Maya Dusenbery on How Medical Gaslighting Sidelines Women’s Health Problems

Maya Dusenbery had been working as a feminist writer for most of her adult life, but she hadn’t spent much time thinking about how women were treated in medicine. Then, an unexpected personal health issue showed her firsthand the unique challenges that women face in navigating the healthcare system. Her book, Doing Harm, stems from this experience and looks more largely at gender bias in medicine and how it hurts women. Read on to hear her story and learn why women’s health problems are often sidelined, why medical gaslighting is so widespread, how gender bias in research changes outcomes for women, and more. 

*This is a short clip from our interview with Maya Dusenbery. Click here to watch the whole thing.*

You can also listen to our interview with Maya Dusenbery on The WellBe Podcast.

How An Unexpected Diagnosis Opened Maya Dusenbery’s Eyes

When Dusenbery was in her late twenties, she began experiencing pain in her joints. She’d been very healthy for her entire life up until that point, so she was concerned. After seeing a physician, she was diagnosed with rheumatoid arthritis at age 27. 

Naturally curious, Dusenbery took it upon herself to learn all she could about RA. This quickly led her to explore the topic of autoimmune diseases in general, and that’s where she began to see how gender disparity played out in the medical space. 

“I really just hadn’t thought that much about how well-equipped medicine was to care for me [as a woman] if I were actually sick,” says Dusenbery. “And that was despite being a feminist writer who was really interested in women’s health and had written a lot about reproductive health issues.” She’d seen clearly the challenges that women faced when it came to sexual and reproductive issues, but now she saw that the effects of gender bias in medicine had a far wider reach. Specifically, she learned that 50 million Americans had autoimmune diseases, the majority of them women. 

Perhaps more importantly, she understood that she was one of the rare women who had actually received a diagnosis relatively quickly — for most women, they spent years visiting different doctors before getting diagnosed, if they ever were. She made it her mission to figure out why it was that these stories were so common for so many women. “I came into it as a feminist writer who was not surprised to find that medicine is yet another realm where women aren’t treated quite as equally as men,” she says. 

Identifying the Root Causes of Gender Bias in Medicine

In her research, Dusenbery interviewed doctors and researchers, as well as speaking with many women about their personal experiences in the healthcare system. Her hypothesis — that there was a gender bias in medicine that negatively impacted women — was quickly backed up by these interviews. The question to answer now was: why is this the case? 

Ultimately, Dusenberry identified two root problems that have created the systemic gender bias in medicine:

1. The Knowledge Gap. Doctors simply don’t have as much knowledge about women’s bodies as they do about men’s bodies, nor do they have a solid understanding of symptoms and conditions that disproportionately affect women compared to men. This is partly a relic of the longstanding gender bias in research, in which women were underrepresented in clinical research or left out entirely for decades (more on that below). The knowledge gap is perpetuated by the long lag time between research being conducted and it making its way into medical training (on average 17 years), plus the fact that women’s health problems are not at the top of the research agenda today. The result is that many conditions that mostly affect women are poorly understood, and so remain undiagnosed. 

2. The Trust Gap. This is basically another way of saying medical gaslighting, a huge issue that we’ve touched on before in our interview with Dr. Taz. It refers to the tendency of doctors to dismiss women’s symptoms, particularly subjective symptoms like pain and fatigue. Doctors can’t test for symptoms like this, and so must simply trust the patient’s account rather than the labs — and they often don’t. “So many women have stories of being told it’s just stress or anxiety, or having their symptoms normalized in many ways,” says Dusenbery.

She also adds that the lack of a good feedback system for mainstream medicine allows gender bias in medicine to continue without any meaningful reckoning. Because there’s no way for doctors to know when they’ve made a diagnostic error, a lot of doctors just assume that they’ve been getting everything right. “They don’t hear the stories of women who have gone to five doctors and been told it was stress and then finally got the right diagnosis,” says Dusenbery. Most people don’t then call all the doctors’ offices who had been wrong to let them know.

How Medical Gaslighting Sidelines Women’s Health Problems

Many women’s health problems involve subjective symptoms like pain or fatigue: women are two to three times more likely to develop RA, four times more likely to develop chronic fatigue syndrome, and three times as likely to develop autoimmune conditions, which often come with debilitating pain. What’s more, these differences are seen worldwide, regardless of a country’s overall health outcomes, and the differences start to emerge in childhood.

The problem with subjective symptoms is twofold: first, that they don’t show up on labs, and second, that many doctors have a predisposition to mistrust women. Enter medical gaslighting. 

“Medical gaslighting is a healthcare provider encountering a patient who’s reporting symptoms and then running tests and coming up with nothing and saying, ‘There’s nothing wrong with you,’” says Dusenbery. “Or they minimize those symptoms, calling them just the daily aches and pains of normal living, or just stress because you’re an overworked mother, or just normal menstrual pain as opposed to really severe pelvic pain that needs to be investigated.” In short, the healthcare provider sends the woman on her way, telling her that whatever she’s dealing with isn’t real or important enough to merit any sort of treatment. 

According to Dusenbery, women are gaslit in medicine in many different ways, but it most frequently takes the form of psychologizing symptoms, or telling a woman that her physical symptoms are a result of stress, anxiety, or some other mental or emotional issue. She points out that this tendency has been with us for a very long time, and can be traced all the way back to the ancient Greek era, when the “hysteria” diagnosis first emerged. 

While hysteria is no longer a recognized medical condition today, the mentality that led to its emergence is alive and well. “There’s still this tendency to attribute symptoms that aren’t readily explained to the patient’s psychology, and I think that disproportionately affects women,” says Dusenbery. This dynamic leaves women in what Dusenbery describes as a catch-22, where they’re dismissed if they dramatically describe their symptoms, and also dismissed if they downplay them. 

“Pain is so hard to communicate to another person even in the best of times, and then you bring in all of these stereotypes and the tendency to see women as overly emotional in response to pain,” says Dusenbery. “So there’s this double bind that women are in: If you’re trying to articulate how severe your pain is, but you don’t want to come across as just a hysterical woman that’s overly emotional, a lot of women take the opposite route and try to be really stoic. But that can backfire, because then you’re basically downplaying your pain, right? So then people might think, well, there’s nothing wrong. If she were really in pain, she would be crying.”

Medical gaslighting also means that many conditions that primarily affect women, like fibromyalgia or chronic fatigue syndrome, are assumed to be psychosomatic. This, in turn, means that they get very few research dollars directed to them, and so continue to be poorly understood and marginalized. 

Gender Bias in Research: Why Women Were Excluded 

Medical gaslighting comes about because of the “trust gap” that Dusenbery describes. But the knowledge gap plays an equally important role, and the two factors continue to feed one another in a vicious cycle. The less doctors learn about women’s conditions, the more likely they are to dismiss them; the more often doctors dismiss them, the less they learn about them. 

When you look at the history of clinical research, you can clearly see how this knowledge gap emerged. For many decades, women were either completely excluded from or vastly underrepresented in medical research, and nobody questioned this approach. There were various reasons given for women’s exclusion, perhaps the biggest being that white men were simply considered the norm, and so everything was (and, sadly, often continues to be) constructed with them in mind.

There was also the fact of women’s hormones and reproductive systems, which many researchers saw as not only an overly complicated variable but also a liability. In fact, the FDA issued a policy in 1977 recommending the exclusion of all women of childbearing age from all clinical research, even if they were using contraception and had no intention of having children. Even aside from this policy, Dusenbery says, researchers generally wanted to steer clear of women, because their complex hormonal fluctuations added unwanted complications to studies.

She explains that a lot of big, foundational clinical studies in the 1980’s were done on thousands of men and no women, with no justification beyond the assumption that there weren’t many differences between the sexes beyond reproductive organs, and that it was fine to extrapolate male results to the female population. “But I do think one of the less acknowledged reasons was just that it was harder and more complicated,” says Dusenbery. “There’s the sense that women’s hormones made them a more heterogeneous group of subjects and that it would be much easier to have an all-male study population.” In other words, it was lazy medicine.

Dusenbery also points out that by acknowledging that women were more complicated subjects, the researchers were implicitly admitting that it was essential not to exclude them. “That excuse underscores exactly why women need to be included: if you’re acknowledging that your results might be changed and might be more complicated if you include women, that’s acknowledging that it’s really important for a study [to include women] that’s potentially studying a drug that’s going to be prescribed to women,” she says. 

The exclusion of women from clinical research began to get public attention in the 1990s, and there were congressional hearings to try to get to the bottom of why all these taxpayer-funded studies from the NIH excluded half of the population. There was a public outcry at these revelations, and policy changes were made to include more women going forward. However, since there’s an estimated lag time of 17 years between research being conducted and it making its way into medical practice, many of the effects of these changes haven’t yet been felt. 

Though the past looks fairly bleak with regard to women’s treatment in medicine, Dusenbery believes there’s reason to feel hopeful. Since her book came out 2018, she’s seen more books, articles, and conversations on the topic. “I feel hopeful that as more people talk about it, both inside and outside of the medical system, that progress will be made,” says Dusenbery.  “I feel very optimistic about the power of women’s stories really helping to shift things in this regard.”

Have you ever experienced medical gaslighting? How did you respond? Share your story in the comments below. 

Watch our full interview with Maya Dusenbery to hear the shocking story of one young woman with a perforated organ who doctors dismissed as being drug-seeking and another women who suffered from debilitating fatigue for 10 years before being diagnosed with lupus, what things she believes need to happen to fix the current medical gaslighting that women face, what women can do to protect themselves from medical bias, and much more.

You can also listen to our interview with Maya Dusenbery on The WellBe Podcast.

Citations:

1. van Vollenhoven, Ronald F. “Sex differences in rheumatoid arthritis: more than meets the eye…” BMC medicine vol. 7 12. 30 Mar. 2009, doi:10.1186/1741-7015-7-12.

2. Unger ER, Lin JS, Brimmer DJ, et al. CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education. MMWR Morb Mortal Wkly Rep 2016;65:1434–1438.

3. Fillingim, Roger B et al. “Sex, gender, and pain: a review of recent clinical and experimental findings.” The journal of pain vol. 10,5 (2009): 447-85. 

4. Morris, Zoë Slote et al. “The answer is 17 years, what is the question: understanding time lags in translational research.” Journal of the Royal Society of Medicine vol. 104,12 (2011): 510-20. 

Maya Dusenbery is a journalist, editor, and author of the book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. Her writing has appeared in outlets including The New York Times Magazine, Scientific American, and Teen Vogue. She received her B.A. from Carleton College. You can read more about her here.