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A cure of one’s own

After years of dismissal, a new wave of literature sees women confronting an epidemic of underdiagnosed chronic pain conditions.

One night when I was 19, my ears ringing from the sound of my own screams echoing around my grubby student-house bathroom, I decided it was time to call an ambulance. I had taken painkillers, drunk buckets of water and cranberry juice, but nothing took the edge off the intense, burning pain I felt between my legs. The paramedics came and injected morphine directly into my thigh muscle, as my housemates looked on aghast. After several gruelling hours in A&E, I was sent home in the early hours of the morning. The following night, the whole thing happened again.

That first year was the worst year. I had a cystoscopy, a bladder biopsy, a urethral dilation. I missed classes and nights out. Doctors tried different drugs, including an antidepressant that made me so drowsy I could hardly read. After several months of treatment and procedures, I was finally diagnosed with: nothing. I was in chronic vulval pain, but there was no reason for it.

I had thought my experiences were unusual, but the recent boom in books about women in pain suggests otherwise. In the past couple of years more than a dozen books have been published by women about women’s pain conditions. The list of conditions is long: endometriosis, vaginismus, vulvodynia, Lyme disease and breast cancer, among others, and the books vary from friendly how-to guides such as Eleanor Thom’s Private Parts to moving memoirs, including Lucia Osborne-Crowley’s I Choose Elena; from essays – Sinéad Gleeson’s Constellations – to popular science polemics such as Gabrielle Jackson’s Pain and Prejudice. And there’s been an influx of books looking at women’s gynaecological health in general: books dealing with periods, the menopause and the vagina, such as Lynn Enright’s Vagina: A Re-education and Dr Jennifer Gunter’s The Vagina Bible. Even in fiction, women’s pain conditions have enjoyed a moment in the sun. Part of what made Sally Rooney’s Conversations with Friends speak to so many women readers is that one of its main characters suffers from endometriosis.

It feels like the beginning of a reckoning with how many women are suffering pain on a daily basis, and how medicine has failed them. A reckoning with how strong the link is between pain and womanhood, and how urgent it is that we break it.

Most of our understanding of medicine is based on studies of the male body, performed by male doctors. Although 70 per cent of sufferers of all chronic pain conditions are women, 80 per cent of pain studies are conducted on men or male mice. This is one reason why women’s pain conditions have been so poorly understood. Eleanor Thom points out, for instance, that roughly the same number of people suffer from endometriosis as from diabetes, but for every person believed to have diabetes, the National Institute of Health in the US spends $36 a year per patient in grant money, compared to less than $1 a year per patient with endometriosis. For years endometriosis, a disease in which cells similar to those found in the uterine lining grows in other areas of the body, was widely thought of as a “career woman’s disease”, affecting uptight, middle-class women without children.

It’s now believed that many different women’s pain conditions were historically dismissed under the umbrella of “hysteria”: the idea that female distress was caused by their womb wandering about inside them. While the concept of literal wandering wombs is dead, several studies have shown that women are still perceived as being “hysterical” when they’re in pain. A famous paper in this field, “The Girl Who Cried Pain”, found women presenting with pain to doctors are more likely to be given sedatives, and men to be given painkillers.

We suddenly have a wealth of memoirs of female chronic pain that defy the idea of the oversensitive woman. They often begin with the writer’s first experiences of pain in their early teens. Teenage years are a time when we generally know little about our changing bodies and feelings, and are learning not to trust our own knowledge of them. To Eleanor Thom, her teenage body felt like a “complicated flat-packed item from Ikea with inadequate instructions”.

It doesn’t help that this is the time when many young women are receiving inadequate sex education at school. In her memoir Ask Me About My Uterus, Abby Norman remembers that her sex-ed teacher couldn’t even say the word “vagina”, inexplicably saying “velveeta” instead. We lack useful information about menstruation too: young women are told that periods hurt, and then assume that agony trying to insert a tampon and bleeding through several layers of clothing is normal.

We are taught early not to talk about our genitals: as adult women, we need to unlearn this embarrassment. This is the main thrust of both Vagina: A Re-education and The Vagina Bible, which include labelled diagrams and step-by-step guides to pelvic pain conditions. In Private Parts, Thom writes about her long-standing reluctance to talk about her endometriosis because it involves her genitals. I’ve certainly felt this embarrassment. You may have noticed that in the first paragraph of this piece, I didn’t write “my vagina”. And the embarrassment is compounded for many women as gynaecologists are overwhelmingly male.

On top of this, the failure of language to meet our need for communicating pain runs through every one of these books. Each pain sufferer, and each writer, turns to their own metaphors to try to bridge this gap. Abby Norman describes her pain as striking like “an unseen assailant’s invisible knife”. Thom characterises her pain as being like “having a very small child or an elderly relative” with her all the time. In her breast cancer memoir The Undying, Anne Boyer writes that trying to describe the sensation of pain is “like taking a photograph of the scent of a perfume.”

The piece of language that pain sufferers are often most desperate for is a diagnosis, what Boyer calls “the mercy of a name”. Endometriosis patients wait an average of seven-and-a-half years for this mercy. Personally, I feel a keen longing for a word for what I have, something concrete to explain myself.

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Why focus on women in pain in particular? In her essay “The Grand Unified Theory of Female Pain”, Leslie Jamison argues that being a woman seems to require being in pain; “that pain is the unending glue and prerequisite of female consciousness”. Pain from sex is presented to us as normal, because it exists in the service of male pleasure. Many endometriosis sufferers are told that periods hurt and you’re supposed to just lump it, and this delays many women from seeking help. It’s also linked to the pain of childbirth: Gleeson writes that many people still turn their nose up at women who opt for painkillers during birth or a caesarean.

And if you do manage to describe your symptoms, there’s no guarantee you’ll be believed. The problem here is twofold. Firstly, it’s difficult for people to wrap their heads around “neuropathic” pain – the type of pain I seem to have. Your nervous system starts to fire off signals reporting damage to your brain when there is, in fact, no damage to report. So it is “in your head” in so far as it’s to do with the brain, but what many people hear is that the pain itself is “made up”. Secondly, we have been assuming the untrustworthiness of women’s narratives since time immemorial, and narratives about how we feel in our bodies are no different. In her book Doing Harm, Maya Dusenbery describes this as “a deeply invalidating form of gaslighting”. Not being believed is one of the most common experiences women in chronic pain report, it turns out. Norman remembers the first doctor who said the words “this is all in your head” to her, and he did so “in a way that was firmly accusatory, almost to the point of disgust”.

Virginia Woolf argued in her much-quoted 1926 essay “On Being Ill” that there is no adequate language for pain. This might be true, but it doesn’t mean we have no way of expressing it. You would be left in no doubt, watching someone being tortured, that they were in pain. The problem isn’t that we have no appropriate way of communicating pain: our problem is with believing the communicator.

The medical establishment knows it has a problem with believing women. Thom notes that in 2017, the UK National Institute for Health and Care Excellence published new guidelines saying that health-care professionals need to listen better to female patients reporting pelvic pain. Eleanor Morgan explicitly links this to the #MeToo movement in her new book on women’s health, Hormonal: “The reality is that, as women, our pain is not often taken at face value… So many women were told that their silence had more currency than their trauma.”

In some cases, sexual assault and chronic pain are even more directly related. Osborne-Crowley’s memoir is an extraordinary account of how sexual trauma in her youth led to terrible physical pain, because her “body was trying to say something her mind could not”. As with sexual assault, women in pain have often felt the best thing to do is just to stay silent. Michele Lent Hirsch’s Invisible is a book built of interviews with women in various kinds of chronic pain. She concludes that “women often minimise what has happened to them, for a number of complex reasons related to internalised misogyny, feeling powerless or scared, or not wanting to take up space”.

The idea of the “good patient” is tyrannical. Sometimes women simply want to be able to say that they are not all right. Lent Hirsch rails against the “inspiration porn” of the brave, defiant sick woman. But the truth is that chronic pain is hard and frightening and meaningless. It begets other pains: depression, exhaustion, addiction and alienation from your own body. The drugs you’re given for it come with unpleasant sensations of their own. Depression and pain go hand in hand, in what Norman calls “the ouroboros of pain from which we cannot escape”. In any case, the division between physical and mental agony is arbitrary. Pain, as Dusenbery explains, is not just a sensation but an emotion: “What makes pain pain is that it makes us feel bad.”

Lent Hirsch cites studies that found female patients tried not to appear “too strong or too weak, too healthy or too ill, or too smart or too disarranged”, to counteract the possibility that their doctors wouldn’t believe them. This impossible balancing act will sound familiar to any woman, echoing other areas of life. Dress feminine, but not immodestly. Love your body, but diet. Have a career, but have a baby.

It is not a coincidence that most of these books are written by white women. When it comes to being treated for pain, white women are more likely to be believed than women from ethnic minorities, something many of these writers acknowledge. Lent Hirsch’s book discusses one 2016 study which found that “a substantial number” of white doctors “hold false beliefs about biological differences between blacks and whites”, such as black people being less sensitive to pain. The consequences of these beliefs cannot be overstated: they are lethal. In the US, Lent Hirsch writes, they were used to justify slavery and the inhumane treatment of black people in medical research. In Pain and Prejudice, there is a moving account of Naomi Williams, a pregnant Aboriginal woman who died of sepsis, 15 hours after being sent home from a hospital with two paracetamol.

Every pain sufferer is different, and every sufferer has their own coping mechanisms. Some take solace in inspirational figures. Thom and Gleeson both turn to Frida Kahlo for an example of fearless creative life with illness. Esmé Weijun Wang – whose book The Collected Schizophrenias, which is partly an account of her life with Lyme disease – came out this year, has a Joan of Arc quote hung on her wall. Some throw themselves into self-education. Gleeson writes about how assimilating medical language was a way for her of “asserting autonomy”. Or there are alternative therapies. We all like to scoff at the wellness industry, with its crystals, potions and lotions, but for those suffering from conditions the medical establishment does not yet understand, it can seem like the only option available.

There’s an anxiety in each of these books around writing about women suffering. Women have always had to flay themselves in public to be believed. How do we bear witness to women’s pain without rubber-necking? Anne Boyer in particular is sceptical about the blanket positivity of “raising awareness”. A pink bucket of KFC chicken sold in the name of breast cancer awareness isn’t doing much to challenge what she calls the “white supremacist capitalist patriarchy’s ruinous carcinogenosphere”. Enright, however, writes in Vagina: A Re-education that “the benefits of women displaying their pain cannot be underestimated”. She discovered her own endometriosis after reading Hilary Mantel’s account of the disease in a newspaper.

“Illness is an outpost, lunar, Arctic, difficult to reach,” Gleeson writes. Reading about the pain of others helps alleviate this loneliness. Many of these authors find solace on the internet, in seeing that other women feel the way they do. Writing creates access to a community of fellow sufferers. It makes a space for empathy, something chronic pain patients are so often deprived of. “I can’t change the world,” Osborne-Crowley admits. “What I can change is the size of the silence.” And the writing itself can be palliative. For Gleeson, it gave form to the otherwise unpredictable life of a person in pain: a life that defies obvious narrative structure. Chronic pain has a beginning, but no end. “To commit to writing, or art, is to commit to living,” she writes. “A self-imposed deadline as a means of continued existence.”

One of the questions I had in mind when I began reading these books was: “Do they make a difference to women in pain?” I did not expect to arrive at such a concrete answer. At some point during my reading, the penny dropped: the symptoms of endometriosis were my symptoms, too. I’m now making appointments that could (could!) lead to my finally being diagnosed. So it is almost too clear to me that the answer to my question is: yes. Whatever happens from here, for me and for all of the millions of other woman in pain, the fact that there is now such a breadth of insightful books about the subject is comforting proof that we are not alone. There is strength in numbers. 

This article appears in the 20 November 2019 issue of the New Statesman, They think it’s all over