Journalist Maya Dusenbery's new book—Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick—is an in-depth examination of how gender bias in medicine has negatively impacted women’s health for generations. In a starred review, Publishers Weekly noted that Doing Harm "skillfully interweaves history, medical studies, current literature, and hard data to produce damning evidence that women wait longer for diagnoses, receive inadequate pain management, and are often told they are imagining symptoms that are taken seriously in men."
Dusenbery, a Minnesota native, has written about women’s and reproductive health issues for a wide variety of media outlets, including Slate, Cosmopolitan.com, HuffPost, TheAtlantic.com, and Teen Vogue. She is the editorial director of the feminist site Feministing.com, and she has previously been a fellow at Mother Jones magazine and a columnist at Pacific Standard. Before becoming a full-time journalist, she worked at the National Institute for Reproductive Health. Doing Harm, which was published by HarperOne, is her first book.
We recently talked with Dusenbery about her book and her other work.
What started you on this book project?
About five years ago I was diagnosed with rheumatoid arthritis, and that got me started down this path. I had a pretty easy time getting diagnosed and always felt my concerns were taken seriously. Once I was diagnosed, I got interested in learning more about autoimmune diseases. I learned that many autoimmune patients—most of whom are women—aren’t as lucky as me. According to one recent survey, the average autoimmune patient sees four doctors over four year before being properly diagnosed, and about half report being dismissed as “chronic complainers” during that time. And as I started to tune into it, I started hearing lots of stories from female friends and peers who’d struggled to get diagnosed with other health problems and felt like their symptoms weren’t being taken seriously, or that they were being treated as if the symptoms were "all in their head." And as a feminist I wanted to understand what those experiences were rooted in.
The book reviews how ME/CFS (myalgic encephalopathy/chronic fatigue syndrome), fibromyalgia, many autoimmune diseases like multiple sclerosis, and other chronic illnesses are all part of the group you refer to as “the disorders formerly known as hysteria.” Can you elaborate?
There are a lot of diseases we recognize today that have been carved out of a wastebasket diagnostic category of illness that in past centuries was called hysteria and since then has gotten different euphemisms, like psychogenic, psychosomatic, or somatization disorders. ME/CFS is one of them—I think that is a pretty dark example of a condition that disproportionally affects women and is very much stereotyped as a women’s disease. That is in large part why, I would argue, it is understudied and belittled. Skeptics of the illness have often pointed to the fact that it mostly impacts women as a reason to believe that it’s psychosomatic.
That’s a common pattern. Conditions like interstitial cystitis, fibromyalgia, endometriosis, and vulvodynia also have a very similar history: You find descriptions in the past medical literature that match them, but for decades beginning in the early 20th century, when hysteria came to be seen as a psychological problem post-Freud, they were just assumed to be psychosomatic. It wasn’t until the eighties and nineties that some of these conditions were even named and defined, let alone studied. And for all of them, it’s been very difficult to get research funding because they were assumed to be psychosomatic. But that’s the catch-22: You can’t prove they’re not psychosomatic unless you do the research. And again, I think a major reason that medicine has been so content to believe these conditions are psychosomatic is that they disproportionately impact women, and there’s this long tradition of viewing women as especially prone to “hysterical” symptoms.
What were your main findings about why we’re in the situation we’re in?
The book lays out two problems that I see in the system—what I refer to as the knowledge gap and the trust gap. The knowledge gap refers to the deficit of knowledge we have had about women’s bodies and about conditions that disproportionately affect women. That’s a legacy of the many decades during which women were excluded from clinical research and their concerns were a low priority on research agendas. And the trust gap has been the tendency on the part of health care providers to not trust women’s self-reports of what they’re experiencing in their bodies—to minimize, normalize, or psychologize their symptoms. And that, in turn, has led to a lack of trust in the medical system on the part of women who have experienced this dismissal.
For me, the most striking thing that I discovered in the research was how those two problems seem to be so mutually reinforcing. The less knowledge we have about women’s health, the more women find their symptoms are "medically unexplained," and then the symptoms often get dismissed as psychological. So the knowledge gap sort of creates this presumption that women’s symptoms are often psychosomatic. On the flip side, the tendency to assume that women’s unexplained symptoms must be psychosomatic has perpetuated these knowledge gaps, since it leads to a lack of research—and even a lack of awareness of the need for research.
I think this is very much a problem that’s rooted in systemic and unconscious gender bias. I certainly don’t think in most cases it’s based in any sort of consciously held prejudice—it’s about these implicit assumptions that we all have, male or female, in the medical profession or not. And it’s also in large part about how medical knowledge itself has been impacted and skewed by gender bias over the centuries. I’m hopeful we can turn this around, because there does seem to be somewhat more openness within the medical profession today to thinking about these implicit biases and acknowledging that there are some gaps in medical knowledge.
Can you elaborate on the concept of medically unexplained symptoms?
Medically unexplained symptoms, or MUS, is a phrase that applies to individual symptoms that patients present to a doctor that the doctor doesn’t think are attributable to a physical cause. The term is also used to refer to a range of illnesses, like fibromyalgia, ME/CFS, irritable bowel syndrome, and others without identified causes. Most patients with MUS—about 70 percent, according to the medical literature—are women. In the literature, MUS is often used synonymously with terms that imply a psychogenic cause, like somatization disorder. That reflects a deeply ingrained tendency in medicine to assume that anything that is “medically unexplained” must, by default, have a psychological explanation instead.
So the problem is that medicine tends to see medically unexplained symptoms not just as medically unexplained but medically unexplainable. And the term is also used as if it is a disease category in and of itself. That is, MUS is talked about as if it’s a ‘thing,’ even though it covers everything from idiopathic low back pain to unexplained seizures or other symptoms that are only united by the fact that they’re not fully explained by medical science. These symptoms go into that diagnostic wastebasket, which is where everything we can’t explain goes until we can explain it. Over the decades, many conditions have been removed from the wastebasket and accepted as legitimate diseases as we have come to better understood their underlying mechanisms. But, as we’ve seen with ME/CFS and other “disorders formerly known as hysteria,” that evolution can take a long time because they’re less likely to be researched if they’re in the wastebasket.
Another big problem with how the concept of medically unexplained symptoms is used is that it tends to obscure the reality of diagnostic errors. In the medical literature, it’s reported that a high percentage—from one-third to two-thirds—of patients seen in both primary and secondary care have MUS. But there is not much acknowledgment that at least some of these cases are patients with a perfectly diagnosable disease who just haven’t gotten that diagnosis yet. There are very few follow-up studies to show how many patients with alleged MUS actually get diagnosed down the line. Often it’s not even acknowledged that you need that follow-up study—that saying X percent of symptoms are medically unexplained without knowing what happened afterwards isn’t very meaningful data.
What are the implications for patients if something is treated like MUS?
Symptoms that are lumped into this category are thought to be already explained by psychiatric problems, so patients are inappropriately treated with psychotropic drugs or referred for psychotherapy. And, of course, they’re also not getting the treatment they do need. If patients are labeled with MUS when they actually have a yet-to-be-diagnosed disease—like an autoimmune disease—that can mean lasting disability or death.
There is also a lot of circular reasoning when it comes to deciding that a patient is experiencing MUS. Doctors are told that patients with MUS tend to insist that their disease is physical, resist psychiatric treatment, and see many health care providers—or “doctor shop.” But, of course, all of those things are exactly what a patient with an undiagnosed medical condition would be doing. These are perfectly rational behaviors and yet they’re somehow taken as hallmark signs that these patients don’t have a physical disease. This creates a very dangerous dynamic where once a patient has been labeled as having MUS, it becomes extremely difficult to convince doctors otherwise—everything you might do will just seem to confirm it.
Isn’t this situation frustrating for doctors as well as patients?
Very much so! And I‘m certainly sympathetic to individual doctors—I can see how it would be very easy to be frustrated with patients experiencing an illness you can’t explain, and then project some of that frustration onto the patients. But it’s important for doctors to recognize that a patient who is reporting symptoms that they don’t have any explanation for might have her symptoms explained down the line by another doctor. And what I learned from experts in diagnostic error is that there is overconfidence among doctors about their diagnostic skills—they recognize that diagnostic errors happen but think that they personally don’t make them very often.
And that’s not even their fault. The problem is we don’t have feedback systems in place that will actually let doctors know they made an error. So they assume they’ve gotten the diagnosis right unless they hear otherwise—and they usually don’t unless the patient themselves comes back to tell them they were wrong. In other words, they overestimate their batting average, and they also continue to hold the same stereotypes they had about her: that she was yet another woman complaining of “medically unexplained symptoms.” And that affects how they perceive the next woman who comes to them reporting similar symptoms.
Frankly, doctors should be on the front lines calling for an investment in scientific research to explain these poorly understood conditions so that they are no longer in the position they’re currently in: unequipped to offer a large percentage of their patients an explanation and effective therapies for their illnesses. This status quo is bad for everyone, doctors and patients, and severely erodes the doctor-patient relationship. But doctors are in a better position to bring about the change that’s needed to close these knowledge gaps.