Publisher : Weidenfeld & Nicolson (10 Jun. 2021)
ASIN: B08HMN732X ( Kindle Edition)
My interest in this book is twofold: first the cover made me stop and look because it reminded me of the art of Frida Kahlo, and secondly, I am an unwell woman. I have been diagnosed with relapsing remitting Multiple Sclerosis for the past 25 years – ooh my silver anniversary, what do I get for that? Since then my health has deteriorated, mainly due to a back injury I sustained when I was 11. I did a somersault and landed awkwardly, causing two fractures to my spine. I was very lucky to be upright and walking, but scar tissue, muscle damage and deteriorating discs have caused so much stiffness and instability. This is managed with injections in my spine for pain and a regular procedure my compressed nerves are severed to stop nerve pain radiating into my pelvis and legs. It’s a lot to deal with, and I truly don’t know how I’m going to wake up every morning. I just wake up, take the medication and see what I can manage that day. I’ve just had a week where even looking at this screen would be impossible because of optic neuritis.
In my many years in the ‘kingdom of the sick’ and working as a counsellor for people with chronic ill health, I’ve noticed a major difference in how men and women, with exactly the same ailments, are treated. This book traces a history of women’s ill health and the treatment of it, for many years solely by a male medical profession. To quote the blurb:
‘In Unwell Women Elinor Cleghorn unpacks the roots of the perpetual misunderstanding, mystification and misdiagnosis of women’s bodies, and traces the journey from the ‘wandering womb’ of ancient Greece, the rise of witch trials in Medieval Europe, through the dawn of Hysteria, to modern day understandings of autoimmune diseases, the menopause and conditions like endometriosis. Packed with character studies of women who have suffered, challenged and rewritten medical orthodoxy – and drawing on her own experience of un-diagnosed Lupus disease – this is a ground-breaking and timely exposé of the medical world and woman’s place within it.’
‘We are taught that medicine is the art of solving our body’s mysteries. And as a science, we expect medicine to uphold the principles of evidence and impartiality. We want our doctors to listen to us and care for us as people, but we also need their assessments of our pain and fevers, aches and exhaustion to be free of any prejudice about who we are, our gender, or the colour of our skin. But medicine carries the burden of its own troubling history. The history of medicine, of illness, is a history of people, of their bodies and their lives, not just physicians, surgeons, clinicians and researchers. And medical progress has always reflected the realities of a changing world, and the meanings of being human.‘
In my own experience, I have found the world of neurology, clinical, abrupt and sexist. My diagnosis is old now and I have had new neurologists interrogate me on who diagnosed me, why and where – almost as if I’ve made it up out of thin air. I’ve been patronisingly asked whether I might ‘weep’ a lot, or have fatigue and pain due to being depressed. I asked if they’d send me to psychiatry if they felt it was all in my head – I didn’t care whether it was a mental illness, I just wanted to be treated and helped to get better. Once I asked for a referral the consultant backed down and said it’s definitely physical, because we have clinical evidence. I remember thinking that this was a complete ‘mindfuck.’ I started to question my own sanity, if I had a symptom I would wonder if it was real or in my head. Was I making myself ill and for what reason? A change of neurologist and several years of therapy helped me to see that the previous team had been quite abusive and manipulative. My rehabilitation consultant admitted that there was an old trend in neurology of not telling people with early MS about their diagnosis – the thought being that if you didn’t know you had an illness, you wouldn’t act as if you have an illness. Apparently, according to my old team ‘some women give up if they’re told they have a disability’.
I trained over many years in mental health work, and have worked as an advice worker, advocate and now a counsellor for people with disabilities. I have heard the same story told by so many women: being told they need to get a hobby or go out more; that they need anti-depressants when they don’t feel depressed; that maybe they need to have children (?); or that maybe, like the Victorian hysterics, this is all in their heads. My own favourite is being told to get rid of my cats so I could have children, when I have a diagnosis of Hughes Syndrome which causes recurrent miscarriage. My main area of work is reprogramming women who have all eventually been diagnosed with serious health conditions like Lupus, MS, Lyme Disease, Degenerative Disc Disease. All of them once told they were hypochondriacs and hysterical about their normal everyday aches and pains.
One of the ladies from my ‘Authentic Self’ workshop, was so scared of making a fuss about her pain that when she injured her leg on holiday she carried on. She walked on a fracture for four weeks because she’d been made to feel she made too much fuss about the pain she suffered from fibromyalgia and degenerative discs. Women should not be made to feel this way by the medical profession. Not once has a male come to me with the same story. Not one. In a BBC article ( link below) the same stories come up in relation to heart and gynaecological conditions. Women who reported to emergency rooms in acute pain were less likely to be prescribed pain relief, and where it was prescribed it took much longer to reach the patient.
‘This can have lethal consequences. In May 2018 in France, a 22-year old woman called emergency services saying her abdominal pain was so acute she felt she was “going to die.” “You’ll definitely die one day, like everyone else,” the operator replied. When the woman was taken to hospital after a five-hour wait, she had a stroke and died of multiple organ failure.’
I’m looking forward to reading about where these ideas about women’s health come from. I’d hoped once to write this book, but sadly my health meant PhD work on disability being put to one side. I feel this will demystify why women are treated this way and I hope to buy several copies to give to my friends and clients in the future. This book is not just anticipated, it is needed.
Links and Further Reading
Havi Carel. Illness. Routledge; 1st edition (20 Aug. 2008) – this a brilliant look at the ‘lived experience’ of chronic illness, the philosophical background to how we view illness, and the author’s own experiences as a woman and a patient. Utterly brilliant.