When writer Maya Dusenbery was diagnosed with rheumatoid arthritis five years ago, she felt like her experience getting diagnosed at the doctor's office was "pretty straightforward."
But, when she started doing more research on autoimmune diseases, she began to realize that her story was rare.
"I found that a lot of autoimmune patients experienced these long diagnostic delays and really felt like they were being dismissed during that time, so that really inspired me to get in tune with how sexism might be playing out in medicine more broadly," Dusenbery says.
Her findings, that doctors often dismiss and misdiagnose women's symptoms, aren't surprising. A 2008 National Institute of Health study found that women wait an average of 16 minutes longer than men when receiving pain medicine in emergency rooms, and women are 13-25% less likely to receive opioids when they're in pain.
In her new book, Doing Harm, Dusenbery explores the ways in which healthcare still fails women — and makes the case that this failure is one of the biggest feminist issues of our time. She recently got on the phone with Refinery29 to discuss why gender bias in medicine is holding us all back.
Where do you think medicine’s gender bias stems from?
"On the most basic level, the fact that basically until the 1970s, there were essentially no women involved in medical practice or research. Certainly, I think that is the root problem, but I do think that one of my big takeaways from the research is the systemic problem I see, that I describe as a knowledge gap, where we just don’t have enough information and medical knowledge about women and their bodies and their conditions that disproportionately affect them. And then this trust gap, this tendency to not believe women’s reports of their symptoms.
"I really think that those two problems have just gotten so entrenched and have become so mutually reinforcing that they persist even though, these days, among medical school students, there are equal numbers of men and women. More broadly, we’re living in a time when women have more cultural and economic power than before, and yet I think because these problems become systemic and unconscious, they are still with us, which was surprising to me in 2018."
Are there some conditions in which medical bias against women is more pronounced?
"I think there are slightly different problems for slightly different diseases, though heart disease is a good example of a condition that, even though it’s the number one killer of women, it’s somewhat more common among men at least when they’re younger, so it’s stereotyped as a male disease.
"Other conditions that are more common in men — like autism, ADHD, cluster headaches —because they’re stereotyped in that way, and much of the research is done on men. There are similar problems where the women who have these conditions often fall through the cracks, either because their symptoms differ or because they don’t look like the typical patient. But, then I think a lot of conditions that disproportionately affect women, on the other hand, have been under-researched and neglected in general — conditions like fibromyalgia, or chronic fatigue syndrome, where we don’t know a lot about them, and when they’re diagnosed, there’s a stigma and lack of effective treatment."
What stereotypes about women do you think may have contributed to this bias?
"I think the tendency to not believe women’s reports of their symptoms is definitely connected to these larger, broader cultural stereotypes about women as emotional and irrational and hysterical in the colloquial sense of the word. It comes with this converse stereotype that men are stoic, or at least, they’re expected to be stoic in the face of pain, so when they enter the medical system, there’s an assumption that there must really be something wrong with them so that they’re there. People assume that they’re reluctant to be seeking care to begin with, whereas I think women are stereotyped as more ready to seek care."
Do you think medical bias differs amongst race and class?
"Yeah, absolutely. I was really struck by the fact that a lot of women’s differing identities on the basis of race, class, gender identity or weight, kind of lead to these other stereotypes that sometimes become even more relevant than their identities as women.
"We really see that patients of color and particularly Black patients are really impacted by the stereotypes that they’re drug seekers and seeking prescription painkillers. Trans patients are often told that any and all symptoms they’re experiencing are due to being trans and taking hormone therapy. Overweight patients have a very similar dynamic where everything gets blamed on their weight and they’re told to lose weight. I think those intersecting identities add a whole other layer on top of it."
It’s important to advocate for yourself, but your book shows that even when women do, we’re ignored. How can women be their own advocates in the doctor’s office?
"I do think there’s a lot of catch-22s that are very clear, where you want to advocate for yourself, but you don’t want to come across as that difficult, demanding patient, so I think it is tricky. But despite that, it’s better to advocate for yourself than not. I hope the information in the book makes people feel empowered to get a second opinion if they’re feeling dismissed, and trust themselves when that expert is saying there’s nothing wrong or that it’s just stress. That’s such a hard thing for any patient to do no matter how educated or privileged they are, and having a little bit of a better understanding of the limits of medical knowledge and the awareness that these really are systemic problems will hopefully make patients feel a little more comfortable pushing back against that."
What can the medical system do to make sure that women are heard?
"Yeah, I mean, so much. I hope that the information in the book will be eye-opening to healthcare providers too, because I think a lot of them also don’t know this history, aren’t really aware of this knowledge gap, and aren’t attuned to how frequently women are dismissed and their diagnoses missed. And, so I hope that the book and also women starting to speak up more about these experiences will help put the problem on the radar for some greater urgency behind efforts to address the problem."
Are there any easily accessible/easy to understand resources that women can turn to for reliable info on medical care that you’d recommend?
Medical bias obviously holds women back, but in what ways do you think it holds us back as a society?
"On the one hand, there’s this lack of attention to women’s bodies and their health condition that obviously harms women, but that's also scientifically unjustifiable. We have lost out on a lot of medical knowledge, because we’ve directed more health research to, and prioritized, the health conditions of men. We all have been deprived of the knowledge we could have if we had been giving equal treatment to understanding women and their conditions as well."
What are some actionable takeaways women can learn from this book?
"I think one thing would be to advocate for more NIH funding for conditions that specifically affect women that are really underfunded. I think there’s also room for grassroots advocacy to really firm up the federal policies around including women in clinical research but also making sure that results are always analyzed by sex and gender to really uncover the differences.
"On an individual level, some of the experts I spoke to suggested that women could put some kind of bottom-up pressure on the system by asking their own doctors questions like, Has this drug been tested in women? Are you aware of any differences? I don’t believe the burden is on individual women to do that educational work, but it could be a helpful small step."
This interview has been edited and condensed for clarity.
Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick is on sale in bookstores and online now.
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