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

by Laurie Edwards

  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.

  An Unexpected Link Between Women’s Health Advocacy and Pain

  “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.

  Chapter 5

  Culture, Consumerism, and Character

  Chronic Illness and Patient Advocacy in the 1980s and 1990s

  While I shuttled from one pediatric specialist to another in the 1980s, I was only tangentially aware of the burgeoning AIDS epidemic, or of the fledging activism first initiated by the gay community that strengthened in power and broadened in its mission. I watched a movie about the Ryan White story and celebrated World AIDS Day for the first time as a high school freshman in 1994, but these events were mainly white noise in the background of my daily life. The 1980s were also the years when the modern breast cancer movement emerged from the smoldering recent history of the feminist movement and the consequent changes in how we perceived women’s health and the role of the female patient. I was too young and too busy being sick myself to be aware of them, but the disease epidemics and the advocacy groups that developed in response to them would alter the course of the modern-day patient-hood that so many of us live every day.

  Around the same time these Reagan-era patient movements gained momentum, each with its own political and social agendas, the first waves of patients with what would later be called chronic fatigue syndrome (CFS), or chronic fatigue immune dysfunction syndrome (CFIDS), showed up in doctor’s offices. The trajectory of the “yuppie flu,” which often affected upper-middle-class-white women, set its own course. For patients living with the invisible condition, it would be a different path from the one AIDS activists forged, but one equally susceptible to the associations many are quick to draw between illness, individual responsibility, and moral character. It is an association a large and divers
e group of patients struggle under today, particularly in a time when “diseases of affluence” often dominate the political and social conversations around chronic illnesses. The relationship between our lifestyle and decisions and their medical and social ramifications is as problematic today as it was when first-generation AIDS activists declared foremost that instead of being called patients or victims, they were “People With AIDS.”1 In recognition of the social stigma surrounding their diagnoses, one of their first recommendations was that all people “not scapegoat people with AIDS, blame us for the epidemic or generalize about our lifestyles.”2

  Let’s take a step back and consider the state of chronic disease prior to the AIDS epidemic. By 1979, chronic illness was perceived to be the primary health concern facing Americans, and by the late 1990s, the proportion of deaths related to chronic illness had risen 250 percent from the beginning of the twentieth century.3 In Toba Schwaber and Lawrence A. Kerson’s Understanding Chronic Illness, published in 1985, the authors focus on nine conditions that were among the most prevalent at the time: diabetes, heart disease, stroke, cancer, arthritis, respiratory disease, epilepsy, dementia, and substance abuse. As incidence and awareness of chronic illness grew, it did so in the face of cultural ideals of strength, fitness, and independence that were increasingly hard for patients to meet. Kerson and Schwaber noted at the time that, “the ability to be spontaneous, to have boundless energy, to look perpetually eighteen years old, to jog, to dash here and there is the ideal.”4