Alicia Cornwell is a twenty-eight-year-old woman living with Crohn’s disease, the same painful and often serious autoimmune disease of the colon and gastrointestinal tract that Duncan Cross has. When she first began her diagnostic journey, she was a middle-school student with stomach pains. She underwent a variety of tests, from endoscopies to barium-swallow X-rays, hopeful that each step would bring her closer to an answer and to some relief. While the tests and consultation initiated her into the world of patient-hood, they also signaled the start of an unfortunate but all too common cycle: dealing with the dismissal of her persistent symptoms. She was told she had reflux disease, but when her problems continued, so too did the tension. As the years went on, dismissal took on a more problematic bent, as physical symptoms were attributed to emotional problems.
“At that time, my parents and I were told that my symptoms were caused by stress. I heard this for years, right up until I was diagnosed with Crohn’s [as an adult]. In fact, I had heard it so often, that until last year I was convinced I was making myself sick because I could not control my life, or, even worse, that I was making up symptoms for attention,” she says.
This story line evokes outdated images of emotionally wrought, fragile women attended to with smelling salts and placed in darkened rooms that are ingrained in historical attitudes toward female patients—hysterical patients. The term “hysteria” originates from the Greek root hystera (which means womb), and it was once believed that hysteria was caused by the womb wandering through the body. Victorian-era doctors attributed hysteria to an imbalance between sexual organs and the brain. “Problems that we today regard as associated with hormonal fluctuations, such as PMS irritability and postpartum depression, were also prominent in the diagnosis of hysteria,” notes Paula Kamen.1 The context for this Victorian-era belief reaches back much farther in history; as we know, medieval perceptions of women painted them as weak, inferior versions of men, and their monthly cycles and hormonal fluctuations were catalogued as evidence that they were mere leaky vessels, inferior to men in ways both physical and emotional. Unfortunately, this association between female hormones and character assignations is one that follows women well past medieval or even premodern times.
The term “hysterical illness” often calls to my mind the narrator in Charlotte Perkins Gilman’s “The Yellow Wallpaper,” published in 1892. In the emblematic feminist short story, the female narrator’s husband, a physician, barricades his wife in an attic bedroom, hoping that cutting her off from the outside world and from any mental or physical stimulation will cure her of postpartum depression, or “nervous illness,” the catchall phrase that is as disparaging as it is inaccurate.
“John is practical in the extreme. He has no patience with faith, an intense horror of superstition, and he scoffs openly at any talk of things not to be felt and seen and put down in figures,” the narrator says of her husband. She further queries, “If a physician of high standing, and one’s own husband, assures friends and relatives that there is really nothing the matter with one but temporary nervous depression—a slight hysterical tendency—what is one to do?”2
In line with the plight of women throughout much of the nineteenth and twentieth centuries, the narrator is physically and financially dependent on her husband. She knows that her forced seclusion only makes her obsess over her feelings more, but she cannot escape. She is trapped by the circumstances dictated by her social milieu and, accordingly, trapped by the prevailing attitudes and (mis)understanding of mental illness and gender. For example, because early-twentieth-century physicians saw mental illness as hysteria, little time or attention was given to actual treatments, save the surgical removal of reproductive organs altogether.3 Although “The Yellow Wallpaper” is a commentary on attitudes toward mental illness, its inherent points about the way female patients’ needs are valued or undervalued resonate in conversations surrounding women and chronic illness.
For Alicia Cornwell, the doubt about her symptoms chipped away at her confidence, which, combined with her age—and the accompanying assumption that young people are not supposed to be sick—exacerbated the underlying problems even more. By the time she entered college, which is when she had what she now knows was her first true Crohn’s flare, she was also experiencing a worsening of her reflux disease.
“Whenever I saw the university health center doctors about esophageal pain and the newer abdominal pain, they tended to focus on the reflux. I always felt timid around doctors (particularly men, which they often were), and my fears about my ‘made-up’ symptoms caused me a lot of anxiety when I needed to get checked out. Usually I minimized my pain because I didn’t want to be perceived as whiny and weak. The fact that I minimized my pain made it even easier for doctors to routinely dismiss it,” she says.
When she was referred to her third gastroenterologist for her first colonoscopy at age twenty-one, he told Cornwell that he noticed redness and inflammation but nothing that was cause for concern. He shifted blame for her symptoms to her lifestyle, not just her constitution. He told her that as a vegetarian she should eat better, and that she needed to keep her stress levels under better control, telling her that young women like her “often develop nervous stomachs and irritable bowel syndrome because of their stress.”
Cornwell’s frustration and indignation are familiar to me. So many times in college when I was admitted to the hospital, unable to breathe through my choking phlegm and narrow airways, my physicians queried if perhaps I wasn’t just a little stressed out. I was a young college student who sounded even younger than I looked (I still sound that young), and maybe I just needed to learn to handle the pressures of work, school, and internships better. (No matter that I’d been balancing the demands of student life and illness since I entered kindergarten.) If they couldn’t explain why I always caught so many infections, why all the steroids they pumped into me didn’t control my lungs, then the causes couldn’t be physical, right?
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 Barbara 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.
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
Women’s advocates helped educate patients about the birth control pill, which was first available in 1960. When early versions were linked to increased risk of stroke, blood clots, and cardiovascular disease, advocates helped spread this information. In response to these concerns, the Food and Drug Administration (FDA) included with birth control prescriptions the first drug safety pamphlet written specifically for consumers that outlined both its risks and benefits.16
The landmark court case Roe v. Wade, which legalized abortion in 1973 by finding that preventing a woman’s right to end her pregnancy violated her due process, was a pivotal piece of legislation in terms of reproductive rights, women’s health, and women’s ability to make decisions regarding their bodies. It was obviously a controversial ruling, one that also gave momentum to the right-to-life movement that proved so influential in the Karen Ann Quinlan case and to matters of life and death today.
One of the most influential and far-reaching conversations about what is possible for the doctor-patient relationship and empowerment and women’s health took place in 1969, at an eight-woman conference at Emmanuel College in Boston. The paternalism of modern medicine was renounced in favor of finding practitioners willing to share their expertise, and the women, who called themselves “the doctors group,” took on the task of researching as much as they could about women’s anatomy and physiology, venereal diseases, pregnancy, menopause, and nutrition.17 This ultimately developed into the first printing of the epochal Women and Their Bodies in 1970. Filled with information on pregnancy, menopause, sexually transmitted disease, female anatomy and physiology, and other topics, the retitled Our Bodies, Ourselves went on to sell millions of copies and embodies the grassroots ideal that women should have access to and understanding of what goes on in their bodies.18 Here again the “ground-up” nature of the movement is apparent: women researching relevant health matters and sharing that information with other women. This was no dry, medical tome written by ob-gyns.
As Sheryl Ruzek writes, the book’s success and reach “really lies in the powerful combination of presenting solid evidence framed in terms of self-determination, patients’ rights and social justice through women’s own voices. Women’s experience, not professional opinion, made this groundbreaking volume so powerful. While its appeal has always been its usefulness as a source of personal health information, it continues to confront the politics of women’s health.”19 With education and knowledge, women could more easily ask questions, understand diagnoses and terms, and assert themselves when it came time to discuss treatments and outcomes.
The self-health groups and consumer advocacy groups that emerged during this time, which shared many ideals common with Our Bodies, Ourselves, helped transform patients into more active consumers of health care. The collective decision making we hold as an integral part of health care today is an offshoot of the brand of health communication that made Our Bodies, Ourselves so successful.20 In targeting the predominantly male establishment of medicine—and this included both medical education and the recruitment of medical personnel—feminists urged women to accept responsibility for their role in what amounted to an unsatisfactory relationship. The traditional role of the patient underwent enormous changes. The docile, “good” patient who did not question or doubt her physician lost favor to the empowered patient who expected proper customer service and treatment. Women were encouraged to seek treatment elsewhere should their requests for information or other needs not be met.21
Feminism challenged social practices in the doctor’s office and recast relationships between compliant patient and infallible physician as part of the larger process to keep women down. It wasn’t just gender that women’s health activists challenged; it was also the politics of professionalism. The broader issue of how men dominated women became inextricably linked to the medical sphere and how doctors, who were predominantly male, dominated their patients.22 Feminists at the time reframed the history of medicine as a history of exclusion: women excluded or discouraged from medical education, midwives excluded from the delivery room, and women excluded from conversations about their very health.23
For Barbara Kivowitz, the women’s health movement has enormous influence on her modern-day experiences as a patient and her relationships with physicians. “I construct them along lines in which I require that I am an equal partner and that nothing is done to me or considered without my fully understanding and participating. I don’t do it with fists raised or voice raised. In fact, I insist on constructing a relationship … One of the things I learned from the women’s movement is authentic relationships with everything, and I bring that into health care,” she says.
“I make sure right away they know who I am, I am an individual, and expect and require partnership. I don’t come in with a manifesto, just who I am; I trace that right back to the formation I had growing up with the women’s movement. If the relationship is damaging, then the outcome is not going to be a healing one. I’ve taught some of my providers what it means to be in a collaborative, partnering relationship. Partnership is two ways—I understand what I need and also what they need,” Kivowitz says, foreshadowing the type of participatory medicine we see emerging today. There are several obstacles to finding this type of collaboration. For one, she is doubtful that medical schools teach the concept of partnership. For another, she has resources available to her that not all patients do. If she doesn’t connect well with a physician, there are hundreds more she can consider. Living in an affluent area with numerous hospitals and having high-quality health insurance certainly makes finding the right fit much easier.
There have been both global and personal changes as a result of the activism of the 1970s. According to the U.S. Department of Health and Human Services, only 7 percent of physicians were women in 1960.24 Due in part to strict quotas that limited applicants to women’s-only schools, a gender discrimination suit in 1970, sponsored by the Women’s Equity Action League, helped open up access to medical schools for female applicants. By the year 2000, nearly half of medical students were female.25 Between 1970 and 2005, women’s numerical representation among practicing physicians increased from 25,000 to 225,000.26
“That alone changes the nature of health care and the doctor-patient relationship and direction of health care research. There is a direct line from the women’s movement to this outcome and that’s huge,” Kivowitz says. “Having more women in health care, and involved in leadership in health care, changes what is considered illness. Look at chronic fatigue syndrome and pain—pain is now considered the fifth vital sign (along with temperature, pulse, blood pressure, and respiratory rate) … I think the women did that.”
There was pushback from the medical community when redefining medical ethics and collaborative decision making when it involved transplants and questions of the right to die, and some within the medical community were reluctant to construct these new roles, too—roles that gave more control to patients. Clinics that used nonprofessional caregivers, offered alternative treatments, and relied on a message of self-help and empowerment were seen as especially threatening to the medical establishment.27 Still, those physicians who supported the feminist critique of the medical establishment, particularly those involved in obstetric and gynecologic care, realized that women’s health problems weren’t merely physical. They were social and political,28 as they had been in centuries past, and as they continue to be today. The various health movements of this era, from the establishment of local clinics to the organization of self-health literature and workshops, to the Patient’s Bill of Rights—which clearly applied to the women who were often left out of the conversation when it came to their treatments—were natural byproducts of both social and political processes. In light of the history of forced sterilizations in this country, especially among women living in poverty and women who were minorities, emphasis on informed consent and patients’ rights was an important component of the women’s health movement.
Another focus of the women’s health movement with long-reaching implications for patients with chronic illness was improved access to health care and health insurance. From the desegregation of hospitals to the establishment of alternative health care facilities, in various movements activists “challenged basic assumptions of medical practice in the United States, charging that it was not concerned enough with preventive and primary care. The most radical of these groups embedded their analyses of the political economy of health care in a larger critique of imperialism, capitalism, racism, and then, as feminist analysis developed, sexism.”29
The funding of Medicare and Medicaid and the network of community health clinics it allowed for drastically changed the ability of the poor to receive affordable care, but that was just one part of a larger process. The women’s health movement’s perspective is deeply ingrained in the push for universal care. After all, as labor leaders and other activists brought to bear, employer-sponsored health insurance did little to help women, who at the time were largely employed in situations with no benefits: part-time work, contract and service industries, and, of course, homemaking. Beatrix Hoffman discusses how the collective that wrote Our Bodies, Ourselves argued against the profit-driven medicine that was responsible for unnecessary hysterectomies as well as the deaths of women with preventable cervical and uterine cancers who could not afford care. They believed that health care was a human right and should be provided to everyone—and given that ethos, any type of health care that relied on an insurance system for delivery was unacceptable.30 Shades of the same argument exist today, as do the conversations surrounding fair and equitable delivery of health care.
“Though other stereotypes bug me now and again, it’s the assumption that I am in some way weaker and less capable due to my illness that drives me nuts (even though it’s sometimes true). People without chronic illness cannot know what it’s like to live with it every day; even when pain or other symptoms aren’t present, they linger like ghosts, ready to come out of the woodwork when we least expect it,” says Janet Geddis, the patient with migraine disease. “Healthy people don’t live with these specters.”
She echoes the sentiment expressed by many patients: unless you live with and experience the looming threat of symptoms firsthand, you can’t possibly understand the emotional and physical toll of chronic illness. The healthy can no more imagine what it is to be sick than I can imagine what it would be like to be healthy and free from illness-related activities. It is simply not part of the life I have ever known, so I can try to picture what that would feel like, and how that would shape the decisions I made, but it is just that—a picture of what I think it would be like, not what it actually is. However inevitable, this division does set up a sort of “us versus them” mentality. Perhaps these differences are inescapable, but I think what many patients are searching for is common ground, an entrée into the world of the healthy. The healthy might not understand living with the specter of symptoms that could re-emerge on a whim, but that is not something people want to envision, either. The irony is that nearly half of us live with chronic conditions, and the data suggests that number will only grow. The same specters that haunt patients today will affect many of “them,” too.
In the 1970s, women’s health advocates didn’t want these specters, either. Many of the stories in this book, and in the larger story of chronic illness, deal with chronic pain. It is an undeniable fact of life for millions of patients with diffuse conditions, particularly women. As we saw in the stories of diagnosis and doctor-patient relationships in the opening of this chapter, pain is at the root of so many of the conversations we have around illness and of so many of the tests and procedures we undertake with the hopes of better treatment. The pressing question remains, if the main focus and success of the women’s health movement was redefining the doctor-patient relationship, then why are there still so many instances where women in pain have such unsatisfactory encounters?
It’s a messy question with a complicated web of answers, but here are two of the most significant. First, admitting that pain and fatigue could be related to hormones or other gender and sex differences undermined the fight for equality that so many women waged in the 1970s. Research into sex-based differences in pain is only now emerging to help explain why men and women experience and therefore understand pain and illness in such disparate ways.
“Ironically, the women’s health movement … generally has been apathetic, if not resistant, to the issue of pain and fatigue. In their efforts to counter enemies portraying women as essentially ‘hysterical,’ feminist thinkers have gone too far to the opposite extreme in denying chronic pain’s reality, portraying it as mainly a tool of propaganda against us, a social construct,” observes Paula Kamen.31 So reluctant were they to be lumped in with the weak, psychosomatic archetypes of female patients throughout history that they completely distanced themselves from any position that included biological influence on fatigue or pain. The very existence of chronic pain, resistant to diagnosis—and potentially tied to female hormones—was contrary to the image of the strong, emboldened woman who was anything but a victim—not to her physician, not to her disease, and certainly not to her femaleness. This resistance makes sense in historical context, but given the current state of women and pain, it points to the need for a substantial redirection in how we address pain and sex-based differences.
The women’s health movement changed the way physicians saw their patients and empowered patients to be more active consumers. Criticism of the one-way, paternalistic doctor-patient relationship spawned new, necessary discussions about patient autonomy and role expectations. These discussions were similar to the conversations taking place around informed consent, medical research, and quality of life and the right to die. The 1970s were rife with other social movements, including workers’ rights and antiwar activism, but these particular social and political movements had both direct and indirect implications on health care and, ultimately, on chronic disease. Moreover, they formed the foundation for two of the most significant disease movements of the twentieth century: the early AIDS movement in the 1980s and the breast cancer movement. These disease movements demonstrate that the tenuous relationship between science and stereotypes and respect and resistance continued to evolve.