Of all the ways women are disadvantaged in society, one of the most overlooked yet most fundamental is the way in which women’s physical health is misunderstood and neglected.
Medical research tends to use male subjects and overlook conditions experienced primarily by women. A 2007 study in the Journal of Women's Health found that just 24 percent of participants in 46 drug trials from 2004 were women. A 2011 study in the same journal found that the median enrollment of women in federally funded 2009 clinical trials in nine medical journals was 37 percent—the same as it had been five years prior. This also applies to animals: An analysis of 2,000 animal studies in Neuroscience & Biobehavioral Reviews found that single-sex neuroscience studies on male animals were 5.5 times as common as those on females. And although 90 percent of women report at least one PMS symptom, five times as many studies have been dedicated to erectile dysfunction, a problem experienced by 19 percent of men, according to a ResearchGate analysis.
This inequality is the subject of Feministing editor Maya Dusenbery’s first book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick (HarperOne, March 6). Doing Harm illustrates how women’s medical problems have historically been dismissed as either psychosomatic or normal and presents a third possibility: that women indeed are suffering from a disproportionate number of physical health issues—with 12-14 percent worldwide experiencing severe menstrual pain, for example, and 45 percent of American women (compared to 31 percent of men) experiencing chronic pain—but this does not make them normal. Instead, it reflects a startling lack of progress in women’s healthcare.
Dusenbery traces the dismissal of women’s health issues, especially hard-to-identify ones like chronic pain and interstitial cystitis, back to a history of women being deemed “hysterical” if they complained of an illness that wasn’t immediately visible. The ancient Greeks believed these mysterious symptoms came from a wandering womb, but by the turn of the 20th century, hysteria was seen as a mental disorder, setting the precedent for modern-day women being told their sicknesses are “in their heads.”
We talked to Dusenbery about why so many women are suffering from neglected and misdiagnosed health problems and what we can do about it.
This interview has been edited and condensed for clarity.
BROADLY: What made you want to write about this topic?
DUSENBERY: I've been a feminist writer for a long time focused a lot on reproductive health issues, but I wasn’t really thinking about how gender bias affects medicine more broadly until I got rheumatoid arthritis a few years ago. For my own sake, I started learning about autoimmune diseases and became interested in the fact that they’re super common among women and not well known in the public or the medical system. I started hearing lots of stories of women about having a hard time getting diagnosed and feeling like their symptoms were being minimized or dismissed by healthcare providers. That was the first inkling that this was a problem pretty broadly that should be explored more than it had been.
Did you experience this dismissal yourself?
I had a textbook case of RA [Rheumatoid arthritis] and got diagnosed relatively quickly, so my own experience was fairly good, but I certainly started to hear from friends who were dealing with other, more mysterious, hard-to-diagnose problems. Surveys that have been done looking at the experience of autoimmune patients more broadly show the average is four years, and often patients go to four to five doctors during that time. A lot of that has to do with a real lack of training among doctors about how to diagnose these conditions and also a trust gap where women's symptoms are not often believed and trusted. These kinds of subjective symptoms that autoimmune disease bring—symptoms like pain and dizziness—aren't confirmed by a test, and you have to trust the patient’s testimonial of how they're feeling in their body. Women have to overcome this tendency to question that testimony.
Where do you think that distrust in women comes from?
It's related to these gender stereotypes we have about a stoic man who is expected to keep a stiff upper lip when he's in pain and discouraged from admitting vulnerability or weakness, whereas women are stereotyped as more emotional. The way that's played out in medicine is that when men enter the medical system, there's an expectation (consciously or unconsciously) that they're more reluctant to be there in the first place or to be asking for help.
I also think that it's a little deeper than that. There's this long history of viewing women as prone to hysteria. At this point, the most common term in the medical literature is “medically unexplained symptoms.” That is a deceptively neutral term, but in medicine, it’s often used to imply a psychogenic cause. Medicine's retained this idea that it can blame any symptoms it can’t attribute to a physical disease on a patient’s mind, and it’s persistently insisted that women are especially prone to such symptoms. Hysteria is not something that disappeared.
You talk about doctors attributing women’s medical problems to depression and anxiety. Are they serving the function that hysteria used to?
Whenever a woman's describing physical symptoms and a doctor attributes them to depression or anxiety or stress—particularly doctors not trained in mental health—I think that often is being used as a euphemism for what previously would've been called hysteria. A lot of primary care doctors write prescriptions for antidepressants as a way to give some treatment to patients without doing a really thorough investigation to see whether the patient actually has a primary mood disorder or has some other underlying physical disease. Someone should be skeptical if they've been given a diagnosis of depression or anxiety and they're not exhibiting the emotional cognitive symptoms associated with those disorders and haven't had a thorough workup to determine potential underlying causes.
If we do believe women’s accounts of their own pain, it can seem like being a woman is just a painful experience—but you reject that idea, too. What’s wrong with that explanation?
When it comes to menstrual pain and other disorders associated with women's cycles, there's not only this tendency to say it's all in your head but this tendency to say it's just normal. That harkens back to this really long history of seeing pain as sort of this unfortunate but normal part of being a woman—that it's part of a woman's destiny to suffer. So when it comes to [failure to diagnose] conditions like endometriosis or vulvodynia, that's a factor that’s been at play.
That's also a good illustration of how self-perpetuating these things can be. Endometriosis is very common, and yet women often go for a decade before they’re diagnosed, and one of the main symptoms is very, very painful periods. People often complain to doctors about that. When they’re teens, they’re told, “You’re just not used to having your period yet.” How could it possibly be that so many doctors think that it's normal for a period to bring so much pain that it would bring a woman to the ER, cause her to pass out or be demobilized? The reason that's possible is that doctors keep not diagnosing endometriosis, so they have the impression that severe menstrual pain is normal.
Where does that idea come from, that being a woman means suffering?
It's also rooted in this history of hysteria. Before Freud, it was understood as a physical disease that was sort of inherent in women. That idea was retained in some ways, but I think it's clearly another way of [medical professionals] letting [themselves] off the hook for not actually doing the scientific research to understand what's going on: “Women are just sickly” or “it’s normal for them to have pain.” Menstruation is this normal biological process. There’s no reason it should cause pain. That doesn’t make any real evolutionary sense. It speaks to the fact that it hasn't been a priority to figure out the many reasons why it might bring pain for some women.
When I was getting feedback, people were like, “Yeah, but periods are painful.” But I'm saying, should they be? Why do we think that's acceptable?
Was there anything you found particularly shocking in your research for the book?
I was surprised to realize just how little feedback doctors receive on their diagnostic errors. There hasn't been much systematic research looking into misdiagnoses and delayed diagnoses. A woman with an autoimmune disease may go to four different doctors, and the doctors who didn’t properly diagnose her may just see her as a stressed woman and don't get the memo down the road when she's properly diagnosed. It becomes a self-perpetuating problem that feeds into the stereotype that women are just stressed-out hypochondriacs.
Aside from the physical consequences, what are the psychological consequences of women being constantly doubted and questioned?
Being told that your own knowledge of what's happening in your body is wrong or to not be trusted is a really deeply invalidating thing. It’s this really core part of our experience of the world—our experience of our own bodies—so I think it's just a really audacious form of gaslighting for doctors to tell women that their symptoms are all in their heads. Women understandably find that so invalidating that they might question their own sanity.
Do you see this tendency to doubt women come up in other areas?
The very simple call to listen to women, to believe women—this refrain comes up in a lot of realms. When it comes to abortion access, this is a call to trust that women know when they want to end a pregnancy; they don't need paternalistic anti-choice laws informing them that they're about to end a pregnancy. When it comes to anti-sexual-violence advocacy, that refrain of “believe survivors” speaks to this same thing: Women’s testimony about these issues and the way that sexual violence or harassment affects them should be listened to and trusted. I feel hopeful, especially in this moment, with all the #metoo activism and this feeling right now, that we are starting to listen to women's testimony about their lives. Extending that to medicine would be a great next step.