Updated: Mar 20, 2022
Last week I finished reading Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery. It is an excellent book and well researched. It gave me many things to think about so this post is going to be part review and part commentary on what she shared. I think it’s important for every woman to know the ways in which the medical system fails them so they can advocate for themselves when needed. Although we should live in a world where women wouldn’t have to work harder than men to get good medical care, we aren’t there yet and it’s something we should all be aware of.
I usually start discussions of the medical establishment with a disclaimer that I’m not against medical science and I think that conventional medicine is really good at treating acute issues. Broken limbs, severed digits, massive injuries from accidents, heart attacks, and those sorts of things are where doctors and nurses can do what they do best and put you back together. If you are experiencing acute issues, then get yourself to an ER now and get help.
At least that has always been my standard disclaimer. After reading this book, however, I am not completely certain of this. Dusenbery doesn’t just hammer you with facts and figures but weaves in the stories of real women and how they were treated by the medical system. The stories of women in this book sound sadly familiar. They tell of women with serious pain going back multiple times to the ER only to be sent home with a diagnosis of “stress” that later ended up being a heart attack or a ruptured spleen. They tell of women struggling to get help but doctors telling them that they just need to rest more or lose weight. Despite some having very serious acute symptoms, the medical professionals didn’t see what was going on and did not treat them.
That’s because medical professionals are just as good at stereotyping people as anyone else. Unfortunately, the standard stereotypes of women include, “hysterical,” “stressed,” “hormonal,” “neurotic,” and” hypochondriac.” For women of color the added stereotype of “drug seeker” or “lazy” gets applied. Dusenbery sets out a ton of research that clearly shows that men’s symptoms are more likely to be believed than women’s. That men are more likely to get tested and diagnosed faster. That women wait longer in the ER to get help and are usually prescribed fewer or lower doses of painkillers. That more women are sent home with potentially life-threatening conditions because they are not taken seriously.
This depressing research extends to primary care physicians and specialists. Women are often sent home with general diagnoses such as “stress,” “menstrual problems,” “tired,” or “anxiety.” Women who are young and/or thin are often dismissed because they “look healthy.” Women who are overweight are often told that all their problems are the result of their extra weight. Women of color are believed less often than affluent, white women. Women who are emotionally trying to explain their symptoms are dismissed as “hysterical” while those who calmly explain how they have been suffering are dismissed because “if they were in that much pain, they’d be more upset.”
And yes, Dusenbery has the research and the personal anecdotes to support all this. These are not isolated issues. These are common and widespread attitudes toward women that keep them from getting the care they need.
It’s infuriating, to say the least.
Dusenbery also shares a significant amount of evidence to show that even what we know about the illnesses that primarily affect women is twisted by misinformation and bias. For example, “early years” of medical studies (we’re talking pre 1990 here) included data only from men. Women of childbearing age simply weren’t part of medical or pharmaceutical research. One reason was that women’s menstrual cycles created a whole lot of extra variables in studies that resulted in “messy data.” This exclusion of women from medical research was taken to such an extreme that even issues such as how hormones affect female reproductive organs were studied in men rather than women (which makes no sense whatsoever). During a time when doctors were prescribing hormone replacement therapy to women in record numbers there had been very few studies of these drugs actually conducted with women (read my close brush with hormone replacement therapy here). In addition, due to ethical restrictions barring pregnant women from participating in medical research, they are actually one of the least studied groups of humans in the world. Until very recently, doctors who treated women with drugs during pregnancy had no research to guide them regarding dosage or safety. So, by protecting pregnant women during the testing phase, they exposed women in clinical practice who had no idea that the meds they were taking had not been tested for them at all.
The gap in medical research doesn’t just exist in the pharmaceutical arena. Studies that focus on illnesses that primarily affect women are hard to get interest in and/or funding for. Chronic fatigue, Lyme, MS, and lupus were first derided as made-up illnesses by women. It took years before these diseases were seriously studied and, even then, sometimes they were only studied because enough men were presenting symptoms to make it a disease of interest. Other illnesses, such as heart disease and heart attacks, were studied so thoroughly in men that it was decades before the medical profession realized that women also had this disease, they just presented it differently. There has been a concerted effort in the past few decades to get the word out to the public and doctors about how female heart attack symptoms are different. Other issues that affect only women such as endometriosis and vulvodynia were (and sometimes still are) largely ignored. Ovarian cancer, dubbed for years as the “silent killer” because of its lack of symptoms until very late stages ended up not being silent at all. When they finally got around to studying it, researchers found that many women with late stage ovarian cancer had been complaining for years of symptoms that their physicians had ignored.
This creates a terrible double bind for women. As Dusenbery writes, “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 (p. 12).”
Some (small) strides have been made in the past 30 years to rectify this issue. More studies are being conducted on women’s medical problems. Government and advocacy groups are putting more money behind finding solutions. However, there still remains the problem that medical knowledge is very slow to change. It’s hard to get new information out to practicing physicians. It’s just as hard to change their minds that new medical knowledge is valid and credible (physicians like their stereotypes as much as anyone). It’s even harder to get medical knowledge updated in medical schools where curricula stay the same for years and textbooks and instructors tend to stick to old tried-and-true methods and ideas (even when those old methods don’t help the general public at all). The years it takes to get new and updated medical knowledge through the educational system is in the double digits.
To top off all this horrifying information, Dusenbery spends a significant portion of the book discussing the prevalence of psychological diagnoses for women. Any time doctors can’t immediately explain a woman's symptoms, she is often labeled with a psychological problem such as “depression,” “anxiety,” “hypochondria,” or simply “stress.” Rather than take the time to figure out what a woman’s symptoms mean, the doctor essentially tells her that the problem is all in her head and sends her home without any support or suggestion of what to do next. Or the doctor sends her to a psychologist, thus passing the problem off on someone else.
What happens is that millions of women live every day with debilitating pain, exhaustion, and illness that has no medical diagnoses. Without a diagnosis they cannot get care, insurance coverage, sick day coverage, or even basic validation. For women of lower economic status who have fewer options for seeing and paying doctors, the reality is even more dire. Conditions such as multiple sclerosis, rheumatoid arthritis, lupus, internal cystitis, migraine, cluster headaches, fibromialgia, endometritis, vulvodynia, ovarian cancer, and chemical intolerances often have overlapping symptoms that are unlikely to be recognized immediately by practitioners. Which means these women are most often diagnosed with a psychological problem which, of course, doesn’t do anything to help their physical symptoms. It can take years before one of these conditions is accurately diagnosed.
The worst problem, in my opinion, is that even once a woman gets a diagnosis for one of these conditions, it doesn’t always make a big difference in their actual quality of life because medical science doesn’t know how to cure them. SOME of these conditions can be managed and a few others can be convinced to go into remission, but very few have cures. Although it is important for women to get a diagnosis for reasons ranging from health care coverage to emotional validation, if medical science can’t actually help them feel better, then they aren’t fundamentally better off than when they started. And of course, medical science doesn’t know the root cause of many of these problems because they don’t believe women’s symptoms to begin with and there’s very little funding going toward understanding them better. It’s a self-perpetuating loop that leaves women sick and helpless.
As Dusenbery writes, “I have to believe that most health care providers simply do not fully appreciate the harm they are capable of causing by doubting or belittling women's symptoms. When medicine denies the reality of your bodily experience, it is a deeply invalidating form of gaslighting: "What can I know if I can't know what I am feeling in my own body?" Wendell writes. "How can I remain connected to a world that denies I am in pain, or dizzy, or nauseated, when I myself cannot deny that I am?" (p. 312)
And here I’ll diverge from Dusenbery’s book and go off on my own for a bit. What infuriates me the most is that the majority of doctors are perfectly willing to accept tests (however flawed) and physical evidence but not women’s own self-knowing. I believe that people (not just women) do know what is going on with them. They know when something is not right. They may need help figuring out what that problem is, but they are perfectly correct in knowing there is a problem.
My other concern is that health care issues actually have multiple causes that create an overall constellation of symptoms. There may be mental AND physical inputs that create the perfect situation for MS to develop. There may be emotional AND physical AND mental beliefs underpinning autoimmune disease. There are even cases of family problems (not just genetic, but energetic) issues cropping up in later generations that need to be resolved. There’s rarely any single cause for any disease, despite the medical profession working so hard to pigeonhole everything into one neat box of cause/effect/solution. The reason this neat package is so attractive is because it is easy to study, diagnose, and prescribe a course of action. It’s comforting for patients and satisfying for doctors (and strokes their ego more than a little bit). Unfortunately, illness can’t be pigeonholed this easily and if you only provide one solution to a problem, you simply can’t help everyone who has their own unique mix of underlying causes.
So where does this leave us? With a lot of barely understood medical issues affecting millions of women (and men) around the world. With a lot of “medical knowledge” that may or may not be accurate because medical science isn’t necessarily asking the right questions or listening to the information they have. For example, the mainstream medical profession believes that the tick-borne bacteria Borrelia burgdoferi causes Lyme. More progressive doctors are admitting that Lyme is often a constellation of pathogens, often (but not always) signaled by the co-infection Borrelia burgodoferi. This means you might not test positive for Lyme, which only looks for the bacteria but still have the illness. Other research is suggesting that the disease is actually not caused by ticks or Borrelia at all, but is the result of several different low-grade infections that could be triggered by a number of causes, one being infected ticks. There are some things about this idea that make sense, but of course we’ll never know if the medical profession can’t put time and creative effort into addressing the problem. Since most long-range Lyme disease is in women (men tend to get acute infections and then move on) there isn’t as much money or impetus behind truly understanding this.
And that’s just the short story behind Lyme. Every one of the conditions mentioned above have long and twisty histories of trying to figure out what is going on and pin the issue down to a single pathogen or dysfunction (if it is studied at all). No one wants to admit that the reality is probably a lot more complicated than we want it to be.
I personally think that the world of alternate health has so much to offer women. In general, alternate health care professionals believe women when they share their symptoms. They are also more aware of the multiple causes that can combine to create a physical condition and have multiple strategies for addressing those issues. The best alternative health care providers encourage patients to seek multiple avenues to healing (even standard medical care) so that they are getting all their needs met. Also, I have found that alternative health care has a much stronger belief in the body’s ability to heal and overcome illness as opposed to standard medical care that often focuses on management of conditions.
I think that women need to be more aware of what the medical system can and cannot offer them. They should demand good care from their doctors and advocate for their own needs. But they may also have to go outside the medical system at the same time to get support in a variety of ways. This isn’t fair or everyone. It makes good care harder for those in lower income brackets and those who don’t have the time or medical knowledge to get help. But if women actually want to get better, I believe that all these avenues need to be followed to find healing.
If you are experiencing symptoms that your doctor is ignoring, know that you are not alone. The medical system fails women in multiple ways. Unfortunately, you are going to have to advocate for yourself if you are going to get the help you need. Here are a few suggestions to get started:
I always tell people to trust their own intuition. If you are getting an answer that doesn’t make sense to you or if you can tell your doctor isn’t actually listening to you, go get another opinion.
Take a guy with you to your appointments. Sadly, Dusenbery talked to many women who discovered that taking a male family member made it much more likely the doctor would listen to what they have to say. It’s humiliating to admit that might be necessary, but if you really need someone in the ER to help you now, then do it.
Get help from multiple sources. Don’t be afraid to ask for help from conventional doctors as well as energy workers, acupuncturists, chiropractors, herbalists, therapists, or whoever your intuition is telling you to get help from. If you can’t afford it, still call around and see if you can find anyone who can give you a hand. I know it is aggravating to pay out of pocket for care when you have health insurance, but if you are really sick then it will be worth it. Trust your gut and seek out the people you need to actually help you feel better.
Learn all you can. Doctors hate it when their patients come in with ideas of what is going on with them and things they want to check. However, you aren’t doing the research for them but so that you can actually get the help you need. Read this book I’ve reviewed. Get on reputable websites and learn all you can. Find women who have experienced what you have and educate yourself as much as you can. Until the medical system can get their act together, you will have to fill in the gaps for yourself.
Being sick is hard work. Not having people believe you are sick is devastating. Don’t go through this alone. Find someone who will have your back, believe what you are experiencing, and help you find the answers you need to get better. You deserve to be healed and live without your illness.
I do energy work and coaching to help you get unstuck and create your best life. Check out my work on this blog or my website.