Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick

by Maya Dusenbery

Illness, like love or grief or any other important aspect of human experience, is difficult to talk about without falling into clichés. One of the truest, in my opinion, is that your health is something you take for granted until you lose it. As someone who was healthy for twenty-seven years before becoming ill, I had come to expect that I could count on my body. It had always provided a comfortable, resilient home, one that, as a lifelong athlete, I felt a great deal of control over. Before, it was often a source of pleasure, and when it was in pain, it was a pain I chose willingly to make it stronger and faster. Most of the time, though, I forgot my body entirely. It was the loss of this luxury that I felt most acutely when my immune system started attacking my joints. Suddenly, I was always aware of my body; no matter what I was doing, some part of my attention was pulled to the constant aching in my knuckles and knees, and I deeply resented the intrusion.

I realized that my relationship to the medical system, like my relationship to my own body, had been very much influenced by my status as a fairly healthy person. Just as I’d had the luxury of not thinking very much about my body until it broke, I’d also given little thought to how well the medical system was equipped to care for me if it did. I’d always known, of course, that there were thousands of ways a body could break, but such theoretical possibilities don’t matter much to an invincible twentysomething. Likewise, I knew, intellectually, that doctors and scientists are just fallible human beings, affected by the biases we all are, and that biomedical knowledge is incomplete. But as long as I didn’t personally have much need of medicine, it was easy to not think about its limitations.

Second, there is a trust gap: women’s accounts of their symptoms are too often not believed. For centuries, Western medicine tended to throw many of women’s inexplicable symptoms into the catchall diagnostic category of hysteria. The explanation offered for this mystery female malady shifted over the centuries, but at the end of the nineteenth century, hysteria came to be seen as a psychological problem. Ever since, a medical profession that increasingly understands the underlying cause of many diseases—and can objectively confirm patients’ reported symptoms with blood tests and high-tech scans—has tended to attribute to “the mind” any that it can’t see and explain. The terminology has morphed—from hysteria to somatization and conversion disorders to “medically unexplained symptoms”—but the idea has remained remarkably unchanged. And the idea that women are especially prone to such psychogenic symptoms has endured too. In other words, a stereotype that women’s symptoms are likely to be “all in their heads” has been hard baked into medical knowledge itself.

Are women’s complaints so often dismissed because doctors simply don’t know enough about women’s bodies, their symptoms, and the diseases that disproportionately affect them? Or are women’s complaints so often dismissed because doctors hold an unconscious stereotype that women are unreliable reporters of their symptoms? Is it a lack of knowledge or a lack of trust? It seems to be both. The knowledge gap and the trust gap are so tightly interwoven at this point that they could be thought of as two sides of the same coin: 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.

When I discuss differences between men and women—whether in relative risks of certain diseases or in how they’re treated by health care providers—I generally mean cis people simply because our knowledge of such differences has been derived largely from research on them. But it should be noted that the problems explored in this book don’t solely affect cis women. All women—cis or trans—are affected by the trust gap. And the knowledge gap affects anyone, regardless of their gender, whose sex is assigned female. In fact, since relatively few diseases target solely women, the bias within medicine affects everyone. Plenty of cis men have been hurt by the dearth of knowledge about conditions that disproportionately affect women. And putting comparatively less effort into understanding the bodies of one half of the population, and the ailments that happen to especially affect them, has left gaps in our scientific knowledge that have deprived us all.

These kind of overt microaggressions may be less common these days, or at least easier to brush off in an era when women have more power. But it is the more subtle stories that are more pervasive—and more dangerous, because the gender bias they reflect is harder to pin down if you see each story only in isolation. The doctor who didn’t listen—but perhaps that’s just how he is with everyone? The time your symptoms weren’t taken seriously—but, in retrospect, maybe you could have done more to advocate for yourself? The many misdiagnoses of “stress” that you can’t really imagine a male patient receiving—but then again, how can you know that for sure?

Many women in the United States are sick, and they’re getting sicker. Since the turn of the twentieth century, women have lived longer than men, on average. But the gap has been narrowing since the eighties, when men’s life expectancy began increasing at a faster clip than women’s, largely thanks to a decline in deaths from cardiovascular disease. And the additional 4.8 years of life expectancy that women currently have do not come with better health. Women report poorer health, both physical and mental, and are hospitalized more than men throughout adulthood. In their later years of life too, women are worse off than men. When it comes to “active” life expectancy—the number of years living free from significant limitations that prevent you from doing everyday tasks—men have overtaken women over the past three decades. Women still live longer, but men live better longer. This difference—women’s lower mortality but higher morbidity—has been known as the “gender paradox.” Tellingly, from the seventies through the nineties, some researchers questioned whether women were really as sick as they claimed, suggesting instead that women are actually healthier than men (after all, they aren’t as likely to die!) and only rate their health as worse because they’re less stoic. Today, it is well accepted that the paradox has a different, straightforward explanation: women have higher rates of debilitating but not life-threatening chronic diseases. Women are not any more likely to report...

Given the NIH’s lack of record keeping, it was impossible to say exactly how underrepresented women were, but the public learned that women had been left out of many of the largest, most important clinical studies conducted in the last couple of decades. The Baltimore Longitudinal Study of Aging, which began in 1958 and purported to explore “normal human aging,” didn’t enroll any women for the first twenty years it ran. The Physicians’ Health Study, which had recently concluded that taking a daily aspirin may reduce the risk of heart disease? Conducted in 22,071 men and zero women. The 1982 Multiple Risk Factor Intervention Trial—known, aptly enough, as MRFIT—which looked at whether dietary change and exercise could help prevent heart disease: just 13,000 men. The default to studying men at times veered into absurdity: in the early sixties, observing that women tended to have lower rates of heart disease until their estrogen levels dropped after menopause, researchers conducted the first trial to look at whether supplementation with the hormone was an effective preventive treatment. The study enrolled 8,341 men and no women. (Although doctors began prescribing estrogens to postmenopausal women in droves—by the midseventies, a third would be taking them—it wasn’t until 1991 that the first clinical study of hormone therapy was conducted in women.) An NIH-supported pilot study from Rockefeller University that looked at how obesity affected breast and uterine cancer didn’t enr...

Furthermore, despite the fact that millions of American women were on the pill, a mere 12 percent of the recently approved drugs had been studied for potentially dangerous interactions with oral contraceptives.

Among the conditions that predominantly affected women was, of course, all of reproductive health. In the wake of the GAO report, other medical-professional organizations, including the Institute of Medicine (IOM) and the American College of Obstetricians and Gynecologists, joined the growing chorus claiming that funding for research on women’s reproductive health was inadequate. The political controversy around abortion was part of the problem, but such research was also marginalized because, with no obstetrics and gynecology program, there was no clear home for it within the NIH. In fact, there were only three gynecologists on staff at the NIH, compared to thirty-nine veterinarians.

“The medical community has viewed women’s health with a bikini approach, focusing essentially on the breast and reproductive system,” Dr. Nanette Wenger, a leading expert on women’s heart disease, wrote. “The rest of the woman was virtually ignored in considerations of women’s health.” This kind of “bikini medicine” overlooked the fact that women had the same top three causes of death—heart disease, stroke, and cancer of all kinds—as men did, and also suffered disproportionately from many nonreproductive health conditions that had been long neglected.

The research community tended to offer two contradictory defenses for their exclusion of women. Sometimes, they claimed that, apart from their reproductive systems, men and women were so alike that any findings derived from studying the former would be perfectly valid for the latter as well. Women’s health advocates countered that such a claim was simply an assumption, one that should be investigated. Since little medical research had actually looked to see if there were sex/gender differences, no one could say for sure that there were any differences, but no one could say for sure that there weren’t either. Besides, this argument was more a post hoc attempt at validating the results from all-male studies, as opposed to an explanation for them. After all, if there really were no significant differences between the sexes, then there were also no grounds for excluding women. It also raised the obvious question: If researchers were so confident that it was fine to extrapolate findings on one sex to the other, why didn’t it ever seem to go the opposite way? This excuse looked especially suspect since the biomedical community also offered the exact opposite argument. Instead of claiming that the sexes were so similar that women could be properly represented by men in a study, researchers claimed women were so different from men that including women would destroy the homogeneity of the study population and “confuse” the results. A mixed-sex study would require a larger subject p...

“The theory of female frailty obviously disqualified women as healers,” Ehrenreich and English write. “At the same time the theory made women highly qualified as patients.” The economic self-interest driving doctors’ growing concern about women’s health was not lost on some of the few female doctors who’d broken into the profession by the end of the nineteenth century. As Dr. Mary Putnam Jacobi wrote drily in 1895, “I think, finally, it is in the increased attention paid to women, and especially in their new function as lucrative patients, scarily imagined a hundred years ago, that we find explanation for much of the ill-health among women, freshly discovered today.” But, of course, many women didn’t make lucrative patients. Conveniently enough, nineteenth-century “science” showed that black women and working-class white women were magically resistant to the health problems that plagued well-off white women. One physician noted, “The African negress, who toils beside her husband in the fields of the south, and Bridget, who washes, and scrubs and toils in our homes at the north, enjoy for the most part good health, with comparative immunity from uterine disease.” In a remarkably lucky boon to the new medical profession, it was only those women who had the time and the money to be treated who were prone to perpetual illness and in need of their services. And it was only women trying to push into professional work—those aspiring bacteriologists, histologists, and surgeons—who...

Previously, diseases were defined as collections of symptoms; “fever” or “pains” were disease categories in their own right. As historian of medicine Charles Rosenberg writes, “Recognizably modern notions of specific, mechanism-based ailments with characteristic clinical courses were a product of the nineteenth century.” This transformation led to an important change in the way medicine thought about symptoms. Before, doctors had no choice but to take patients at their word about what they were experiencing in their bodies; after all, without any tools to see within the body and without the foggiest notion, really, about what caused most diseases, they usually didn’t have anything else to go on. But as diseases came to be categorized based on the physiological disturbance at their root, symptoms were transformed into clues that could help the doctors uncover their source. The patients’ subjective reports of what they felt—pain, dizziness, nausea, et cetera—were becoming “complaints” that became symptoms of a disease only once the doctor—assisted by the ever-growing arsenal of laboratory tests and technologies he’d begun accumulating by the beginning of the twentieth century—found an objectively observable cause that explained them.

The psychologization of hysteria, arriving just as medicine increasingly defined “real” diseases as those it could see with its current technologies and explain by a known physiological mechanism, introduced the idea that any symptoms it couldn’t yet see and explain—particularly those that occurred in women—could be blamed on the unknowable “unconscious mind,” a theory that medicine has liberally utilized whenever it comes up against the limits of its knowledge. It has led to the persistent distrust of women’s subjective reports of their own bodies—until those reports are backed up by objective evidence.

It is convenient that “medically unexplained symptoms” has become the latest label to be applied to allegedly hysterical symptoms since the term itself—and the way medicine uses it—highlight the problems with the whole concept. Studies have estimated that up to a third of patients in primary care, and up to two-thirds of those in specialty clinics, have “medically unexplained symptoms.” Approximately 70 percent of them are women. But, of course, symptoms are not explained or unexplained per se; symptoms are explained by individual doctors when they make a diagnosis. Some patients with “medically unexplained symptoms” then are those whose symptoms simply haven’t been explained yet. Many millions of people in this country experience long delays and see multiple health care providers before getting correctly diagnosed: Four years, on average, for patients with autoimmune diseases. Seven for patients with rare diseases. As many as ten for those with endometriosis. Yet most of the medical literature on “medically unexplained symptoms” seems to take place in an alternate reality where diagnoses are always made accurately on the first try. And on the collective level, diseases are explained by scientific research, and what science can explain is changing all the time. At this point in medical history, the pattern has repeated itself again and again: a step forward in medical knowledge and yesterday’s mysterious, psychogenic-by-default conditions suddenly become medically explaine...

Yet despite this record, each generation of medical practitioners has remained remarkably confident in the theories and technologies of the current era, treating what is currently “medically unexplained” as if it is, in fact, unexplainable—even to a doctor in the future with greater knowledge and more precise tests. In treating “medically unexplained symptoms” as if it is a unified condition, Jutel points out, medicine resorts to “creating a catch-all diagnostic category in which it can place the unexplained.” And in attributing a psychogenic cause to “medically unexplained symptoms,” medicine “presumes the infallibility of the physician and the omniscience of medicine.”

The danger here is just compounded by the fact that a psychogenic diagnosis, while easy to make, is very difficult to overturn. All misdiagnoses are vulnerable to confirmation bias (the tendency to see new evidence only if it’s in line with your existing theory), but a psychogenic diagnosis is a particularly sticky one because the only exonerating evidence that could show it to be false—proof of an organic pathology—is exactly what doctors have now ceased looking for. Once doctors have settled on the conclusion that “nothing’s wrong,” further investigation halts, making it all the more unlikely that they will uncover anything wrong. And once you have been labeled an unreliable reporter, it becomes all but impossible to get your credibility back.

Of course, there’s another group of patients who tend to insist their illness is medical and “doctor shop” until they get a diagnosis: people suffering from yet-to-be-diagnosed physical diseases. That such behavior could be considered a “hallmark” sign that there is in fact no organic disease at all is an absurd and very dangerous logic. The possibility of a psychogenic diagnosis creates a system in which trying to get an explanation for persistent or worsening symptoms puts a patient at risk of acquiring a mental health diagnosis right up until the moment the correct diagnosis is made. In fact, the actions that are often required to get a diagnosis in a fragmented and inefficient medical system may be seen as “abnormal illness behaviors” until, finally graced by the legitimacy afforded by a medical diagnosis, they retrospectively become the perfectly rational actions of a sick—and no doubt increasingly desperate—patient. As one patient with chronic fatigue syndrome put it, “The difference between a crazed neurotic and a seriously ill person is simply a test.”

“It seems a remarkable coincidence that men of higher socioeconomic backgrounds from the developed Western countries are, in all the world, the people least likely to ‘somatize,’ given that they also happen to be the people who are accorded the most believability and authority in Western scientific settings.” If women and other socially disadvantaged groups have more “medically unexplained symptoms,” that is probably because medicine has been less interested in explaining their symptoms.

The assumption that these conditions are psychogenic—just modern labels for women’s age-old hysterical tendencies or, as one article put it, “old wine in new bottles”—means there isn’t much interest in studying them within the biomedical community. But only scientific research to uncover their biological mechanisms could rescue them from the wastebasket of the “medically unexplained.” As one researcher on multiple chemical sensitivity lamented in the nineties, “we are in a catch-22 situation. It is difficult to attract research money for a controversial condition and it is difficult to resolve the controversy without the necessary research.” In the meantime, skeptical doctors would point to the absence of consistent biological abnormalities as proof that there was “nothing wrong” with these patients, never mind that finding such abnormalities would have required research to look for them. Meanwhile, a good deal of what little research has been done on functional somatic syndromes has been focused on trying to confirm their psychological roots. On the whole, the evidence marshaled to attribute a psychogenic cause to such conditions is as speculative on the collective level as it is on the individual level. Countless studies have been done showing that patients with functional somatic syndromes have higher rates of depression and anxiety than healthy people. But this is true of patients with “explained” chronic diseases too. Rarely do such studies include a control group of ...

“One of the great puzzles of the psychogenic literature,” writes Dr. Martin Pall, a researcher on functional somatic syndromes, “is how do so many bad papers get published?” Calling the publication of research with such shoddy scientific standards “by far the largest failure of the peer-review system that I am aware of,” he notes, “I cannot help wondering whether it is based on the fact that most victims of these illnesses are women. There is a long history of sex discrimination in medicine, and while I would like to think we are more enlightened in the twenty-first century, this pattern suggests that perhaps we are not.”

At this point, women seem to be caught in a self-fulfilling prophecy. On the collective level, since medicine has failed to explain many of our symptoms, women are, in reality, more likely to have “medically unexplained symptoms”—whether those symptoms are side effects of drugs that haven’t been tested in women, or atypical symptoms of diseases that have been largely studied in men, or symptoms of functional somatic syndromes that are more common among women and that medicine, assuming they must be psychogenic, has hardly researched at all. And since the tendency to see any “medically unexplained symptoms” as psychogenic has become deeply entrenched in medicine, this knowledge gap creates the stereotype that women are hysterics and hypochondriacs with a tendency to somatize. This stereotype, in turn, affects how all women patients—whether their symptoms are explained or unexplained—are perceived when they enter the medical system. Profiling them as patients prone to “medically unexplained symptoms,” doctors more quickly settle on the conclusion that women’s symptoms are “just stress,” offering antidepressants instead of doing a more thorough workup to find a medical explanation, which just exacerbates this endless cycle.

In the late eighties and early nineties, pain researchers—spurred by the calls for greater attention to sex/gender differences in all areas of biomedical research—had begun exploring differences in pain perception between men and women. The research suggested that women tend to be more sensitive to pain and/or more likely to report it. Given that, they wrote, “it seems appropriate that they be treated at least as thoroughly as men and that their reports of pain be taken seriously.” At the very least, they shouldn’t get less treatment. “The data do not indicate that this is the case. Women who seek help are less likely than men to be taken seriously when they report pain and are less likely to have their pain adequately treated.” They considered various potential reasons for this bias, ultimately concluding that the main one was that women’s complaints of pain are less likely to be trusted. “The subjective nature of pain requires health care providers to view the patient as a credible reporter,” and women are “more likely to have their pain reports discounted as ‘emotional’ or ‘psychogenic’ and, therefore, ‘not real,’” they wrote. “These biases have led health-care providers to discount women’s self reports of pain at least until there is objective evidence for the pain’s cause. Medicine’s focus on objective factors and its cultural stereotypes of women combine insidiously, leaving women at greater risk for inadequate pain relief and continued suffering.”

The way women’s reports of pain are received seems to be at least as influenced by cultural stereotypes about men as about women. The stoicism expected of men is cited as one of the reasons that their pain is taken more seriously; their reports of pain are less likely to be doubted, because it’s assumed they’re more reluctant to make them in the first place. But there’s no rational reason that men’s assumed stoicism should result in women’s pain not being taken seriously. As Hoffmann and Tarzian pointed out, if men are indeed more reluctant than women to admit they’re in pain, “this reluctance on the part of men does not lead to the conclusion that women, as not reluctant, must therefore be less in need of adequate treatment.” If women, spared from the cultural pressure put on men to tough it out, are more free to express their pain, their reports would seem to be not overreports but simply more accurate reports. Instead, women are treated as if they’re the unreliable reporters. The stoic male stereotype extends to an assumption not only that men are less likely to admit they’re in pain but also that they’re less likely to seek medical attention for their symptoms at all. Public health researcher Kate Hunt and her team point out that an assumption that men are reluctant to seek medical care has become “deeply entrenched” in both medicine and the public at large. And it seems to come with a corollary assumption that women are not reluctant, which “may result in health care ...

It seems that these stereotypes may drive us all to a similar spot: in attempting to adhere to the stoic male stereotype, men may hesitate to get the care they need; in attempting to avoid playing into the hypochondriacal female stereotype, women may do the same. Indeed, when it comes to studies that look at what patients actually do, women are not, as a general rule, any quicker to seek medical care. There is relatively little research that has explored whether men and women with the same condition or the same similarly debilitating symptom differ in whether and how quickly they seek medical care, and the research that does exist has yielded mixed results: for some conditions, gender isn’t a factor; for others, men delay longer; and for others, women do. (For example, women tend to wait longer than men to get help when they’re having a heart attack.) As Hunt and her colleagues concluded in a 2011 review of studies on help-seeking for two common symptoms—headache and back pain—the evidence that women sought medical attention more readily than men was, given the strength of the stereotype, “surprisingly weak and inconsistent.” But, again, even if women were, on average, more willing to seek medical attention than men are, it wouldn’t justify not taking their symptoms seriously when they do.

But gender stereotypes have a tendency to put women in double binds, and this one is no exception. Since women are expected to have an overly emotional response to pain, they are at risk of having their reports not taken seriously whether they adhere to the stereotype or break with it. Dr. Vicki Ratner brings a unique dual perspective to the problem as an orthopedic surgeon and an advocate for patients with interstitial cystitis. She’s blunt about the dilemma women patients face: “It’s very difficult for a woman to present in a doctor’s office. Because if she’s very stoic—if she talks about the problem in the tone that I’m talking to you—then the doctor’s going to think, ‘Oh, there’s nothing really wrong with her.’ And then if she gets very emotional, he’s going to blame it on, ‘Oh, she’s a psychological mess blah blah blah.’ You get judged right away because you’re female: you’re either stoic and nothing’s wrong or you’re crying and you get labeled hysterical.” Conversely, the expectation that men keep a stiff upper lip when they’re in pain serves to ensure that they’re likely to be taken seriously no matter what: if they’re stoic, they’re just being a typical “macho” guy, and if they’re emotional, well, then it must be really, really bad. However, just how much leeway men have to break with the stoic male stereotype and still be taken seriously may depend on how closely they adhere to masculine norms in other ways. In a 2014 study that found female heart attack patients ...

There’s one final thing that is important to know about patients with “medically unexplained symptoms”: doctors do not like them. “Patients with persistent somatization are not only well-known to physicians but also singularly disliked by them. Their widespread unpopularity is reflected in the mostly derogatory labels they have acquired, such as ‘crocks,’ ‘gomers,’ ‘turkeys,’ ‘hypochondriacs,’ ‘hysterics,’ and ‘the worried well,’” Lipowski explained. “These labels express the frustration of doctors faced with patients who claim to be physically ill, clamor for medical diagnoses and treatment, tend to be dissatisfied with any therapy they get, and are inclined to ‘doctor shop.’” Women with “medically unexplained symptoms” also featured prominently in an influential article from the late eighties that coined the term “heartsink patients” to describe patients who “exasperate, defeat, and overwhelm their doctors by their behavior.”

There is always a gap between when a symptom begins and when it is “medically explained.” It is unreasonable to expect that doctors, who are fallible human beings doing a difficult job, can close this gap instantaneously—and, given that medical knowledge is, and probably always will be, incomplete, they may at times not be able to close it at all. But it shouldn’t be unreasonable to expect that, during this period of uncertainty, the benefit of the doubt be given to the patient, the default assumption be that their symptoms are real, their description of what they are feeling in their own bodies be believed, and, if it is “medically unexplained,” the burden be on medicine to explain it. Such basic trust has been denied to women for far too long.

As historian of medicine Charles Rosenberg has written, “In our culture, a disease does not exist as a social phenomenon until we agree that it does.” And whenever you hear a condition described as a “contested disease,” the odds are good that the “contest” is between, on the one hand, mostly women patients who believe their condition to be an organic one and, on the other hand, a medical establishment that assumes their “medically unexplained symptoms” are all in their heads.

Less than one-third of medical schools include ME/CFS in their curriculum, and only 40 percent of medical textbooks mention the condition. Despite this, surveys show that most health care providers are very aware of the disease, but in the absence of good education, their knowledge appears to be largely based on myths. According to a 2011 study by researchers from the CDC, 85 percent of health care providers believe ME/CFS is fully or partly a psychiatric condition. “Many health care providers are skeptical about the seriousness of ME/CFS, mistake it for a mental health condition, or consider it a figment of the patient’s imagination,” the IOM report lamented. “Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients.”

Intrigued by Jessop’s description of her patients and her hypothesis that an unknown infectious agent, perhaps a new retrovirus like HIV, was affecting their immune systems, he asked her to send over some patients to his lab and said he’d start searching their blood for viruses. But after seeing the first several patients, he started to balk. Suspecting what the problem might be, Jessop sent over one of her male patients with the condition next. “[He] saw ten women, and he thought they were all hysterical,” she explained, “then he saw a man, whose complaints he took seriously.” This is not to say that men with ME/CFS haven’t been dismissed and labeled as psychiatric cases or malingerers; they certainly have. Insist on being sick for long enough without explanation, and anyone will be at risk of being disbelieved. But, as with chronic pain, doctors seemed to find it far easier to ascribe ME/CFS to the mind in women. A 1996 Australian study of fifty patients eventually diagnosed with ME/CFS, for example, found that 85 percent of the women, compared to 30 percent of the men, had received psychiatric diagnoses during their search for an explanation. “Their expressed emotion or signs of distress appear to have influenced the diagnosis regardless of other symptoms,” the authors wrote. “In contrast, men’s accounts of their symptoms and their choices about treatment were usually given credence.” In fact, trusting in the reality of the men’s complaints, doctors had sometimes ignore...

It is likely for these reasons that POTS is not contested in the way ME/CFS is. There is just remarkably little awareness of it within the medical community at all. Most medical students don’t get any training on POTS. It’s not part of the board exams. Even many neurologists and cardiologists aren’t familiar with it. Lauren Stiles, cofounder of Dysautonomia International, a patient advocacy group for autonomic nervous system disorders, says, “We think part of the reason it’s neglected is because it is a young woman’s health condition.”

I also asked all the women I interviewed how their experiences of being misdiagnosed and dismissed and neglected by health care providers had changed their view of the medical system. And universally I heard the same refrain: I have less trust in medicine now. They said they saw now that health care providers were fallible and, worse, that they often failed to acknowledge that they were fallible. 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.