions during their childbearing years.13