Elinor Cleghorn on the Inspiration Behind Unwell Women

I became an unwell woman in 2010, when I was diagnosed with a chronic disease called Systemic Lupus Erythematosus (SLE). I was thirty and had recently given birth to my second son after a complicated pregnancy. My diagnosis explained why my immune system had damaged the function of my unborn baby’s heart. It also explained the pain, swelling, nausea and mental health issues I had suffered since my early twenties. Lupus had probably been lying latent in my body for years, my consultant told me. But what they couldn’t tell me was why I had developed this disease in the first place, or how it might affect me in the future. Lupus, like most autoimmune diseases, is uncertain and unpredictable. It manifests in many different symptoms that wax and wane, and its course is completely unique to each person who has it. Lupus also affects 90% more women than men, but medicine does not know the exact reasons why.

From a clinical perspective, my disease was unknowable and elusive. But, as I gradually accepted the nature of my diagnosis, I began to understand the history of my body, and my life, in a new light. The pain that doctors had previously dismissed as ‘hormones’, or ‘women’s troubles’, or ‘work stress’ were my body’s way of communicating in a language no-one tried to translate. The aches, exhaustion, fevers and palpitations that I had come to believe were all in my head were, in fact, all-too real. I was diagnosed because a rheumatologist took the time to look and listen rather than judge and assume. They deciphered the hieroglyphs embedded in blood-work results and rheumatoid factors and inflammation markers, and from there I could retrace my steps.

Being unwell didn’t change my identity, but it was a conduit for uncovering knowledge about who I was that would otherwise have remained buried. Susan Sontag famously described illness as ‘the night-side of life’ in her peerless 1978 text Illness as Metaphor. And the night makes possible a different kind of seeing. I learned that my great-grandmother, Dorothy, had Myasthenia Gravis, a neuromuscular disease that weakened her muscles and caused her hands to shake. Dorothy’s sister, Ada, lived with Graves’ Disease, a disorder of the thyroid that made her heartbeat furious and her eyes swell. Both of these diseases had been documented in medical history for more than a century and were known to affect more women than men. Dorothy and Ada died of complications of their diseases in the early 1950s, before their autoimmune cause had been discovered and medicine started to understand how to properly treat sufferers. My mother only has hazy memories of her grandmother and aunt – they lost their lives when she was very young. Through my diagnosis I felt an intimate connection to these women I never knew but whose DNA glimmered in me. Predisposition to developing an autoimmune disease is thought to be hereditary, and I learned that Lupus, Graves’ and Myasthenia Gravis are often found in familial histories – especially down the maternal line.

It wasn’t only this genetic autoimmune pattern that made me feel such kinship with Dorothy and Ada. We had all suffered with complex diseases shrouded in misunderstanding, which historically had been stigmatised because of entrenched mythologies and misbeliefs about women’s bodies, illnesses, and pain. My own life had been saved because knowledge about how to diagnose and treat autoimmune diseases had advanced exponentially. But what hadn’t changed, since the 1950s and throughout medicine’s history, was the ingrained assumption that when a woman says she is in pain, it is probably all in her mind. Like lupus and many other chronic diseases that predominantly affect women, the symptoms of Myasthenia Gravis and Graves’ Disease were frequently misdiagnosed as manifestations of hysteria, nervousness, and even hypochondria. I wondered how this historical tendency to write-off women’s illness symptoms as emotional, exaggerated and even imagined had impacted medicine’s current understanding of those diseases. I wondered whether the causes and courses of these diseases would not be so elusive if physicians in the past had trusted the bodies and voices of their women patients. And I wondered how, and why, this overwhelming propensity to distrust, dismiss and disbelieve women’s pain and other symptoms had become so deeply ingrained.

My need to answer these questions was the impulse for the research that became my book, Unwell Women: A Journey Through Medicine and Myth in a Man-Made World. Over years of learning to live with my disease, I combed the historical annals of medicine. In tracts and treatises, clinical reports and case studies, pamphlets and books, I came across countless women whose experiences mirrored my own – unexplained illnesses, years of pain and other mysterious symptoms, and consistent misdiagnoses. I wanted to honour these women whose bodies and pain had contributed to the knowledge that saved my life; they were all part of my history.

As I began to trace the roots of the misunderstanding, mystification and misdiagnosis that so many women and people assigned female at birth experience today, I started to understand how punitive misbeliefs about female biology were entangled with oppressive ideas about who women were, how they should live, and what they could feel. By the time I came to write Unwell Women, chronic, unexplained, incurable diseases had become touchstones in emerging narratives about how medical culture was still failing women. For the first time in history, the experience of living in a female body and navigating often hostile healthcare systems were coming courageously to light, in memoirs and essays, blogs and articles, poetry and film. Unwell Women is a journey through the evolution of the sexist and misogynistic medical lore that has insidiously controlled and silenced women for centuries. But it is also a celebration of women’s strength, resilience and incredible bravery, and of the power we hold - in voicing our pain, in telling our illness stories - to rewrite our histories.