The Sleeping Beauties book review: my mom suffered from Chronic Fatigue Syndrome

I am very grateful to consultant neurologist Suzanne O’Sullivan for writing both of her books, Its All in Your Head and, most recently, The Sleeping Beauties, about psychosomatic disease. It is hard to convey the quality of disorientation caused by having a disabled but not properly diagnosed parent. Even as an adult who has spent time thinking and talking and rationalising, I still find mom’s lived experience of disease confusing and distressing: how does a smart, beautiful woman in her twenties go from being energetic and self sufficient to bed-ridden and riddled with symptoms? And symptoms, no less, that don’t quite add up medically and, as she descended into chronic illness, symptoms that had to be justified and defended often, if not daily. I remember mom saying Chronic Fatigue was ‘real,’ and I remember her using bio-medical phrases she would pick up in self-published crackpot accounts of CFS like, ‘lactic acid build-up,’ and ‘holes in my brain,’ in a swaggering outlaw effort to break into some kind of legitimate disagnosis. To my knowldge, she never did manage to break into what O’Sullivan calls, ‘a better diagnosis,’ but, comfortingly, my mom is not the only person with unexplained symptoms who, ‘go on to spend a lifetime in that pursuit.’ Comforting because psychosomatic illness is incredibly isolating, not only for the individual, but also for their family. How do you talk about your mom’s illness when there is no label for it, other than the one she fashioned, DIY, out of message boards from 90’s internet? Are you allowed to claim the word, ‘disability,’ even when she does not identify or use it herself, just as some kind of place holder, maybe a way to try and explain what it is like to live with someone who requires your daily care and vigilance from before you can remember?

The writing in The Sleeping Beauties is compassionate and, usefully for me, gave me a few footholds in what has been very slippery terrain. Suddenly there are patterns: two thirds of people with functional disorders (a technical name for psychosomatic illness) are women. The book goes on to discuss, through some very compelling case studies, why this is so. O’Sullivan comments on this fact, ‘there are many factors but I am convinced that their voiceless position in society is one of them.’ With those words, she drops me on familiar ground. This is along the lines of Susie Orbach’s pyschoanalytic-feminist crituque of anorexia. (Orbach famously treated princess Di for her eating disorder) Women who have been denied psyches must resort to somatising. The flattening of psyhe-soma gets smushed into psychosomatic and communication is via the body and symptoms rather than words and emotions. I now have some kind of magnetic North or star to work with. This makes sense.

The other bit of ground I gained after reading her book was O’Sullivan’s ‘coding error’ explanation of how someone might start with a symptom and end with a chronic, mystery illness. All of us feel tired and achy or experience bouts of dizziness or headaches or random twinges. Some of us might go to the GP and if and investigation yeilds nothing, we might sigh with relief and maybe drink a bit more water and get some rest and remember to breathe when we feel stressed. But maybe mom, who felt exhausted and achy, went to her doctor and was not satisfied with his reasurrances. Maybe she felt abnormally exhausted (she diagnosed herself with CFS when the three of us were very young. I can only imagine how tiring it would be two have three little kids born within a year of each other) and felt she needed to medicalize her tiredness so she could access care. I get how knackering having a kid is. Childcare is exhausting and invisible and thankless and definitely in the 80’s much of that burden would have fallen to her, and her experience, I am sure, would have been dismissed as normal and not deserving of any kind of support or intervention. I can imagine mom wondering why she felt so tired when other moms seemed fine, seemed to be holding it together, and perhaps, at that point, she thought there must be something medically wrong with her. Maybe the tiredness became a symptom, a way of signifying that something was not right and she could not cope. I don’t know how or when she first heard of Chronic Fatigue Syndrome but maybe when she found out about it, it gave her permission to rest and ask for help. But also, perhaps it led to, ‘coding errors’ where she might have scanned her body for evidence of her diagnosis and ‘found’ symptoms. Symptoms that she would then obsessed about, medicate, label and reify. O’Sullivan describes a, ‘chilling’ comment by a patient who seems to have recovered but is still convinced the illness is inside of her, ‘It was as if she had become accustomed to the expectation of ill health.’ Mom became less and less active as we got older, giving up more of her daily activities: art, exercise, cleaning, cooking, socialising. She was too tired to do them. I can imagine that she did feel too tired, but also that she expected to feel too tired and as she sacrificed moving her body and looking after herself, she felt worse. Ill health became a habit and then chonic. O’Sullivan remarks, ‘it is very hard to extricate someone from a label once they inhabit it.’ Mom eventually, by the time I was eleven, would spend most of the day in bed, unable to do even simple tasks like make herself coffee. I would bring her coffee and Dad would cook. The cleaning was shared out between the three of us kids.

Recovery for psychosomatic disorders is rare. O’Sullivan writes in the epilogue of The Sleeping Beauties about the, ‘bleak outlook,’ for sufferers. The cure involves an acceptance of psychological help (specifically CBT to help the person ‘rewire’ their responses to symptoms) and all the stigma of receiving a mental health diagnosis. This is the crux of the issue, for me. Mental health issues, in our culture, do not hold the same gravitas. They are often treated with suspicion, as if the sufferer is faking it or should be able to snap out of it, should be able to think themselves into a better state of mind. A mental health diagnosis is a less worthy diagnosis than a flesh and blood biological illness. It means accepting that your disability will be treated with less compassion than a physical disability, that the legitimacy of your suffering will always be questioned, maybe even laughed at, and there will always be a slight suspicion that it is probably your fault. This is indeed bleak, and I can understand why my mom would choose the purgatory of chasing a so-called organic cause to her illness instead of being saddled with a mental health diagnosis and all the baggage that goes with it. O’Sullivan situates the responsibility of cure with all of us. She says it is a social issue, that our response as a community is what makes the difference between ‘recovery or a descent into chronic illness.’ Only when our reactions to mental illness change- how we respond to those who suffer with anxiety, depression, psychosomatic disorders- will the ‘quality of that person’s experience [change].’ Maybe, all those years ago, my mom would not have had to get so sick if she could have accepted that her disease was not in her body, but in her mind, but only when we, as a society are prepared to give as much weight to our mental health as we do in our physical health will that be possible.

Copyright Diana Smith 2021

The Sleeping Beauties is by Suzanne O’Sullivan and if you want to support your local high street bookshop, you can order a copy from Hive. https://www.hive.co.uk/Product/Suzanne-OSullivan/The-Sleeping-Beauties–And-Other-Stories-of-Mystery-Illness/25474764

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