Q&A with Dr Elinor Cleghorn, author of Unwell Women: A Journey Through Medicine And Myth in a Man-Made World

Unwell Women, by feminist cultural historian Dr Elinor Cleghorn, was published on 10 June and explores gender bias, medical misogyny and myths throughout the history of medicine – from Ancient Greece all the way through to her own experiences, in the present day, of living with autoimmune disease lupus.

Elinor spoke to Hysterical Women about the murkiest corners of medicine’s sexist history, what we can learn from it, and what it means for those of us tackling the gender health gap today.

SG: How did the book come about?

EC: My PhD and my academic background is in feminist art history but, after I got ill, I started becoming more and more interested in the history of medicine. My postdoc was a medical humanities and arts project at Oxford, so over the years I started to formulate ideas around that. Initially, I actually wanted to write a book about the history of autoimmunity, which sadly didn’t go anywhere, but I’m glad in a way because that was the germ of the idea that became this book.

You cover centuries worth of medical history in the book. Were there any particular stories that struck a chord with your own personal experiences?

The parts of history that really struck a chord for me were definitely around the history of lupus, and specifically the women who had lupus in the past. There are a couple of women whose case studies I came across. One was from 1955 and one was from 1902, and the case study from 1902 didn’t actually make it into the book.

She was a young woman named Grace who was diagnosed with lupus when she was 18. She’d had years of the kind of symptoms I’d had, rheumatic pain, migraines, and what we would now understand as mental health issues. Grace had mysterious and untreated symptoms for most of her teens, and she eventually was admitted to the dermatology department at what was then the London Hospital, because she developed the characteristic lupus rashes on her face. Very sadly she died in that hospital from what we now call an autoimmune type of pneumonia. She had inflammation around her lungs, but she also had it around in the pericardium in her heart, which was the symptom that got me diagnosed.

I found that case study quite early on after my diagnosis, and I just thought there were so many parallels between our experiences. There’s this idea that your body’s trying to speak these languages and communicate, but it’s not that the disease doesn’t exist, it’s just that no one knows how to translate those symptoms into the kind of knowledge needed to save a life. This just made me begin to think about what it must have been like for other women who have been through this at different points in history.

These incredibly striking parallels between our experiences are separated by exponential amounts of medical and scientific progress, but yet there’s still the fundamental principle that a woman’s body manifests symptoms which don’t speak to the kind of objective diagnostic model that wants answers and wants them quickly. Not only that, but wants answers that fit into this male-dominated paradigm of illness and language.

Instead of being properly treated and diagnosed in her lifetime, and having her life saved, Grace probably just suffered all those symptoms with no help at all, and probably a lot of stigma. That was what really motivated me to write it, because I felt a sort of kinship with these characters. In a sense too, their experiences also contributed eventually to the knowledge that saved my life. In the 1950s, when the concept of autoimmunity was burgeoning in medicine, case studies like hers would have been part of that accumulation of knowledge.

Were there any particular attitudes or beliefs from history that really shocked you?

I was already aware of Isaac Baker Brown in the 19th Century, and the scandal around cliterodectomies (removal of the clitoris) as an awful moment in medical history. That was a point in medical history where a villain had his downfall; there was very much a villain narrative around him.

Although that was of course shocking, what was more shocking to me was the way that similar procedures being done around the same time were couched in the context of care, the closest being the use of ovariotomies – surgery to remove the ovaries. These were being performed in the UK and the US to advance surgeon’s reputations, because it was a radical and risky surgery, and it carried a woefully high mortality rate.

There were some instances where doctors and surgeons were performing this and it was genuinely saving women’s lives, by removing previously inoperable cysts or tumours on the ovary. But this surgery was also being exploited by surgeons and gynaecologists as a treatment either for menstrual health – symptoms of what we would now understand as endometriosis and similar diseases – or for ‘hysteria’ and emotional instability.

The idea that a woman could be subjected to a brutalising and highly risky operation because her behaviour and her temperament didn’t adhere to the ideals of the time genuinely shocked me. The paternalism behind the narrative of protection used to justify some of those procedures is just baffling.

Why do you think it’s so important to put women’s healthcare experiences today into this historical context?

I think what we’ve inherited today, in terms of problems in the healthcare system, is partly because we have systematically ignored women when they speak about their bodies and when they testify to their own experiences. The culture of disbelief has been so profound and medicine, as a system of power, hasn’t incorporated women’s own subjective knowledge and awareness about our bodies into authoritative medical discourse. It’s completely absent.

I always think know how much more would be known today about the complex chronic diseases that predominantly affect women and people assigned female at birth if, when a woman had recounted pain in the 19th century, that pain was not immediately pathologised? What if that pain was actually investigated properly as a sign of disease, and was incorporated into medical knowledge?

As women our experiences, feelings and intimate thoughts are disavowed by patriarchal forms of knowledge that want presumed facts and objectivity. Actually, knowledge about the world comes from treating people as humans and listening to them.

What can we learn from our medical history?

I think patients can learn that anything that happens in a doctor’s surgery that traumatises you, as the narrator and advocate of your own body, is not your fault. It’s so systemically ingrained, not just in that doctor-patient dynamic but in the knowledge that informs how diagnoses and treatment are delivered.

Before I was diagnosed with lupus, when I was really unwell in my 20s, I just internalised this idea that I was making it up, that there was something broken in me that meant I didn’t know the truth about all this. History tells us that the way you feel is valid. You are the most reliable narrator of your body’s experiences, even if that situation in the medical context makes you feel like you’re not.

What we really need is funding, research specialist clinics, commitment to reducing diagnostic times. No woman is responsible for changing the system, especially no sick woman.

You can find Elinor on Twitter and Instagram @ElinorCleghorn

Buy Unwell Women at Bookshop.org*:

*Affiliate link – Hysterical Women is not for profit; the commission I receive from any sales helps to fund paid guest posts by writers from marginalised and under-represented backgrounds.