“I always suspected my diagnosis was wrong,” Rebecca told me, “but doctors weren’t interested in investigating. I’d have weird symptoms and they’d sort of be written off as just one of those funny things that happen to people like you.” By “people like you”, her doctor meant patients with chronic fatigue syndrome. It’s a diagnosis of exclusion: you get it when you’re exhausted and in pain, but doctors have been unable to find anything physically wrong with you.
However, as it turned out, there was something physically wrong with Rebecca. In 2017, 25 years after she first received her misdiagnosis of chronic fatigue syndrome, she was diagnosed with endometriosis, a chronic condition in which uterine tissue grows outside of the womb, causing extreme pain. Six months later, she received the additional diagnosis of relapsing-remitting multiple sclerosis. She is now, finally, receiving treatment for both conditions.
Rebecca’s experience might be extreme, but it isn’t unusual. Women spend an average of seven to nine years in pain before they are diagnosed with endometriosis, according to Annalise Weckesser, senior research fellow in reproductive health at Birmingham City University. In fact, she tells me, it often isn’t until a woman is found to be infertile that she receives a diagnosis. Pain alone doesn’t seem to be enough.
Pain is subjective, and the trouble is that women are not considered credible witnesses to their own bodies. Across the field of medicine, from heart disease to brain cancer, women are more likely to receive delayed and missed diagnoses than men. “Essentially what we have is a health-care system that gaslights women – that doesn’t believe women and their reports of pain,” says Weckesser.
Pain “can be poorly understood”, says Ed Keogh, deputy director of the Bath Centre for Pain Research, because we haven’t done enough work on it. Also, we simply know far less about the female body than the male one. Until very recently female humans, animals and cells were largely excluded from clinical research, with male bodies taken to represent humanity as a whole. The two most often cited reasons are that women are harder to recruit for trials, and that they could get pregnant (experimental drugs could harm the foetus). However, women are not pregnant for their entire fertile lives and these are hardly satisfactory explanations for the exclusion of female animals and cells.
Then comes the next excuse: the hormone fluctuations across the menstrual cycle can disrupt test results. This would only be an acceptable excuse if the resulting drugs were never destined to be used in the real world, where women – with menstrual cycles – will take them. To give one example, there are drugs that are intended to reduce heart rhythm abnormalities, but in some patients they instead exacerbate them. Women make up two-thirds of this group, and the risk is highest during the first half of the menstrual cycle.
This matters. While the conventional wisdom is that heart disease is a male disorder, it is the number one killer of women in both the US and the UK. Since 1984, records show that women are more likely to die following a heart attack than men. So: what price women’s lives?
The cost argument for excluding women from clinical trials is particularly absurd when the disorder being researched primarily affects female patients.
Women make up the vast majority of chronic pain patients and therefore, unusually, the majority of participants in clinical pain trials. Yet for many years, the preclinical pain research was done almost exclusively on male cells and animals. Unsurprisingly, these results were not reproduced in human trials. How much money has been wasted? Probably quite a lot. “There is now very good evidence for differences between men and women in pain,” says Keogh. However, he adds, there is “still a lot more to find out”. We do not, for instance, know much about the impact of women’s menstrual cycles on their pain susceptibility, which is hardly surprising given the tendency to treat women’s cycles as a variable to control for rather than a distinct phenomenon to analyse.
We also don’t know whether pain medication works as well in women as it does in men. There are reasons to suspect that it does not. Ted Price, of the University of Texas at Dallas, is the lead author of a recent animal trial that discovered a pain treatment which was “extraordinarily specific for men”. He believes that in the future, it is “fairly likely we’ll want to make male- and female-specific drugs for chronic pain”.
It is hard not to see the failure to take pain seriously as a synecdoche for how medicine (mis)treats women overall. Andrew Baranowski, president of the British Pain Society, tells me that an estimated 43 per cent of adults live with a chronic pain condition. So this is not a niche concern, and yet it is treated like one: he adds that medical students receive less training in pain management than veterinary surgeons.
The “gender data gap” in medicine continues a dark legacy of treating women as hysterical and irrational, and their bodies as strange, unknowable deviations from a male norm. It has fostered a hostile health-care environment for women where disbelief is compounded by a lack of knowledge, and vice versa.
The gap must be closed, and all future research must recruit equal numbers of men and women, unless there is a compelling reason not to do so. And we must consider the idea that when a woman says she is in pain, she might just be telling the truth.
Caroline Criado Perez is a feminist writer and activist. Her forthcoming book “The Other Half” examines the gender data gap