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

by Laurie Edwards

  The 1970s also marked the occasion of the first national breast cancer organization, Y-ME. Founded by breast cancer survivors Ann Marcou and Mimi Kaplan, Y-ME, which was forced to file for bankruptcy in 2012, considered itself foremost a survivors’ organization. The timing of Kushner’s advocacy and fledgling breast cancer organizations was significant. The public announcements that First Lady Betty Ford and Happy Rockefeller, wife of then vice president Nelson Rockefeller, both had breast cancer pushed the disease into a more national spotlight, the same way movie star Rock Hudson’s and basketball great Magic Johnson’s HIV/AIDS disclosures would years later.24

  Treatment progressed in 1985, when lumpectomies combined with radiation were found to be as effective as the much more invasive mastectomies.25 The 1980s were also when the patient advocacy and cause-related marketing that are so familiar to us now gained popularity. The now world-renowned Susan G. Komen for the Cure and the National Alliance of Breast Cancer Organizations (NABCO) were founded in 1982 and 1986, respectively. Founded by Nancy G. Brinker and named in honor of her sister, Susan Komen, who died of breast cancer, Susan G. Komen for the Cure (once called Susan G. Komen Breast Cancer Foundation) has provided more than $2 billion for breast cancer research through its Race for the Cure and other fund-raising efforts and is the largest nonprofit resource dedicated to breast cancer in the world. Its name alone denotes its primary mission: supporting science to find a cure for breast cancer, as well as ensuring quality health care for all patients. It has not been without its critics, either. Most recently, in 2012, Susan G. Komen for the Cure made headlines for its controversial decision to pull funding for breast cancer screenings from Planned Parenthood, often the only resource for such screenings available to minority and low-income patients. Komen officials later retreated from and apologized for the politically influenced move, but the incident galvanized critics who have feared the foundation has strayed from its mission for some time.26

  By the early 1990s, breast cancer activism developed into more grassroots efforts: support groups provided information on treatments and social support, and patient advocacy groups emerged to help empower patients to make their own decisions.27 The shared experiences among these groups evolved into what author and breast cancer activism expert Maureen Casamayou calls “collective entrepreneurism.”28 Many of these activist-patients were educated and politically skilled, having participated themselves in the civil rights and feminist movements of the 1960s. For these women, breast cancer was the occasion to move yet again from the personal to the political, something feminists and women’s health advocates had been doing for years.29 White women face the highest risk of breast cancer, though African-American women have a higher incidence at an earlier age. African-American women’s risk of death is about one in nine, a statistic attributed to delays in diagnosis.30 This question of health disparities is especially relevant in the context of the historical battles waged for impartial care for all patients. Women undergoing treatment for breast cancer cannot typically advocate until they are finished with rigorous treatments; at that stage, many are considered in remission.

  Cancer activism is complicated by the fact that the disease takes so many forms. “This not only impacts the scientific logistics of developing effective cancer treatments,” says Kairol Rosenthal, author of Everything Changes, advocate for young adults living with cancer, and a patient with thyroid cancer, “but results in splintered disease type factions all vying for a piece of the research funding pie … There is no formal body helping these groups to create a prioritized agenda based on variables of need. We lack the focus that the AIDS community had.” For example, groups like Breast Cancer Action, who focus on potential environmental causes of the disease, have a worthy fight, but to take up the environmental angle means they are pitted against every major polluting industry. This does not mean it isn’t a cause worth fighting, one that could yield a big difference for patients down the road, especially in terms of prevention, but it means less attention is put toward the needs of the patients already living with breast cancer. It is similar to the dilemma faced by those looking to isolate the environmental contributions to autoimmune disease, for example, which is a necessary and noble undertaking.

  “[The early AIDS movement] was so successful because they understood well how to tackle public policy and government … Finding a cure for cancer is constrained by the limits of science, but insuring more citizens is only constrained by the human limits of politicians. The AIDS community was a tiny group adept at applying pressure to the government,” Rosenthal says.

  Breast cancer patients and advocates did not depend entirely on the political organization but also on the “informal alliance of large corporations” that helped grow public awareness of it. Pharmaceutical companies, medical equipment companies, cosmetic companies, major cancer charities, and foundations emerged on the scene and had the effect of launching breast cancer into the spotlight as one of the most well-known, visible diseases. In 1985, Zeneca (now AstraZeneca, manufacturer of the best-selling breast cancer drug tamoxifen), founded National Breast Cancer Awareness Month (NBCAM).31 This was a precursor to what critics call the “pink-washing” of America, as well as the growth of disease-specific awareness months and charity events, with their color-coded ribbons and symbols, throughout the year. Coming after the increased interest in fitness and activity of the 1980s, the time was ripe for the proliferation of sponsored charity events, particularly walk-a-thons and races. Samantha King writes that the “thon” is the product of a “specifically post-1980s, post-yuppie anti-materialism” that grew in the 1990s and underscored the need to feel fulfilled by doing something for other people.32

  Now, breast cancer awareness month (October) is a cultural institution, with pink ribbons adorning consumer products in magazines, stores, and on television. The pink ribbon is “the most ubiquitous of these symbols, its presence on a T-shirt, a billboard, or a Hallmark card conferring an instantly recognizable set of meanings and values related to femininity, charity, white middle-class womanhood, and survivorship.”33

  The frustration some patients and advocates have with these types of events and cause-related marketing in general stems from the idea that gathering resources for research is important, but so are the emotional, physical, financial, and mental needs of those already living with illness. To augment Rosenthal’s point, in its 2010 annual report, for example, Susan G. Komen reported that 2.2 million received breast cancer education courtesy of a Komen grant. Fifteen hundred breast cancer patients undergoing treatment were given financial assistance for pain and anti-nausea as well as other medical treatments and medical equipment via a different Komen grant.34 “Many people defend the activity of raising awareness by saying, ‘If this pink ribbon convinces one woman to do a self-breast exam then it is worth it,’” Rosenthal says. “Helping a single person to conduct a test that has not been proven to be effective is exactly how we will continue to lose the war on cancer.” Despite smaller successes in treating breast cancer caught in the earliest stages, there is also much less attention paid to advanced metastatic cancer, which affects more than two hundred thousand people annually, with an average survival rate after stage IV diagnosis of only two to four years.35

  While those within the breast cancer community have an essential perspective on cause-related marketing, so too do patients outside of it. From patients whose disease groups have embraced the ribbon/thon/awareness culture to those who live beyond the pale of it—some 25 million Americans like me who live with rare diseases and will never see our diseases become a touchstone—we are all impacted by the merger of consumer culture and survivorship culture.

  Another potential consequence of cause-related marketing and activism is the expectations it puts on patients. What Samantha King calls “the tyranny of cheerfulness” is associated with many of these events. We know how comforting and necessary images of empowered survivors are. However, such emphasis doesn’t leave room for people who don’t
see this diagnosis as a lucky gift, who aren’t ready to point out silver linings—and, of course, for those who endured treatment and did not survive.36

  In Everything Changes, Kairol Rosenthal writes, “the ‘survivorship experience’ has become a cultural phenomenon that is used to advance our disease on a national political level, to increase awareness, and to rally for needed psychosocial support services. Survivorship stories have also created a stereotype of cancer patients—even young adult cancer patients. We are seen as vocal, outspoken, sassy, sexy, insightful, spiritual, grateful, and empowered.”37 She told me she prefers the term “cancer patient” to “cancer survivor.” As she described it, people who are not patients have this notion of finality—they latch on to what they know from popular culture. We want to put the most familiar vernacular on it, and people know the term “remission.” People tend to think of a finish line that you cross as a cancer patient, she says, and all these pictures of people crossing finish lines in charity events perpetuate the stereotype of the valiant, effervescent cancer survivor. Within this paradigm, the long-term fear of recurrence doesn’t get much attention, which she sees as a real problem. Plus, not everyone has access to the right treatments or gets diagnosed in time to have the survivorship experience our culture clings to tenaciously.

  The issues apply to chronic illness in powerful ways. For one, there is obviously no finish line with chronic illness, literally or figuratively; we just live with symptoms that wax and wane and will continue to do so. Without that finish line that denotes survivorship, there is not the same level of cultural awareness or acceptance of our diseases, no backdrop of success with which outsiders can judge our journey. Our survival is more subtle and nuanced; it entails adaptation and negotiation, and is as fluid as our disease progression and symptoms are. It is this fluidity that Rosenthal sees missing in discussions about “surviving” cancer, and is part of the overall process of some cancers evolving into chronic diseases. The upside to this evolution, Rosenthal says wryly, “is that you didn’t die.” But living with cancer long-term, as she does with her thyroid tumors, is not a concept society has made room for as readily. It is a murky, gray space, when for so long we have thought about cancer in the static terms of living or dying.

  This is not to say other chronic diseases have not benefited from breast cancer activism and, in particular, from cause-related marketing—or that there isn’t true value and benefit in cause-related marketing’s existence at all. In fact, it is now synonymous with much of the patient advocacy we have come to know. From arthritis to multiple sclerosis to lupus, there are numerous events that take place each year and hard-driving disease organizations that work to fund research and support services for patients. I have sponsored many walkers and runners, and I know that the community and energy they build are inspiring and helpful to patients and families and that alone makes them incredibly valuable. In many instances, funds raised can result in better understanding of treatments, new medications, or progress in the long journey toward a cure. I’ve done several benefit walks for my local children’s hospital, where I spent much of my childhood, until my own symptoms made that more challenging in the humid summer months and I couldn’t.

  “I use the word ‘slacktivism’ to characterize the first decade of the twenty-first century when it comes to consumerism and illness. It is a given that cause-related marketing is in place to benefit sales and increase the profits of corporations while giving them a tax deduction,” Rosenthal says. The “slacktivism” she criticizes, where we can click on links to donate or purchase products without any significant investment of human capital, has raised awareness for breast cancer and many other diseases, but ultimately, she views raising awareness as setting the bar too low.

  “Two decades ago, when cancer was still somewhat of a whispered word, awareness was an important goal. But the cancer community has worked hard to achieve this goal and now needs to think about what are the next big steps. I think our next big goals involve starting to research causes and prevention, increasing access to life-saving drugs, and educating patients so they can take a more vocal role in helping to prioritize how funding is used so our research dollars can go farther,” Rosenthal says.

  Kathryn Ratcliff argues that breast cancer prevention—not just earlier detection, or improved therapeutic agents—would also entail a steadfast exploration of the environmental contributors to the disease, such as long-term exposure to hormones like estrogen and chemicals in plastics and pesticides. In a medical system that supports the biomedical model, where researchers and corporations and pharmaceutical companies all have their hand in the mix, making sure the needs and priorities of the patients come first is a challenging venture.

  Invisibly, Impossibly Ill: Chronic Fatigue Syndrome

  Paula Kamen writes about a particular subset of female patients whom she dubs the Tired Girls, sick with invisible illnesses (chronic fatigue, fibromyalgia, migraines) that in many cases have elicited doubt from health care providers. Melissa McLaughlin is one of the Tired Girls. She describes people who roll their eyes at her or come right out and tell her that CFS is a made up disease, a present-day hysteria, or that ‘everybody gets tired.’

  “Chronic fatigue syndrome is not the same as feeling tired because you were up all night studying for finals. Trust me,” McLaughlin says. “It’s hard to not have control over your everyday routines—to not be able to just go and do something without a ton of planning ahead of time. It’s hard to live in … what I’ve always called the ‘untils’ … until something else goes wrong, until something improves, until there’s a new drug that actually works for you, until there’s an upswing in your symptoms … It’s hard to see your peers doing things with their lives that you want to be doing with yours, and to know that you’re just not physically capable of doing those things right now—or might never be. It’s hard to be a grown woman and depend on your mother for a place to live, food to eat, the ability to take a shower or get to a doctor’s appointment. It’s hard not to figure out who you are now, now that you’re pretty damn sure you aren’t ever going to be ‘cured,’ but will always be a person with an illness,” she says.

  The phrase Tired Girls has stayed with me for years, because I know so many Tired Girls, because when some of my conditions flare, I am a Tired Girl who pays for the energy she expends, who must make calculated decisions about daily activities healthy people have the luxury to do without forethought or planning. The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better. She is far removed from the cancer survivor triumphantly crossing the finish line in her local fund-raising event, surrounded by earnest supporters. The Tired Girls have few cheerleaders, and, often lacking correct diagnoses or effective treatments, wouldn’t even know how to define what or where their finish line is.

  Chronic fatigue sits squarely outside that biomedical model. Dorothy Wall writes, “There’s no cultural representation for an enervating chronic illness like CFIDS. No valiant image, no stouthearted icon. You’d think, with the rising numbers of chronically ill, our cultural imagination would have expanded beyond the heartwarming and trite … What’s disturbing is the elevation of accomplishment, its distillation into the moral equivalent of valor.”38 While the disease activism and agency of the 1980s into the ’90s conjure up images of action—legislation passed, protests launched, funds raised, and miles walked—the concurrent advent of chronic fatigue syndrome tells a different story altogether. There are no pathology reports, surgical notes, or arsenal of chemical agents to treat it the way cancer is managed. There is no expectation of survivorship, partly since there is no cure, but partly since so many of us are quick to deny its existence in the first place.

  It was the late 1970s and early ’80s when a flu-like illness first began sending patients, many of them female, to doctors’ offices around the country. Unlike the flu virus, it didn’t go away. People complained of symptoms ranging
from headaches and sore throats to brain fog and memory problems to muscle pain and, most significantly, profound fatigue that did not respond to rest. Unlike other infections, this illness didn’t alter the patient’s blood count perceptibly, it didn’t kill them, and above all, it didn’t go away. This transpired under what Wall calls the “dark undertow of AIDS.”39 With a lethal, infectious disease scaring the general populace and protest stories splashed across headlines, few had interest in a vague set of complaints about what many derisively called “yuppie flu,” in a nod to the demographic most likely to suffer from it. Patients slogged on for months and years without significant improvement, and it wasn’t until 1988 that the Centers for Disease Control and Prevention named the mystery illness chronic fatigue syndrome, a move that was not and is not without controversy.40

  Some sociologists consider CFS to be a post-modern illness of our time. We favor constant activity, speed, and scheduled-ness that patients with CFS cannot adhere to, and often illness is blamed on these unwelcome features of modern life. CFS is not simply an illness, but a cultural phenomenon and metaphor of our times.41 It evolved and spread in the community, making sense of distress by means of an acceptable narrative within the biomedical model. Once a set of symptoms has a label, critics suggest it heightens the risk patients will use the label to reinforce their sense of sickness.42 Physicians often view the CFS diagnosis as a self-fulfilling prophecy, particularly when self-diagnosed patients seek their help.

  On the other hand, many patients feel ascribing a label to these symptoms bestows relief, acceptance, and an end to the uncomfortable journey toward finding out what is wrong. Remember Aviva Brandt and her fervent hope to have a label, to be able to pull up a URL to describe her mystery illness to inquiring minds?