Contemporary Authors

• Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick HarperOne (New York, NY), 2017

https://lccn.loc.gov/2017019560 Dusenbery, Maya, author. Doing harm : the truth about how bad medicine and lazy science leave women dismissed, misdiagnosed, and sick / Maya Dusenbery. First edition. New York, NY : HarperOne, [2017] 390 pages ; 24 cm RA564.85 .D88 2017 ISBN: 9780062470805 (hardback)

• Maya Dusenbery - https://www.mayadusenbery.com/about/

  Maya Dusenbery

  About
  Doing Harm
  About the Book
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  Maya Dusenbery is a journalist, editor, and the author of the book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, which the New York Times Book Review called "well researched [and] wonderfully truculent."

  In 2013, she became editorial director of the trailblazing site Feministing, where she has written about a range of feminist topics—including abortion stigma, rape culture, masculinity, sex, economic justice, and occasionally her favorite TV shows—since 2009. She has been a fellow at Mother Jones magazine and an online columnist at Pacific Standard. Her work has also appeared in publications like Cosmopolitan.com, HuffPost, TheAtlantic.com, Bitch magazine, Teen Vogue, New York Post, as well as the anthology The Feminist Utopia Project.

  Before becoming a full-time journalist, she worked at the National Institute for Reproductive Health. A Minnesota native, she received her B.A. from Carleton College in 2008. After living in Brooklyn, Oakland, and Atlanta, she is now based in the Twin Cities.

  Email: mayadusenbery [at] gmail [dot] commayadusenbery [at] gmail [dot] com / Twitter: @mayadusenbery

  © 2018 Maya Dusenbery

• Feministing - http://feministing.com/author/maya/

  Maya Dusenbery is executive director in charge of editorial at Feministing. She is the author of the forthcoming book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick (HarperOne, March 2018). She has been a fellow at Mother Jones magazine and a columnist at Pacific Standard magazine. Her work has appeared in publications like Cosmopolitan.com, TheAtlantic.com, Bitch Magazine, as well as the anthology The Feminist Utopia Project. Before become a full-time journalist, she worked at the National Institute for Reproductive Health. A Minnesota native, she received her B.A. from Carleton College in 2008. After living in Brooklyn, Oakland, and Atlanta, she is currently based in the Twin Cities.

Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed,
Misdiagnosed, and Sick
Karen Springen
Booklist.
114.12 (Feb. 15, 2018): p8+. From Book Review Index Plus. COPYRIGHT 2018 American Library Association http://www.ala.org/aboutala/offices/publishing/booklist/
Full Text:
Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.
By Maya Dusenbery.
Mar. 2018. HarperOne, $27.99 (9780062470805). 613.
In this medical manifesto, Dusenbery, editorial director of Feministing.com, empowers women, telling them to trust their instincts, get second opinions, and refuse to settle for one-size-fits-all health care. Why should so many studies be conducted just on men? After all, many conditions, such as Alzheimer's disease and chronic fatigue syndrome, disproportionately affect females. In 2014, only 21 percent of full professors and 16 percent of deans at U.S. medical schools were women. Well-meaning and not-so-well-meaning doctors cause harm, bringing their biases to their diagnoses. When one black teenager told her gynecologist she would continue using condoms, he "prescribed prenatal vitamins, saying it was obvious she'd be pregnant soon," says Dusenbery. In one survey, nearly half of female patients with autoimmune diseases said they were initially dismissed as "chronic complainers." Too often doctors chalk up abdominal pain to menstruation, including cases of one woman with colon cancer and others with endometriosis. Dusenbery urges female patients to be more confident and their doctors to be less dismissive. "Believe us when we say we're sick," she writes. Good advice that may be easier said than done.--Karen Springen
1 of 6 6/3/18, 8:53 PM
http://go.galegroup.com/ps/marklist.do?actionCmd=GET_MA...
Source Citation (MLA 8th Edition)
Springen, Karen. "Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave
Women Dismissed, Misdiagnosed, and Sick." Booklist, 15 Feb. 2018, p. 8+. Book Review Index Plus, http://link.galegroup.com/apps/doc/A531171476/GPS?u=schlager&sid=GPS& xid=2526d4e3. Accessed 3 June 2018.
Gale Document Number: GALE|A531171476

QUOTED: "Within an organized, well-balanced combination of scientific and social research and moving personal stories, Dusenbery makes a convincing case for the need for drastic industry reform."

2 of 6 6/3/18, 8:53 PM

http://go.galegroup.com/ps/marklist.do?actionCmd=GET_MA...
Dusenbery, Maya: DOING HARM
Kirkus Reviews.
(Jan. 15, 2018): From Book Review Index Plus. COPYRIGHT 2018 Kirkus Media LLC http://www.kirkusreviews.com/
Full Text:
Dusenbery, Maya DOING HARM HarperOne (Adult Nonfiction) $27.99 3, 6 ISBN: 978-0-06-247080-5
A sturdy account of how sexism in medicine is hobbling women's health care.
When Feministing.com editorial director and lifelong athlete Dusenbery was diagnosed with rheumatoid arthritis, she began an analysis of medical science's lack of understanding of autoimmune diseases. As she probed further and began hearing stories from women whose health complaints were either dismissed or misdiagnosed, the author developed serious concerns about the lack of attention paid to the potential differences between men and women. She places blame in part on the male-dominated medical industry, which approaches gender gaps and their separate health-related concerns lopsidedly and with a marked lack of knowledge and trust. In her well- informed study, Dusenbery traces the history of women's medicine and health care activism and presents a wide variety of anecdotal material from women who voice their experiences and their exasperation with a system that remains unsupportive, skeptical, and indifferent when confronted with reproductive issues, pain complications, sex-specific drug reactions, and general well-being. The same applies when addressing diagnostic delays, which can render a suffering woman unable to function in society or physically cope. The author notes that in matters of heart disease and women, the symptoms have been undertreated or misdiagnosed entirely under the universal "male model" platform of the condition. Her analysis progresses into greatly misunderstood issues of chronic pain, migraine disorders, endometriosis, and chronic fatigue syndrome, all supported with engaging stories of women who wound up either being considered "hysterical" or had their suffering categorized as psychosomatic. Within an organized, well-balanced combination of scientific and social research and moving personal stories, Dusenbery makes a convincing case for the need for drastic industry reform and clinical refinement. She also addresses larger issues of gender equality and how to confront a culture of sexism and rampant sexual harassment against women. A final clipped section on solutions, unfortunately, feels insufficient and begs for pages of elaboration.
An intensive, timely spotlight on the gender disparities within the modern health care system that falls short on solutions.
Source Citation (MLA 8th Edition)
"Dusenbery, Maya: DOING HARM." Kirkus Reviews, 15 Jan. 2018. Book Review Index Plus,
http://link.galegroup.com/apps/doc/A522642883/GPS?u=schlager&sid=GPS&
3 of 6 6/3/18, 8:53 PM

http://go.galegroup.com/ps/marklist.do?actionCmd=GET_MA...
xid=86c469f2. Accessed 3 June 2018. Gale Document Number: GALE|A522642883

QUOTED: "a canny and candid analysis."
"Dusenbery's excellent book makes the sexism plaguing women's health care hard to ignore."

4 of 6 6/3/18, 8:53 PM

http://go.galegroup.com/ps/marklist.do?actionCmd=GET_MA...
HISTORIES of HYSTERIA
Publishers Weekly.
265.3 (Jan. 15, 2018): p51. From Book Review Index Plus. COPYRIGHT 2018 PWxyz, LLC http://www.publishersweekly.com/
Full Text:
* Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick Maya Dusenbery. HarperOne, $27.99 (400p) ISBN 978-0-06-247080-5
Dusenbery, editor of the website Feministing, presents a canny and candid analysis of how modern medicine treats women in pain. She 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 exposes the biases underlying treatment for established conditions such as heart disease and discusses the "circular logic built into psychogenic theories" that keep conditions exclusively or commonly experienced by women, such as endometriosis and autoimmune diseases labeled as "contested illnesses." Backed by patient stories that range from hopeful to horrifying, Dusenbery illustrates how often modern physicians dismiss women's symptoms as arising from anxiety, depression, and stress. She's fair to doctors, who are "fallible human beings doing a difficult job," and her solution is simple--more funding for research that can find the causes for "medically unexplained" conditions and that can close the knowledge gap about sex and gender differences in disease. But the biggest paradigm shift Dusenbery suggests is to eliminate the trust gap and believe women when they say something's wrong. Dusenbery's excellent book makes the sexism plaguing women's health care hard to ignore. (Mar.)
Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain Abby Norman. Nation, $27 (304p) ISBN 978-1-56858-581-9
5 of 6 6/3/18, 8:53 PM

http://go.galegroup.com/ps/marklist.do?actionCmd=GET_MA...
In this disjointed memoir, science writer Norman intertwines her own experiences with endometriosis, a painful immune-system disease occurring primarily in women, with a larger history of the systematic underprivileging of women's health in Western medicine. The book details Norman's numerous failed attempts to receive adequate treatment for her condition. Despite her clear symptoms and repeated hospitalizations, doctors continuously overlooked or dismissed her disease and reports of pain over the years. In one jaw-dropping example, a doctor proposed that her symptoms were most likely connected to her troubled childhood. Meanwhile, Norman also examines "the discourse of the ills of women," pointing to diagnoses of hysteria in women and the unethical practices of male physicians who sexually exploited women in the 19th century. While the connection between her own story and the larger history is clear, Norman's personal experiences are too often positioned as an afterthought, jammed into the sociological and historical narrative. She breathlessly shifts from discussing eight known cases of endometriosis in men to the story of her first period to a history of women dying during childbirth. Readers looking for a more personal and relatable account (as the title suggests) will be disappointed. (Mar.)
Source Citation (MLA 8th Edition)
"HISTORIES of HYSTERIA." Publishers Weekly, 15 Jan. 2018, p. 51. Book Review Index Plus,
http://link.galegroup.com/apps/doc/A523888927/GPS?u=schlager&sid=GPS& xid=69bd8cfd. Accessed 3 June 2018.
Gale Document Number: GALE|A523888927
6 of 6 6/3/18, 8:53 PM

Springen, Karen. "Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick." Booklist, 15 Feb. 2018, p. 8+. Book Review Index Plus, http://link.galegroup.com/apps/doc/A531171476/GPS?u=schlager&sid=GPS&xid=2526d4e3. Accessed 3 June 2018. "Dusenbery, Maya: DOING HARM." Kirkus Reviews, 15 Jan. 2018. Book Review Index Plus, http://link.galegroup.com/apps/doc/A522642883/GPS?u=schlager&sid=GPS&xid=86c469f2. Accessed 3 June 2018. "HISTORIES of HYSTERIA." Publishers Weekly, 15 Jan. 2018, p. 51. Book Review Index Plus, http://link.galegroup.com/apps/doc/A523888927/GPS?u=schlager&sid=GPS&xid=69bd8cfd. Accessed 3 June 2018.

• The Rumpus
  http://therumpus.net/2018/04/doing-harm-by-maya-dusenbery/
  Word count: 1247

  QUOTED: "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick is a fearless account of the incompetence of our culture when it comes to treating women properly. Dusenbery writes about the institutional systems that are against women—from philosophy to pharmacy to popular culture—in an accessible, engaging, and organized narrative."

  Trust Us When We’re Sick: Maya Dusenbery’s Doing Harm

  Reviewed By Caro Macon

  April 4th, 2018

  “The womb is the origin of all diseases,” reads a Hippocratic medical text from 5th century BC.

  In that time, hysteria, from the Greek word for uterus, was to blame for common inconveniences such a menstrual cramps and dizziness, as well as life-altering misfortunes like the sense of suffocation and paralysis. Even Plato noted the burdensome issues of a wandering womb. He said if a restless uterus roves around the body, “prompt marriage is a recommended cure.” Otherwise, a womb that “remains barren too long after puberty” is sure to cause trouble.

  While these early examples of mistrust towards women’s medical concerns may seem archaic, that’s all they are: early examples. Author Maya Dusenbery, executive editor of Feministing, brings forth a slew of modern-day proof that suspicion of women by scientists and medical practitioners is still alive. And though today’s sexist diagnoses may not be as outright as the concept of hysteria, misdiagnoses are prominent as ever, diluting the life-ruining effects of chronic pain and fatigue, autoimmune disorders, fibromyalgia, and endometriosis, just to name a few. Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick is a fearless account of the incompetence of our culture when it comes to treating women properly. Dusenbery writes about the institutional systems that are against women—from philosophy to pharmacy to popular culture—in an accessible, engaging, and organized narrative.

  Dusenbery, diagnosed in her twenties with rheumatoid arthritis, is thankful for the relative ease of her diagnosis. Women all around her have struggled with similar symptoms for years, making phone calls and car trips to different doctors who will not take them seriously. In several moments during her book, women give testimonies that begin with severe symptoms of pain and end without an answer. These women are called dramatic, challenging, or panicked, and are written off as having anxiety or menstrual problems. One woman, a Harvard PhD candidate, recounts a ten-day fever, followed by a serious bout of dizziness. Doctors dismiss her as being dehydrated. She begins to bring her fiancé with her to doctor’s appointments, saying, “I felt like if I had a man in the room with me… that somehow I would be treated better. And I was.”

  Doing Harm is partly a history book, partly a psychological study, partly a testimonial, and fully a modern day resource for women-centric medical topics. Supported by a lengthy index of terms as well as over fifty pages of notes, Dusenbery’s book is generous with information and context. And while of course the narrative is shaped around an argument, aiming to tell “the truth about how bad medicine and lazy science leave women dismissed, misdiagnosed, and sick,” Doing Harm does the work to show the systematic issues of sexist medicine. (And in doing so, points out the bad and the lazy, too.)

  In the 1980s, French historian Etienne Trillat wrote, “Hysteria is dead, that is certain. It has taken its secrets with it to the grave.” The idea that the womb is a beholder of secrets continues to complicate society, both in and out of the medical industry. Dusenbery writes:

  Women are still interrupted more in professional settings. They’re still quoted less as experts by the media. And forget the authority to speak about the world; some of the most urgent feminist battles have been over women’s ability to speak the conditions of their own lives.

  So if the world cannot trust what women say about their own selves, how can the health industry accommodate what women need? To respond to Trillat, hysteria never “died,” but its alleged symptoms are now diagnosed differently. Where there was once mystery about the wandering womb, now there is the claim that depression and panic attacks are to blame for chronic pain. And in the case of actual depression and panic attacks, menstrual imbalances are to blame.

  Dusenbery offers a great example of how the health industry benefits men over women through its treatment of heart disease. She describes an event in 1964, when the American Heart Association held a conference called “Hearts and Husbands: The First Women’s Conference on Coronary Heart Disease.” Ten thousand women gathered and discussed how to prevent their husbands from developing heart disease, and how to care for husbands who had it. Heart disease was known as a “man’s disease” beginning in the 1950s, when cardiovascular death spiked for middle-aged men. Because of this, diagnostic strategies aimed to prevent them from coronary complications.

  Women were left out of the equation, and the rate of coronary complications in women continued to rise—especially for women post-menopause. It was almost thirty years after the “Hearts and Husbands” conference that the AHA finally held a conference about heart disease in women. Dusenbery notes that women are at a lower risk for coronary artery disease than men, but “they tend to have worse outcomes when they do get it: twenty-six percent of women versus nineteen percent of men die within the first year after a heart attack.” The systems created for men by men are not sufficient in caring for women. Different bodies and chemical makeups, of course, require different treatments.

  The treatment of heart disease is just one of many distressing inadequacies in women’s health issues. Dusenbery notes the impossible: becoming adequate, when the industry continues to be occupied and run by men. Men who do not and cannot fully understand women’s health. For some women, the reality is even bleaker. Dusenbery describes the struggle for women of color to be treated fairly within the context of their symptoms. One particularly perturbing study samples over two hundred medical students, all who were given misinformation about the way a person’s race affects how they feel pain and respond to medicine. The ingrained misunderstanding and mistreatment of women of color, especially of black women, in our health practices happens today—the study is from 2016. Also caught in this malpractice are low-income women, dismissed by many as “chronic complainers,” when some spend years misdiagnosed and incorrectly medicated.

  Doing Harm dives into these disturbing truths, from women being sedated as a quick fix to being sent home mid-heart attack. Dusenbery describes the ease of finding a veterinarian versus the difficulty in finding a gynecologist. The difficulty of acquiring codeine versus the ease of obtaining acetaminophen. But among all the scientific evidence in Dusenbery’s incredible first book, the strongest statements come from women. About their lives, their symptoms, and their pain. “Trust us,” is the refrain. “Trust us when we say we’re sick.”

  Caro Macon is a Dallas-born writer in Chicago. She is currently a Tutterow Playwriting Fellow at Chicago Dramatists. She posts news about her plays, poems, and all-elses on www.caromacon.com. More from this author

• NPR
  https://www.npr.org/sections/health-shots/2018/03/27/597159133/how-bad-medicine-dismisses-and-misdiagnoses-womens-symptoms
  Word count: 1383

  QUOTED: "Conditions like autoimmune diseases that really are marked by these subjective symptoms of pain and fatigue, I think, are very easy to dismiss in women. ... Even though we do know about autoimmune diseases, during that diagnostic delay, women are often told: 'You're just stressed. You're tired.' And [they] have a really hard time convincing doctors that this fatigue is abnormal."

  How 'Bad Medicine' Dismisses And Misdiagnoses Women's Symptoms
  19:19

  Download

  Transcript

  March 27, 201812:15 PM ET
  Heard on Fresh Air
  Terry Gross square 2017

  Terry Gross

  Fresh Air

  The author of a new book, Doing Harm, argues that a pattern of gender bias in medicine means women's pain may be going undiagnosed.
  PhotoAlto/Michele Constantini/Getty Images

  When journalist Maya Dusenbery was in her 20s, she started experiencing progressive pain in her joints, which she learned was caused by rheumatoid arthritis.

  As she began to research her own condition, Dusenbery realized how lucky she was to have been diagnosed relatively easily. Other women with similar symptoms, she says, "experienced very long diagnostic delays and felt ... that their symptoms were not taken seriously."

  Dusenbery says these experiences fit into a larger pattern of gender bias in medicine. Her new book, Doing Harm, makes the case that women's symptoms are often dismissed and misdiagnosed — in part because of what she calls the "systemic and unconscious bias that's rooted ... in what doctors, regardless of their own gender, are learning in medical schools."
  Answering Your Questions: Health 101 For Grown Women
  Shots - Health News
  Answering Your Questions: Health 101 For Grown Women

  "I definitely believe that the fact that medicine has been historically and continues to be mainly run by men has been a source of these problems," she says. "The medical knowledge that we have is just skewed towards knowing more about men's bodies and the conditions that disproportionately affect them."

  Dusenbery is also the executive editor of Feministing, a website of writing by young feminists about social, cultural and political issues.
  Interview Highlights
  Doing Harm
  Doing Harm

  The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick

  by Maya Dusenbery

  Hardcover, 390 pages
  purchase

  On how women have been left out of drug trials and medical observational studies

  There was a lot of concern about including women in drug trials, specifically because of concerns about affecting their hypothetical fetuses. So in the '70s the FDA had a policy of prohibiting any woman of childbearing age from participating in early-stage drug trials. ...

  But we also see that at that time, women were also excluded from studies that were just observational studies — not just drug trials. In the '90s, when there were congressional hearings about this problem, the public learned that women had been left out of things like a big observational study looking at normal human aging that was ongoing for 20 years. It started in the '50s, and for the first 20 years women had been left out of that.

  On women's recent inclusion in National Institutes of Health studies

  [In] 1993, Congress passed a law saying that women need to be included in NIH-funded clinical research. And in the aggregate, women do make up a majority of subjects in NIH research. However, we still don't know that women are necessarily adequately represented in all areas of research, because the NIH looks at the aggregate numbers, and the outside analyses that have been done show that women are still a little bit underrepresented.
  Clinical Trials Still Don't Reflect The Diversity Of America
  Shots - Health News
  Clinical Trials Still Don't Reflect The Diversity Of America

  More importantly, even though women are usually included in most studies today, it's still not the norm to really analyze results by gender to actually see if there are differences between men and women. So experts have described this to me as an "add women and stir" approach. Women are included, but we're still not getting the knowledge we need about ways that their symptoms or responses to treatment might differ from men.

  On why some medicine affects men and women differently — and how that results in women receiving excessive doses of most drugs

  There are a lot of factors that go into these recognized sex differences in drug metabolism and response. ... Percentage of body fat affects it. Hormones, different levels of enzymes — all of these things go into it. But really, probably the most straightforward [factor] is that, on average, men have a higher body weight than women. And yet, even that difference is not usually accounted for. We prescribe drugs based on this one-size-fits-all dosage, but that ends up meaning that, on average, women are being overdosed on most drugs.

  On the difference between how men and women experience heart disease
  Hidden Heart Disease Is The Top Health Threat For U.S. Women
  Shots - Health News
  Hidden Heart Disease Is The Top Health Threat For U.S. Women

  Over the last couple of decades, there's been a recognition that for the first 35 years we were studying heart disease, we were really mostly studying it in men. And so there's been a concerted effort to go back and compare women's experiences to men's, which has led to the knowledge that women are more likely to have what are considered to be atypical symptoms. [And] the only reason they're considered "atypical" is because the norm has been this male model — so, atypical symptoms, like pain in the neck or shoulder, nausea, fatigue, lightheadedness. ...

  Partly as a result of those differences in symptoms — which are still not always recognized by health care providers — women (especially younger women) are more likely to be turned away when they're having a heart attack, sent home. One study found it was younger women — so women under 55 — were seven times more likely than the average patient to be sent home mid-heart attack. ... Even if they're not sent home, you see longer delays [for women] to getting [electrocardiograms] and other diagnostic testing or interventions in the ER setting.

  On how the subjective symptom of fatigue is dismissed in women

  One of the most common [symptoms] that really is common across ... [the autoimmune diseases] is fatigue — a really deep, deep fatigue that isn't just being sleep-deprived from staying up too late. That fatigue, comparable to pain, is this very subjective symptom that's hard to communicate to other people. And I think that women are up against this real distrust of their own reports of their symptoms.
  Annals Of The Obvious: Women Way More Tired Than Men
  Shots - Health News
  Annals Of The Obvious: Women Way More Tired Than Men

  So conditions like autoimmune diseases that really are marked by these subjective symptoms of pain and fatigue, I think, are very easy to dismiss in women. ... Even though we do know about autoimmune diseases, during that diagnostic delay, women are often told, "You're just stressed. You're tired." And [they] have a really hard time convincing doctors that this fatigue is abnormal.

  On some female patients taking a male relative or spouse with them to doctors' appointments to vouch for them

  I found this to be one of the most disturbing things that I found in my research: how many women reported that as they were fighting to get their symptoms taken seriously, [they] just sort of sensed that what they really needed was somebody to testify to their symptoms, to testify to their sanity, and felt that bringing a partner or a father or even a son would be helpful. And then [they] found that it was [helpful], that they were treated differently when there was that man in the room who was corroborating their reports.

  Heidi Saman and Seth Kelley produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Scott Hensley adapted it for the Web.

• My Heart Sisters
  https://myheartsisters.org/2018/03/11/maya-dusenbery-doing-harm/
  Word count: 1936

  “Doing Harm”: Enter to win Maya Dusenbery’s new book
  11 Mar

  by Carolyn Thomas ♥ @HeartSisters ♥ March 11, 2018

  Author Maya Dusenbery interviewed me while I was neck-deep in final copy edits of my book, A Woman’s Guide to Living with Heart Disease. She wanted to talk about why women heart patients are more likely to be under-diagnosed than men, and then – worse! – more likely to be under-treated even when appropriately diagnosed. Maya was writing her own book at the time, and it’s finally out this week. Its pithy title sums up the focus pretty succinctly: Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. Here’s a 10-word summary of her book:

  My own review of Dusenbery’s book starts with this warning to my heart sisters: “Do NOT start reading Doing Harm unless you have first taken your blood pressure meds!”

  I offer this cautionary advice because, although I’ve been writing my Heart Sisters blog posts (here, here and here, for example) about the well-reported cardiology gender gap in women’s heart disease, everything I read in Doing Harm – across the board throughout almost every medical specialty including heart disease – made me want to go have a wee lie-down to recover.

  Dusenbery cites credible research like that of Dr. Alyson McGregor, an associate professor of emergency medicine and director of the Division of Sex and Gender in Emergency Medicine at the Warren Alpert Medical School of Brown University, and co-author of the medical textbook, Sex and Gender in Acute Care Medicine, who told her:

  “It’s amazing and really alarming to see that cardiac arrest, stroke, sepsis—in almost all of these conditions, women receive less intense care.”

  Indeed, when you read Dusenbery’s broad coverage of modern medicine’s view of women’s health issues overall – no matter the diagnosis – it’s likely you will feel even worse than you do now when you read something like this (from the section of Doing Harm called “The Disorders Formerly Known as Hysteria):

  “Chronic illness, with its invisible symptoms of fatigue and pain, is largely the burden of women. And it’s worth considering to what extent its relative neglect by the medical system is because it mostly affects women, whose complaints are so often heard not as a roar but as a whine.

  “Are women’s complaints so often dismissed because doctors simply don’t know enough about their bodies, their symptoms, and the diseases that disproportionately affect them?

  “Or are women’s complaints so often dismissed because doctors hold an unconscious stereotype that women are unreliable reporters of their symptoms?”‘

  NOTE from CAROLYN: If you’re already intrigued, you can enter to WIN THIS BOOK from Harper-Collins! Contest winner will be notified on April 1, 2018.

  Drum roll please!
  The official WINNER of our “Doing Harm” BOOK CONTEST has now been drawn. Congratulations to SUNNY! – and thanks to all of my readers who entered and shared such heartwarming words along with your entries! ♥
  Here’s an example of what Dusenbery says about the pervasive effects on women if our distressing symptoms are not taken seriously:
  .
  “(Women) often internalize the experience of being dismissed by doctors. Even as so-called empowered, highly educated, and privileged patients, there’s still a lot of deference given to medical professionals and physicians. It’s hard to push back when an expert is saying, ‘Nothing is wrong’.”
  .
  Not surprisingly, Dusenbery’s book includes several pages exploring women’s heart disease specifically. Here, for example, is a disturbing bit of “awareness” history from the American Heart Association (AHA):
  .
  “In 1964, the AHA held its first official conference on women and heart disease.
  .
  “Advertised ‘for women only’, it was called Hearts and Husbands: The First Women’s Conference on Coronary Heart Disease.
  .
  “Ten thousand women gathered to get tips on how to keep their husbands from developing heart disease and how to care for them if they did. It would be another 25 years before the AHA held a conference that was actually about heart disease in women.
  .
  “Heart disease had become so thoroughly imagined as a ‘man’s disease’ in the middle of the twentieth century that, back in 1964, nobody really batted an eye when that first conference geared toward women was all about preventing their husbands from getting it.
  .
  “In 2016, the association released its first official scientific statement on the topic; over 50 years after that first conference, it declared that, despite some progress over the last two decades, ‘heart disease remains understudied, underdiagnosed, and undertreated in women.’
  .
  “And according to a 2017 survey, only 22 percent of primary care physicians and 42 percent of cardiologists said they felt well prepared to assess women’s cardiovascular risk.”
  .
  “You could be forgiven for thinking that heart disease is rare in women.
  .
  “In fact, cardiovascular disease, which along with coronary artery disease – the cause of most heart attacks – includes conditions like stroke, heart failure, arrhythmias, and heart valve problems, has been the leading cause of death for women for over a century. About one in three deaths among women each year is from heart-related causes, significantly more than from all kinds of cancer combined.”
  .
  Dusenbery offers a comprehensive section on the difference between the textbook Hollywood Heart Attack experienced (and thus studied) mostly in men, compared to women’s experience of non-obstructive heart disease (like the coronary microvascular disease that I live with, diagnosed months after surviving my own ‘widow maker’ heart attack):
  .
  “In 1996, the National Heart, Lung, and Blood Institute launched the Women’s Ischemia Syndrome Evaluation (WISE) study, a groundbreaking research project to correct the decades-long focus on men’s heart disease. Indeed, while most people who have a heart attack have obstructive coronary artery disease (CAD), a minority of them – more of them women – don’t.”
  .
  This book explores the ironic reality that, while we may now have more knowledge about sex/gender differences in heart disease than perhaps any other area of medicine, there is also now “a wealth of research documenting the gender disparities that stubbornly persist in diagnosing, preventing, and treating it in women.”
  .
  As cardiologist Dr. C. Noel Bairey Merz, director of the Barbra Streisand Women’s Heart Center at the Cedars-Sinai Heart Institute, observed:
  .

  .“The diagnostic and therapeutic strategies which had been developed in men, by men, for men for the last 50 years weren’t working so well for women.“We’ve been working on (female-pattern heart disease) for 15 years, and we’ve been working on male-pattern disease for 50 years.
  “So we’re 35 years behind.'”
  .
  As you read that, you might be wondering how this cardiology gender gap could possibly still be happening in women?
  .
  The reality is that when medical conditions like heart disease are diagnosed and treated based on decades of clinical research focused mostly on white, middle-aged, male subjects (yes, including even the use of male laboratory animals in research!), it’s hardly surprising that patients who are not males may still be missing out. Dusenbery quotes Dr. McGregor on this reality, who says:
  .
  “When you come to the emergency department with chest pain, all of the protocols that we undergo – what happens to you, what tests we do, whether you get admitted, whether you get further testing, what medications you’re on – they’re all designed based upon a male pattern of heart disease.”
  .
  Dusenbery also discusses the myth that “younger women don’t get heart disease”, and points to the danger of what Dr. Katarina Hamberg of Sweden’s Umeå University has called a “knowledge-mediated bias.”
  .

  “While an awareness that men or women have, on average, greater or lesser risks of certain diseases is important and useful up to a point, this awareness can lead to diseases becoming so stereotyped as a ‘man’s disease’ or a ‘woman’s disease’ that doctors are blinded to the individual in front of them – to the extent that the stereotype actually becomes self-fulfilling: knowing a condition is more common in one gender tends to result in its under-diagnosis in the other gender.”

  Dusenbery asks – and answers – this question about the reasons for such blindness:

  “Is it a lack of knowledge or a lack of trust?

  “It seems to be both. The knowledge gap and the trust gap are so tightly interwoven at this point that they could be thought of as two sides of the same coin. Women’s symptoms are not taken seriously because medicine doesn’t know as much about their bodies and health problems. And medicine doesn’t know as much about their bodies and health problems because it doesn’t take their symptoms seriously.”

  So what can we do to improve diagnostic tools, treatments and support for women’s healthcare? Dusenbery suggests:

  “It is the funders, scientific journal editors, and researchers at all levels of biomedical research who need to help build a consensus within the research community that analyzing study results to detect potential sex/gender differences is just good science.

  “And integrating the emerging knowledge of those differences into medical school curricula is a challenging task that requires the will of those within medicine. The same goes for reforms to give medical students more education about the implicit biases that can a ect them and to ensure that doctors receive more sorely needed feedback on their diagnostic errors.”

  As Maya Dusenbery told a UC Berkeley Greater Good interviewer:

  “I want to make clear that it shouldn’t be on individual women to have to become super advocates for themselves and super educated and learn everything in order to get proper medical care. We should be able to rely on the medical system. I hope patient advocacy can help birth changes, but that people within medicine will really take on this problem.

  “They’re the ones who we need to fix it.”

  ♥

  See also:

  A Woman’s Guide to Living with Heart Disease (my blog-turned-book, published by Johns Hopkins University Press, November 2017)
  Same Heart Attack, Same Misdiagnosis – But one Big Difference
  Misdiagnosis: is it What Doctors Think, or HOW They Think?
  When Your “Significant EKG Changes” are Missed
  Yentl Syndrome: Cardiology’s Gender Gap is Alive and Well
  How Does It Really Feel to Have a Heart Attack? Women Survivors Tell Their Stories
  Diagnosis – and Misdiagnosis – of Women’s Heart Disease
  14 Reasons To Be Glad You’re A Man When You’re Having a Heart Attack
  His and Hers Heart Attacks
  What is Causing my Chest Pain?
  When Your Doctor Mislabels You As an “Anxious Female”
  Heart Disease: Not Just A Man’s Disease Anymore
  How Doctors Discovered That Women Have Heart Disease, Too
  Gender Differences in Heart Attack Treatment Contribute To Women’s Higher Death Rates
  How a Woman’s Heart Attack is Different From A Man’s

  Tags: book review Doing Harm, cardiac gender bias, coronary microvascular disease, Dr. Katarina Hamberg, Dr. Noel Bairey Merz, knowledge-mediated bias, Maya Dusenbery, MVD, WISE Study, Women’s Ischemia Syndrome Evaluation study

  Comments

• Rewire News
  https://rewire.news/article/2018/03/07/not-head-new-book-sheds-light-bad-medicine-lazy-science-that-harm-women/
  Word count: 2853

  QUOTED: "It’s a book every person working in health care should read and all those who identify as women should take with them to the doctor. ... Her book is a crucial advocacy tool for individuals as well as those seeking wide-scale change."

  It’s Not All in Your Head: New Book Sheds Light on ‘Bad Medicine and Lazy Science’ Harming Women

  Mar 7, 2018, 10:58am Katie Klabusich

  In Doing Harm, Maya Dusenbery pulls back the curtain on the history and current state of the medical profession to explain why women with chronic illness are not receiving the care they need.
  [Photo: Cover of the book
  Dusenbery urges us to make as much noise as possible about the myriad inequities in the system. She also makes suggestions that could change the future of care for those with the most often missed and misdiagnosed illness.
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  Religious imposition laws are designed to shield private individuals and businesses from complying with nondiscrimination laws based on a religious objection to that service.

  Any woman who has been to the doctor for symptoms she couldn’t source, or pain she couldn’t immediately describe with the right combination of calm confidence and urgent concern, has likely wondered if her experience struggling to be taken seriously in a medical setting is typical. We second-guess ourselves, fretting over whether we really need to go to the emergency room or ask our primary care physicians for specialist referrals.

  We can feel isolated—until we start speaking to other patients. Quickly, it becomes clear that the medical system in all its patriarchal glory has commodified women-identified patients without catering to our basic needs for validation and care.

  In her new book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, out this week, Feministing Editorial Director Maya Dusenbery pulls back the curtain on the history and current state of the medical profession to explain why women with chronic illnesses are not receiving the care they need. It’s a book every person working in health care should read and all those who identify as women should take with them to the doctor. As Dusenbery writes, “the problems explored in this book don’t solely affect cis women. All women—cis or trans—are affected.” Therefore, we must be our own best advocates in this imperfect (at best) system. Her book is a crucial advocacy tool for individuals as well as those seeking wide-scale change.

  “I hope that this book helps women who’ve felt dismissed or unheard … see that their experiences aren’t just the result of bad luck or their own failings, but instead that they reflect deeper, systemic problems in the medical system,” Dusenbery writes.
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  Dusenbery opens with her story of being diagnosed with rheumatoid arthritis (RA)—a chronic, painful autoimmune disease—at the age of 27. She quickly discovered that 50 million Americans suffer from autoimmune diseases, the majority of them women. While her path to a diagnosis was relatively smooth, it takes an average of four years and four doctors to fight through the label of “chronic complainer” for most patients with a rare illness—often longer for low-income patients and women of color. Once she realized just how uphill the battle for competent care remains, she set out to determine why women-identified patients are so likely to be dismissed, even when presenting with something as severe as stroke or heart attack symptoms.

  What she found blew my mind—and health care is my beat. As a 38-year-old with multiple chronic illnesses, I was ready to simmer with outrage and sigh with appreciation for her work throughout all 400 pages. I wasn’t, however, prepared to be shocked at the ongoing blatant disdain for effective research standards and systemic problems in medical school education, which spits out doctors trained to compare every patient to a white, middle-class, healthy man. These attitudes took root, Dusenbery writes, as men decided during the Industrial Revolution that they would drag healing into the marketplace—which required yanking it away from women.

  “In women’s hands, healing was not a profession, but a ‘neighborly service.’ By the late eighteenth century, though, a new class of professionals, ‘regular’ doctors, was seeking to turn healing into a commodity that could be bought and sold,” writes Dusenbery.

  Health care as a money-making venture: What could go wrong?

  The misogyny underlying the early days of “regular medicine” led to a significant gender gap among medical professionals that persists today. This gap exists from classrooms to labs to peer-reviewed journals:

  In 2014, only 21 percent of full professors, 15 percent of department chairs, and 16 percent of deans at American medical schools were women … Only about 30 percent of researchers receiving NIH [National Institutes of Health] funding are women … [And] women make up just 17.5 percent of all editorial-board members of sixty major medical journals.

  When the gatekeepers are men, it’s no wonder that diseases primarily affecting women are woefully underfunded and under-researched.

  They’re also under-identified by doctors. Dusenbery does a commendable job tracing conditions like endometriosis and multiple sclerosis (MS) back through history to the days when any ill or misbehaving woman’s troubles or hysteria would be traced to their “wandering uterus” or troublesome ovaries. She quotes researcher Colin L. Talley explaining that the surge in “new” MS diagnoses starting mid-20th century was due to a shift away from those long outdated theories: “As hysteria gradually declined as a neurological diagnosis … physicians interpreted increasing numbers of these patients, especially women, as having MS.”

  More than 200 years later, the discrimination deeply embedded in the health-care system has led to an intense “knowledge gap” that persists all the way down to a cellular level. “[I]nvestigators,” she writes, “overwhelmingly use male cells and animals in preclinical studies.” Not only were adult women almost completely left out of legitimate, consensual research and development until the late 1990s, but researchers largely don’t bother to use female mice because their hormone fluctuations can make results inconsistent.

  While the National Institutes of Health didn’t require gendered analysis of clinic studies during that period, a handful of examples outline the gratuitous level of bias during the mid-to-late 20th century:

  “The Baltimore Longitudinal Study, which began in 1958 and purported to explore ‘normal human aging,’ didn’t enroll any women for the first 20 years it ran.”
  “The Physicians’ Health Study, which had recently concluded that taking a daily aspirin may reduce the risk of heart disease … [was] conducted on 22,071 men and zero women.”
  “An NIH-supported pilot study from Rockefeller University that looked at how obesity affected breast and uterine cancer didn’t enroll a single woman.”
  “Twelve percent of [medical] schools reported [in the mid ’90s] that they had a curriculum on women’s health—which often just meant a seminar on a single topic like domestic violence.”

  In the early 1990s when Congress was looking into the shoddy state of affairs for the women of this country, it discovered that “there were only three gynecologists on staff at the NIH, compared to thirty-nine veterinarians.” In 1993, a federal mandate required women to be included in drug trial studies. This was hardly a complete solution, as it didn’t require researchers to analyze results by gender and drugs are only one segment of medical research.

  As Dusenbery writes, adding the “trust gap” on top of the knowledge gap creates a mutually reinforcing cycle: “Women’s symptoms are not taken seriously because medicine doesn’t know as much about their bodies and health problems. And medicine doesn’t know as much about their bodies and health problems because it doesn’t take their symptoms seriously.”

  Women of color are even more likely than white women to have their symptoms downplayed and their experiences disregarded—a particularly heinous truth considering the history of the modern era of medicine. Dusenbery quotes authors Barbara Ehrenreich and Deirdre English’s seminal work For Her Own Good: Two Centuries of the Experts Advice to Women, which describes the 18th and 19th century landscape of heroic medicine: “Though middle-class women suffered most from the doctors’ actual practice, it was poor and black women who had suffered through the brutal period of experimentation.”

  Dusenbery goes on to describe the methodology of the “father of modern gynecology,” Dr. J. Marion Sims, who practiced surgical procedures on enslaved women he purchased for experimentation.

  As personal stories like those of Serena Williams show, we as a culture and medicine as a discipline continue to disregard the experiences of women of color. Black patients are 22 percent less likely to get pain medication after traumatic injuries and surgeries—a statistic that highlights both the inaccurate bias about opioid addiction and the systemic disregard of Black patients’ pain. Black women are regularly on the receiving end of compounded bias, which Dusenbery explores through patient experiences like “Jackie’s.” She had been sick and frustrated for ten years, struggling to be taken seriously as she suffered.

  “Midway through graduate school, Jackie finally caught a break. She had been sick for months, burning up with a fever that the doctors, despite soaking her in antibiotics, could not break. ‘A primary care doctor—a woman of color—believed me, and she collected all of my medical records and literally took them home with her and started trying to piece them together like it was a puzzle,'” writes Dusenbery.

  Her new doctor suspected correctly that Jackie might have lupus—a disease three times more likely to affect Black women. Her frustration didn’t end with the diagnosis. Lupus patients are up to 50 times more likely to have a heart attack than the general population, so when she experiences symptoms of pericarditis (inflammation of the sack around the heart) she goes straight to the ER. Routinely, staff refuse to take her seriously and send her home. Eventually, she started frustratedly employing a tactic that shouldn’t be necessary:

  During one of her most recent hospital admissions, with documented inflammation in her stomach, she was supposed to be getting pain management every couple of hours, but the nurse refused to give it to her. Fed up, she angrily demanded care from the doctor and happened to mention that she was a professor. ‘Suddenly it’s like this light goes off … They assumed I was homeless or extremely impoverished and coming off the street just to get a meal and some drugs. I wasn’t a human being worth caring for until I said I had a Ph.D. Then suddenly I’m getting pain management, I’m going to radiology, I’m getting my CAT scan.’ Jackie says that even though it’s antithetical to the politics that she believes in to make a distinction between herself and a poor black woman, she has acquiesced to her parents’ insistence that she start playing her Ph.D. card whenever she seeks medical care. Now she adds that to the list of things she does before going to the hospital: putting Dr. on all her paperwork.

  Dusenbery describes similar stories from patients who discovered bringing their husband, boyfriend, or father with them to appointments resulted in their symptoms being taken more seriously. As much as these patients find it frustrating and infantilizing to need a male presence in the exam room, they are doing whatever is necessary to get help in a system with terrifyingly little accountability.

  The medical profession encourages individual doctors to see themselves as infallible. After all, how many of us have gone back to a physician (or physicians) who didn’t believe us after finally getting an accurate diagnosis? There currently is little to no accountability for misdiagnoses despite medical error being the third leading cause of death in the United States.

  As someone who was repeatedly misdiagnosed in my teens and 20s, I certainly know I do not have the energy and money to go find them all and force them to reckon with the harm they’ve done. In this, I’m a fairly typical chronically ill patient: I’m mentally and emotionally fatigued, low-income, and physically exhausted just trying to do life. I rely on the medical profession to handle their business—what choice do I have?

  Dusenbery urges us to make as much noise as possible about the myriad inequities in the system. She also makes suggestions that could change the future of care for those with the most often missed and misdiagnosed illness.

  One possible solution is to establish “autoimmune centers, like heart and cancer centers, where patients with a suspected autoimmune disease could be diagnosed by an expert.” Currently, the quarter of American women suffering from an autoimmune disease don’t have an immediately obvious specialist to see; there simply aren’t RA and MS doctors like there are oncologists for cancer.

  We also have to do something about diagnosing the rare diseases affecting 30 million people in the United States. Unsurprisingly, there’s an additional diagnostic delay for women with a rare illness beyond the average four primary care doctors and four specialists (typically over the course of seven years). And that’s just to get a possible name for what they might be suffering from. “Given women’s vulnerability to a psychogenic misdiagnosis [being told it’s ‘all in your head’], it is perhaps not surprising that women reported significantly longer diagnostic delays than men,” writes Dusenbery.

  Despite modest changes being imposed here and there, Doing Harm methodically and thoroughly lays out an indictment of the medical systems that still largely discount the experiences of women both individually and collectively. And it truly is all women. “Our intersecting identities may make the particular stereotypes that hurt us different—in some cases, even diametrically opposed,” she writes, “and yet somehow we so often end up in a similar place: fighting to have our reports of our systems trusted and taken seriously …. All women, then, have a vested interest in seeing medicine finally explain the many ‘medically unexplained’ syndromes that disproportionately affect women.”

  Dusenbery calls for “allies within medicine who have an alchemist’s power to turn patient anecdotes into scientific research” and more exploration and critical analysis of women’s bodies—the full spectrum of those who identify as women.

  Further, we all must demand our physicians and other caregivers be cognizant of gender disparities. When handed a new prescription, ask whether or not it has been tested on women to determine dosage differences and possible side effects. And, importantly, know that when you are feeling dismissed in the exam room you are not alone; you are on that table with literally tens of millions of women who are with you as you challenge the sexism you’re facing.

  Ultimately, Doing Harm demands nothing short of system-wide change, starting with a call to providers at the most basic level: “It is up to the medical community to earn back women’s trust. And some of the changes needed are big systemic ones, ones that are difficult to implement and will no doubt take time, but there is one that is simple and can be accomplished tomorrow: Listen to women. Trust us when we say we’re sick. Start there, and you’ll find we have a lot of knowledge to share.”

  Evidence-based journalism is the foundation of democracy. Rewire.News, is devoted to evidence-based reporting on reproductive and sexual health, rights and justice and the intersections of race, environmental, immigration, and economic justice.

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  Topics and Tags: Book Review, Chronic Pain, Health Systems, Human Rights, Race, Science, Sexism, Women's Health, Women's Health Care, Women's rights

• Mother Jones
  https://www.motherjones.com/politics/2018/03/you-need-to-calm-down-and-other-degrading-b-s-women-hear-from-doctors/
  Word count: 3155

  QUOTED: "I decided to focus on autoimmune diseases because they are so common. Also, I think a lot of the problems women face getting diagnosed for [autoimmune diseases] are applicable to other chronic illnesses. Unlike an acute thing like a heart attack, there are long diagnostic delays for things that are not life-threatening that can go on, and on, and on."

  “You Need to Calm Down” and Other Degrading B.S. Women Hear from Doctors
  A new book exposes how women still can’t get equal medical care.

  Kate HarloeMar. 30, 2018 6:00 AM

  Mother Jones illustration
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  Subscribe to our free newsletters.

  In the early 1960s, researchers noticed that women seemed to have lower rates of heart disease than men—but only until menopause, when women’s estrogen levels dropped. At that point, their levels were similar. To get to the bottom of the discrepancy, they set up the first-ever study to test hormone supplements as a preventative treatment for heart disease. In the study, researchers enrolled 8,341 men—and exactly zero women. It would be some 30 years before a comparable clinical study would look at how hormone therapy impacts women, in women.

  Maya Dusenbery’s new book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, is a seemingly endless catalog of examples like these, which, taken together, lay out the myriad ways in which sexism affects the medical care that women receive. It’s full of horrifying personal stories as well: Consider Maggie, who, as a senior in college, spent 48 hours trying to convince doctors that she was in excruciating pain, barely able to breathe. Her vitals were normal, so a doctor told her, “You need to calm down. I think you’re having a panic attack.” Over two days in and out of the ER, doctors blamed her pain on her being a “stressed-out student,” a “dramatic personality,” and “a drug-seeker looking for prescription painkillers.” By the end of those two days, doctors realized that Maggie was not suffering from anxiety. One of her organs had ruptured, and she was going into septic shock.

  The idea that sexism influences the medical care women receive is not new, nor is it that surprising. But Dusenbery’s book goes beyond observation and, through hundreds of studies and an immense amount of empirical research, explains exactly how the problem is systemic. Today, Dusenbery (who previously worked for Mother Jones as a fellow) explains, certain diseases have been studied mostly in men, and “medically unexplained conditions” are often unexplained because they used to be called “hysteria.” Most of all, Dusenbery emphasizes one key, and novel, point: that what she terms the “knowledge gap” and the “trust gap” are mutually reinforcing. “We have been left out of a lot of research,” Dusenbery tells Mother Jones. “That lack of knowledge perpetuates this idea that women are prone to symptoms that have no evident physical cause.”

  Mother Jones recently spoke with Dusenbery about the history of sexism in medicine, how the feminist movement might have failed women’s health, and her personal experience with autoimmune disease.

  Mother Jones: You begin your book with a personal story about your struggle with rheumatoid arthritis, which is an autoimmune disease. Would you mind speaking about your experience receiving that diagnosis and with the disease? Also, how did it lead you to this book?

  Maya Dusenbery: I got diagnosed pretty quickly and easily. I had a textbook case of rheumatoid arthritis, so I was able to diagnose myself pretty easily with Google and get in to see a rheumatologist who confirmed it.

  I found out later that I was really lucky in that regard. Once I got diagnosed, as a researcher, I wanted to learn as much as I could about not just rheumatoid arthritis, but also autoimmune diseases. I started learning how common they are, affecting 50 million people in the United States, and 75 percent of those people are women. And then, as I started learning more about other peoples’ experiences getting diagnosed, I realized that a lot of women have stories of feeling like their symptoms were minimized and brushed off as stress or depression, and they experienced really long diagnostic delays.
  I realized that a lot of women have stories of feeling like their symptoms were minimized and brushed off as stress or depression.

  I was confused about why, if autoimmune diseases are so common, the medical system seemed to be bad at recognizing them and diagnosing them quickly and efficiently.

  That got me interested in looking at this topic more broadly. I am a feminist writer and I have written a lot about reproductive health, so it’s not like I was a stranger to thinking about women’s health. But until that personal experience, I hadn’t looked beyond reproductive health to think more broadly about how sexism was playing out in medical care for women when they’re sick, as opposed to [when they need] routine reproductive health care.

  MJ: When you started zooming out from reproductive health and thinking more broadly about how the medical system treats women, how did you then decide what to focus on?

  MD: That’s a good question. Figuring out how to organize the book was hard. I was hoping to sort of use heart disease as an example of a disease that has been studied largely in men. We had just assumed that we could study men and extrapolate the results to women and not consider the possibility that there may be some sex/gender differences. So the model of the disease that we’ve created—studying men for basically the first 35 years we were looking at it—is a male model. And heart disease is a really clear example of a disease where, once we started doing that research, it turned out, oh yeah, there’s actually a lot of differences [between men and women]. There are differences in symptoms and risk factors. There is a whole kind of female pattern disease that has been not recognized until recently. I was hoping to make the point that that is the case in other diseases too.

  Then, I decided to focus on autoimmune diseases because they are so common. Also, I think a lot of the problems women face getting diagnosed for [autoimmune diseases] are applicable to other chronic illnesses. Unlike an acute thing like a heart attack, there are long diagnostic delays for things that are not life-threatening that can go on, and on, and on.

  MJ: Reading your book, it was remarkable to realize how little research has been done on some of these subjects. What were some of the books that you see as a precursor for yours?

  MD: In some ways I feel like women have been [talking about the trust gap] forever. That has been a complaint since the ’60s and ’70s—it was a major part of feminist critiques of the medical system. Everybody agreed that that was a problem, but maybe it’s been accepted as a problem so much that it’s not seen as a problem. Because it hasn’t become a major part of feminist critiques since.

  Osler’s Web, which is the definitive, early history of chronic fatigue syndrome, is helpful in pulling together all of what was happening in the ’80s and ’90s around the disease. But beyond just chronic fatigue syndrome, I found it to be really eye-opening [in showing how] biomedical science is created by humans. We sort of forget that there are actual people making decisions within institutions that then have these enormous and long-lasting effects on what we know in science. And huge effects on people’s lives. We see science as some thing that happens instead of recognizing that human beings do science, and their biases and their mistakes can have huge ramifications.

  MJ: As someone who doesn’t have a background in science, that was one of the things that I was very struck by: remembering that doctors are human, scientists are human, and they’re making very human decisions all the time.
  We see science as some thing that happens instead of recognizing that human beings do science, and their biases and their mistakes can have huge ramifications.

  MD: Right. And Paula Kamen’s memoir All In My Head also delves a bit into the history of hysteria. She’s one of the only people I came across with some explicit criticism for the feminist movement for not focusing enough on women’s illness. She also offers some insight on why that might be—namely, that second wave feminists fighting to prove that women could compete with men in the workplace and public life were perhaps a bit reluctant to highlight health problems that disproportionately affect women, given that biological difference has always been used to justify women’s inequality.

  And I don’t think we’re actually safely past that history today. As we saw in the coverage of Hillary Clinton’s pneumonia during the campaign, women’s sickness still gets used against them in a way that doesn’t happen as much to men. Recall Trump’s comments about Megyn Kelly being on her period, which invoked this long-standing myth that women’s hormones make them unfit leaders.

  Certainly, compared to early generations, our generation takes for granted that women can do anything men can do, so there’s perhaps less defensiveness. I think it’s also easier today to talk about sex/gender differences in health because we have a more nuanced, complicated understanding of disease—we know that most diseases result from a combination of genetic vulnerabilities and environmental factors. In other words, we know, in a way that we really didn’t a few decades ago, that biology isn’t destiny—that biology is malleable.

  But I do think this has been one of the challenges: the fact that women have been harmed both by medicine treating them as innately different from men—as in the case of women being considered especially prone to psychogenic symptoms or treating their reproductive cycles and transitions as sort of inherently pathological—and from medicine ignoring real sex/gender differences and being blind to women’s unique needs. So we have to walk and chew gum at the same time: being skeptical of medical claims that overstate or essentialize these differences, while calling attention to the ways that differences that in fact really matter to clinical care have been overlooked by taking a one-size-fits-all approach.

  MJ: There are so many unbelievable stories about individual women’s experiences with sexism in this book. How did you start finding these women and gathering these stories?

  MD: I created a Google Doc calling for stories and posted it on Feministing. I also spread it through my personal networks. From that I got almost 200 people.

  The stories that ended up in the book are not even the worst ones. There are lots of stories that I couldn’t include. I hope that people really recognize that these aren’t super rare stories. A lot of the women felt like their stories must be the exception. But when you see in the aggregate how common this actually is, you realize that’s not the case.

  There’s a lot of silence around these experiences that I didn’t fully appreciate. I think that there’s a real tendency to internalize what a medical expert is telling you and to assume that if you’ve had an experience like this, it was because you just weren’t advocating for yourself as well as you could have, or maybe it was just your individual bad luck. There’s a lot of power in women starting to talk with each other about these stories and realizing that it’s not just them. It’s not an individual problem, it’s reflective of larger systemic problems.
  As we saw in the coverage of Hillary Clinton’s pneumonia during the campaign, women’s sickness still gets used against them in a way that doesn’t happen as much to men.

  MJ: Throughout the book, depending on the study or the data that you’re talking about, you’ll mention how things break down for women along racial lines. What did you find about how these experiences differ for women of color?

  MD: In most cases, that intersection of race just makes it even worse for women of color. In particular, the stereotype that patients of color are drug seekers was a really prevalent one. In addition to that, there’s an empathy gap that is in some ways separate from the trust gap that affects all women.

  Most of those who have looked at gender disparities in treatment have concluded that the problem seems to be most pronounced in women’s initial encounters with health care providers—in that time before doctors have figured out the cause of the pain or fatigue or other symptom and are relying on the patient’s report of their symptoms. That’s when the stereotype that women are overly anxious or emotional or exaggerating or prone to hysteria can lead to this distrust in the reliability of their reports. But once there’s objective evidence that something is really wrong, usually the gender gap closes—or at least narrows. It’s not so much about not caring about women’s symptoms but about just not believing they’re as bad as they say.

  But I think medical racism is rooted in a somewhat different problem, or a few different ones, and is more likely to persist past those initial encounters. Patients of color, especially black patients, are under-treated even for post-surgical pain, when obviously there is no uncertainty about there being a real reason for the pain. Experts in racial disparities suggest that there is a real empathy gap at play—an inability to feel moved by, or perhaps even recognize, the suffering of patients of color. And as one of the studies I discussed in the book suggested, for black patients, that may be in part rooted in these really, really old myths about black people having some sort of superhuman invulnerability to pain. Experts also say that patients of color sometimes get under-treated for things like cancer due to an assumption that they either can’t afford or aren’t willing to comply with a more aggressive treatment approach.

  I was interested in exploring the actual treatment and medical knowledge that women receive once they’re in the medical system. [I couldn’t] go into the barriers to just accessing [medical care], which obviously, you can write whole books about that as well. It’s important to recognize that in some ways those barriers to access become more important than these issues, because if you can’t go to the doctor, that’s the biggest problem that you face. If you don’t have health insurance that lets you go to two, three, seven, ten specialists to get the proper diagnosis, then you’re just out of luck.

  MJ: After laying out how sexism affects the medical treatment that women receive, you write a bit in your conclusion about what we can do. Could you speak a little more about that?

  MD: One of the surprising things that I learned was just how hard it is to change medical school curricula and how slow that process is in the best of times, let alone when you’re calling for changes across every clinical area. But there’s a growing recognition that medical education needs to change to incorporate emerging knowledge of sex/gender differences. I think that’s a hopeful sign.
  Experts in racial disparities suggest that there is a real empathy gap at play—an inability to feel moved by, or perhaps even recognize, the suffering of patients of color.

  In the last decade or so, there’s also been more recognition that diagnostic errors are this blind spot. We haven’t been tracking them, but we should be. The fact that doctors don’t get feedback on their diagnostic errors means that [errors] become self-perpetuating. And it’s not about individual arrogance, it’s about that lack of feedback. There’s a lot of potential to get better systems in place if that feedback is happening.

  And of course, there’s a lot more discussion within medicine about implicit bias around race and class and weight. I hope that the book can spark more attention on the work that is already happening, and also help draw connections between these different areas.

  MJ: How can we reach people who may not have access to this information or who may not have the opportunity to read this book?

  MD: The problem is that, probably, only the most privileged women are the people who are going to be reading this book. The solution can’t be an individual one where women are just called upon to be better self-advocates. Because one, that just shouldn’t be a burden on anybody. And two, many women don’t have access to the information, language skills, cultural/social authority, and financial resources it takes to become the super-empowered patient who can self-diagnose and go to a million specialists.

  That creates this system where there’s a real divide between the haves and have-nots. I’ve been very hesitant, in doing these interviews, to give individual advice because I do think that these are systemic problems and they won’t be solved for all women unless the system itself is radically changed.

  This interview has been edited for length and clarity.

  Image credit: Caitlin Nightingale

  Disclosure: Maya Dusenbery worked for Mother Jones as a fellow.
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  Kate Harloe
  Kate Harloe

  Kate Harloe is an editorial fellow at Mother Jones. Reach her at kharloe@motherjones.com.

• Broadly
  https://broadly.vice.com/en_us/article/gy899x/maya-dusenbery-how-doctors-gaslight-women-doubting-their-own-pain
  Word count: 2038

  QUOTED: "I've been a feminist writer for a long time focused a lot on reproductive health issues, but I wasn’t really thinking about how gender bias affects medicine more broadly until I got rheumatoid arthritis a few years ago. For my own sake, I started learning about autoimmune diseases and became interested in the fact that they’re super common among women and not well known in the public or the medical system."
  "I started hearing lots of stories of women about having a hard time getting diagnosed and feeling like their symptoms were being minimized or dismissed by healthcare providers. That was the first inkling that this was a problem pretty broadly that should be explored more than it had been."
  "A lot of that has to do with a real lack of training among doctors about how to diagnose these conditions and also a trust gap where women's symptoms are not often believed and trusted."

  How Doctors Gaslight Women into Doubting Their Own Pain
  Maya Dusenbery’s book, "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick," explains how women’s health issues have historically been dismissed—and what we can do about it now.
  Suzannah Weiss

  Suzannah Weiss
  Mar 6 2018, 2:16pm

  Photo by Sean Locke via Stocksy.

  Of all the ways women are disadvantaged in society, one of the most overlooked yet most fundamental is the way in which women’s physical health is misunderstood and neglected.

  Medical research tends to use male subjects and overlook conditions experienced primarily by women. A 2007 study in the Journal of Women's Health found that just 24 percent of participants in 46 drug trials from 2004 were women. A 2011 study in the same journal found that the median enrollment of women in federally funded 2009 clinical trials in nine medical journals was 37 percent—the same as it had been five years prior. This also applies to animals: An analysis of 2,000 animal studies in Neuroscience & Biobehavioral Reviews found that single-sex neuroscience studies on male animals were 5.5 times as common as those on females. And although 90 percent of women report at least one PMS symptom, five times as many studies have been dedicated to erectile dysfunction, a problem experienced by 19 percent of men, according to a ResearchGate analysis.

  This inequality is the subject of Feministing editor Maya Dusenbery’s first book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick (HarperOne, March 6). Doing Harm illustrates how women’s medical problems have historically been dismissed as either psychosomatic or normal and presents a third possibility: that women indeed are suffering from a disproportionate number of physical health issues—with 12-14 percent worldwide experiencing severe menstrual pain, for example, and 45 percent of American women (compared to 31 percent of men) experiencing chronic pain—but this does not make them normal. Instead, it reflects a startling lack of progress in women’s healthcare.

  Dusenbery traces the dismissal of women’s health issues, especially hard-to-identify ones like chronic pain and interstitial cystitis, back to a history of women being deemed “hysterical” if they complained of an illness that wasn’t immediately visible. The ancient Greeks believed these mysterious symptoms came from a wandering womb, but by the turn of the 20th century, hysteria was seen as a mental disorder, setting the precedent for modern-day women being told their sicknesses are “in their heads.”

  We talked to Dusenbery about why so many women are suffering from neglected and misdiagnosed health problems and what we can do about it.

  This interview has been edited and condensed for clarity.

  BROADLY: What made you want to write about this topic?

  DUSENBERY: I've been a feminist writer for a long time focused a lot on reproductive health issues, but I wasn’t really thinking about how gender bias affects medicine more broadly until I got rheumatoid arthritis a few years ago. For my own sake, I started learning about autoimmune diseases and became interested in the fact that they’re super common among women and not well known in the public or the medical system. I started hearing lots of stories of women about having a hard time getting diagnosed and feeling like their symptoms were being minimized or dismissed by healthcare providers. That was the first inkling that this was a problem pretty broadly that should be explored more than it had been.

  Did you experience this dismissal yourself?

  I had a textbook case of RA [Rheumatoid arthritis] and got diagnosed relatively quickly, so my own experience was fairly good, but I certainly started to hear from friends who were dealing with other, more mysterious, hard-to-diagnose problems. Surveys that have been done looking at the experience of autoimmune patients more broadly show the average is four years, and often patients go to four to five doctors during that time. A lot of that has to do with a real lack of training among doctors about how to diagnose these conditions and also a trust gap where women's symptoms are not often believed and trusted. These kinds of subjective symptoms that autoimmune disease bring—symptoms like pain and dizziness—aren't confirmed by a test, and you have to trust the patient’s testimonial of how they're feeling in their body. Women have to overcome this tendency to question that testimony.

  Where do you think that distrust in women comes from?

  It's related to these gender stereotypes we have about a stoic man who is expected to keep a stiff upper lip when he's in pain and discouraged from admitting vulnerability or weakness, whereas women are stereotyped as more emotional. The way that's played out in medicine is that when men enter the medical system, there's an expectation (consciously or unconsciously) that they're more reluctant to be there in the first place or to be asking for help.

  I also think that it's a little deeper than that. There's this long history of viewing women as prone to hysteria. At this point, the most common term in the medical literature is “medically unexplained symptoms.” That is a deceptively neutral term, but in medicine, it’s often used to imply a psychogenic cause. Medicine's retained this idea that it can blame any symptoms it can’t attribute to a physical disease on a patient’s mind, and it’s persistently insisted that women are especially prone to such symptoms. Hysteria is not something that disappeared.

  You talk about doctors attributing women’s medical problems to depression and anxiety. Are they serving the function that hysteria used to?

  Whenever a woman's describing physical symptoms and a doctor attributes them to depression or anxiety or stress—particularly doctors not trained in mental health—I think that often is being used as a euphemism for what previously would've been called hysteria. A lot of primary care doctors write prescriptions for antidepressants as a way to give some treatment to patients without doing a really thorough investigation to see whether the patient actually has a primary mood disorder or has some other underlying physical disease. Someone should be skeptical if they've been given a diagnosis of depression or anxiety and they're not exhibiting the emotional cognitive symptoms associated with those disorders and haven't had a thorough workup to determine potential underlying causes.

  If we do believe women’s accounts of their own pain, it can seem like being a woman is just a painful experience—but you reject that idea, too. What’s wrong with that explanation?

  When it comes to menstrual pain and other disorders associated with women's cycles, there's not only this tendency to say it's all in your head but this tendency to say it's just normal. That harkens back to this really long history of seeing pain as sort of this unfortunate but normal part of being a woman—that it's part of a woman's destiny to suffer. So when it comes to [failure to diagnose] conditions like endometriosis or vulvodynia, that's a factor that’s been at play.

  That's also a good illustration of how self-perpetuating these things can be. Endometriosis is very common, and yet women often go for a decade before they’re diagnosed, and one of the main symptoms is very, very painful periods. People often complain to doctors about that. When they’re teens, they’re told, “You’re just not used to having your period yet.” How could it possibly be that so many doctors think that it's normal for a period to bring so much pain that it would bring a woman to the ER, cause her to pass out or be demobilized? The reason that's possible is that doctors keep not diagnosing endometriosis, so they have the impression that severe menstrual pain is normal.

  Where does that idea come from, that being a woman means suffering?

  It's also rooted in this history of hysteria. Before Freud, it was understood as a physical disease that was sort of inherent in women. That idea was retained in some ways, but I think it's clearly another way of [medical professionals] letting [themselves] off the hook for not actually doing the scientific research to understand what's going on: “Women are just sickly” or “it’s normal for them to have pain.” Menstruation is this normal biological process. There’s no reason it should cause pain. That doesn’t make any real evolutionary sense. It speaks to the fact that it hasn't been a priority to figure out the many reasons why it might bring pain for some women.

  When I was getting feedback, people were like, “Yeah, but periods are painful.” But I'm saying, should they be? Why do we think that's acceptable?

  Was there anything you found particularly shocking in your research for the book?

  I was surprised to realize just how little feedback doctors receive on their diagnostic errors. There hasn't been much systematic research looking into misdiagnoses and delayed diagnoses. A woman with an autoimmune disease may go to four different doctors, and the doctors who didn’t properly diagnose her may just see her as a stressed woman and don't get the memo down the road when she's properly diagnosed. It becomes a self-perpetuating problem that feeds into the stereotype that women are just stressed-out hypochondriacs.

  Aside from the physical consequences, what are the psychological consequences of women being constantly doubted and questioned?

  Being told that your own knowledge of what's happening in your body is wrong or to not be trusted is a really deeply invalidating thing. It’s this really core part of our experience of the world—our experience of our own bodies—so I think it's just a really audacious form of gaslighting for doctors to tell women that their symptoms are all in their heads. Women understandably find that so invalidating that they might question their own sanity.

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  Do you see this tendency to doubt women come up in other areas?

  The very simple call to listen to women, to believe women—this refrain comes up in a lot of realms. When it comes to abortion access, this is a call to trust that women know when they want to end a pregnancy; they don't need paternalistic anti-choice laws informing them that they're about to end a pregnancy. When it comes to anti-sexual-violence advocacy, that refrain of “believe survivors” speaks to this same thing: Women’s testimony about these issues and the way that sexual violence or harassment affects them should be listened to and trusted. I feel hopeful, especially in this moment, with all the #metoo activism and this feeling right now, that we are starting to listen to women's testimony about their lives. Extending that to medicine would be a great next step.

  Tagged:medicineresearchpainhy

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