"Your symptoms are assumed to be all in your head."
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In a recent episode of Grey’s Anatomy, the surgeon Miranda Bailey realizes she’s having a heart attack. Rather than go to the doctors at her own hospital, she heads out for another emergency room—where she’s initially dismissed as merely anxious.
Grey’s writer Elisabeth Finch drew on her own experience with misdiagnosis for Bailey’s storyline. Both incidents point to a persistent, often overlooked problem in medicine: Women’s symptoms are often diminished and dismissed by doctors.
Maya Dusenbery wrote about the episode for Pacific Standard, noting the importance of a show like Grey’s tackling such a key topic. “As a devoted fan of the show for all 14 seasons,” she wrote, “I have been awaiting for this particular episode for years: the one that tackles the insidious gender bias within the medical system.”
In her new book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, out next month, Dusenbery digs deeper into the issue, exploring the way gender bias in medicine often leaves women struggling for proper care.
More than 200 women wrote to Dusenbery with their stories—about not being believed, diagnosed, or properly treated by their doctors. It was powerful, she says, to see the patterns emerge. It can be easy for individuals to minimize their own experiences, or assume that they were the problem. “But seeing the stories in aggregate,” she says, “you can say this is not about you, this is reflective of problems in the larger system.”
What got you interested in this topic in the first place?
I’ve been a feminist writer for several years, and I have a background in reproductive health. But I hadn’t really gone down this route until a few years ago when I got rheumatoid arthritis. I started learning about autoimmune diseases, and I realized that they disproportionately affect women. They’re super common, and there really isn't a lot of awareness in the public and in the medical system about them. I also started hearing a lot of stories from other women I knew, both with autoimmune diseases and other things, talking about having a really hard time being diagnosed, feeling like they were being dismissed, and having their symptoms belittled.
In your research, what did you find were the biggest factors driving this problem in medicine?
In the book I talk about the two big problems being a knowledge gap and a trust gap. A knowledge gap refers to the idea that a lot of clinical research is conducted mostly on men. Also, conditions that disproportionately affect women—and exclusively affect women—have often been relegated to the bottom of the research agenda. We too often just don't know a lot about really common women's health conditions. Doctors, even the very best doctors, just aren't getting the knowledge they need to care as well for their female patients as they can male patients.
The second issue, the trust gap, refers to the problem women have with their symptoms being believed by healthcare providers. When women report pain, fatigue, dizziness, or any of the subjective symptoms that can't be confirmed by a test, you have to trust the person's self-report of what they’re feeling in their body. There’s been this long history in medicine of believing that women are especially prone to hysteria, that symptoms are psychogenic. There’s a very direct lineage, where hysteria, in the 19th-century idea of it, has been passed down generation by generation. Symptoms aren't taken seriously, and they’re dismissed as depression or anxiety.
What are the major reasons women aren’t taken seriously by doctors?
It’s definitely sexism in general, to the extent that it’s related to these stereotypes about men and women that arise in many realms. The fact that men are expected to be stoic, and women more emotional, means that men are taken more seriously in the medical system—in part because it’s assumed that they’re reluctant to admit that they’re in pain or suffering. The opposite holds for women.
To some extent, the problem is that the stereotype has been embedded in medical knowledge itself. It’s just a medical fact that women have more "medically unexplained" symptoms, which is the term for symptoms that aren't explained by physical disease. Medicine has, by default, assumed that they must be all in your head. The problem is that because there’s the longstanding idea that women are prone to hysterical symptoms, then the scientific research that’s needed to understand them never gets done. You're stuck in this self-fulfilling prophecy, where women's symptoms are assumed to be all in their head, so they continue to be medically unexplained.
The other really big thing I learned through the research was that women face long diagnostic delays for a lot of conditions. Doctors just don't get a lot of feedback on their errors. There’s no systematic way that doctors are informed that this woman they dismissed as stressed went to another doctor, and another, and another and finally got the correct diagnosis four years later. The first doctor doesn't get the memo.
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Speaking of that trust gap, do you think that’s a reason that so many women turn to alternative medicine?
This is a topic I’m interested in, because I do think that women are more inclined than men turn to alternative health. I think part of the reason is that women are more likely than men to have conditions that are poorly understood by mainstream medicine. It’s not surprising people turn to alternatives, because the mainstream isn't offering an explanation.
I've often been frustrated with the discourse around alternative health, that talks about it as fads. It implies that women are just going gluten-free because it's the most fashionable thing, without acknowledging that women know their bodies, and wouldn't be doing crazy stuff if there wasn't a reason. And clearly, there are things in the alternative health sphere that are ineffective snake oil, but mainstream medicine deserves blame for leaving a bunch of patients, a lot of them women, to turn to whatever they can to find help. I think it’s definitely reflective of the ways mainstream medicine is failing women that so often they turn to alternative medicine.
What is the role that female doctors and female nurses play?
A lot of the women I interviewed who had stories of being dismissed or misdiagnosed had experience with female physicians and didn't see a huge difference. I think that speaks to the fact that this problem is not about being overtly sexist—this is about an unconscious bias that everyone, including women, can have. It’s also about bias in what doctors are taught. I think female physicians are taught the same medical knowledge as male physicians.
That said, the fact that medicine has been historically, and continues to be, very male-dominated, is part of the problem. If women had been in positions of power in medicine decades ago, we would have done more research on conditions that affect women, we wouldn’t have these sexist legacies. And it's clear that women in medicine have brought about change. There’s evidence that women as researchers are more likely to do research on gender disparities. Certainly it’s important for a lot of reasons to get more gender equality within the profession. But it’s also important to see gender bias as a systemic problem that women are not immune to.
In January, Serena Williams told Vogue about her experience giving birth, and not being believed in the hospital when she told nurses that she had a blood clot. Gender obviously plays a role there, but race is a factor as well. How does race play into the way we approach the issue of gender bias in medicine?
It’s clearly a huge factor, and especially seems to be a huge factor when it comes to maternal mortality, as the Serena Williams story put on the radar in such a big way. The intersection of race and gender is pretty clear—a lot of the research shows that black women are treated poorly in comparison both to white women and to black men.
Part of the reason is the stereotype that patients of color are more likely to be drug seekers. In the book, I have one story of a black women with lupus, and her struggle to get diagnosed over many years. She was ending up in the ER with really severe pain, and often couldn't even get past the ER gatekeepers, because she was assumed to be drug-seeking just automatically. I think that’s a really big issue.
One of the differences, perhaps, between how white women and black women are perceived in that context is that the white woman is more likely to be seen as depressed, anxious, or a hypochondriac, while the black woman would be facing that sort of drug-seeking stereotype.
Knowing what we know, how can women advocate for themselves?
It’s a challenging question for me because I really didn't like having to put the onus on individual women. I asked all the experts I interviewed that question. Very consistently, I got the answer that women should really get second opinions, not accept it if they’re dismissed, and really trust their instincts.
That’s really good advice for an individual, but it’s important to be clear that the reason that advice is needed is that so often women are finding that their instincts are being questioned, and that it should be on doctors to listen more so that isn’t required.
A lot of problems are bigger than the individual—it’s about changing medical education, changing how clinical research is done. For those things, the long-term things, that requires the will of people within the biomedical community. I do think there’s definitely a lot of potential for patient advocacy to spur change.
Beyond just being well-informed and advocating for yourself, I think there's a lot of power in telling your own stories, in part because there’s not quite yet a recognition that this is such a widespread problem. There’s the potential for a ‘me too’ moment, when it comes to medicine, to expose the extent of the problem here.
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