Bad Medicine & Lazy Research Leave Women Dismissed and Sick: Interview with Maya Dusenbery, Author of “Doing Harm”

“It’s all in your head” — it’s a phrase that many women with endometriosis are either told explicitly or implicitly. Receiving recognition of endometriosis symptoms from doctors is a frustratingly similar experience among endometriosis patients, and on average it takes 8 years to receive a diagnosis. It’s known in the literature that endometriosis symptoms are normalized, stigmatized, and ignored. But why are women dismissed and left ill by the medical establishment? Maya Dusenbery explores this question in her book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, published earlier this year by HarperCollins. Maya’s book synthesizes scientific and sociological research, interviews, and personal stories to provide a well-researched and easy-to-read account of how discrimination and prejudice harm women’s health. We recently talked with Maya to better understand how gender bias in medicine impacts research in endometriosis and other diseases that predominantly affect women.

How did you get interested in this area?

I’ve been a feminist writer for almost a decade and have a background in reproductive health advocacy. So, I had always been thinking about women’s health, but very much through the lens of reproductive rights. And then about five years ago, I was diagnosed with rheumatoid arthritis. And that provided an impetus to broaden my lens and start thinking about how gender bias affected medical care more broadly than just reproductive health issues.

What surprised you most during your research for the book?

First, I was surprised by the time lag between when we make advances in research and when we begin to see advances in medical practice. The current knowledge gap that we have when it comes to women’s health is due in part to the lingering legacy of women’s underrepresentation in — or outright exclusion from — clinical research, and the lack of research on women’s conditions. This didn’t really begin to change until the early 90s. Another big thing that was surprising to me was realizing how deeply entrenched the tendency to dismiss women’s reports of pain and other symptoms is in the history of medicine. I think that at first I had seen that tendency to distrust women’s own accounts of their symptoms as just part of the more general lack of authority women’s voices often have in our sexist culture. But as I dug into it, I came to appreciate how this problem — what I call the “trust gap” in the book — is more specifically rooted in the concept of “hysteria” and the idea of psychogenic illness. I think that history really does help explain the dismissal of symptoms that so many women experience.

What do you mean by psychogenic illness?

“Psychogenic” means something that comes from the psyche or mind. This is opposed to “organic,” something rooted in the physical body. The concept has been handed down generation by generation within medicine ever since Freud came to see “hysteria” — which for centuries had been a loose diagnostic label for nearly all of women’s mysterious symptoms — not as a physical disease, but a mental disorder that causes physical symptoms. Since then, doctors have thought that if patients report physical symptoms that don’t appear to be due to a known physical disease, these symptoms can be attributed to the “unconscious mind.” While there are certainly well-defined mental health conditions like depression and anxiety that cause physical symptoms, the concept of psychogenic illness has often been used as a sort of default explanation when doctors are confronted with physical illness they can’t explain. Instead of having to admit the limits of their own knowledge — or the limits of medical science itself — they can say, “It’s all in your head.”

Can you comment further on the lack of research in understanding endometriosis beyond fertility?

Endometriosis is one of these conditions that in the 18 to 19th century would have been labeled as hysteria. Over the course of the 20th century it became more defined, but often endometriosis symptoms have been normalized or psychologized. Symptoms associated with menstruation have tended to be seen in medicine as something that is just a natural, inevitable part of being a woman or else as psychogenic in nature. In the 1960s and 70s, menstrual pain was often seen as evidence that women were resisting their feminine role. Similar to a lot of other predominantly female conditions, these two explanations of the disease have been just sort of accepted as reasonable. And that creates this catch-22: As a result of assuming it’s just psychogenic or normal, we don’t do the research, but without the research we don’t know very much about the physical mechanisms of the disease, which just perpetuates the problem. Money was made available by the National Institutes of Health (NIH) in the 80s for researching endometriosis, but no one applied for it, probably for a lot of the reasons I just mentioned. The condition then kind of just fell to the bottom of the research agenda and little funding has since been made available because it was assumed the interest wasn’t there.

You discuss how women’s health has historically been reduced to “bikini medicine,” focusing only on the breast and reproductive system. How does this limited perspective harm women?

Bikini medicine was coined in the 80s to refer to the fact that our conception of women’s health has focused on women’s breasts and gynecological problems and sort of left everything else out. This hurts women in a few ways. For one thing, it’s rooted in the rather sexist idea that women are reproductive vessels beyond all else. But also, it overlooks the fact that men and women have differences that are not related to the reproductive tract. They often have different presentations of the same disease. Heart disease is a good example of this. We studied heart disease almost exclusively in men for a few decades and developed a model of the disease based on research on them. And then in the last couple decades, we have realized that actually women often have different symptoms, risk factors, even a whole different “female pattern” form of heart disease, which has been totally unrecognized until recently. Another way that this “bikini medicine” idea has been limiting is that we’ve seen a disease like endometriosis as purely a gynecological problem, even though there is a lot of evidence that it’s really a systemic disease with a lot of immune system involvement. That’s perhaps part of why we haven’t made many strides in understanding it.

In your book, you reference a recent survey which found that nearly two-thirds of general practitioners felt uncomfortable diagnosing endometriosis. Why do you think this is and how do you think we can address this issue?

To some extent the challenge in endometriosis is that currently it is a surgically diagnosed disease. So, it would be way easier to diagnose if there were a biomarker — like a blood test. But beyond that, I think primary care doctors and gynecologists still clearly aren’t getting educated the way they need to be to recognize that this is a really common condition. I also think there’s evidence that many doctors are still being taught really outdated myths about the disease, like the idea that pregnancy is a cure. And, of course, there’s still this tendency — in medicine and the culture more broadly — to normalize menstrual pain. It was so striking to me how often women reporting really severe pain and other symptoms are just being told that it’s “normal” menstrual cramps.

Can you describe why advocating for yourself is important in women’s health and how this might be problematic?

I think it’s important to send the message to women that they should advocate for themselves and trust that they know when something is wrong in their bodies and get a second opinion if they’re not being taken seriously and being told “nothing is wrong.” I hope that one of the things the book can do is, by giving people this history and this context, make them feel a bit more empowered to do that, because it is a very difficult thing for even the most privileged and educated patients to push back against medical experts. But I also want to make sure that this is coupled with the acknowledgement that it shouldn’t be the case that we rely on women to become advocates for themselves, to do a bunch of research on their own, to go to many, many doctors to get a diagnosis. It inevitably leaves the least privileged women out of luck because not everybody has the financial ability and other resources — even the time — to do that.

Are you optimistic about the future of women’s health?

I feel pretty optimistic. I think on the topic of patient advocacy, one of the things I talk about in the book is just how much the internet has changed the dynamic and made it so much easier for individual women to have access to patient communities that can support them. I think this has made the patient experience so much less isolating than it was in the past. Also, the fact that patients have access to so much more health information than ever before is encouraging. (But again, not everybody has the ability to parse that information, and I don’t think everybody should have to do that.) I think it’s tilted the balance though to give patients more power than they previously had. I’m also feeling optimistic about the potential for collaboration across different conditions that primarily affect women, because I think there’s starting to be a lot of conversation about these issues in various patient communities. There also seems to be more interest among younger doctors and medical students today to learn about sex/gender differences in disease and under-researched women’s health conditions like endometriosis. In part, I think that’s probably because more women are in medical school — and also may be starting to personally experience some of these really neglected conditions themselves. I think that when doctors become patients that shift in perspective can be really powerful — and give them more insight into the problems patients face in the system.

To contribute to endometriosis research, you can download the Phendo app and track your symptoms. Tracking in Phendo may also help you understand your experience of the disease and communicate with your doctor.

Download Phendo for iOS here.

Download Phendo for Android here.

For more information about our research and Phendo visit www.citizenendo.org/phendo.

You can find answers to frequently asked questions about Phendo at www.citizenendo.org/phendo/faq

You can always email us too at citizenendo@columbia.edu

Patients and data science for an endometriosis cure: We bridge the gap between patient experience and clinical characterization of endometriosis.

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