We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.
“In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.
When I was first diagnosed with endometriosis, I thought a lot about a horrific piece in The Atlantic about medical professionals not believing women who are in agonizing pain, causing them to get sicker and sicker. Systemic medical misogyny, the article explained, accounted for longer wait times in emergency rooms and delayed diagnoses—and of course, had a tenfold impact on women of color. Three years after my diagnosis, I am well acquainted with this phenomenon that used to seem like a distant horror. In that time, I have also watched other women write their own stories, and the stories of other patients, to as Abby Norman, author of Ask Me About My Uterus, puts it “make doctors believe women’s pain.”
More Books, More Awareness
Since January, Porochista Khakpour, Michele Lent Hirsch, Maya Dusenbery, and Norman have all released harrowing books about gaslighting doctors, insurmountable medical bills, and their struggle to function in a society that tells them their pain is all in their head.
“It would be noble of me to say that I set out from the first word I wrote to help other people, but in the beginning I was just trying to help myself,” says Norman, whose book documents her struggle to be diagnosed with endometriosis and get proper medical care. Hirsch, whose book Invisible addresses “how young women with serious health issues navigate work, relationships, and the pressure to seem just fine,” says her own health issues drew her to explore what it means to be a sick woman in today’s world. When Hirsch was being treated for thyroid cancer in her mid-20s, people would often tell her she was “too young, too feminine, too pretty, too insert-adjective-here, to be sick.”
“I noticed people seemed unable to reconcile a young woman’s face or appearance with this severe and very real experience I was going through,” she says. “It was like nobody could believe a young woman could be sick or disabled.”
Dusenbery’s book, Doing Harm, combines interviews with patients and doctors with medical and historical research to examine how “bad medicine and lazy science leaves women dismissed, misdiagnosed, and sick.” She started researching the relationship between gender and how pain is treated after she was diagnosed with rheumatoid arthritis about five years ago. Though she went into remission fairly quickly and no longer considers herself chronically ill, Dusenbery realized that, outside of reproductive rights, she didn’t have a good understanding of how sexism influenced the relationship between doctors and patients.
So in 2015, she wrote an article for Pacific Standard about some women not immediately seeking care after having a heart attack because they feared, in part, that doctors would see them as hypochondriacs. “Heart disease is the number one killer of both men and women in the United States, yet it’s long been considered a ‘man’s disease’ in the popular imagination,” she writes.
“This perception likely stems, in part, from the fact that coronary heart disease, the most common cause of heart attacks, is more prevalent among men—and tends to strike them at a younger age,” she writes. “When younger women do have heart attacks, studies have found that they are about twice as likely to die as their male counterparts—and more than 15,000 women under the age of 55 do every year.”
Dusenbery found that many patients weren’t aware that heart attacks present differently in men and women, and as a result, didn’t realize they were having one. And their fear of being labeled a hypochondriac was justified: Many women who’d had heart attacks were told they were just experiencing “anxiety.”
Khakpour, whose memoir, Sick, documents her struggles with late-stage Lyme disease, is used to doctors treating her differently and being patronizing toward her because she is a woman. “Recently a beloved doctor of mine called me a ‘handful’ and I was just like, ‘Wow, would you call a male patient that?’” she says. “There is a lot of patting me on the head, even from my favorite doctors,” she says, and it was even worse before her diagnosis. “I was always the ‘hysterical’ woman.”
Chronic-pain patients say #MeToo
We are seeing a groundswell of women speaking up about the ways in which our patriarchal society perpetuates and enables systemic sexual violence. Perhaps it isn’t surprising then that the fight to make the medical community and society at-large believe women who are in pain mirrors the #MeToo movement. Like the women speaking out about systemic sexual harassment, women living with chronic pain or chronic illness are fighting to be believed in a misogynistic medical system that belittles their struggle and disregards their humanity.
“They’re both about, at root, trusting women, and no longer normalizing or seeing systemic problems as an individual problem,” says Dusenbery. “[It’s] also about pulling back the veil of silence to see these experiences are actually pervasive and really move from thinking ‘this was terrible and felt really fucked up’ to seeing it as a collective problem.”
Dusenbery likens the way women stay silent about chronic illness to the silence surrounding sexual violence; doctors dismiss women, make them feel like their pain isn’t real, and shame them for not better advocating for themselves. As a result, women don’t talk about these issues, and don’t realize how many other women have similar experiences. By some estimates, almost half the women eventually diagnosed with an autoimmune disease are at one point told they’re being a hypochondriac or are “too concerned with their health,” and studies show women are more likely to have their pain misdiagnosed as a mental-health condition. And while 70 percent of chronic-pain patients are women, 80 percent of pain studies are conducted on men or male mice.
Like the women speaking out about systemic sexual harassment, women living with chronic pain or chronic illness are fighting to be believed in a misogynistic medical system that belittles their struggle and disregards their humanity.
I’ve seen these parallels firsthand: People with chronic illness are socialized to blame ourselves for being in pain. Out of that doubt grows something similar to the “perfect victim” complex: Some of us want to be the perfect patient, so we winnow our lives down so that no one can tell us our pain is “just stress” or that we’re somehow bringing it on ourselves. At the same time, if we power through the pain, we’re told we’re “strong” and that we’re “fighters,” as if the alternative is being weak or a failure.
Dusenbery calls this a catch-22. “Women are expected to have an emotional response to pain,” she says. “If they’re stoic, it’s assumed nothing is really wrong. But if they’re emotional, they’re seen as hysterical.”
Much like sexual-violence survivors, chronic-illness patients also have whisper networks; we warn each other in private Facebook groups and through Twitter DMs about doctors who mistreated us or violated us emotionally or physically. We also share tips about the emergency rooms in our areas that are the most sympathetic to patients with chronic illnesses, and if we’re lucky, the doctors who might be able to help diagnose or treat particular conditions.
Norman says that social media has allowed women to create a “united front” while having public conversations about medical misogyny, but it’s still going to take a long time to change the medical community’s culture of disbelief around female pain. While Norman sees a connection between the awakening around sexual violence and the movement to get proper treatment for women with chronic illnesses, she doesn’t feel like there’s been an aha moment for the chronic-illness community.
“The historical precedent for [all of] these issues goes back a very long time,” she says. “We didn’t get to that point of silence and secrecy overnight. So we’re not going to change it overnight either.”
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What comes next?
Before I became sick, most of my work revolved around reproductive justice, specifically abortion access, and I gave little thought to the ways in which misogyny pervaded medicine beyond that. So watching prominent feminists, including actresses, activists, and writers rally around an issue that is still woefully overlooked is one of the most encouraging and compelling things about these books. Gillian Anderson and Padma Lakshmi, an endometriosis advocate, reviewed Norman’s book. And Dusenbery’s book received high praise from Gloria Steinem and Jessica Valenti, who said Doing Harm“brings new life to one of the most urgent, yet under-discussed feminist issues of our time.”
While the near simultaneous release of these books seems to point to a surge in coverage of chronic illness, the work itself isn’t new. Hirsch points out that she, Norman, Khakpour, and Dusenbery have been working on their books for some time, but she hopes that this “burst” of books can help change “our cultural ideas about gender, illness, race, mortality, and the whole shebang of being in a human body.” That shift is already beginning to happen: Hirsch has received notes from readers all over the country, and several therapists have told her they’ve read Invisible and recommended it to their patients.
“But I don’t know about doctors,” she says. “I hope the larger medical community does notice this groundswell of voices asking for an examination of the systemic bias against women, trans folks, against people of color, against young people.”
Dusenbery is also optimistic, attributing the change partly to a generational awakening to these issues.
“I think we’re starting to see a critical mass of millennial women start having experiences of illness and coming up against this dismissal and distrust of their voices within the medical system,” she says. “I think lots of us—at least those of us with some educational and class privilege—were raised to take for granted that we’re going to be taken seriously and really feel entitled to that. And so, entering this space where we’re really not, where our accounts of this reality of our own bodies is questioned, is really shocking. Whereas previous generations probably normalized this stuff a lot more.”
Khakpour says that now, more than ever, it’s crucial that we listen to women in pain, and that they’re given platforms to tell their stories. “People need our narratives,” she says. “They should have needed them yesterday, of course.” She hopes people will read Sick, perhaps find themselves, and in that shared experience, find hope.
“It’s one human’s story that just maybe looks like some other human’s story,” she says. “And maybe the most hopeful aspect here is that I am still here. And so are you. And we are reading and experiencing this exchange together. That’s a precious lot.”
I couldn’t agree more, and I hope these books bring about the aha moment that Norman’s seeking. For chronic-pain patients, who have been gaslit, disbelieved, and mistreated, such a moment is long overdue.