‘They had embodied a narrative’

Our editor Jon Sutton hears from Suzanne O’Sullivan about her new book, The Sleeping Beauties and Other Stories of Mystery Illness (Pan Macmillan).

Dr Suzanne O’Sullivan has been a consultant in neurology since 2004, first working at the Royal London Hospital and now as a consultant in clinical neurophysiology and neurology at the National Hospital for Neurology and Neurosurgery. She specialises in the investigation of complex epilepsy and also has an active interest in psychogenic disorders. Suzanne’s first book, It’s All in Your Head, won both the Wellcome Book Prize and the Royal Society of Biology Book Prize. Her critically acclaimed Brainstorm was published in 2018. 

Her new book, The Sleeping Beauties and Other Stories of Mystery Illness, investigates some of the most remarkable diagnostic mysteries of the 21st century, as both doctors and scientists have struggled to explain them within the boundaries of medical science and – more crucially – to treat them. What unites them is that they are all examples of a particular type of psychosomatic illness: medical disorders that are influenced as much by the idiosyncratic aspects of individual cultures as they are by human biology.

You write that up to a third of people attending any neurology clinic have a medical complaint that is likely to be psychosomatic in nature – real physical symptoms that are disabling, but which are not due to disease and are understood to have a psychological or behavioural cause. And that can affect any symptom, disability, or organ of the body. Do you think understanding around that – in the medical community, and amongst the wider public – has changed in recent years?
Psychosomatic conditions did not feature during my medical training. The subject rarely appeared in neurology journals or at medical conferences, which is shocking when you consider that a third of people who attend neurology clinics are likely to have a psychosomatic problem (functional neurological disorder). Most neurologists of my generation qualified with no strategy for addressing these problems. I am very happy to say that is changing. This has become an area of intense research interest and, with that, have come many new insights. I am hopeful for the future.

Unfortunately though, we are not nearly there yet. Advancements have been slow to filter through to the wider medical consciousness. My patients with dissociative (non-epileptic) seizures still tell me ugly stories about how they are treated by medical staff. You need only look at the lack of treatment facilities to know that psychosomatic disorders are not considered as important as other causes of disability. We would not consider making a person paralysed by a spinal cord injury wait two years for treatment but that is how long people with functional paralysis often have to wait. 

Of course, if the medical community is still catching up, the public are inevitably further behind. They still regard psychosomatic problems with disbelief, and more often judgment. The media often refers to the condition as a ‘mystery’ even where the diagnosis is known. There seems to be an ongoing struggle to accept that the body speaks for us. I am personally an open book of facial expressions and telling body language, but when I ask people to carry that concept through to the possibility of psychosomatic disability I see them struggle. There is a great deal of progress still to be made. 

Language is central here, isn’t it? 
In Nicaragua there is a culture bound syndrome called Grisi Siknis (crazy sickness) which manifests as dissociative seizures and manic behaviour. Despite the pejorative sounding name, the condition has relatively little stigma attached to it. The seizures are not considered to be the fault of the person affected, so they attract compassion and community support rather than judgment. In meeting Nicaraguan people affected by this disorder I did not hear a single objection to the label.

I think Western medicine could learn from this. The terminology used to refer to psychosomatic disorders is constantly changing. Increasingly bland labels are being used to create socially acceptability. I would suggest that demystifying the mind-body-environment interaction and making this an illness without blame would do more to remove stigma than yet another sanitising name change. In particular, I worry that cleansing psychosomatic disorders of words that refer to psychology (case in point, functional neurological disorders) actually adds to stigma by suggesting that disorders linked to the mind need to be hidden.

More important than just words are stories. Several years ago a contagious sleeping sickness struck a small town in Kazakhstan. Those affected were certain they had been poisoned even though no poison was found. Medical tests strongly suggested a psychosomatic cause, a formulation that the town rejected. In 2019 I visited that community and they told me a vivid story about their unique lives that helped me see that the sleeping sickness was actually an incredibly sophisticated solution to a complex social problem. They had embodied a narrative. My patients do this too. The vivid mental picture of a slipped disc cutting through their spinal cord can be enough to create disability. 

I agree that reducing functional and psychosomatic disorders to ‘stress-induced’ ‘conversion disorders’ loses all the nuance in a patient’s internalised story and risks alienating them. But ongoing wordplay around the disorder is not the answer. If a person feels understood and feels that they are believed, they care a lot less what labels you give them.

What’s your experience of Psychologists in terms of understanding that ‘every medical problem is a combination of the biological, the psychological and the social’? 
Despite a great deal of talk about avoiding mind-body dualism I think it still exists in our practices. Medical problems are reduced to mostly biological or mostly psychological and that creates a treatment pathway that often only covers one aspect of the problem. In fact, I find psychologists to be more holistic than neurologists, who are inclined to either shy away from or ham-fistedly deal with conversations about mind-body interactions. Having said that I still encounter psychologists who struggle to accept the more extreme physical manifestations of psychosomatic disabilities and inadvertently communicate their disbelief to patients. Thus, treatment is doomed.

More problematic is how we all deal with the social contributors to psychosomatic illness. It feels generally safer to conceptualise a person’s suffering through neurotransmitters, connectomes and cognitive mechanisms than to approach them as a social disorder. Doing so risks being seen to blame the patient for their own problem. What’s more many social problems are simply too big for any one professional to address. The media, educational systems, friends, family, spiritual beliefs are outside our domain. So, the majority of attention is given to internal processes, but, with that, I fear important conversations are being neglected. 

What are the implications of the artificial division into either biological, psychological, or social? I was struck by your point about that making it surprisingly easy for systems to leave people without treatment while they debate who is responsible for them.
Our persistent division between mind, body and environment inevitably leads to reductionist treatment that focuses on one element of the problem. 

Many people with physical disability due to a functional neurological disorder are referred to a psychologist and discharged by their medical doctors. They are given psychological interventions but their physical disability is neglected. Or the converse occurs, in which a patient spends years undergoing medical testing without ever meeting a psychologist. 

In Sweden there is a condition called resignation syndrome that affects children of asylum-seeking families who are facing deportation. It manifests as a deep catatonic state that can last for years. It is a very good example of how a diagnosis of a biopsychosocial condition gives both the medical community and the general public permission to be neglectful. Because it is a social disorder these children are cared for at home and do not receive any active treatment.

If every disease and every illness is part biological, psychological and social then joined up care should always be available to address each element equally. I often think that my patients would benefit more from a good social worker than a neurologist or psychologist, but few patients get quality input from all three. 

On biology, you say ‘ultimately that’s what everybody wants to know’, and that to truly consider brains ‘in the wild’ you needed a language you ‘haven’t yet learned to speak’. Over the years I’ve perhaps seen Psychologists veer away from reductionism and to speak the sociopolitical and cultural language… some would argue that’s now all they speak. Can your book help us strike a happy medium?
I have the sense that many people can’t quite see how environment and the biology of behaviour connect. In writing this book I have tried to bring them together. People live in a rich social world, but we study them in sterile clinics. By leaving my clinic and talking to people in communities very different to my own I really came to appreciate how the richness of their stories shaped their expressions of distress. But in writing about what they told me I have also tried to frame their experiences in biological terms in order to give substance to the physiological reality of these conditions. 

It’s notable that so many of the people you meet in the book are young girls and women, and that you clearly feel they get a raw deal when it comes to how we think of psychosomatic illness. Have we really not moved on from the witch trials?
In travelling to communities affected by mass psychogenic illness (MPI) I was very disappointed to see the difference between the way that young women were talked about, when compared to men. MPI in young women was attributed to petty love rivalries and sexual frustration. The women were portrayed as troubled and psychologically weak. Most of the outbreaks I encountered arose from a societal problem and had nothing to do with psychological fragility, and yet the women’s personal lives were picked over mercilessly. Men and older groups did not suffer that sort of disparaging scrutiny. Actually, more often than not, in them, the diagnosis was rejected – precisely because they were not young women. One group of teenage girls who developed a tic-like disorder were actually referred to as witches. I know of no other medical problem that is still associated with centuries old tropes. 

The more you get to the bottom of each mystery, the more I am reminded of the saying ‘More inhumanity has been done by man himself than any other of nature’s causes’. And along with a dash of humour, something that comes across to me in your writing is worry – for the futures of the people you meet, perhaps for the world in general. Do you think that’s fair, and if so did that increase through the researching of the book?
I was certainly concerned by the absolute lack of willingness to accept the reality of psychosomatic conditions. The recent scientific progress has yet to touch most people. Every single group I met outright rejected a psychosomatic formulation to explain their disability. Each considered that diagnosis an insult. Even highly regarded US doctors still likened psychosomatic suffering to malingering. That was chilling to see. It trapped patients in endless cycles of fruitless medical testing that often made their symptoms worse. 

I also started to wonder if the western medical approach is the right one. Nobody I spoke to wanted to hear about processes like dissociation and predictive coding, they wanted their stories heard and validated. I was left wondering if the entire way that I conceptualise these problems was actually doing people a disservice.

What implications does all this have for treating illness? 
Of all the MPI groups I met there was one consistency – they outright rejected that diagnosis and the western medical approach failed to help them. In fact, a diagnosis of MPI or any psychological formulation was certain to make them worse. What helped were ritualised, spiritual and symbolic treatments. Recovery depended on the group’s ability to figure out what social problem their symptoms had come to solve and then solving it. In the face of a psychosomatic diagnosis people reinforced their symptoms to prove their suffering.

As a neurologist I have a tendency to meet these disorders head on in my own patients. I explain how the cognitive processes that make up the mind interact with other biological brain processes to create physical disability. I realise now that approach is only suitable for people like me who find relief in a psychosocial explanation. I need to learn to recognise those for whom that is not the best approach and listen to and work with the formulation they are using to explain their symptoms. 

Sathnam Sanghera called you ‘the best science writer around – a true descendant of Oliver Sacks’. How does that feel? 
I am make a concerted effort to never read anything anybody says about me, good or bad – but I couldn’t avoid Sathnam’s far too generous words because my publisher put them on the front of my book! I am endlessly grateful to him for his kindness, but I’d be a fool to believe it. 

Do you have a tip for our readers looking to write about Psychology for a wider audience?
It’s very hard to strike the right balance between telling the absolute truth, protecting patients and acknowledging differing opinions. I write with the idea that actual patients are in the room with me, and I don’t write anything that I wouldn’t say directly to them. 

-        The Sleeping Beauties and Other Stories of Mystery Illness is out now. For your chance to win a copy, see @psychmag on Twitter.

Photograph © Jonathan Greet, 2015.

This piece originally appeared online on 22 March 2021.

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