Today is International (working) women’s day, so what better day to talk about a book that left a huge impression on me: Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery.
When I first became sick, I noticed that a lot more women than men seemed to have ME – in fact, four times as many women as men. So, from the beginning, I always had an inkling that gender might be one of the reasons why research into ME is so underfunded. But at that point, I had not really explored the effect of gender on medicine or considered the possible biases at play. But I was aware of the difference that gender still plays in almost every walk of life.
It wasn’t until I discovered the ‘Grand Unified Theory of Female Pain’ that I really considered the difference in the ways male and female pain are treated – and the implications of this on everything. In that article, the author argues that women’s pain is taken less seriously than men’s, and she traces this trend through history, linking it to hysteria. The image that women are more nervous and hysterical has been around for centuries, and still seems to have an impact on medicine today.
And initially, this seems to fit with my experience with the medical system. I have had extremely painful periods for a very long time, and when I went to the doctors about it, they gave me contraceptives, to which I reacted badly; and when that didn’t work, they told me it was normal – no further investigations, no help with the pain, just an acceptance that for a couple of days a month I would be pain-ridden and bed bound.
When I was about 17, I had my appendix removed under emergency surgery. At A&E, the doctors were adamant that I was being dramatic about having period pains… until they realised that I actually needed immediate surgery. I had not been overreacting to the pain, which they afterwards acknowledged must have been acute.
A couple of years ago, on New Year’s Eve, I had a strange seizure-type thing, where, despite feeling calm, I was unable to stop shaking and my heart rate was all over the place. When I went to A&E, the doctor was sure it was a panic attack, took my bloods, and sent me home with no further tests. He didn’t even write it up for my GP to see. I have numerous examples of my pain not being listened to, even excluding the fact that it took me five years of being incredibly sick to get a diagnosis of ME and POTS – which to this day my GP doesn’t fully recognise. Yet, as one person, there is no way for me to tell if these are common experiences, or gendered experiences – or a little bit of both.
In Doing Harm, Maya Dusenbery lays out both the statistics and arguments suggesting that the medical system does in fact have huge gender biases harming women, and even more so black women and trans people – making it seem as if my experiences were in fact primarily because I am a woman.
In Doing Harm, Maya Dusenbery goes painstakingly through many different elements of the medical system: research, funding, GPs, doctor training, and different categories of illness, and she very clearly lays out the roles played by gender in each of these systems. In detail, we learn how the medical system has been set up to cater for and treat men as the norm, leaving woman (and even more so trans people) behind. Dusenbery also very thoroughly discusses the intersections of race, class, fatness in medical treatment, throughout the book, bringing out statistics that demonstrate the disparity between treatment of white and non-white women.
As an example, Dusenbery talks about research into new medicines. In testing centres, women are very rarely used as research subjects when testing the safety of a medicine. The reason for this is that, due to their menstrual cycle, they have a greater fluctuation of hormones in their bodies, which adds into the study another variable to monitor. Scientifically it sounds logical, therefore, to use only men; however, given that these fluctuations exist in the real world, surely women should be tested upon. Whilst in some countries there is an increased effort to involve women as test subjects, from experience, my partner has been a test subject for several medical trials over the past few years and has never attended one involving a woman test subject.
Where I find this book most interesting, however, is where Dusenbery traces, in depth, the history of hysteria. According to Dusenbery, this concept can be traced back to the Ancient Greeks, who believed that women became sick if they did not get pregnant early enough. This transformed into hysteria, which was the common diagnosis for any woman of a certain class who became sick. Later, Freud, once again, blamed women’s illnesses on their mental health; and nowadays, this has morphed into psychosomatic illness: physical manifestation of what is really a mental illness. This label is often given to women, despite their reporting a wide variety of symptoms.
Just to test this claim myself, I ran a test. In a totally unscientific poll on my Instagram account, 45 out of 53 people asked, said that before they received their actual diagnosis for their illness, they were diagnosed with a mental health issue or a psychosomatic illness. And the illnesses with which they ended up being diagnosed, ranged from endometriosis and MS to fibromyalgia and ME. So, it seems that misdiagnosing women with mental illness is still common. Of course, by trying to summarise an entire chapter in two paragraphs I have done a massive injustice to the painstaking and detailed research that Dusenbery has undertaken to draw out this history – but hopefully it will pique your curiosity.
At times, I will admit this book is a little dry, and almost too detailed. It runs through a huge number of illnesses, from heart failure to chronic Lyme’s disease, explaining how gender plays a role in the knowledge-base, diagnosis, and treatment of an illness. I felt, at some points, that I did not need to know the specifics of every illness, nor the specific biological workings. However, despite that, I couldn’t stop reading, as the facts are so interesting and align so fully with my own experience as a woman with an underfunded, chronic illness.
Doing Harm by Maya Dusenbery was truly eye-opening, even though I consider myself fairly knowledgeable about gender bias and discrimination already. There is such a plethora of detailed information about which I had no idea – and will at some point try to write about in separate blog posts. I would highly recommend this book to anyone in medicine, or really anyone who is interested. It provides such a clear, and fact-based account of gender disparity in medicine. And if you are a woman, it could also possibly save your life or sanity.
