Several years ago, after a bad bout of the flu, I woke up to find that my knuckles ached for no apparent reason. In a couple of weeks, so did my ankles and toes. Before long, my knees and elbows had joined in, and the pain kept me up at night. My consultation with Dr. Google suggested that this was not good news, and when I finally got in to see a rheumatologist, she agreed: I was diagnosed with rheumatoid arthritis, an autoimmune disease in which your immune system mistakenly attacks the lining of your own joints instead of an infectious pathogen.
It’s estimated that a whopping 50 million Americans have an autoimmune disease. Three-quarters of them are women and, like me, they often develop them in the prime of their lives. I discovered that I’d been incredibly lucky to get a diagnosis within several months. Thanks to that early treatment, my RA was quickly put in remission and I’ve been healthy for years. But according to the American Autoimmune Related Diseases Association, patients with autoimmune diseases see an average of four doctors over four years before they receive the correct diagnosis, and nearly half report being labeled “chronic complainers” during their search.
While I’ve been a feminist writer for years, before I got sick, I hadn’t given much thought to how sex and gender bias has skewed what we know and don’t know about health and disease and how it affects the quality of medical care that patients receive. But after my brush with the autoimmune epidemic ― an epidemic that seemed strangely off the radar of both the public and the medical system ― I started to explore it. What I’ve discovered is that a lack of knowledge about women’s health, and a lack of trust in their reports of their symptoms ― entwined problems that have become remarkably entrenched in the American medical system ― conspire to leave many women misdiagnosed, dismissed and sick.
The story of gender in the U.S. is a story of gaps: the wage gap, the wealth gap, the orgasm gap. Medicine has long had a knowledge gap, and in the early 1990s, women’s health advocates teamed up with allies in Congress to put the problem on the public’s radar. At the time, the National Institutes of Health wasn’t tracking how many women were included in the research it funded with taxpayer dollars to further the nation’s health, and a number of important, foundational studies in recent years had enrolled only men.
The story of gender in the U.S. is a story of gaps. The wage gap, the wealth gap, the orgasm gap. Medicine has long had a knowledge gap.
Meanwhile, the Food and Drug Administration prohibited all women of childbearing age from taking part in early-phase drug trials. Women had been left out for a number of reasons, including a paternalistic concern about the risks to them and their future offspring, but a big one was that researchers found it easier to study only men. With their varying hormonal states and cycles, women were considered a more heterogeneous group of research subjects. In other words, researchers’ excuse for excluding women revealed precisely why it was so important to include them: There could be some important differences.
In 1993, in response to public outcry, Congress passed a federal law requiring NIH-funded clinical research to include women. But while we’ve made some strides toward closing the knowledge gap, a 2015 review concluded that “not nearly enough progress has been made.” Though women are well-represented in NIH-funded research in the aggregate, they remain underrepresented in many research areas, like heart disease, cancer and HIV.
And the research community has largely taken ― as one advocate put it to me ― an “add women and stir” approach: Both men and women are usually included in studies, but researchers often do not actually analyze study results to uncover potential differences between the two. When it comes to pre-clinical research, male lab rats are still firmly the norm.
Meanwhile, over the last couple of decades, an ever-growing body of research has revealed there are, in fact, important sex and gender differences ― in everything from how drugs are metabolized to how the same disease manifests itself to the prevalence rates for various conditions. But in a medical system in which it takes 15 to 20 years for any new scientific knowledge to go from “bench to bedside,” much of this emerging information has yet to be incorporated into medical education, let alone clinical practice.
The result is that doctors, even the very best ones, don’t have the tools they need to treat women as well as they can treat men. As the director of the office on women’s health research at the NIH told The New York Times in 2014, “We literally know less about every aspect of female biology compared to male biology.”
Doctors, even the very best ones, don’t have the tools they need to treat women as well as they can treat men.
The picture only gets worse when we look at diseases that primarily affect women. Those women’s health advocates who sounded the alarm in the early 1990s accused the medical establishment of neglecting those conditions entirely: As Congresswoman Pat Schroeder (D-Colo.) put it at the time, “You fund what you fear.”
And based on the minuscule amount of funding they were receiving, a male-dominated research community didn’t seem to fear many health problems common in women ― from autoimmune diseases to gynecological disorders to chronic pain conditions. In fact, the problem ran even deeper: It’s not just that medicine hasn’t considered many women’s diseases to be very urgent ― it’s that it hasn’t considered them to be “real” diseases at all.
Which brings us to the second gap hindering women’s medical care: the trust gap. Women’s reports of their symptoms are too often disbelieved ― a problem rooted in the history of hysteria. For centuries, “hysteria” was a label for pretty much any mysterious symptoms in women, and sexist theories that tied it to a “wandering womb” or women’s sensitive nerves flourished.
But at the end of the 19th century, Sigmund Freud came along, and hysteria came to be seen as a psychological disorder: the “conversion” of mental distress into physical symptoms. A medical profession that was beginning to be able to explain the specific processes underlying many diseases adopted the convenient notion that any physical symptoms it couldn’t explain could be attributed to the patient’s “unconscious mind.”
While the term “hysteria” has fallen by the wayside, the concept has remained alive and well. Successive labels have taken its place: Briquet’s syndrome, somatization, somatoform disorder, conversion disorder, psychosomatic, psychogenic, functional symptoms. Perhaps most common in the medical literature these days is the term “medically unexplained symptoms” ― a phrase that needn’t necessarily imply a psychogenic origin but, in practice, often does.
Patients are often told they have depression, anxiety or “stress.” Sometimes, they’re simply told nothing is wrong, and any persistent symptoms they experience are minimized, normalized or disbelieved entirely. Whatever imprecise label is offered, they usually get the message: Your symptoms are “all in your head.”
While the term ‘hysteria’ has fallen by the wayside, the concept has remained alive and well.
The concept of hysteria ― no matter what term is used ― has served as a “wastebasket” diagnosis. As Annemarie Goldstein Jutel, author of Putting a Name to It: Diagnosis in Contemporary Society, writes, medicine has resorted to “creating a catch-all diagnostic category in which it can place the unexplained” ― and then attributed to it a psychogenic origin simply because it lacks another one.
It’s not surprising that it’s women who especially find their symptoms dismissed in this way since the typical patient with psychogenic symptoms has always been a woman. In the ’80s, researchers offered a mnemonic aid for remembering the main symptoms of somatization disorder: “Somatization Disorder Besets Ladies and Vexes Physicians.” These days, 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.” And about 70 percent of them are women.
Of course, the fact that women are more likely to have “medically unexplained symptoms” might have something to do with the fact that medicine just hasn’t devoted much scientific study to explaining them. It’s this maddenly mutually reinforcing dynamic ― the way the knowledge gap perfectly feeds into the the trust gap and vice versa ― that explains why, despite the fact that both problems have been recognized for decades, they’ve nonetheless persisted well into the 21st century.
Up to a third of patients in primary care, and up to two-thirds of those in specialty clinics, have ‘medically unexplained symptoms.’ And about 70 percent of them are women.
On one hand, the knowledge gap creates the stereotype that women are hypochondriacs and hysterics whose symptoms are often “all in their heads.” Each time a woman sees a doctor for symptoms that go unexplained ― whether it’s “atypical” symptoms of “female-pattern” heart disease that’s undetectable by a traditional angiogram, or fatigue from an autoimmune disease that is missed for years, or unrecognized side effects of a medication that was tested only in men ― it reinforces the impression that women are prone to complaining of symptoms with no evident physical cause.
This stereotype, which is born of medicine’s own failure to recognize women’s diseases, in turn, affects how all women are perceived when they enter the medical system. In a self-fulling prophecy, doctors take their symptoms less seriously and, prematurely concluding there’s probably no medical explanation, more quickly abandon their search for one. The fact that doctors get very little feedback on their diagnostic errors perpetuates the problem. Since they rarely learn if that woman they sent home with a prescription for antidepressants is eventually correctly diagnosed by another doctor, they assume that she really was the stressed-out somatizer they judged her to be.
This becomes equally self-fulling on the collective level. As long as women’s “medically unexplained symptoms” are considered adequately explained by the “fact” ― accepted as a scientific truth for over a century now ― that women are prone to “somatizing” their emotional distress, they do not need to be medically explained by thorough scientific research. This Catch-22 has been especially clear when it comes to “medically unexplained” conditions that disproportionately affect women, including fibromyalgia, vulvodynia, interstitial cystitis, myalgic encephalomyelitis/chronic fatigue syndrome and chemical intolerance. These conditions remain so poorly understood mostly because, assuming they must be psychogenic, medicine has put astoundingly little effort ― and few research dollars ― toward understanding them.
The harm done by medicine’s gender bias is difficult to quantify but staggering to consider. How many women are permanently disabled because they weren’t as lucky as I was and their autoimmune disease, brushed off as “stress,” wasn’t diagnosed and treated during the early stage, when the odds of achieving remission are much better? How many women have died because their life-threatening ailments ― from strokes to cardiac arrests ― weren’t treated as urgently as their male counterparts’ in the ER? How many collective years of needless suffering have women with “medically unexplained” conditions endured while medicine has been stubbornly looking the other way?
These conditions are poorly understood because, assuming they must be psychogenic, medicine has put astoundingly little effort — and few research dollars — toward understanding them.
It’s these harms ― the consequences that can sometimes mean the difference between life and death, health and illness for patients ― that are, of course, the most critical reasons we must correct the systemic sex and gender bias within medicine. But in case we needed another one: Doing so will reveal a wealth of untapped knowledge. This bias, after all, is as indefensible on scientific grounds as it is on ethical ones. We have all been deprived of the knowledge that’s been left on the table by neglecting the health of half of the population.
What would we know about human health and disease if female bodies ― in all their complicated variety ― were considered worthy of studying and understanding, if conditions that impact mainly women were seen as medical mysteries that urgently need to be unraveled and if women’s reports of their experience of their own bodies were trusted as reliable?
We can only imagine, but it’s high time we found out.
Maya Dusenbery is the author of Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, which is out from HarperOne today.