First, do no harm? Medicine’s sometimes horrific treatment of women

Hippocrates, the founder of modern medicine, believed that women were controlled by their uteruses. The father of modern gynaecology, James Marion Sims, experimented in the mid-1800s on enslaved black women without anesthesia, convinced that they felt less pain than white women. (Until its removal in 2018, his statue stood in New York City's Central Park for more than a century.) Doctors claimed that women's suffrage would cause injury to women's fragile bodies and diminished minds. Such examples cast an abhorrent pall over "first, do no harm".

The history of medicine is every bit as social and cultural as it is scientific, and male dominance is cemented in its foundations. But even the author Elinor Cleghorn, who has spent the past year immersed in the history of women's relationship to medicine, was surprised by "just how conscious and insidious it was", she says. "Biological theories about female bodies were used to reinforce and uphold constraining social ideas about women."

The doctors could tell me what was happening in my body, but they couldn't say why I got systemic lupus or why I, as a woman, am more susceptible to it

Cleghorn's new book, Unwell Women, enumerates a litany of ways in which women's bodies and minds have been misunderstood and misdiagnosed through history. From the wandering womb of ancient Greece (the idea that a displaced uterus caused many of women's illnesses) and the witch trials in medieval Europe, through the dawn of hysteria, to modern myths around menstruation, she lays bare the unbelievable and sometimes horrific treatment of women for millennia in the name of medicine.

A former Oxford researcher with a background in feminist culture and history, Cleghorn meticulously constructs an often enraging framework to evince how and why the patriarchal medical world has been so detrimental to women, especially underserved women and women of colour. And Unwell Women shows how the legacy of disenfranchisement and discrimination persists even today, resulting in the underrepresentation of women in medical trials, prevailing ideas that women’s pain is psychological or emotional, and an inadequate, at times hostile system that’s more likely to offer women antidepressants and tranquilisers than referral for further diagnosis and more targeted care.

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Cleghorn was inspired to write the book after her own experience of being dismissed by doctors for years before finally being diagnosed with systemic lupus, a difficult-to-pinpoint disease that is nine times more prevalent among women than men. (The pop star Selena Gomez has spoken candidly about her struggles with the complex, incurable disease.)

“I was trying to get to grips with why none of my doctors could really explain much about it. They could tell me what was happening in my body, but they couldn’t say why I got it or why I, as a woman, am more susceptible to it. I started mining through medicine’s history and finding women in case studies who felt really similar to me.” (Cleghorn began writing the book during lockdown, relying on online medical archives and the Wellcome Library’s extensive digital collections. “Luckily for me, the men who wrote about women’s bodies like to write a lot about them,” she chuckles.)

There's a quiet radicalism in using women's knowledge about themselves to change the culture of medical inequality

These “kindred women” galvanised Cleghorn to learn about other chronic, incurable diseases that affect more women than men. One such illness is endometriosis, which affects an estimated one in 10 women globally and still takes, on average, between seven and nine years to be diagnosed. Although it was named in the 1920s, all of its diagnostic mysteries remain today, Cleghorn notes. “Endometriosis was described by one doctor in the 1920s as a riddle of etiology, and we still don’t know what causes it. Tracing that lack of progress over 100 years was a real ur-example of how little progress we have made. I wanted to go back and figure out why so many question marks still hover around these conditions and where these gaps, injustices and discriminations actually came from.”

Into the breach has rushed today’s booming wellness industry, which Cleghorn notes profits most off women and whose popularity is linked to the prevalence of such baffling diseases. “The industry knows that women with these health conditions are being let down by traditional mainstream medicine, so it tailors itself to being caring, listening, seeing you as an individual. A lot of language in the wellness industry seems frighteningly 19th century to me, with its conditions and syndromes.”

Throughout the book, Cleghorn underscores the compounding effects of race, access and privilege on gender. “In the UK, we’ve been facing up to our failings around the health of black, Asian and ethnically diverse women, who experience far greater health disparities than white women, especially in the area of reproductive health,” she notes. But she is dismayed by the British government’s “very placatory” response. “It’s infuriating and shocking that there’s not more money, strategy, funding, research and urgent prioritisation of issues such as black women’s maternal mortality.”

It's probably the first time in history that women's subjective experiences and voices are used. That's an important place to begin because women are not a monolith

Running parallel to this history of frustrations and injustices is an empowering alternative history of the resistances and beneficial contributions of women. She cites the pioneering American physician Mary Putnam Jacobi, who in the 1870s disputed the idea that women required rest during menstruation. "Male physicians at the time were using just anecdotes and conjecture, but Putnam Jacobi employed subjective knowledge from women to soundly disprove them. There's a quiet radicalism in using women's knowledge about themselves to change the culture of medical inequality."

That is where Cleghorn places hope for the future, with a concluding chapter titled Believe Us. Women have long been thought of as unreliable narrators of their own bodies. Although modern medicine now allows women to educate themselves about their bodies (a luxury forbidden for centuries) and has provided women with opportunities to join the medical community, Cleghorn believes understanding women’s health remains a back-burner issue.

But the start to a solution is easy, she says. “Prioritising women’s voices is really important. I don’t feel like this is all a big patriarchal conspiracy – implicit, unconscious bias is so ingrained, even in the setup of doctor-patient interaction. When I am given the opportunity to speak freely, without feeling rushed or judged, I feel like I’ve received better care.”

The UK government’s recent women’s health strategy, in which it solicited evidence from women about their treatment by the healthcare system, is groundbreaking, she notes. “It’s probably the first time in history that women’s subjective experiences and voices are used. That’s an important place to begin because women are not a monolith.”

Cleghorn hopes her book helps anyone who's had a difficult or painful health experience "feel validated and valued, because this can be so isolating, so demoralising and dehumanising. But having an illness is also meaningful in the sense that you're part of this production of very important knowledge. I hope readers can situate themselves in this history that hopefully now we can start to change." – Guardian

Unwell Women, by Elinor Cleghorn, is published by Weidenfeld & Nicolson