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

by Laurie Edwards

  No matter how many times I explained that being sick and missing school and work was what caused me stress, rather than the stress causing my symptoms, I never felt they listened to that. Because of that resistance, they didn’t consider alternatives besides histrionic asthma patient. Part of the reason bronchiectasis and primary ciliary dyskinesia are terms that carry so much meaning for me is because once I was diagnosed properly, I could start more appropriate and productive treatments. But getting those labels also meant I could shed the unwanted and interfering implications that because I was hard to diagnose (as most patients with rare diseases are), perhaps the problem was my emotional health. I don’t think I saw my situation as directly related to gender at the time, and I certainly didn’t make the connection to the broader struggle for women’s health and patient equality. I was too busy living it, too busy trying to survive it, for any such introspection. It hits me now just how easy it was to pick up a file, look at a young woman with unexplained flares and exacerbations of symptoms, go through the cursory battery of tests, and then allude to stress when an obvious answer did not appear.

  Cornwell and her current physician feel that had her original doctor not assumed it was her age and gender that were the problem, he would have done a more thorough examination and she could have been diagnosed and put on therapeutic medication years earlier.

  “I didn’t go to another doctor about my abdominal pain for several years, and I suffered a lot because of it,” she says. Ultimately, it was a female nurse practitioner who listened to her symptoms and referred her to the physician who correctly diagnosed her and now helps her manage her condition.

  For Janet Geddis, a young woman living with migraine disease, her age and all the assumptions that accompany it were also a hindrance in getting a diagnosis, but for different reasons.

  “I’ve often felt that things were extra-tough on me when I was in high school and college suffering from migraine. I felt I was supposed to be happy, energetic, successful, and active all the time—and often, I was. I was very happy in high school and for most of college. The only dark spot on those times? My headache. Things may have been easier on me had I not kept the pain a secret. The majority of my closest friends had no idea I was suffering. Perhaps if I had been ‘out’ I would’ve received encouragement to go to a knowledgeable doctor and get a correct diagnosis,” she says. “In ways, I didn’t feel old enough or mature enough to have an illness that had to be taken seriously.”

  For many women living with chronic migraines, normal hormonal fluctuations can exacerbate or even trigger the debilitating headaches, which adds another layer of complexity to the relationship between gender and illness. Nowadays, exploring the link between hormonal changes and specific conditions is an important area of medical research, but remember this connection, because during the women’s health movement of the 1960s and ’70s, it would figure prominently.

  “I have always been determined to not let [being a female] get in my way of getting what I deserve,” says Geddis. “My mom was a member of the National Organization for Women (NOW); I was a self-proclaimed feminist starting freshman year of high school (but probably was one, at heart, long before that). That doesn’t mean that others’ preconceptions about females didn’t affect me, of course—but I didn’t suffer from timidity or shyness that women are often told, in not so subtle ways, to embrace in order to fit in. I’m not sure why it took so long to get an accurate diagnosis … I can’t easily claim sexism there (as many patients do, and usually rightly so!) since [my doctor] was female. Granted, I realize females can be sexist, too. But you see what I’m saying, right? I probably didn’t make my case clear; she probably did not ask the right questions. I have held on to a lot of anger toward her and other doctors I saw while I was a teenager, but I’m beginning to let that go.”

  Melissa McLaughlin considers lack of confidence to have been an instrumental part of her long, unproductive diagnostic journey. “I was a shy and quiet fifteen-year-old who brought her mother into every appointment (originally because the brain fog made concentrating and remembering difficult). They just didn’t take me seriously in any way,” she says. “Part of it has been my age; being young, shy, and unwilling and unsure of how to stick up for myself, I often found that I’d leave an appointment in tears, feeling bullied or belittled. For years, it didn’t occur to me that I could argue with the doctor’s results, even if they were contrary to what my body was telling me.

  “I was a good girl—hardworking, a straight-A student, kind of a suck-up, even—and was determined to be a good patient, to do everything that they told me to do, because that was my only shot at getting better. I’d say it was about six years into things, about midway through college, that I finally decided that it was up to me, not up to them. If something was making me worse, I could stop doing it, even if the doctors told me I should keep doing it. If I could go back, I’d change that: that sense that they had all the control, not me,” she says, honing in on one of the most important elements of female patient-hood: the balance of power in the doctor-patient relationship.

  As a psychiatrist working with men and women in pain, Dr. Sarah Whitman reminds us that this imbalance of power and skepticism has far-reaching roots.

  “Historically, when women have reported medical symptoms, these aren’t taken as seriously as when men describe complaints. For example, research has shown that when men and women both report equivalent cardiac symptoms, men receive more thorough evaluations. And for equivalent cardiac disease, men receive more aggressive and definitive treatment. So a woman reporting pain may be more likely to be dismissed or [have] her distress downplayed,” Dr. Whitman says. “There are some medical illnesses that are unique to women; for example, certain pelvic pain disorders. These are significantly under-researched, and it can even be difficult to find physicians with appropriate training and clinical experience to treat these diseases.” The lack of training and clinical experience perpetuates the cycle: if women aren’t diagnosed correctly because their physicians don’t know what to look for, their symptoms worsen, which can have profound emotional effects on them, too. From there, it is not a huge leap to write their pain or symptoms off as hysterical or psychogenic.

  In The Camera My Mother Gave Me, a candid, sparely written memoir by Susanna Kaysen—who also wrote the memoir Girl, Interrupted—the author chronicles her journey toward an official diagnosis and treatment for her unrelenting vaginal pain. With each appointment and new remedy, from caustic creams and baths to alternative medicine and biofeedback, her frustration grows—toward the physicians who cannot help her; toward her partner, whose main concern is their lack of sex; toward her own body, which staunchly refuses to respond to her many attempts at relieving its pain. The more unsympathetic her partner becomes and the more theories are bounced around about the source of her pain, the more defensive and uncertain she becomes.

  “Is this some way of turning against him?” she asks her alternative nurse. “Is this a hysterical illness?”4 Not only is her physical condition in question, but her sexuality and her emotional state are, too.

  “Just because we don’t understand the cause doesn’t mean it is not real … This is part of what’s so bad about this disease. People feel responsible for it,”5 the nurse tells Kaysen, who, of course, already knows this all too acutely.

  So when it comes to pain, a steady companion of so many chronic conditions, why hasn’t the image of the intractable female patient faded into the background of social consciousness or institutional memory?

  “In a sense, women with chronic pain are in a ‘perfect storm,” says Dr. Whitman. She describes a potent combination of being in pain, being a woman, and especially having a “woman’s illness.”

  Truly female diseases—those that, like Kaysen’s, involve female reproductive organs—are even more mystifying and mishandled. The fact that these conditions are even less researched and understood adds to the combustion. Such statements certainly ring true for Barb
ara Kivowitz, who has undiagnosed pelvic pain. Kivowitz, as a fiftysomething consultant, brought the experience of living through the women’s health movement to her doctor-patient relationship. Her journey was one of diagnostic exclusion, as likely diagnoses such as interstitial cystitis were ruled out, leaving her with unremitting, unnamed pain. However, like Cornwell and McLaughlin, she is a female living with pain, and that fact itself unites them more than their symptoms and diagnoses separate them.

  As each one of the likely diagnoses was ruled out and Kivowitz still found no relief from the pain that left her homebound, feelings of powerlessness and helplessness increased. While she has had the somewhat anomalous experience of never having her symptoms dismissed outright—the result, she concludes, of a long-standing relationship with a wonderful primary care physician, excellent insurance, and above-average medical knowledge—she stills sees a worrisome dynamic when it comes to diagnosing and treating pain. The training doctors receive is “antithetical and almost hostile to this kind of treatment,” she says, pointing out that most doctors are programmed to diagnose, heal, or say good-bye. The more resistant a set of symptoms is to diagnosis and the longer the process drags on—several years later, Kivowitz still lacks an official label for her severe pelvic pain—the more porous this system becomes.

  When thinking about the challenging and often unsatisfactory experiences patients have had with physicians, Dr. Joe Wright sees part of it as the process of struggling with the power relationship that happens when we go to doctors. From the perspective of patients, they feel that “I had social power until I walked into this room.” We see physicians when we are sick and vulnerable, and their assessment of what is wrong with us has the potential to validate or denigrate our experiences.

  Activists have questioned the dynamics of what happens in that exam room. “There’s this real tension about what we want from our doctors and [from] medicine,” Dr. Wright says. “It is very hard for people just generally to make that individual experience political; it is what people with disabilities did, it is what feminists did, it is what people with AIDS did when each of those sets of people revised their relationships with their doctors.” Putting individual experience into broader context enabled change to happen.

  Their Bodies, Their Rights: Putting the Medical Establishment on Notice in the 1970s

  The “perfect storm” Dr. Whitman mentions is an analogy that applies to the plight of the female patient for much of the twentieth century and premodern times. Women were navigating a hierarchical medical system dominated by males; women lacked knowledge and resources to advocate for their health, and they were saddled with the character assignations that women who are told “it’s all in their heads” still see shades of today. Using the momentum of existing social movements, the women’s health movement of the 1970s took specific aim at the traditional structure of modern medicine and the imbalance of power that put female patients at a disadvantage. The patients’ rights movement discussed earlier was one catalyst for women’s health activists, as informed consent in both research and treatment addressed the paternalism of doctors. The women’s movement itself, an extension of the fight for civil rights and equality, was an important frame. As members of the women’s movement, women’s health activists “attempted to limit the extent to which the medical establishment controlled women’s bodies and lives.”6 While the field of gynecology and obstetrics was a natural first target, activists sought to change the nature of the doctor-patient relationship across all specialties.

  “The women’s health movement said we are women and we count too, we have a choice when it comes to reproduction. We can have health, we can work, we have a choice,” says Cynthia Toussaint, the longtime patient with chronic pain and a national advocate for women in pain. She was a teenage babysitter when she first read about Gloria Steinem and was hit with the realization that women were suppressed. In her own life, up to that point, she’d always believed women were cherished. That all changed at age twenty-one, when, after a ballet injury, she was struck with sudden, serious, unrelenting pain. More than a decade of dismissal and rejection followed. Despite being completely bedridden for long stretches at a time, Toussaint was told her symptoms were in her head, that she was crazy.

  “What was so jolting for me was that I didn’t get treatment for so long because I was a woman. Doctors flirted with me, they didn’t pay attention [to my symptoms]. I needed help, my life was ending … my mom and I put it together early that it was because I was a woman,” she says. She was ultimately diagnosed with CRPS and, much later, with fibromyalgia too, and she sees a lot of benefits from the work of 1970s women’s health activists. “The women’s health movement gave people with chronic illness a lot of credibility,” she says.

  The importance of the doctor-patient relationship in terms of women and chronic illnesses is significant. Looking first at obstetrics and gynecology, consider the millions of women who live with conditions like endometriosis and interstitial cystitis, or who live with infertility, which affects ten percent of (or 6.1 million) women.7 According to the American Autoimmune Related Diseases Association, autoimmune diseases, which include conditions like lupus, rheumatoid arthritis, multiple sclerosis, and more than one hundred others, afflict fifty million Americans and strike women nearly 75 percent of the time.8 A survey taken by the association found that 45 percent of patients with autoimmune disease were labeled as chronic complainers early in their diagnostic journeys, with the resulting delay in diagnosis often leading to organ damage from lack of appropriate treatment.9 With just this small sampling of statistics in mind, the stakes involved in creating a sound, trusting relationship between female patient and provider are clear.

  Another way to look at it is this: at the beginning of the twentieth century, the major causes of death for women were infectious diseases (tuberculosis, syphilis, pneumonia, and influenza). By the end of the twentieth century, those major causes had shifted to chronic illnesses (cardiovascular disease, cancer, stroke, and diabetes). This may seem like an enormous change, and in many respects it was, but the bookends share one fundamental characteristic: infectious diseases, cardiovascular disease, some diabetes, and cancers are often in part preventable.10 We know much more about these chronic conditions today, as well as what we might do to help minimize our risk of developing them, yet so much that determines the diagnosis, prevention, and the course of illness lies beyond basic physiology.

  Between the changes in medical and research ethics, the desegregation of hospitals, and the advent of Medicare and HMOs, health care was an increasingly large-stakes political issue in the 1960s and 1970s. A similar call to action to the one occurring for minorities, elderly, and the disabled during this era of social justice was taking place for women. As scholar Beatrix Hoffman observed, “Although each movement had its leaders, each relied on grassroots participation, or ‘change from below’: they were made up of ordinary people demanding reform, often on their own behalf.”11 The importance of this “change-from-below” aspect of reform in the United States cannot be overstated, as it not only propelled the civil and disability rights movements taking place but characterized much of the patient advocacy that would become so integral to the chronic illness experience. For example, in Pink Ribbons, Inc.: Breast Cancer and the Politics of Philanthropy, Samantha King connects the women’s health movement’s criticism of the patriarchal structure of medicine with helping build a foundation for the breast cancer activists who would soon follow.12

  The women’s health movement gave credibility to those with chronic illness, from the individual patient in an exam room who realized she had a valuable role in her health management and her relationship with her physician, to the various disease and patient advocacy groups that would emerge. Each can point at least partially to the work done by women’s health advocates in the 1970s. While Congress and presidents haggled out agreements on Medicare and bioethicists and philosophers pondered the implications of life-prolonging technology
and transplantation, it was patients, advocates, and those who felt they were treated like second-class citizens who empowered change. For women, this change started with the radical notion that they had a right to know about their own bodies, had a right to control their own health care, and belonged in medical schools where they could fully participate in the very health care decisions that have such significance in their lives. The grassroots women’s health activism that emerged in the late 1960s and early 1970s was fostered by an equally diverse group of advocates, among them middle-class white women, middle- and working-class African-Americans, lesbians, and heterosexuals.13

  Women’s health activists shared the same type of vision for female patients, and the conversations surrounding what was possible, if not essential, for the doctor-patient relationship and women’s health turned thoughts into action. The results were concrete and monumental. In 1966, the National Organization for Women (NOW) was formed. Part of the founding mission statement includes the aim to “bring women into full participation in the mainstream of American society now, exercising all privileges and responsibilities thereof in truly equal partnership with men.”14 The extension of those ideals of a truly equal partnership and full participation is a natural one, especially given the legal, scientific, and political shifts around women’s reproductive health at the time.

  The move away from medicalized pregnancies and births was one way women claimed control of their bodies. The practice of using midwives experienced resurgence in the 1970s, as women tried to create more natural settings for their childbirths and move them away from hospitals (which, as we know, more and more patients were spending longer amounts of time in by this point.)15