NO SEX PLEASE, WE’RE DOCTORS
For decades women have suffered misdiagnosis and even death at the hands of a medical system that doesn’t recognise their differences, writes Caroline Criado Perez
It took 12 years for Michelle to receive a diagnosis. “I was about 14 when I first started having symptoms. I was too ashamed to go to a doctor for it.” She kept her urgent, painful, frequent, sometimes bloody, bowel movements a secret for two years, until one night it hurt too much to hide anymore. “I couldn’t move from the foetal position on my bathroom floor. I was afraid I was dying.”
She was 16. Michelle’s parents rushed her to the emergency room. A doctor there asked her (in front of her parents) if she could be pregnant. No, she couldn’t be, Michelle explained, because she hadn’t had sex, and in any case, the pain was in her intestines.
“‘They wheeled me into an exam room and without any explanation, placed my feet into stirrups. The next thing I knew, a large, cold metal speculum was crammed in my vagina. It hurt so badly I sat up and screamed and the nurse had to push me back down and hold me there while the doctor confirmed that indeed, I was not pregnant.” She was discharged with “nothing more than some overpriced aspirin and the advice to rest for a day”.
Over the next decade Michelle sought help from two more doctors and two (male) gastroenterologists, both of whom told her that her problems were in her head and that she needed to be less anxious and stressed. At the age of 26 Michelle was referred to a female GP who scheduled her for a colonoscopy. It revealed that the entire left side of her colon was diseased. She was diagnosed with both irritable bowel syndrome and ulcerative colitis. “Funnily enough,” Michelle says, “my colon is not in my head.” As a result of the extended delay in receiving a diagnosis and treatment she has been left with an increased risk of colon cancer.
It’s hard to read an account like this and not feel angry with the doctors who let Michelle down so badly. But the truth is, these are not isolated rogue doctors, bad apples who should be struck off. They are the products of a medical system which, from root to tip, is systematically discriminating against women, leaving them chronically misunderstood, mistreated and
misdiagnosed. It begins with how doctors are trained. Historically it’s been assumed that there isn’t anything fundamentally different between male and female bodies other than size and reproductive function, so for years medical education has been focused on a male “norm”, with everything that falls outside that designated “atypical” or even “abnormal”.
References to the “typical 70kg man” abound, as if he covers both sexes. (As one doctor pointed out to me, he doesn’t even represent men very well.) When women are mentioned, they are presented as if they are a variation on standard humanity. Students learn about physiology and female physiology; anatomy and female anatomy.
“The male body is anatomy itself,” concluded social psychologist Carol Tavris in her 1992 book The Mismeasure of Woman.
This male-default bias goes back at least to the Ancient Greeks, who kicked off the trend of seeing the female body as a “mutilated male” body (thanks, Aristotle). The female was the male “turned outside-in”. Ovaries were female testicles (they were not given their own name until the 17th century) and the uterus was the female scrotum.
The reason they were inside the body rather than dropped out (as in “typical” humans) is because of a female deficiency in “vital heat”. The male body was an ideal women failed to live up to. Modern doctors of course no longer refer to women as mutilated males, but the representation of the male body as the human body persists.
A 2008 analysis of a range of textbooks recommended by 20 of the “most prestigious universities in Europe, the United States and Canada” revealed that across 16,329 images, male bodies were used three times as often as female bodies to illustrate “neutral body parts”.
AUTOIMMUNE DISEASES affect about 8 per cent of the population, but women are three times more likely to develop one, making up about 80 per cent of those affected. We don’t fully know why, but researchers think it might be down to women being the child-bearing sex: the theory is that females “evolved a particularly fast and strong immune response to protect developing foetuses and newborn babies’, meaning that sometimes it overreacts and attacks the body.
The immune system is also thought to be behind sex-specific responses to vaccines: women develop higher antibody responses and have more frequent and severe adverse reactions to vaccines; a 2014 paper proposed developing male and female versions of influenza vaccines.
Sex differences appear even in our cells: in blood-serum biomarkers for autism; in proteins; in immune cells used to convey pain signals; in how cells die following a stroke. A recent study also found a significant sex difference in the “expression of a gene found to be important for drug metabolism”. Sex differences in the presentation and outcome of Parkinson’s disease, stroke and brain ischaemia (insufficient blood flow to the brain) have also been tracked all the way to our cells, and there is growing evidence of a sex difference in the ageing of the blood vessels, “with inevitable implications for health problems, examination and treatment”.
In a 2013 Nature article, Dr Elizabeth Pollitzer points to research showing that male and female mice cells have been found to respond differently to stress; that male and female human cells “exhibit wildly different concentrations of many metabolites”; and to “mounting evidence” that “cells differ according to sex irrespective of their history of exposure to sex hormones”. There are still vast medical gender data gaps to be filled in, but the past 20 years have demonstrably proven that women are not just smaller men: male and female bodies differ down to a cellular level. So why aren’t we teaching this?
Most early research into cardiovascular disease was conducted on men, and women continue to be under-represented, making up only 25 per cent of participants across 31 landmark trials for congestive heart failure between 1987 and 2012.
Because of their routine exclusion from clinical trials we lack solid data on how to treat pregnant women for pretty much anything. We may not know how a disease will take hold or what the likely outcome may be, although the WHO warns that many diseases can have “particularly serious consequences for pregnant women, or can harm the foetus”. Some strains of influenza virus (including the 2009 H1N1 swine flu virus) have “particularly severe symptoms during pregnancy”.
It is of course understandable that a pregnant woman may be reluctant to take part in medical research but this doesn’t mean that we have to just throw our hands up in the air and accept that we know nothing: we should be routinely and systematically tracking, recording and collating pregnant women’s health outcomes. But we aren’t — not even during pandemics: during the 2002 Sars outbreak in China (Severe acute respiratory syndrome), pregnant-women’s health outcomes were not systemically tracked and consequently, the WHO points out, “it was not possible to fully characterise the course and outcome of Sars during pregnancy”. Another gender data gap that could have been so easily avoided, and information that will be lacking for when the next pandemic hits.
The failure to include women in medical trials is a historical problem that has its roots in seeing the male body as the default human body, but this traditional bias was radically enhanced in the 1970s, to the great detriment of women’s health, following one of the biggest medical scandals of the twentieth century.
In 1960 doctors began prescribing thalidomide to pregnant women who suffered from morning sickness. The drug, which had been available as a mild over-the-counter sedative in many countries since the late 1950s, was considered safe because its developers “could not find a dose high enough to kill a rat”. But while it didn’t kill rats, it did affect foetal development (something the manufacturers in fact knew as early as 1959). Before the drug was taken off the market in 1962, more than 10,000 children had been born around the world with thalidomide-related disabilities. In the wake of the scandal, the US Food and Drug Administration (FDA) issued guidelines in 1977 excluding women of childbearing potential from drug trials. This exclusion went unquestioned.
The acceptance of the male norm went unquestioned. The male norm continues to go unquestioned by many today, with some researchers continuing to insist, in the face of all the evidence, that biological sex doesn’t matter.
One public health researcher revealed that she had received the following feedback on two different grant applications: “I wish you’d stop with all this sex stuff and get back to science,” and “I’ve been in this field for 20 years and this [biological difference] doesn’t matter.”
It isn’t just anonymous notes, either. A 2014 op-ed published in the journal Scientific
They are the products of a medical system which, from root to tip, is systematically discriminating against women, leaving them chronically misunderstood, mistreated and misdiagnosed.