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

by Maya Dusenbery

In this shocking, hard-hitting expose in the tradition of Naomi Klein and Barbara Ehrenreich, the editorial director of Feministing.com, reveals how gender bias infects every level of medicine and healthcare today—leading to inadequate, inappropriate, and even dangerous treatment that threatens women’s lives and well-being.

Maya Dusenbery brings together scientific and sociological research, interviews with experts within and outside the medical establishment, and personal stories from regular women to provide the first comprehensive, accessible look at how sexism in medicine harms women today. In addition to offering a clear-eyed explanation of the root causes of this insidious and entrenched bias and laying out its effects, she suggests concrete steps we can take to cure it.

Genres: Nonfiction, Feminism, Science, Health, Medicine, Medical, Womens

400 pages, Hardcover

First published March 6, 2018

About the author

Maya Dusenbery is a writer, editor, and author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

In 2013, Maya became editorial director of the award-winning site Feministing.com, where she has written about a range of feminist topics since 2009. She has also been a fellow at Mother Jones magazine and an online 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 becoming a full-time journalist, Maya 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.

Reviews

[Mickey · Rating 5 out of 5]

I want to take this book to my next doctor's appointment, smack him upside the head with it, and then stand there and read the whole damn thing out loud to him! It was infuriating and maddening to read, but it helped me to feel better that I'm not the only woman who is fighting the medical system for a proper diagnosis and treatment.

[❤️ · Rating 3 out of 5]

I hate to say it, but I found this book pretty repetitive in a lot of spots. Each section, regardless of what part of history or which medical issue was being discussed, felt like I was re-reading entire paragraphs at some point because so much was constantly being reiterated in the same way. Because of that, I also didn't find the writing to be entirely engaging as I expected such a topic to be for me. In fact, it was rather dry. In this case, that doesn't mean I didn't like the book - I thought it was informative and succeeded at tying history into present day medicine for the most part, I just thought it could do with a bit more editing in certain areas.

That said, I've rounded my rating up to 3 from 2.5 stars simply because this topic is so, so important and regardless of writing style, the more effort that's put into bringing women's health and how often our symptoms are overlooked, downplayed or straight up misdiagnosed (and why historically this has been so prevalent) to the forefront, the better.

[Mehrsa · Rating 5 out of 5]

This book is excellent and eye-opening and it made me so mad I wanted to go punch someone. I mean, the fact that even the mice they use to test drugs are male?! WTAF? Every chapter exposes exactly the price that science, civilization, and mostly women have paid for sexism and the distrust of womens pain! I mean--just one example at the end of the book. Doctors called ovarian cancer the silent killer despite the fact that women were complaining of symptoms for years before they were diagnosed! Women died because the symptoms were not taken seriously. Because MEN DON'T GET OVARIAN CANCER! UGH. And the long history of hysteria! Don't even get me started. Just read this book

[Becky · Rating 5 out of 5]

I will admit that when I picked up this book, I assumed that this would be focusing mostly on women's reproductive healthcare, because that's usually what's meant when "women's health" is discussed. As though we are walking wombs and nothing more. I quickly learned that, though the latter statement is often true, this book was NOT simply about that type of healthcare. It's about EVERY SINGLE WAY that women are failed by the medical industry - from men being the standard for medical research and testing and actively excluding women, to the fact that , and the way that our wombs and reproductive potential supersede our personhood in the eyes of the medical and scientific community is only one part of that.

The main thrust of this book is that women are simply not believed as trustworthy reporters of their own health and bodies, and that we cannot do anything to change it. It's a no-win scenario for women.

“Often, women's symptoms are brushed off as the result of depression, anxiety, or the all-purpose favorite: stress. Sometimes, they are attributed to women's normal physiological states and cycles: to menstrual cramps, menopause, or even being a new mom. Sometimes, other aspects of their identity seem to take center stage: fat women report that any ailment is blamed on their weight; trans women find that all their symptoms are attributed to hormone therapy; black women are stereotyped as addicts looking for prescription drugs, their reports of pain doubted entirely. Whatever the particular attribution, there is often the same current of distrust: the sense that women are not very accurate judges of when something is really, truly wrong in their bodies.”

As I was listening to this book, I recognized myself all over the place. I am one of the millions of women who have been taught to feel that the abnormal is normal because I'm a woman, and that's just how it is. We're taught to feel ashamed of our bodies when they aren't perfect and healthy (and often even when they are). We're taught to feel ashamed of our weakness when we can't cope with the symptoms of a disease or disorder or illness or whatever. We're taught that being a "complainer" is bad. We're taught to feel ashamed of asking too much of another's time and attention... and so we tend to not speak up unless it's VERY bad. And sometimes not even then.

For example, I get migraines, less often than I used to, but still frequent enough that I am constantly on the alert for the first sign of one so that I can try to deal with it before it gets bad. I know my triggers and try to avoid them, and I know the signs when one is coming, and I have methods of coping to shorten it and lessen the severity - usually 600mg ibuprofen right away, and then resting for about 20 mins in a dark and quiet room does the trick. It will still come, but it will pass quickly.

I also get other headaches as well, which are actually more frequent and debilitating than the migraines, but I'm not sure what they are, though I suspect cluster headaches, because many of the symptoms are the same - eye pain/watering, sinus pressure, sharp pain behind the eye on one side only, usually start around the same time of day (around 6pm), but I'm not sure because they don't "cluster" - meaning I don't get multiple in a short period. But when I do get them, they put me down for the count. I'm useless and I have to just rest in a quiet, dark room until it passes. Ibuprofen does nothing for these ones.

I also suffer from debilitating menstrual cramps more often than I'd like. The pain has actually lessened quite a bit since I switched from tampons to a menstrual cup (sorry not sorry about the TMI), but even so, usually at least one day a month, I'm literally unable to function because of it. The pain radiates down my legs, up my spine, throughout my torso, even into my chest. It gives me nausea, constipation, and is literally physically draining. The exhaustion is staggering because it hits me like a brick all at once. Recently, while driving to my brother's house about 5 hours away, I had to deal with this mid-drive. I had to pull over because I was having trouble keeping my eyes open and focused on the road and worried that I might cause an accident.

But I have never mentioned any of these things to my doctor(s). I've always just thought of them as "normal" since I've dealt with them all for so long, and assumed that they would tell me the same if I brought them up. It's hard to retrain myself to think differently about what is "normal" or "acceptable". I go to the doctor for things like sinus infections or UTIs or stitches or checkups, but I don't mention the chronic pains that I live with... because they have always been just part of life.

Books like this are so vital in understanding just how bad this situation is, and to galvanize us to work to fix it and demand better from the people who have sworn an oath as medical professionals to do no harm, but who are failing in that when it comes to treating women. As I mentioned in reply to a comment from a friend regarding this book: We're doing it, bit by bit, but it's like walking into a brick wall and trying to make it a sidewalk. It's hard, and painful, and frustrating, and often humiliating, and absolutely exhausting.

This book tends to be quite repetitive, reiterating the hysterical woman trope over and over again throughout the book. But maybe that's the point. We have to constantly battle this bias over and over again. I did find it fascinating and eye-opening, and really appreciated the no nonsense way that all of the arguments were laid out, interspersed with individual women's stories of their struggles for medical help. It was heartbreaking the way that some of these women were mistrusted, disbelieved, mistreated, and made to feel crazy and delusional, all for trying to get help for their illnesses, many of which were "medically unexplained".

That was a concept that threw me for a loop initially. We tend to think that medical professionals and medical researchers and scientists spend their time trying to learn about medically unexplained illnesses, or at least I always assumed so. How else does something become medically explained? But this book disabused me of that notion quickly. Apparently, it takes a long, long time and a lot of sick people, before the medical community begins to take a set of symptoms seriously and try to get to the bottom of what's really causing it. And in that time, a lot of sick people are told that their illness is all in their head. This included things like Lupus, or MS, or Chronic Fatigue Syndrome, or Fibromyalgia, or even Celiac disease... All "medically unexplained"... until they weren't anymore. Yet, people suffering from things like multiple chemical sensitivity or chronic Lyme disease CAN'T be suffering from those things, because they don't exist, because they're not medically explained. It's crazy circular logic, and at best, it just shows the gaps in the knowledge that we have, and the work that is still to be done... but rather than erring on the side of believing the patient, too often, the patient is scolded and sent home like a naughty child.

Unexplained pain is one of the most contested, according to this book, and is often claimed to be all in a sufferer's head. Which... is true. It is. We feel pain because our brain (located in the head) interprets a pain signal. But if those signals malfunction, and the nerve isn't actually sending a message, but we feel it anyway - is that any less "real" pain?

It makes me think of Dumbledore's last conversation with Harry:


This book is frustrating and disheartening and exhausting (but what the hell isn't, these days?) but I also feel like it should be required reading for anyone involved in or dealing with the medical system. Not just in America, but anywhere. Let's just listen and trust each other, and be open minded to new things, and be curious to try to figure them out, instead of outright dismissal of them and the people whose lives are affected by them.

[Wendy · Rating 5 out of 5]

"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."

If you are a woman, have a body and go to the doctor, read this book. You will recognise your experience in these pages. You will get enraged. And you will be joined by many other women.

As a sufferer of CFS, I faced years of doctors telling me I was suffering from stress and just needed to meditate, take it easy. The suspicion that it was "all in my head" never far away. My daughter with PCOS as a teenager was laughingly called a "hypochondriac " by our ex-doctor because she was missing her periods.

This book meticulously details the gaps in medical treatment for women. Primarily the gaps are in two areas:
Knowledge about women's bodies, issues, complexities and Trust in women's accounts of their symptoms. "Hysteria" and "psychosomatic" part of the regular lexicon.

This book details a situation in women's health that is beyond alarming; one that leaves women suffering for years with no support or diagnosis. The rule of thumb is: "If we don't know what is causing your chronic pain, it must be all in your head, not a deficit in our knowledge."

Well written. Infuriating. Empowering. Recommended.

[Julie · Rating 2 out of 5]

I learned a lot of infuriating information from this book that will hopefully improve future interactions I have with doctors. I wish, though, that the information had been presented better. It was quite a slog, getting through this book. Lots and lots of facts, many repetitive and written in a dry, dull style. Reading non fiction books like these make me appreciate it when I do come across a piece of non fiction that is well written.

What did this book teach me? A lot. There are two overriding problems facing women today when it comes to health care. The knowledge gap - there is dramatically less research and information about women's health - and the trust gap - basically that it's all in our heads when women get sick. There is a strong unconscious bias embedded in the medical community that I hope will lessen with time as more women become doctors & medical researchers.

Women's health is often conflated with reproductive health. That is a part of it, our reproductive system, but for many in the health field the terms are synonymous. It's known as the bikini health approach to women's healthcare. Only body parts covered by a bikini are focused on.

Fun facts in this book:

Of the FDA approved drugs pulled between 1997-2001 because of health risks, 80% of them were pulled off the shelves because it turned out they were more dangerous for women.

There are no laws forcing either private companies or government funded studies to include women in trial studies or research. And most do not for two reasons that are diametrically opposed. One: it's because the sexes are totally alike - other than our reproductive systems - so there is no point in including women. We can just extrapolate the findings to women. Strangely, if that is the case, there are never any instances when only women are studied and the findings extrapolated to men. Hmmm. The opposite argument is that women aren't included because they are soooo different. Including women would "confuse" the test results and introduce too much "noise" so it's harder to get "clean" results. Also, the most important reason of all, it would increase the cost of research.

Women are 75% more likely to have a negative drug reaction because - surprise - there are no studies to see if and how a woman might react to a drug. It's just extrapolated from studies of men's reactions.

More than half of all American women have at least one chronic health condition.

Women delay seeking care more than men do but that is not the commonly held perception in the medical field.

Women who seek care tend to fall under two categories. Either they are neurotic attention seekers - this is when the women is middle/upper class and white or Asian - or they are malingering drug seekers out to scam the system & get drugs & disability check. Obviously the latter are black & hispanic women & working class/poor. Rarely is the woman seen who does not fall under one of these two types.

I learned that you should always bring a man with you to a doctor appointment when you are trying to get a diagnosis. Especially at the emergency room. Staff will believe the man if he says what your symptoms are.

Doctors think men have heart attacks and women have stress.

My favorite quote from a 1971 medical textbook - "Many women exaggerate the severity of their complaints to gratify neurotic desires." Seriously, that was what was taught.

There are 50 million Americans with autoimmune disorders. 28 million with hear disease. 21 million with cancer. Then why are autoimmune disorders not funded better? 75% of people with autoimmune disorders are women. And you know how neurotic and whiny women are. They are probably exaggerating those symptoms.

If you wear makeup & are traditionally attractive then doctors will see your pain as being less. Why you are too pretty to feel bad!

If you are fat, then it is because of your weight that you are having problems. Many doctors won't even look for a cause and just automatically assume it's because of weight.

If you are young and seeking help for unexplained symptoms, doctors will jump to the conclusion that you are partying too much, or maybe you have an eating disorder.

Honestly, this was quite a depressing litany of facts throughout the book. I am glad I now know these things but it certainly wasn't a book I was rushing to pick up and finish. Took a long time to read.

[Zia Okocha · Rating 5 out of 5]

This book is must read for all women, doctors who care for women, and anyone with girls and women in their lives (so, yes everyone). As a female physician of color, I know I have come to have antennas up for inherent systemic racism built into our medical education and treatment systems. Until this book, however, I did not notice how sexist the medical system is as well. As the author notes, so many medical conditions that cause knee-jerk negative reactions are experienced mostly by women. She also takes us through the history of a number of medical conditions that until recently have not had biological or "organic" explanations and have largely been considered "psychogenic", completely made up, or part of the the normal crappy experience of being a woman (see endometriosis or dysmenorrhea).

She also notes the lack of funding for many female-predominant conditions, and likely most shocking the fact that most of medical research is based on men, male animals and male cell lines. We are not taught about differences between males and females in medical school other than the reproductive health system and when we have our OB/Gyn and urology rotations. It wasn't until residency that I learned about how medications are metabolized differently by men and women. So, I shudder to think about how many conditions we fail to optimize by not evaluating outcomes in women.

Because of this book, I know I will make more of a conscious effort to check myself when dealing with female patients, knowing that I live in a society and was educated in a system that instills bias against believing women or their symptoms. Moreover, I am interested in using this knowledge to help push for more research including women (especially pregnant women) and evaluating more closely studies that I read for outcomes separated by sex.

So thankful for this book and I hope more folks read this and feel empowered to demand more from their physicians and the medical system.

[Alex Linschoten · Rating 4 out of 5]

Important and timely. Dusenbery has hit the nail on the head with this book. I highlighted so many passages. She reveals how -- at almost every turn -- women are rendered dismissed, ignored and invisible by the medical system.

[Annie · Rating 4 out of 5]

This is great. A fantastic examination of the ways women's health is ignored and dismissed, as well as sex and gender biases that lead to inadequate research on certain diseases.

It's also a personally significant thing for Ms. Dusenbery, who has rheumatoid arthritis (a disease primarily affecting women).

There are three main ways that medicine fails women:

1) Animal studies are almost entirely done on male animals, not female. The reasoning? Female animal's menstrual cycles could throw off the results because the drug/disease etc. might affect them differently. Of course, the problem is, we need to know how that drug/disease affects females! Because women also have menstrual cycles, so we need to know how the drug/disease will affect them as a result! Plus, there's really no evidence that the mere fact that "female animals have cycles" makes any difference at all to most diseases and diseases. Plus (this isn't mentioned in the book but it's also relevant): MEN HAVE HORMONAL CYCLES TOO. Not only do they have monthly cycles (this is a thing) they also have cycles throughout the year (testosterone increases from April to November, when it peaks, before decreasing again and bottoming out in April). So this is just a bunch of 20th century bullshit.

2) There aren't as many studies done on diseases that disproportionately affect women as there are studies done on diseases largely affecting men.

3) When women go to the doctor and say they're in pain, they're much more likely to be dismissed. They might be told they're just emotional/hormonal/dramatic, or that the pain is all in their head (psychological). They're less likely to be prescribed pain medication. And if you're a woman of colour, this effect goes up exponentially. I appreciated the fact that Dusenbery looks not only at sex/gender, but at race and other circumstances as well that will affect how doctors perceive you.

[Alyssa Foll · Rating 4 out of 5]

This was an eye-opening read about how poorly women are treated in the medical system. Maya Dusenbery examines multiple factors for why medicine tends to be sexist and paternalistic in its care of women, but she also shares countless stories of women who advocated for themselves and for the healthcare they deserved.
I can't say that this is a "pop" science read-- there was an impressive amount of data, acronyms, and medical jargon. However, it is well worth the read to explore how women in pain are treated by our medical system in the US. My hope is that this book will serve as a clarion call for better healthcare and better treatment for all women.

[Barbara (The Bibliophage) · Rating 3 out of 5]

Originally published on my book blog, TheBibliophage.com.

Maya Dusenberry compiles and analyzes a boat load of important information in Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. Now you know her theme—the way women suffer because of misogyny and prejudicial thinking by medical professionals.

If you are a woman reading this review, I heard you. You just said, “Duh.” Because a woman of practically any age can tell you at least one (and more likely several) stories about this fact of female life. Dusenberry may not tell us anything we don’t know. But she does compile the good work of many authors and researchers. And she tells the story of several real-life women too. Anything we do to bring the issue to light makes women feel less alone. That’s invaluable.

Almost all of her topics, which she often divides by disease, are familiar to me. They range from ovarian cancer to heart disease to vulvodynia to Lyme disease and migraine. This is just a small cross-section. Dusenberry discusses these diseases, and the general misogynistic approach to women’s health in terms of current day as well as history. Both aspects are interesting.

As a massage therapist who specializes in pain management, I hear stories like the ones in this book. All. The. Damn. Time. I am honored to take my clients seriously, and to do everything I can (within the scope of my practice) to help them. And if I had an extra dollar for every time someone’s eyes filled with tears (including my own), I’d donate it to research these so-called “women’s conditions.”

My conclusions
Dusenberry is a writer with a chronic, painful autoimmune condition that primarily affects women. It was that diagnosis that started her journey with this book. She’s very empathetic, but never lets it get in the way of her journalistic integrity. She’s clearly angry, but keeps it toned down enough to still be effective.

Even though I’ve been reading books on this topic for about 10 years, Dusenberry taught me things I didn’t know. And she enlightened me to some intersectional medical difficulties as well. As a white, middle-class (mostly), cis-gendered woman, I have experienced privilege in my medical life. On the other hand, since that first diagnosis 10 years ago, I’ve been diagnosed with more pain-related conditions. This book hits close to home for me.

I will say that I didn’t care for the style, tone, or delivery of the audiobook narrator. She’s just too wooden and distant in her narration. So, if you are intrigued, give the print or ebook versions a try first.

That said, if you are a woman or love any women, this is an important read. I encourage you to read it, and then to continue to use it as a reference tool in years to come.

Book Pairing Suggestions
Dusenberry name checks practically all of my favorite authors on this topic, including one whose book is sitting unread on my shelf. Here’s a list of possible pairs, based on the author’s suggestions.

A Nation in Pain by Judy Foreman
Battle for Grace by Cynthia Touissant
In the Kingdom of the Sick by Laurie Edwards
The Autoimmune Epidemic by Donna Jackson Nakazawa
Cure Unknown by Pamela Weintraub
All in My Head by Paula Kamen
Brain on Fire by Susannah Cahalan

[joy · Rating 4 out of 5]

Very informative but Super hard to get through, she gets a bit repetitive. The chapters are really long and not well-sectioned. So read on if you want to learn everything I did without spending a week plowing through the book!

1. Medicine needs more humility. It has a tendency to consider the “medically unexplained” psychiatrically explained by default, when in actuality we just haven't discovered enough about the physiological basis of the condition yet. By using psychogenic theories as an explanation for "medically unexplained" conditions, we discourage further research into actual scientific explanations.
2. Medicine has a history of putting all of women’s unexplained diseases into a psychogenic catchall category: as the history of multiple sclerosis (MS) so clearly illustrates, once a disease is removed from this category, it tends to be initially considered very rare, and then, as awareness of the new disease permeates the medical system, prevalence estimates increase and increase until they finally stabilize.
3. Despite the presence of sex differences in animals and on a cellular level, researchers tend to use male animals & cells in studies. Eg. a 2005 study found that nearly 80% of animal pain studies had used only males.
4. Researchers often cite hormonal fluctuations in menstruating women as the reason for not including them in drug studies: too many variables. But “It defies logic for researchers to acknowledge gender difference by claiming women’s hormones can affect study results—for instance, by affecting drug metabolism—but then to ignore those differences, study only men, and extrapolate the results to women.” Same goes for pregnant women - if the drug could potentially affect the fetus, it's important we include pregnant women in pre-clinical trials and determine what these effects are.
5. The history of hysteria: it used to be considered a disease: first a uterine one, then demonological, then nervous, then gynaecological, then psychological. Nowadays we just use euphemisms like "somatoform disorder" due to "stress". This makes it a lot easier for doctors to dismiss patients' concerns, since no concrete biomarkers/symptoms are required for the "diagnosis" of somatoform disorder.
6. Today, medicine seems to have generally settled into a position that manages to incorporate the worst of both worlds: it’s considered “normal” for women’s reproductive functions to be a bit abnormal—and if it’s really bad, well, maybe it’s all in your head.
7. For most of our lives, we are “too young” to be sick anyway, and our symptoms can be blamed on "female issues" like menstruation, pregnancy, motherhood, and menopause. By the time we’re finally old enough to be seen as sick, we’re so old that nobody cares if we are.
8. Medicine sucks at treating pain, partially due to poor education & stereotypes. Sometimes pain is not merely a symptom, but a condition in itself.
9. The tendency of doctors to downplay/dismiss/assume away patient's pain & experiences is a deeply invalidating form of gaslighting. (I've personally experienced this)

Other random medical concepts I learned of:
1. Pharmacokinetics (which is how the body acts on the drug) and the pharmacodynamics (which is how the drug acts on the body)
2. “Knowledge-mediated” biases
3. Theory of toxicant-induced loss of tolerance (TILT) to explain chemical intolerance
4. Lyme disease HAHHA I thought it was entirely a conspiracy but I guess things may not be that clear

[Susan · Rating 4 out of 5]

A must read book for women

I had no idea how lucky I have been with my medical care and how often women are told their symptoms are "all in your head". This is an informative infuriating book and well worth your time to read. Highly recommended

[Rennie · Rating 4 out of 5]

Just about every illness Dusenbery presents in this book follows what becomes a predictable, deja-vu pattern: woman goes to doctor with symptoms, often extremely severe, life-interruptingly so. Doctor notices that she has a female reproductive system and CRAZY FEMALE HORMONES and she's either a) crying too much, so it's a psychological problem because the other symptoms don't make sense/are exaggerated, or b) she's not crying enough to be convincing, so it can't be as bad as she says it is. Whatever problem, no matter how severe, is basically just attributed to being female. And an overemotional or drug-seeking one at that. Now get out of this office and go have a glass of wine, quit being a precious delicate flower about your imaginary "pain", use more lube, and get pregnant - that'll fix ya! (How I wish I was exaggerating. That's often actually the prescription.)

There are so many issues tied into this, not least the economic one - the only women who eventually make it out the other side of this horror maze, sort of, plenty of damage already done, are the ones who have enough money (sometimes hundreds of thousands of dollars), support, and time off work to go to doctor after doctor for years or decades until finding the one who listens, or has seen and believed this before. The additional layer of disbelief and dismissal put on women of color makes the mind reel. Research funding over and over again has been funneled away from illnesses that only or disproportionately affect women, even with people screaming that if men were affected by all of these different conditions we would find the time and money to research the hell out of them right quick. But they're not, so *shrug*

This whole thing was so disheartening, and for all the incredible strides we've made in medicine, we're still burdened by a terrible bias against women, and hindered by being so far behind in research on and including women (even the research mice -- THE MICE!! -- are male!). So yet again, the burden is more heavily on women/the patient themselves to educate, research, advocate, and even inform doctors themselves. And we have to hope that younger doctors will be less biased and more willing to break away from the habit of labeling certain illnesses as psychosomatic or discounting pain and all the rest of it.

It's frustrating, maddening, but it's a necessary read. If you haven't gone through this personally, it's hard to understand what women are faced with and what it does to your life to not be believed. I wish I could force the doctors who managed to leave me even worse than they found me to read this.

[Laura (Kyahgirl) · Rating 3 out of 5]

4 stars for depth and content/ 2 stars for delivery.

I really appreciate the amount of work that the author did in pulling together a massive amount of information, not only about medical education and history, but also about diseases. However, I ended up skimming parts of the book because she bypassed the “less is more” guideline.

I think the message of the book was well delivered in the first 25% or so and it’s definitely worth reading.

There is an excellent bibliography which is something I always appreciate.

Thank you Jessica for the recommendation.

[Shaina · Rating 5 out of 5]

Would it be inappropriate for me to give a copy of this to every medical professional I meet? Or maybe just to a couple of terrible of doctors from my past?

[Kent Winward · Rating 5 out of 5]

A needed update and more comprehensive analysis of the issues raised in Complaints and Disorders: The Sexual Politics of Sickness. We are in an era, not unlike the era before the discovery of bacterial caused disease. The solution is in listening to the sick and afflicted, not discounting them with labels of "conversion," "functional," or "psychosomatic." We have a long way to go to fix our medical system and its treatment of most of its patients.

[Melissa · Rating 5 out of 5]

A deep dive into decades-long practices in science and medicine that disadvantage women from the word go. Bad science, prejudicial and paternalistic attitudes by physicians and other care providers, and a persistent belief that women’s self-reported symptoms are not to be trusted. Dusenbery gets into the actual published science behind all the bad science/medicine and how the tides are slowly beginning to turn.

Book 2 of the three-Book trifecta coming out 3/6 about women’s health and chronic illness (other two titles are Invisible and Ask Me About My Uterus).

[Melissa · Rating 5 out of 5]

Forthcoming. If you’re going into/already in science or medicine OR if you support feminism (hopefully everyone), this book is an important siren call for bias awareness.

[Dr. K · Rating 4 out of 5]

An excellent and extremely depressing look into medical misogyny and how women's symptoms are routinely dismissed in the medical profession. There was a lot of emphasis on how medicine is still building its knowledge base and the gap between where research is vs what doctors know.

While I appreciated the intersectionality in many parts of the book, something about how mental illness was discussed irked me. While I understand the author wanting to present a strong dichotomy between real illness and psychiatric illness to emphasize that symptoms aren't just 'in our heads', this manfiested as a routine dismissal of how, when, and why psychiatric and physical illnesses interact and why the line between them isn't so clear could.


All that said, this book still comes widely recommended if you've ever been dismissed by a doctor, are interested in women's health beyond reproductive health, and are interested in challenging what you may think about "fashionable" diseases.

[Dianne · Rating 4 out of 5]

This book was a very difficult read for me because nearly every page filled me with outrage. Anyone who has gone to the doctor while female will recognize some of the ways that women's suffering has been ignored, dismissed, and marginalized, often leading to delayed diagnoses, additional sufferings, and inflated medical costs. And that is just for diseases with a known somatic basis. Pity the poor woman who suffers from a mystery disease - she is more likely to get a mental illness diagnosis of stress, depression, anxiety, or psychosomatic disease than she is to hear that her symptoms are real.

I have one little tiny bone to pick with the book. Dusenbery goes to great lengths to show how diseases that affect women are assumed to be "all in her head," and dismissed as mental illnesses until eventually a few doctors take them seriously, manage to scrape together research dollars, and find somatic causes that prove to other doctors that the diseases are real. So far, so good. However, one hazard of this line of argument is that it is too easy for a reader to conclude that mental illness is, in fact, not "real" like other illnesses. I don't believe that Dusenbery thinks this - I hope she doesn't, given that mental illnesses have biological markers just as much as other illnesses. But I'd have liked to read an explicit statement that mental illness is real, too. Possibly the problem is that the kind of doctor who would dismiss a patient's pain as "all in her head" would also perceive mental illness as less real than other illnesses.

[Laura Neal · Rating 5 out of 5]

“It’s very difficult for a woman to present in a doctors office. Because if she’s very stoic- if she talks about the problem in the tone that I’m talking to you- then the doctor’s going to think ‘oh, there’s nothing really wrong with her’. And then if she gets very emotional, he’s going to blame it on ‘oh, she’s a psychological mess blah blah blah’. You get judged right away because you are female: you’re either stoic and nothings wrong or you’re crying and you get labelled hysterical.”
This book is SO GOOD.
It mainly talks about how women are mistreated by medicine, but it also talks a lot about the history of hysteria and how that manifests in the treatment of chronic diseases.
“Nowhere does medicine appear less like a science than in its approach to ’medically unexplained symptoms’.”
Like uhmmmmm, this is so validating to read as a woman (and it had a full on chapter abt ME/CFS which was fun and interesting and sad)
The amount of horrible doctor interactions documented in this book (see, “you know Mrs. Murray, some people subconsciously want to be sick”) is absolutely horrifying, but also helps in a sense to read because it validates your own experience too. Every future health care professional should read this, or if you just have an abnormally high interest in the intersection of feminism and ableism.
The stories told are so deeply moving, but they’re also used to make larger points with more evidence in such a good way. 5/5 stars, would recommend.

[Gustavo · Rating 5 out of 5]

There’s not really much else for me to say other than this book really opened my eyes to a lot of issues that I hadn’t known even EXISTED in the medical community and that’s entirely because of the fact that I’m male and identify as a man. As I read the first couple sections of the book, I started talking to my female friends about some of experiences that the book described and I was blown away by the fact that a lot of them had some experience with this type of sexism. I really have this book to thank for showing me some issues in society that I otherwise may never have known! From a psychology perspective and as someone who has an interest in clinical psychology, the modern day nature and diagnosis of “hysteria” was especially troubling and something I will carry with me moving forward

From a queer perspective I was very happy that, although this book largely focuses on cis-gender straight females, the author does acknowledge and add some points about transgender individuals and sexual minorities. As well, there’s a great exploration of the problems being currently faced alongside just HOW western society arrived at this point.

Overall, I would highly recommend this book to anybody with an interest in diversity in society, medicine, medical research, psychology, or who just wants to have a little bit more knowledge about the world and the things that need to change.

[Marianne K · Rating 3 out of 5]

A repetitive look at gender-bias in the doctor/ patient relationship. Having experienced this firsthand, I certainly agreed with the premise. I almost bailed in the introduction as the author had so many liberal views that I do not subscribe to, "... nature is a lot more diverse than the two categories [gender] we try to impose on it", uh, no, sorry. Here's another gag-inducing gem, "I won't be discussing routine reproductive health care in this book-that is, contraception, abortion, and care during pregnancy and childbirth" I italicized the procedure she considers 'routine'.

Getting past the author's biases, I found the book really repetitive and rote: Present anecdote, give statistics on disease/condition, tell how women are not believed even though they are affected more than men, wrap up with anecdotal person finding own cure via Internet, repeat, repeat, repeat.

I liked the brief forays into medical history, such as the hysteria discussion. But did every condition need a monetary tally of how much research is allotted to it, and it seems every disease was compared to the money given to MS research for some odd reason.

[Kira Thurgood · Rating 5 out of 5]

As a woman with multiple female-dominant medical conditions (most of which were discussed in this book), I'm thrilled this book exists. It's vital that we have this modern examination of sexism in the medical industry. Some of what's in this book I already knew, from prior research and personal experience, but I still found it to be stunning and educational.

I personally related most to chapters 2, 5, and 7, and to some degree, 6.

(If you're interested in hearing more about my own chronic illness experience, you can check out the Chronic & Mental Illness tag on my blog.)

(Showcased in Books Outside My Comfort Zone That I Recommend)

[Linden · Rating 3 out of 5]

The author discusses how women’s health concerns, especially illnesses which primarily affect females, such as CFS, POTS, and fibromyalgia, are often dismissed as psychosomatic. Better medical education and research directed towards many of these illnesses would help, but our society does not prioritize them. It’s depressing that women’s concerns are so frequently marginalized, and that multiple doctor visits are often required for the patient to be taken seriously, and be diagnosed and helped.

[Pam · Rating 5 out of 5]

Important and heartbreaking. The lengths to which a woman must advocate for her own care is ridiculous. Every health provider needs to read this book, even if they think they treat all patients the same (because guess what - they probably don’t).

[Anaïs · Rating 5 out of 5]

important and timely. should be read by all medical professionals.

[DW · Rating 5 out of 5]

Much of the book focuses on anecdotes of doctors dismissing womens' symptoms simply because the patients are women. "Before [the twentieth century], doctors had no choice but to take patients at their word about what they were experiencing in their bodies." p 69 However, "I spoke to a depressing number of women with a range of conditions who attested to the power of a male relative - whether a partner, a father, or even a son - to help ensure their symptoms were taken seriously." p295 One young Ph.D candidate described trying to find out why she was suddenly dizzy and being told that she wasn't really sick: "'This was the first time in my life that anyone had ever doubted my account of the world.'" p252

Dusenbery explains how these experiences are delegitimizing, because women know there is something seriously wrong with them but they are told they are the problem: "Medicine has an enormous power: the authority, as Susan Wendell puts it, 'to confirm or deny the reality of everyone's bodily experience' - to determine which symptoms are 'explained' and which are 'unexplained', to judge who is a sick person deserving of care and sympathy and who is a 'heartsink patient' trying to get the 'secondary gains' of the 'sick role.'" p312

"Though medicine has a long history of dismissing women's unexplained symptoms, Bateman suggests that the problem became even worse in the eighties and nineties, with the rise of 'evidence-based medicine.' This approach, she points out, 'can come back to bite you, if you're not careful,' because if a disease hasn't been sufficiently studied yet, the evidence base simply isn't there." p264

Women are demanding better treatment now, in part because they can connect with other people with the same symptoms over the Internet:
"Guidone says that over the twenty-five years she has worked with endometriosis patients, she has begun to see a shift: women are less willing to accept it when doctors try to send them off with a paternalistic pat on the head and the assurance that debilitating pain is simply 'a part of life.'" p249

But patients shouldn't have to resort to the Internet to find out what is wrong with them and what can be done about it:
"We deserve better than a medical system in which an extremely debilitating and common condition remains so unknown more than two decades after it was first described (or 150 years, depending on when you start counting) that patients have to do everything themselves - from diagnosing each other to teaching their own doctors about it to funding the scientific research that's so desperately needed to explain it and cure it. [talking about postural orthostatic tachycardia syndrome]" p281

I've actually heard stories from men about them not having their symptoms believed by medical personnel, and being told they were just fine (it turned out one had a tumor, one had been given a potentially life-threatening wrong medication, and one had a severely broken leg (how do you miss that one?)). Also, I've never been accused of making up symptoms even when my symptoms made no medical sense (I was even explicitly reassured by the nicest fellow I've ever met that my symptoms were not just in my head, which I thought was an amazingly compassionate gesture) so I've either had exceptional doctors or been lucky or the tide is turning somewhat. (My mom pointed out that the study showing that women in the ER have to wait longer than men for pain meds is 10 years old.)

The book would be more convincing if it included an actual study on the topic of male doctors dismissing women's complaints and overprescribing them antidepressants. Dusenbery admits that she is just writing anecdotes, but insists "There is research to back up these anecdotes, though not as much as you might imagine, only because, I came to learn, there's little research on diagnostic errors in general, which are described by experts as an enormous blind spot within the profession." p4 Diagnostic errors are another issue, which sorely needs addressing.
"In 2015, an IOM report concluded, 'For decades, diagnostic errors--inaccurate or delayed diagnoses--have represented a blind spot in the delivery of quality health care' and 'continue to harm an unacceptable number of patients.' The Society to Improve Diagnosis in Medicine estimates that each year, 40,000 to 80,000 people die due to diagnostic errors in the United States. [...] According to a conservative estimate published in The BMJ in 2016, medical errors in general are the third leading cause of death in the United States, after heart disease and cancer." p85 I remember reading in Complications: A Surgeon's Notes on an Imperfect Science that doctors no longer confirm their diagnoses by performing autopsies. I hope that somebody at least starts studying this topic, instead of everybody worrying about sparing doctors' egos.

More convincing to me was the argument that women's responses to drugs are less well understood because researchers experiment primarily on male cells, from tissues and mice all the way up to humans. Dusenbery asserts "The very justification offered for not including women in studies underscore[s] exactly why they [need] to be included: it might actually matter. As medical journalists Leslie Laurence and Beth Weinhouse wrote in their 1994 book on gender bias in medicine, Outrageous Practices, 'It defies logic for researchers to acknowledge gender difference by claiming women's hormones can affect study results--for instance, by affecting drug metabolism--but then to ignore those differences, study only men, and extrapolate the results to women.'" p32

I remember hearing this justification for not studying women (I feel like I was in grade school, though it seems unlikely that this was a topic introduced at that age) and not realizing the implications. For instance, Dusenbery says that women have different heart attack symptoms than men (pain in the left arm rather than in the chest) and that many women have been sent home from the ER while they were having a heart attack because of poor medical understanding of this fact.

This book asserts that that people with diseases that are more likely to affect women (ie autoimmune diseases) can't be helped because medical research hasn't been focused on those diseases, because most doctors assume that women are exaggerating their symptoms or that the women are just anxious or depressed. For instance, "One of the revelations Jonhson reported in Osler's Web was that the CDC had routinely reallocated funding that Congress had directed to their ME/CFS program to other projects [because CFS was seen as a joke]" p266 Also, researchers were naturally more interested in their own problems. "Rep. Schroeder put it in 1990, 'You fund what you fear. What you have a male-dominated group of researchers, they are more worried about prostate cancer than breast cancer.'" p 32

The book concludes: "Women's 'doctor stories' are similar, even when they are quite different. A white Ivy league college student is more likely to be seen as anxiety-ridden, while a woman of color is more likely to be stereotyped as a drug seeker. 'Educated white women' are seen as health-obsessed hypochondriacs who need to get off WebMD. But less-educated women may be seen as malingerers looking for a disability check. A thin woman is told she can't be seriously ill since she 'looks so good!' while a fat woman is told all her symptoms are due to her weight. For most of our lives, we are 'too young' to be sick anyway, and our symptoms can be blamed on menstrual cramps, pregnancy, motherhood, and menopause. By the time we're finally old enough to be seen as sick, we're so old that nobody cares if we are." p313

The book raises several important points, but it doesn't make an effort to show both sides of the issue. Dusenbery cites stories and statistics that all point in one direction, and that automatically makes me wonder, "What is she leaving out? How did she massage these numbers to say what she wanted to get across?" So overall an eye-opening book, but I would probably want to look into some of the claims a little deeper before swallowing it whole.

Random interesting fact:
"It takes a notoriously long time, often fifteen to twenty years, for any new scientific knowledge to make its way into medical education and, ultimately, change clinical practice: to go from "bench to bedside." p 51 Whoa. Sounds like the pace of progress in human spaceflight.

[Janessa · Rating 4 out of 5]

Fascinating book. Just writing this review so I remember some main/interesting points. Also I would like to say while this books point out the errors of medicine and medical practitioners, it is not a blame book. Yes doctors make errors but it is an imperfect system, with imperfect people, and everyone has their own biases/prejudices/preconceived notions that they are not always aware of. I would say the most important take away from this is to make sure you are advocating for yourself because ultimately it is your life and no one else will care so much.

Women react differently to different medications and present diseases differently and have diseases that are more common to them then to men. Even after the science community was aware of this, women would often not be included in studies as it was more effort to account for the difference in genders. There was also a time when all women who had the possibility of being pregnant were not even allowed in the studies at all as they were not trusted to make their own decisions on participating or not.

Many doctors are aware that diagnostic mistakes are made but very few are willing to assume they have made some, partly because they get so little feedback. Patients are unlikely to return once they have found answers elsewhere and so doctors are left to assume their original diagnosis was correct.

The amount of privilege a person has can greatly affect our knowledge of diseases. There are whole illnesses that were considered to just affect well off white women because those were the women who had the time, money, and/or support to go to multiple doctors if they were ignored or dismissed at first.

When a doctor cannot find any physical symptoms and all testing comes back as normal, then a number of them will decide it is psychosomatic and no testing is needed to make that diagnosis. A whole variety of symptoms can be swept under this diagnosis. Also once a patient has been diagnosed with a psychosomatic disorder it can end up haunting them and coloring future physician opinions. An interesting note was that there were cases of psychologists making a physical diagnosis, or at least saying that whatever was happening with the patient was not psychosomatic.

Doctors are also prone to assume any trouble a woman has is related to her reproductive capabilities, so either menstruation, or pregnant, or postpartum, or menopause instead of looking further. There are countless examples of kidney stones, bursting cysts, appendicitis, and even chronic diseases that have been overlooked as assumption that everything is normal when a woman is in pain or tired. This is not just something from doctors as it is general knowledge that being a woman hurts and having a period hurts and so how many times are we as women needlessly suffering because we think it falls under the realm of normal.

Ovarian cancer was once considered a silent killer and it was in all the documentation that there were no symptoms from it in spite of women stating differently. Women with ovarian cancer were told their symptoms could not possibly be from the cancer because it was symptom less. It got to the point where at one talk on ovarian cancer, the speaker doctor was talking about it's lack of symptoms and audience protested that he was wrong. Another doctor in the audience decided to do a survey on the women so this could be documented and there was a greater than 100% response rate as the women passed the survey onto other ovarian cancer survivors they know.