Any woman who has been to the doctor for symptoms she couldn’t source, or pain she couldn’t immediately describe with the right combination of calm confidence and urgent concern, has likely wondered if her experience struggling to be taken seriously in a medical setting is typical. We second-guess ourselves, fretting over whether we really need to go to the emergency room or ask our primary care physicians for specialist referrals.
We can feel isolated—until we start speaking to other patients. Quickly, it becomes clear that the medical system in all its patriarchal glory has commodified women-identified patients without catering to our basic needs for validation and care.
In her new book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, out this week, Feministing Editorial Director Maya Dusenbery pulls back the curtain on the history and current state of the medical profession to explain why women with chronic illnesses are not receiving the care they need. It’s a book every person working in health care should read and all those who identify as women should take with them to the doctor. As Dusenbery writes, “the problems explored in this book don’t solely affect cis women. All women—cis or trans—are affected.” Therefore, we must be our own best advocates in this imperfect (at best) system. Her book is a crucial advocacy tool for individuals as well as those seeking wide-scale change.
“I hope that this book helps women who’ve felt dismissed or unheard … see that their experiences aren’t just the result of bad luck or their own failings, but instead that they reflect deeper, systemic problems in the medical system,” Dusenbery writes.
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Dusenbery opens with her story of being diagnosed with rheumatoid arthritis (RA)—a chronic, painful autoimmune disease—at the age of 27. She quickly discovered that 50 million Americans suffer from autoimmune diseases, the majority of them women. While her path to a diagnosis was relatively smooth, it takes an average of four years and four doctors to fight through the label of “chronic complainer” for most patients with a rare illness—often longer for low-income patients and women of color. Once she realized just how uphill the battle for competent care remains, she set out to determine why women-identified patients are so likely to be dismissed, even when presenting with something as severe as stroke or heart attack symptoms.
What she found blew my mind—and health care is my beat. As a 38-year-old with multiple chronic illnesses, I was ready to simmer with outrage and sigh with appreciation for her work throughout all 400 pages. I wasn’t, however, prepared to be shocked at the ongoing blatant disdain for effective research standards and systemic problems in medical school education, which spits out doctors trained to compare every patient to a white, middle-class, healthy man. These attitudes took root, Dusenbery writes, as men decided during the Industrial Revolution that they would drag healing into the marketplace—which required yanking it away from women.
“In women’s hands, healing was not a profession, but a ‘neighborly service.’ By the late eighteenth century, though, a new class of professionals, ‘regular’ doctors, was seeking to turn healing into a commodity that could be bought and sold,” writes Dusenbery.
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The misogyny underlying the early days of “regular medicine” led to a significant gender gap among medical professionals that persists today. This gap exists from classrooms to labs to peer-reviewed journals:
In 2014, only 21 percent of full professors, 15 percent of department chairs, and 16 percent of deans at American medical schools were women … Only about 30 percent of researchers receiving NIH [National Institutes of Health] funding are women … [And] women make up just 17.5 percent of all editorial-board members of sixty major medical journals.
When the gatekeepers are men, it’s no wonder that diseases primarily affecting women are woefully underfunded and under-researched.
They’re also under-identified by doctors. Dusenbery does a commendable job tracing conditions like endometriosis and multiple sclerosis (MS) back through history to the days when any ill or misbehaving woman’s troubles or hysteria would be traced to their “wandering uterus” or troublesome ovaries. She quotes researcher Colin L. Talley explaining that the surge in “new” MS diagnoses starting mid-20th century was due to a shift away from those long outdated theories: “As hysteria gradually declined as a neurological diagnosis … physicians interpreted increasing numbers of these patients, especially women, as having MS.”
More than 200 years later, the discrimination deeply embedded in the health-care system has led to an intense “knowledge gap” that persists all the way down to a cellular level. “[I]nvestigators,” she writes, “overwhelmingly use male cells and animals in preclinical studies.” Not only were adult women almost completely left out of legitimate, consensual research and development until the late 1990s, but researchers largely don’t bother to use female mice because their hormone fluctuations can make results inconsistent.
While the National Institutes of Health didn’t require gendered analysis of clinic studies during that period, a handful of examples outline the gratuitous level of bias during the mid-to-late 20th century:
- “The Baltimore Longitudinal Study, which began in 1958 and purported to explore ‘normal human aging,’ didn’t enroll any women for the first 20 years it ran.”
- “The Physicians’ Health Study, which had recently concluded that taking a daily aspirin may reduce the risk of heart disease … [was] conducted on 22,071 men and zero women.”
- “An NIH-supported pilot study from Rockefeller University that looked at how obesity affected breast and uterine cancer didn’t enroll a single woman.”
- “Twelve percent of [medical] schools reported [in the mid ’90s] that they had a curriculum on women’s health—which often just meant a seminar on a single topic like domestic violence.”
In the early 1990s when Congress was looking into the shoddy state of affairs for the women of this country, it discovered that “there were only three gynecologists on staff at the NIH, compared to thirty-nine veterinarians.” In 1993, a federal mandate required women to be included in drug trial studies. This was hardly a complete solution, as it didn’t require researchers to analyze results by gender and drugs are only one segment of medical research.
As Dusenbery writes, adding the “trust gap” on top of the knowledge gap creates a mutually reinforcing cycle: “Women’s symptoms are not taken seriously because medicine doesn’t know as much about their bodies and health problems. And medicine doesn’t know as much about their bodies and health problems because it doesn’t take their symptoms seriously.”
Women of color are even more likely than white women to have their symptoms downplayed and their experiences disregarded—a particularly heinous truth considering the history of the modern era of medicine. Dusenbery quotes authors Barbara Ehrenreich and Deirdre English’s seminal work For Her Own Good: Two Centuries of the Experts Advice to Women, which describes the 18th and 19th century landscape of heroic medicine: “Though middle-class women suffered most from the doctors’ actual practice, it was poor and black women who had suffered through the brutal period of experimentation.”
Dusenbery goes on to describe the methodology of the “father of modern gynecology,” Dr. J. Marion Sims, who practiced surgical procedures on enslaved women he purchased for experimentation.
As personal stories like those of Serena Williams show, we as a culture and medicine as a discipline continue to disregard the experiences of women of color. Black patients are 22 percent less likely to get pain medication after traumatic injuries and surgeries—a statistic that highlights both the inaccurate bias about opioid addiction and the systemic disregard of Black patients’ pain. Black women are regularly on the receiving end of compounded bias, which Dusenbery explores through patient experiences like “Jackie’s.” She had been sick and frustrated for ten years, struggling to be taken seriously as she suffered.
“Midway through graduate school, Jackie finally caught a break. She had been sick for months, burning up with a fever that the doctors, despite soaking her in antibiotics, could not break. ‘A primary care doctor—a woman of color—believed me, and she collected all of my medical records and literally took them home with her and started trying to piece them together like it was a puzzle,'” writes Dusenbery.
Her new doctor suspected correctly that Jackie might have lupus—a disease three times more likely to affect Black women. Her frustration didn’t end with the diagnosis. Lupus patients are up to 50 times more likely to have a heart attack than the general population, so when she experiences symptoms of pericarditis (inflammation of the sack around the heart) she goes straight to the ER. Routinely, staff refuse to take her seriously and send her home. Eventually, she started frustratedly employing a tactic that shouldn’t be necessary:
During one of her most recent hospital admissions, with documented inflammation in her stomach, she was supposed to be getting pain management every couple of hours, but the nurse refused to give it to her. Fed up, she angrily demanded care from the doctor and happened to mention that she was a professor. ‘Suddenly it’s like this light goes off … They assumed I was homeless or extremely impoverished and coming off the street just to get a meal and some drugs. I wasn’t a human being worth caring for until I said I had a Ph.D. Then suddenly I’m getting pain management, I’m going to radiology, I’m getting my CAT scan.’ Jackie says that even though it’s antithetical to the politics that she believes in to make a distinction between herself and a poor black woman, she has acquiesced to her parents’ insistence that she start playing her Ph.D. card whenever she seeks medical care. Now she adds that to the list of things she does before going to the hospital: putting Dr. on all her paperwork.
Dusenbery describes similar stories from patients who discovered bringing their husband, boyfriend, or father with them to appointments resulted in their symptoms being taken more seriously. As much as these patients find it frustrating and infantilizing to need a male presence in the exam room, they are doing whatever is necessary to get help in a system with terrifyingly little accountability.
The medical profession encourages individual doctors to see themselves as infallible. After all, how many of us have gone back to a physician (or physicians) who didn’t believe us after finally getting an accurate diagnosis? There currently is little to no accountability for misdiagnoses despite medical error being the third leading cause of death in the United States.
As someone who was repeatedly misdiagnosed in my teens and 20s, I certainly know I do not have the energy and money to go find them all and force them to reckon with the harm they’ve done. In this, I’m a fairly typical chronically ill patient: I’m mentally and emotionally fatigued, low-income, and physically exhausted just trying to do life. I rely on the medical profession to handle their business—what choice do I have?
Dusenbery urges us to make as much noise as possible about the myriad inequities in the system. She also makes suggestions that could change the future of care for those with the most often missed and misdiagnosed illness.
One possible solution is to establish “autoimmune centers, like heart and cancer centers, where patients with a suspected autoimmune disease could be diagnosed by an expert.” Currently, the quarter of American women suffering from an autoimmune disease don’t have an immediately obvious specialist to see; there simply aren’t RA and MS doctors like there are oncologists for cancer.
We also have to do something about diagnosing the rare diseases affecting 30 million people in the United States. Unsurprisingly, there’s an additional diagnostic delay for women with a rare illness beyond the average four primary care doctors and four specialists (typically over the course of seven years). And that’s just to get a possible name for what they might be suffering from. “Given women’s vulnerability to a psychogenic misdiagnosis [being told it’s ‘all in your head’], it is perhaps not surprising that women reported significantly longer diagnostic delays than men,” writes Dusenbery.
Despite modest changes being imposed here and there, Doing Harm methodically and thoroughly lays out an indictment of the medical systems that still largely discount the experiences of women both individually and collectively. And it truly is all women. “Our intersecting identities may make the particular stereotypes that hurt us different—in some cases, even diametrically opposed,” she writes, “and yet somehow we so often end up in a similar place: fighting to have our reports of our systems trusted and taken seriously …. All women, then, have a vested interest in seeing medicine finally explain the many ‘medically unexplained’ syndromes that disproportionately affect women.”
Dusenbery calls for “allies within medicine who have an alchemist’s power to turn patient anecdotes into scientific research” and more exploration and critical analysis of women’s bodies—the full spectrum of those who identify as women.
Further, we all must demand our physicians and other caregivers be cognizant of gender disparities. When handed a new prescription, ask whether or not it has been tested on women to determine dosage differences and possible side effects. And, importantly, know that when you are feeling dismissed in the exam room you are not alone; you are on that table with literally tens of millions of women who are with you as you challenge the sexism you’re facing.
Ultimately, Doing Harm demands nothing short of system-wide change, starting with a call to providers at the most basic level: “It is up to the medical community to earn back women’s trust. And some of the changes needed are big systemic ones, ones that are difficult to implement and will no doubt take time, but there is one that is simple and can be accomplished tomorrow: Listen to women. Trust us when we say we’re sick. Start there, and you’ll find we have a lot of knowledge to share.”