Doing Harm Lib/E: 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 affects every level of medicine and health care today--leading to inadequate, inappropriate, and even dangerous treatment that threatens women's lives and well-being.Modern medicine is failing women. Half of all American women suffer from at least one chronic health condition, from autoimmune disorders and asthma to depression and Alzheimer's disease--and the numbers are increasing. A wealth of research has revealed that women often exhibit different symptoms than their male counterparts, suffer disproportionately from many debilitating conditions, and may react differently to prescription drugs and other therapies. Yet more than twenty years after the law decreed that women be included in all health-related research and drug development, doctors are still operating with a lingering knowledge gap when it comes to women's health. They're not immune to unconscious biases and stereotypes that can undermine the doctor-patient relationship. The consequences can be catastrophic. Too often, women are misdiagnosed and poorly treated and find their complaints dismissed as "just stress" or "all in your head." Meanwhile, they are getting sicker. Maya Dusenbery brings together scientific and sociological research, interviews with experts within and outside the medical establishment, and personal stories from 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 overcome it. Eye-opening and long-overdue, Doing Harm is an empowering call to action for health-care providers and all women.

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

Audio CD

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.

[AMANDA · 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.

[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.

[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.

[Zia · 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.

[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.

[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.

[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

[Anna Knezic · Rating 5 out of 5]

Took a while to get through, because a lot of it was infuriating and depressing. But it was a great read, a very sobering look at gender disparities in healthcare.

[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.

[Michelle · Rating 3 out of 5]

I agree with the premise that there are very real limits to what science/medicine knows when it comes to our various ailments, and that women and people of color and other marginalized populations face skepticism, bias and worse treatment/outcomes. But I just cannot get on board with how she sacrifices fact for a good narrative - like she cites the lowered TSH ranges in pregnant women as proof we are only bc we are valued for reproductive means but it’s bc they’ve done fertility research. Also cites a lady who got turned away from multiple hospitals until finally admitted for three days for pericarditis - that’s not a hard indication for admission… also cited a lady who fainted with abd pain and was asked if on her period or pregnant as proof doctors just want a female excuse - maam have you ever heard of an ectopic 🧐 anyway I think Lyme fibromyalgia etc are terribly understudied and hard diseases to have but I wish she hadn’t painted this “doctors are evil chauvinistic pigs and medicine hates women” without at least a little nuance

That said there are a ton of misogynistic doctors out there and this was a good reminder for me to be kind to all patients. And I hope this book is reaffirming for those struggling to find help with their problems

[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?

[Carol Dobson · Rating 4 out of 5]

Interesting.

[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.

[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.

[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).

[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.

[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.

[Lindsey Parker · Rating 5 out of 5]

“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 women is told she can’t be seriously ill because she looks so good, while a fat women 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. Our intersecting identities may make the particular stereotype that hurt us different, in some cases even diametrically opposed. And yet, somehow, we so often end up in a similar place, fighting to have our reports of our symptoms trusted and taken seriously.”

[Leah Rachel von Essen · Rating 5 out of 5]

Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery is an incredible, vital, and validating text that talks about how medicine is failing through its inability to believe women—whether it’s lack of research into diseases that disproportionately impact women, lack of research into ways that heart disease and drugs effect people who aren’t men, or by generally doubting the credibility of women in the medical space.

The medical field is full of paradoxes. Doctors assume women are exaggerating their symptoms if they’re emotional, but if women try to be stoic, the severity of their symptoms is doubted. Women told their symptoms are all in their head stop going to the doctor and downplay their symptoms, which reinforces the doctor’s opinion. Women who seem stress or have an anxiety diagnosis are much less likely to be seen as having a credible heart attack event as men with the same, and yet who wouldn’t be stressed when they’re having chest pain? As Dusenbery writes on page 12: “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.”

I can’t possibly cover everything that this book does, because Dusenbery is magic to fit all of this, well-written and well-paced, into just 318 pages. She artfully paints a picture of medicine as a field resistant to change, resistant to the idea of new discoveries, resistant to depending on testimonies, especially if they come from women. Above it all floats the specter of “medically unexplained symptoms,” an excuse by which doctors push a failure to diagnose off of themselves, often deciding symptoms are psychological or somatic in nature, which is just an extension of the old hysteria story. Diseases that impact women disproportionally are less researched and more likely to be dismissed as not real; gender/sex differences in drug and disease are less studied, less reported, and less taught.

Many diseases are labeled as middle-class woman diseases, illnesses of those pushing at the ‘constraints’ of traditional womanhood, when actually it’s just that privileged, bold women are the only ones patient and determined enough to chase a diagnosis and insist on being heard. Women of color, impoverished women, and trans women are particularly vulnerable, due to intersectional discrimination, a reluctance to go to the doctor due to that discrimination, and the lack of resources and social capital to push for diagnosis. Fat patients are often dismissed—Dusenbery tells a horrifying story of a women who is told repeatedly to just exercise more, and does, only to be diagnosed with lung cancer just in time, narrowly to save her life—despite the fact that studies confirm that women are more likely than men to be fatter and healthy; also that BMI is a crude and inaccurate measure of metabolic health—a 2008 study found that 57 percent overweight women were metabolically healthy.

The section on Lyme disease was particularly enlightening for me. I was diagnosed with Lyme in elementary school, but ever since I’ve been plagued by sensationalized stories about how it doesn’t exist. When I reported to one doctor that I had had Lyme, he shook his head and didn’t write it in my file. I started to doubt my own childhood experience. But Dusenbery writes clearly about the disease: it is doubted largely because it was discovered by suburban mothers, and is seen as leaning on the credibility of women. I had acute Lyme, rather than the controversial chronic Lyme, and my experience was standard.

As an anxious, overweight woman who has been misdiagnosed and dismissed again, and again, and again, this book was tremendously enlightening and validating. It is informative and a vital read for any feminist, as it exposes the insidious and deeply worrying impact of sexism in medicine. In the end, Dusenbery highlights the patient advocacy and online communities that often save the day, but emphasizes that the real weight falls on the medical community to do better.

[Jane Henningsen · Rating 5 out of 5]

Oof what a tough read. If you are a woman or you care about any women in your life, you should probably read this!

A couple of years ago some friends and I picked up “Invisible Women” as a part of a book club and it opened my eyes to the fact that a lot of the innovations we rely on, from seatbelts and airbags to prescription drugs, are not adequately tested on women or designed with women in mind.

This is a great followup to that. It’s specific to the healthcare industry, and it documents a recurring vicious cycle in healthcare where women are not studied, then they present in a clinical setting with some nagging issue, and are told that their problems must be psychological because there is no current medical explanation for their symptoms. But of course there’s no explanation - nobody bothered to look for it!

Women’s mysterious health issues have been written off as psychosomatic until research identified them as lupus, MS, endometriosis, and many other diseases that occur in women. These are all difficult conditions to live with and my heart aches for the women of previous generations who spent years being told that their pain was in their heads, or was a personality flaw.

Another topic is the medical community’s bias against women. (there are literally quotes from medical school textbooks in the ‘70s that teach students to look out for attention seeking irritable women who surely have no real problems - it is WILD to see these things in writing in a “credible” source.)

It also discusses how common medical problems such as heart disease present differently in women than men, and that some women suffering heart attacks have been sent home from multiple emergency rooms before anyone took them seriously. The lack of research and documentation of women’s symptoms means their symptoms don’t align with what’s taught, and they are dismissed as anxious when they are actually very ill.

I really do think that everyone should read this. Women should read it so that they can understand how to advocate for themselves and trust the messages they receive from their own bodies. Men should read this because it will help them understand and advocate for their wives, mothers, sisters, daughters. And if you’re not on the gender binary I think it’s applicable too - you are not the typical male
patient.

[Ashley · Rating 3 out of 5]

This book...kind of the nutshell review I can give this book is TLDR. I skimmed most the book. I read all of a few chapters in the middle before becoming frustrated with the repetitive feel of the book and skimming again. Each section about different types of illnesses read in a very similar fashion. Women get sick, no one bothers to really find out what is wrong with them, history lesson about the illness and how it has been blamed on "hysteria", history of the misogeny of modern medicine, explanation of how it is ever-so-slowly changing. The details and history could be entertaining, I'm just not at a place right now where I have the attention span to read 300 pages about it.

The introduction almost made me not read the rest. I am not "that" sort of feminist, and I felt like the introduction was inflammatory and excessive. It was everything I find frustrating about "that" sort of feminists. I was relieved to find that for the most part the rest of the book was given a less inflammatory tone. She presented the facts and gave her analysis, but I didn't find her analysis to be absurd and over-the-top like I feared it would be.

However, I wanted to read the book for a reason. She is right in her assessment of the medical field and how it fails half of our population. Although I am blessed (so far) with relatively good health, I have seen some of what she talks about. I have found myself unwilling to seek medical help because I fear being brushed off and not listened to. I am glad I read the book (or most of it...) to help me recognize when I am being dismissed because I am a woman. Hopefully that will help me be empowered, and at the very least, it will help me know it's their problem, and I'm not just crazy.

[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.