Dr. Elinor Cleghorn didn’t publish her book, Unwell Women, just for her own sake. In fact, selfishness doesn’t seem like a quality that she possesses in great quantities. If anything, she grasps the exact opposite; a relentless desire to make people feel less alone. Cleghorn oozes sincerity, which probably allowed her to not only pursue her own diagnosis but share the history behind why so many other women struggle to get a proper label for their ailments.
Her kindness remains evident in the kinship she found with other unwell women throughout history as she researched for her book of the same name, and her desire to tell their stories and the brutality they suffered under the medical establishment. Her earnest quest to keep other women and people born female from suffering the same physical, and mental, anguish she experienced due to the legacy of under-research in women’s medicine is exactly what makes Unwell Women so informative, yet heartbreakingly human.
Cleghorn shares a bit of unique insight into her journey from unwell woman to author, and her hope for a world better served by the medical system.
How did your own journey for answers in regards to your health lead to the writing of this book?
I was diagnosed in 2010 with lupus with a form of lupus called Systemic Lupus erythematosus, which is the most common form of lupus across the world, and it affects 90 percent more women than people born female than men. And it’s an autoimmune disease that is presently incurable, really difficult to diagnose.
And I was diagnosed with this in 2010 after developing a heart condition that at first was really mysterious. So I went to the hospital. I was in a cardiac ward for 10 days and they were kind of trying to figure out what was happening. I had fluid around my heart. And then eventually a rheumatologist who’s a specialist in autoimmunity looked back through my notes for the right blood work, made the right diagnosis.
But I just had my second baby and I had a really complicated pregnancy in which he had a heart condition while I was pregnant. And it turned out that the same process in my immune system that had damaged my baby’s heart was now damaging my heart.
So compared to the average in the UK and in the US, which is between four and six years for a diagnosis, this was quite swift. But for about seven years before my diagnosis, I had what I now understand are all the characteristic symptoms or many of the characteristic symptoms of lupus.
I would go to my GP’s or my doctors where I was at college. And every time I went and said, look, I’m having these pains, I was told a version of, “you’re a woman, therefore, this isn’t real.” So I was told a version of this story or, “well, you’re hormonal, so there’s nothing we can do about you, you’re anxious, your work stressed.”
I mean, really kind of ridiculous things.
I think I internalized a lot of this feeling that I was just kind of a young woman who was kind of inventing this stuff in my head like I was kind of exaggerating. And so I began to really internalize the messages that I was being given by my doctors. So the diagnosis was a real kind of moment of awakening and realizing that I was right and I did have this kind of intuition that something was wrong and I was right to sort of pursuing it.
At that time, I wasn’t really that conscious of the fact that there is a gender gap in our health care that women do. I kind of knew anecdotally from my own experience, from friends’ experiences, that women had a much harder time trying to convince their doctors that something was really wrong. But I didn’t really know that this was a systemic historical and cultural issue. So as I kind of came to terms with being on well, being chronically unwell, I started to look into the history of my disease, because there were so many things my doctors can tell me about it, even though they could give me the right medication and they can monitor me, do my blood work, they couldn’t say why I got it.
And I just thought, you know, how are we grappling in 2010-ish with these issues?
I was a historical researcher at the time looking at feminist visual culture. So it was kind of in my interest to sort of it was like my kind of impulse anyway. To understand things was to look into history.
And it just seemed that although, you know, medicine and medical science have moved on exponentially and 100, 200 years later we were still grappling with the same attitudes towards women’s pain and other symptoms, especially when they’re not immediately diagnosable, that we were in the present. And I really wanted to tell these stories and sort of do justice to these people, these women who I felt like were part of my history. I felt a sort of kindred-ness with them.
If they felt like my Kindred’s like this is my sort of genealogy, this is my history, and that was how they sort of evolved or the thinking behind the book began to sort of germinate. We were hearing more and more and more stories in the press, in feminist media, in even in TV shows and films about how women are suffering and how women’s suffering is delegitimized by medicine. And I thought now’s the right time to do it.
How did your relationship with your body change as you sought a diagnosis?
I think it was really shaming. I think in my years being a young woman, it was a very different culture around bodies, pain, and shame. And I think that even like a decade ago, we didn’t have this culture of sort of reclaiming our pain and finding meaning in it, and also speaking truth to these systems of power that diminish us and make us ashamed.
And I certainly didn’t grow up in a kind of culture where any sort of weakness was something that we spoke about or celebrated. It did feel really isolating and it felt like I couldn’t trust my feelings about my body or what I thought was happening in my body. It was like a massive disconnect between just kind of having to second guess myself and then realizing, I think not until years afterward, how much of that messaging I had internalized because I was thinking, “yeah, well, I must be hysterical, I must be overreacting.”
And that in itself kind of breeds on itself. It feeds itself. And so even though the diagnosis was a shock and it was in many ways very difficult to come to terms with because I didn’t have a clue how it might affect me, how it sort of manifested with the heart condition, which was nearly catastrophic. It was life-threatening, and I was frightened that something like that would happen again. But it was also this relief and this kind of eye-opening moment where I was like, “no, it’s not me that’s broken, it’s not my body that’s untrustworthy.”
It’s the system. It’s this system of power and how it’s embedded within cultural and social attitudes about especially, I think, younger women’s expressions of pain. It’s actually kind of rigged against us.
And that’s how I think I felt began to feel more like my body was my own and like my body was kind of I was a reliable narrator by understanding that it wasn’t just me, that there were hundreds, thousands, millions of women across the world who had had such similar experiences negotiating chronic illness, health conditions, perimenopause, issues with a surgery, with maternal care, with maternity care, and that we were all sort of victims of this system.
What was your most shocking discovery as you conducted research for the book?
I think some of the most barbaric and brutal things that I came across were really around nineteenth-century gynecology. And the idea that when gynecology was becoming professionalized, kind of a gentlemen’s discipline of medicine in the 19th century, women were essentially sort of, in some cases literally, being experimented on.
And this sort of notion during 19th-century gynecology that women were sort of reduced to their reproductive organs in a really sort of violent and brutalizing way. And so from that, as well as the awful, dehumanizing experiments that someone like [James Marion] Sims was performing, you had a culture of gynecology in the U.K. in which more and more unnecessary procedures were being sort of perfected, things like the ovariotomy which can sometimes be a life-saving surgery, but the justification for performing it [was] by sort of connecting women’s ovaries to their minds.
So anything that was sort of upsetting them [women], usually a social problem not a bodily one, was enough justification to put them through something really harrowing.
It was always this stuff that was a complete misbelief that either ended up justifying procedures like surgeries or helped cement knowledge that we’re still grappling with today [that] obscured real progress.
The accepted belief that the healthiest state for a woman was being pregnant, it was just not challenged. It’s like unchecked power was just allowed to still be part of the dominant knowledge. And then what you inherit now is this sort of terrible legacy of misinformation and lack of research, because people are like, “oh, it is because they’re women who don’t have babies. It’s their fault.”
You purposefully included the plight of women of color in Unwell Women. What made you decide to do this when so many other books hadn’t?
There’s a sort of elitism built into a lot of medical history. Because you had to pay to see a doctor, a lot of those narratives of hysteria focus on white upper-middle-class women because they were the people that these doctors were seeing. So they got elite doctors seeing elite patients and creating very particular ideas about women’s bodies and minds, and it was very socially entrenched. But that’s not the story.
It’s not enough to say, “all women are dismissed and treated poorly.” Yes, maybe that is true that our gender does stack against us if we’re born female, rather, if we’re femme presenting, that stacks against us. But there are other issues as well that, as a white woman, do not come into it when I’m having a conversation with my doctor. Also, when you look back at these histories, you see that in many of the moments in which white women have benefited from medical advances, especially in the arena of public health, things like contraception, things like safe abortion, even vaccination programs, there’s always another history of who has been valued by that system of power. This intervention is for the benefit of these [white] people, but it’s at the expense of people of color.
It wouldn’t have been ever what I wanted to do to tell a story that put women of color as like a little paragraph or like I kind of just gestured towards other histories, I wanted to show that, yes, we can celebrate something like the contraceptive pill for its opportunities and advantages in women’s liberation, but we cannot just blindly go around and say that without understanding the genesis of the pill was and was wrapped up in racism. And, I think, to do feminism properly is always about holding these truths and talking about who’s been valued.
What do you want your readers to take away from Unwell Women?
I think from knowing about this, we can change. We can hopefully learn how not to repeat the mistakes of the past. Facing up to the past is how you learn from your history and how you learn what not to repeat. And all too often, we like to forget our histories. I think especially in colonial countries like ours, we like to kind of whitewash those histories and go, “no, it’s all progress and it’s all marching forward.” And it’s not because the more you ignore where you’ve come from, the more you’re likely to repeat.
And I really do think that there is power in the ones of us who have the energy and the access and the ability to advocate for ourselves, who can also advocate for others. And I really hope that it can contribute to a conversation in which people feel less alone in their experiences, whether it’s with trying to get diagnosed with a chronic condition, whether it’s with a trauma related to a medical procedure or the way that it might have been treated during surgery or just an encounter with a health professional, a difficult pregnancy.
I do feel like the culture around medical mistreatment is changing. A reader said to me recently that they had “energy privilege” because they were fighting this medical malpractice suit here in the U.K., and I love that term so much because it’s right. It’s like, if you can do it, if you’re able to speak out about your body, your pain, about what it’s meant to get a diagnosis, I think it’s an incredibly brave but also incredibly inclusive gesture.
I would love it if it was written in a medical curriculum because I don’t honestly know how much of these histories, especially about medical racism, medical misogyny, and I don’t know that they’re taught in this way. Maybe they’re taught in terms of how biases affect patients, but not where those biases come from, what they’re interested in. So I’d love, I don’t know if it’ll happen, but I think maybe more broadly, if that if those histories were addressed.
We can kind of meaningfully change our actions and how we create a culture around our bodies in our house, but we also need the system to change.
We need to be able to not put people through that kind of trauma and that expense in the states. Just that time away from your life while you fight for yourself, you know, it shouldn’t fall to anyone, especially any unwell person, to change the system.
And I do feel like the more we draw attention as people who come with voices to these issues, the more systemic change hopefully can be forced.
featured images via elinor cleghorn