'Medical Symptoms That Medicine Can't Hear': A Conversation With Maya Dusenbery - Pacific Standard

'Medical Symptoms That Medicine Can't Hear': A Conversation With Maya Dusenbery

In her new book, Dusenbery provides a comprehensive and much-needed look at how sexism in the medical field is hurting women.
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A female patient diagnosed with "sleep hysteria" wearing a straitjacket, 1888.

A female patient diagnosed with "sleep hysteria" wearing a straitjacket, 1888.

Women and medicine have a long and complicated history, one founded on a belief in silent symptoms, hysteria, and a "roaming uterus" that could only be cured by marriage. Thus began an entrenched pattern of distrust for (and dismissal of) women's health problems, by both male and female doctors. Maya Dusenbery, journalist and executive editorial director of Feministing.com, tracks this underreported history with meticulous detail in her new book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

From stories of chronic illness and pain to emergency room visits for heart attacks, Dusenbery illustrates the hurdles through which women must jump if they want to receive medical diagnoses based on actual symptoms, rather than on stereotypes. Women have instead been subjected to years of mistreatment and costly (both financial and medical) mistakes, as doctors continue to attribute symptoms to psychological causes and to an "over-dramatization" of symptoms among women.

Much of the discrepancy in treatment stems from the "knowledge gap," which Dusenbery writes about in depth. A lag in research hinders doctors from understanding medical differences between genders. She outlines the history (still ongoing) of the lack of inclusion of women in clinical trials, and the "urge" but not the mandate for researchers to include more women in their clinical studies. Researchers have paid minimal attention to conditions "unique to or more prevalent or serious in women," and have also managed to exclude women from the vast majority of clinical studies (for example, a 1980s study looking at the effect of obesity on breast and uterine cancer failed to enroll any women in the study).

Doing Harm demonstrates persuasively that subconscious gender-bias in medicine is very real and pervasive for women of all backgrounds, as doctors continue to apply a "one-size-fits-all" method of diagnosis and medical evaluation to their women patients. Doing Harm is a thoroughly researched and much-needed exposé, weaving together different stories that illuminate an unfortunately repetitive theme: The recognition of the lag in women's health care is long overdue, and it's time to relieve the burden placed solely on women to fight not just for reproductive care, but for a more holistic approach to women's health care.

Pacific Standard spoke with Dusenbery about the illnesses that disproportionately affect women, how the "knowledge gap" limits possibilities for progressive health care and the feminist energy that can push for change.

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You write, "I realized that my relationship to the medical system, like my relationship to my own body, had been very much influenced by my status as a fairly healthy person." How has this relationship changed?

I didn't really have any health problems, didn't go to the doctor too much, and didn't have any complaints. I assumed that, if I did, I would trust [my doctors] that they knew what was up. I developed rheumatoid arthritis about five years ago. I was really lucky in that regard; I got diagnosed and treatment quickly.

I started hearing the stories of other patients with autoimmune disease who weren't so lucky. I heard tales of women patients having really long diagnostic delays, and many reported feeling during that time some sense of not really being taken seriously, dismissed as stressed, or minimized.

Autoimmune diseases are super common; they affect up to 50 million people in the U.S., and 75 percent are women, yet there's not a lot of awareness about this huge and growing epidemic. It's confusing why, if autoimmune diseases are so common, the medical system seems to be not so good about diagnosing them quickly. I started thinking about how gender bias is affecting medical care beyond reproductive health issues. I wrote an article for Pacific Standard in 2015 that featured a study that shows women, when they sought care for a heart attack, often were brushed off. They themselves had delayed seeking care out of fear that they would be seen as hypochondriacs. This study seemed to speak to some deeper problems, and I started digging into various medical conditions where similar issues were playing out.

Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

One message your book really highlights is that women's health does not equal reproductive health. The two are very different, and women's health is much bigger than reproductive health.

A lot of feminists and women's health activism have focused on reproductive health. There are certainly good reasons for that focus; for one, there is a lot of dangerous political meddling in reproductive health. You have to constantly be on the defensive to secure access to things like abortion and birth control. So many women (not just women, but anyone with a uterus) are in need of routine reproductive health care. The sheer number of the people that reproductive health affects makes it an important feminist issue, but I do think that it has taken up a lot of feminist energy around changing the medical system. It echoes a bias that exists within medicine to conflate women's health with reproductive health and see anything that's affecting women through that lens.

Medicine acknowledges that women have unique needs by tending to focus on breasts and genitals. It hasn't focused on the fact that there also are sex-gender differences in experiences and manifestations of the same disease. During a heart attack, women and men experience differences in symptoms and risk factors. The prevalence of conditions like autoimmune diseases or chronic pain diseases that disproportionately affect women should be seen as women's health issues.

You conclude the book with the story of ovarian cancer as the silent killer, one that doctors claimed didn't show symptoms. But women had been speaking of symptoms for years.

The symbolism of it was too perfect.... Women's stories about these experiences can help bring about change. There's a silence that I didn't fully appreciate until I started the research, finding that a lot of women who have been dismissed or misdiagnosed keep the experiences to themselves and internalize it.

I hope the book shows that these experiences are common and that they reflect these larger systemic problems, both for the sake of women to feel less alone, and for medical professionals to get that feedback.

How does media play a role in the medical perceptions of women?

I recently wrote about a really excellent Grey's Anatomy episode that shows these issues in action. Medical dramas tend to be a little unrealistic when it comes to how amazing the doctors are, and that they never make mistakes. This episode brought some nice realism. There are so few representations of chronic illness in popular culture. These conditions that disproportionately affect women don't have that neat narrative of overcoming cancer or a really dramatic heart attack. People often suffer in silence and these illnesses haven't been explored by popular culture.

You write, "medicine wasn't just 'responding to' a stereotype that was in the air; it was also perpetuating it," throughout the 20th century.

It's odd, but it seems like there is a stereotype for every sort of woman. If she's highly educated and privileged in ways of race and class and education, obviously those privileges would be benefits, yet in some way be held against her. She could come across as a domineering entitled patient spending too much time on WebMD. If she's a woman of color or a working-class woman of any race, she might be subject to stereotyping as a drug user. I don't think there's really anyone that can escape it.

My privileges would give me not only this logistical and financial resources to keep pushing for the care I need, but also the sense of entitlement to say something’s wrong. But for all women, it is a hard thing to question a doctor and trust yourself when a doctor, who is supposed to be the expert, is telling you that nothing's wrong. Patients of color, low-income patients, and transgender patients—all of these groups have experienced disparities themselves that intersect with gender bias. For women of color especially, the drug-seeking stereotype is a front-and-center one that impacts them, becoming even more important than their gender.

How do these disparities create barriers specifically for women of color and low-income women?

The lack of access to care, whether it's due to insurance coverage or other financial barriers and logistical barriers, affects whether women even can get in the door of the medical system at all. Women of color and low-income women are particularly impacted by that and this supersedes the problem in the medical system.

Once women prove that they're really sick, doctors usually treat them similarly to their male counterparts at that point, but there's evidence for patients of color that that's not the case. This suggests that, even though women as a group and black patients as a group get under-treated for their pain, the reasons for that might be a little bit different. For women in general, it's more about not understanding. For patients of color, there's more of an empathy gap of caring and longstanding myths about pain.

Women even go as far to diminish their pain, to seem "anti-hysterical."

There were a number of women with chronic pain who have spoken to this idea of being in this trap where you do anything to get your pain taken seriously. If you try to show how much pain you're in by crying, that might backfire because you're "too emotional," but if you are super stoic about it and just matter-of-fact say my pain is a 10 on a one-to-10 scale, it's hard to get that across.

One woman even said she was thankful for ultimately receiving a cancer diagnosis because she felt validated that her symptoms weren't made up, that she wasn't "crazy."

This is the real core problem. It has become entrenched in medicine. I write about the knowledge gap and the trust gap being mutually reinforcing, and this is an example of how that happens and how the one sees the other. If medicine has collectively decided that any symptoms in women can't be explained by an underlying physical disease or aren't yet understood in precise biological terms, then we attribute them to psychogenic causes and just don't do the scientific research that's needed to explain the symptoms. It's a surprising problem for medicine to have, given that medicine presents itself as a scientific endeavor. If it's medically unexplained, then we should be doing the research to explain it. That's the whole point. Instead of pouring all of the research money and effort into explaining [women's symptoms], the opposite has happened—they have been totally neglected.

Most doctors don't know their rates of misdiagnosis and medical error, especially for treating women.

It was very helpful in understanding the problem to realize that doctors aren't getting feedback; there isn't a systematic way that doctors learn that they made a mistake and that the women they had dismissed ended up getting diagnosed.

This shows that it's not about malicious intent or conscious bias. It's really about unconscious bias and doctors not receiving knowledge they need to avoid perpetuating the problem.

What can lead to change?

Individual women need to advocate for themselves and get second opinions. I hope that learning this history and seeing the research will make them less likely to accept medical dismissal. But it's important to acknowledge that women shouldn't have to bootstrap their way out of this problem. It's on the people within the research and medical communities to come up with solutions. There are a lot of great people within the profession working on these issues already and I hope that greater recognition of the extent of the problem will spur others to get involved in those efforts as well.

This interview has been edited for length and clarity.

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