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The best books on Psychosomatic Illness

recommended by Suzanne O'Sullivan

We still understand very little about the workings of the brain, and yet we dismiss the tricks it can play on us as undeserving of the same sympathy as physical illness. Neurologist and author Suzanne O'Sullivan recommends the best books on psychosomatic illness.

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Suzanne O'Sullivan

Suzanne O’Sullivan is an Irish neurologist and clinical neurophysiologist at the National Hospital for Neurology and Neurosurgery at University College London. She specialises in epilepsy and improving services for people who suffer with functional neurological disorders. She won the 2016 Wellcome Book Prize for her first book, It’s All in Your Head: True Stories of Imaginary Illness.

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Suzanne O'Sullivan

Suzanne O’Sullivan is an Irish neurologist and clinical neurophysiologist at the National Hospital for Neurology and Neurosurgery at University College London. She specialises in epilepsy and improving services for people who suffer with functional neurological disorders. She won the 2016 Wellcome Book Prize for her first book, It’s All in Your Head: True Stories of Imaginary Illness.

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Your book, It’s All In Your Head, is about psychosomatic illness. So first, what exactly is psychosomatic illness?

It’s where someone suffers with a real disability that is significant and disabling, but the problem can’t be explained by a medical investigation and a psychological cause is suspected.

As a neurologist, what draws you to these patients? Why did you choose to write about them rather than people with conventional neurological disorders?

When I became a neurologist I was trained to look after people with brain diseases, things like epilepsy and multiple sclerosis. But as it turned out I was spending about a third of my time telling people that their seizures were not due to epilepsy but were actually psychosomatic or what we now call dissociative seizures. That was in outpatients. Among the people who were brought into hospital with seizures, 70% of them had dissociative seizures. It’s a really common problem. When I became a consultant it became wholly my responsibility to care for these people and I realized that I was woefully inadequately prepared. So it was a big journey for me. I was trying to educate people on this issue and every new person I told, it was like they had never heard of it before. I thought, how can people not know about something so common? It was impossible to continue ignoring it.

Can you give any examples of the patients you write about?

One story that people seem to find particularly surprising is the case of a woman who, after an accident, went blind. That blindness transpired to have a purely psychological cause rather than being due to any eye disease or any pathology caused by the injury. This woman was profoundly blind. If you examined her she couldn’t see anything other than slight changes in ambient light. But there was a huge contradiction between her experience of being completely unable to see, and some of her behaviour. In distracted moments she could reach out and pick things up. On one occasion she drew a faithful picture of a tree in a garden. I think many people struggle to believe this. They can believe psychological factors can give you a headache or cause your heart to beat very fast. But they don’t realise how severe the disabilities can sometimes be. We all look directly at something and don’t see it. This is a feature of normal human experience, and for this woman it was so profound that she couldn’t see at all.

“I was spending about a third of my time telling people that their seizures were not due to epilepsy but were actually psychosomatic”

I also talk about seizures. This is one of the most dramatic and disabling forms of psychosomatic or functional neurological disorder. I start the book with the case of Pauline, who as a teenager developed the symptoms of a urinary tract infection. She was treated for that and appeared to recover. Then, between the ages of 16 and 32 when I finally met her, she had multiple symptoms that could not be medically explained. She would present to the doctor with symptoms that would be treated but she wouldn’t fully recover and she’d find herself on long-term medication. She was suspected to have arthritis and treated with drugs but the problem was never fully solved. She had stomach pains. She woke up from one anesthetic and discovered that she had paralysis in her legs, which partially recovered but, again, wasn’t medically explained. She moved from medically unexplained symptom to medically unexplained symptom. And the symptoms moved around the body. This is something that happens with these disorders, because the symptom isn’t the most important thing, it’s what underlies them. So people with these disorders often don’t have only one problem like just a seizure, just dizziness, just headaches. They’ll have what Pauline had, which is a different medically unexplained symptom in every part of the body.

It culminated in her developing seizures. Because neurological problems are easier to measure than pain I was able to make a diagnosis and tell her that her seizures were hysterical or dissociative rather than being due to a brain disease. Pauline accepted that but it meant she had to face the possibility that she’d had 16 years of symptoms that perhaps were psychosomatic. Which is a very difficult thing. Imagine that you have used your entire adult life searching for physical disease and then someone says, perhaps there’s another explanation. And perhaps if this had been addressed 16 years ago, things might have gone differently for you.

I want to come back to society’s attitudes to these conditions but first, let’s get into your book choices. First on the list is Studies on Hysteria, published in 1895 by Sigmund Freud and Josef Breuer.

This was the starting point when people first considered the idea that stress and psychological distress can be ‘converted’ into physical symptoms. There are so many ideas and studies in this book that I absolutely don’t agree with any longer. It’s more than 100 years since it was written, but it laid down this basic premise on which we still operate in neurology; we now call these disorders conversion syndromes. This book was also the birthplace of the idea that if you can trace a symptom to the underlying psychological factors then perhaps you can give some sort of relief. For a long time people had considered that symptoms like this might be rooted in madness, there had been lots of conjecture about them being related to the womb, or to humours. This was the first text to articulate the idea that these symptoms are absolutely real but have a psychological basis. It was hugely influential.

Many of the ideas in Studies of Hysteria are now outdated, however. Freud presented the patients as being cathartically cured in a lot of cases. But many of them relapsed, and were not cured. I don’t believe in this kind of absolute catharsis. There is also a huge emphasis in the book on sexual trauma or abuse. While a proportion of patients who suffer in this way have experienced significant sexual or physical abuse, that isn’t always the case.

Freud and Breuer present five case studies in this book. What kinds of symptoms and psychological issues did the patients have?

The symptoms would sit very nicely with Pauline, the patient I was talking about a moment ago. Her symptoms flitted around her body: she started with urinary symptoms, then moved to pain, then seizures. Some of the patients Freud and Breuer wrote about were very similar to that. They described not being able to speak, perhaps because there’s something you’re withholding, that you want to say but don’t feel you can say. One woman had pain in her knee. She was caring for her sick father and Freud believed this was the root of her illness. Where she had bathed her father’s foot on her knee, night after night, she began to develop pain. Another woman, who for many reasons was struggling in life, saw a dog drinking from her cup. She developed an aversion to water and couldn’t swallow.

Freud believed that you could literally trace every symptom back to that one moment and the minute you realized that the reason you had pain in your leg was because your father’s foot was resting there when he was dying, or you realized you saw the dog drinking from the cup, that would cathartically cure you. I’m not sure I believe in that. The symptomatology he described is identical to any of the patients that I might care for now. But I wouldn’t trace the root cause in the way that he did.

Today we don’t tend to use psychotherapy to treat physical symptoms, even when they’re believed to be psychosomatic – why is that?

We would think about it quite differently now. When Studies on Hysteria was written it was considered that everything was due to psychological trauma. Very often that trauma was related to repressed sexuality or something sexual. Today we see these conditions as much more varied in their origin. It doesn’t necessarily follow that everybody who suffers with psychosomatic disability has suffered a psychological trauma or sexual abuse. Some people have, and then something as detailed as psychoanalysis would definitely be useful. But you can become ill just through ideas, through paying too much attention to your body, for example, or through injuring yourself and behaving in particular ways that prolong the injury rather than promoting recovery. Then maintenance factors are more important to address. Perhaps you need cognitive behavioural therapy to help you break the pattern of fear and avoidance. Or if you can’t walk, you don’t want six years of psychoanalysis, you want a physiotherapist to teach you how to walk again. We look at the individual and try to figure out what caused the disability, what’s maintaining the disability, and what are the main things that are needed to get people back on their feet again.

Your second choice is Medical Muses: Hysteria in 19th-century Paris by Asti Hustvedt. It tells the stories of three so-called hysterical women studied by one of Freud’s teachers, neurologist Jean-Martin Charcot, at the Salpêtrière Hospital in Paris. Why did you choose this book?

I work everyday with people who have seizures that a hundred years ago would have been called hysterical seizures. It’s impossible to be a neurologist, or a neurologist dealing with dissociative seizures, and not be fascinated with Charcot’s era. It was a pivotal era for neurology in general, as well as for hysteria in particular. Many of the pathological conditions we now know about, things like motor neurone disease and multiple sclerosis, Charcot described them first. He believed that hysteria too was a neurological disease. He did not believe that it was psychosomatic. It’s from him really that we coin the term “functional disorder” – he believed there were swellings coming and going in the brain that stopped it from functioning. He absolutely believed that there was a pathology in hysteria that he just couldn’t find.

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Up until Charcot, people had dismissed this disorder. It was seen as a disease of women – there were theories about wandering uteruses and things like that. It was easily ignored, and patients were put into asylums. But Charcot studied it scientifically. A lot of people don’t realize that. He’s famous for these “medical muses” that Hustvedt describes. We see these women pictured in various states of undress and in bizarre poses and it all looks very circus-like and exploitative. After his death, his ideas about hysteria were discredited. His theories were wrong. But he focused proper scientific rigour and attention on this disorder for the first time. And he drew Freud’s attention to it, which brought the next step of understanding. This is one of the things I liked about Medical Muses the book. I think Hustvedt set out with the idea that Charcot would be a misogynistic person who exploited women, and I don’t think she came out with that idea at the end.

Hysteria was historically seen as a female condition, and Freud and Charcot wrote only about female patients. The functional disorders we see today, too, are more commonly diagnosed in women. Are women really more susceptible to psychosomatic symptoms?

Neither Freud nor Charcot thought this was a disorder of women. They both had male patients. But they both exclusively wrote about their female patients, I can’t say why. As a junior doctor, I resisted the idea that this is a more female disorder. I could see that male doctors were much more willing to diagnose it in women than they were in men. That creates some of the bias. However I am a female doctor and most of my patients too are female. So I have to accept that overall, women are more susceptible. No one has the ultimate answer to why, but there are a few possible reasons. First, I think women are more likely to find themselves in the sort of situations that produce these disorders. They arise in trapped situations, in people who have suffered physical or psychological abuse, and that is something that happens to women more than men. Also, men and women deal with hardship and stress differently. Men are more likely to drink or become aggressive, women are more likely to turn the pain inward and manifest it as illnesses. And finally I think there’s a gender difference in which kinds of complaining are socially acceptable. It’s also important to say that this is a more male disorder than people realize. In young people these seizures are much more common in women but among older people, they increase significantly in men.

Your next choice is a classic neurology book: The Man Who Mistook His Wife For A Hat by Oliver Sacks. What do you like about it?

When I was embarking on my medical career, this was a very influential book for me. I have fond and warm memories of lying on a beach in Thailand reading it, thinking wow, maybe I’ll be doing this sometime. I didn’t choose neurology because of it but the way Oliver Sacks writes about neurology is very compelling. He’s such a beautiful writer, and the way he presents the cases reminds you what an astonishing organ the brain is. What astonishing things it can do and what astonishing things happen when it goes wrong.

Sacks takes a very human view, doesn’t he? He talks about the importance of religion and music to his subjects, for example, and what makes them complete as people, rather than focusing on their deficits.

I think that’s a very important point. He doesn’t write about neurological diseases, he writes about people. In the case of the man who mistook his wife for a hat, he paints a picture of an interesting person and an interesting family, with the disease in the background and the person in the foreground. It makes the book extremely readable and it makes him a humane, caring kind of doctor.

“I had assumed Sacks was going around collecting these very special, rare cases. But now I realize that what he’s really doing is drawing your attention to things that are not that unusual after all. ”

Can you say a bit more about that case?

It’s about a musician and artist who developed facial agnosia, so he was unable to recognize objects and faces. When he looked at his wife’s head he mistook her for a hat. Sacks followed the progression of the man’s illness through his art. His paintings gradually changed through his life, becoming more abstract as his disease developed.

When I first read this book as a student, before I had done any neurology, I wondered if Sacks was cherry-picking bizarre cases that hardly ever happened. But looking again as a qualified neurologist, I realise that these things aren’t so unusual. Another example would be the case of the man who fell out of bed. It’s about a man who had neglect of one leg. He ceased to be able to recognize his leg as his own. He would wake at night and think there was a severed leg in his bed and he would try and throw that leg out of the bed. This is a manifestation of something neurologists see all the time. If you have a stroke involving a particular part of your brain in the parietal lobe, particularly on the right side, you can get neglect of the other side. So you can have a plate of dinner and only eat the dinner on the left. Although you can see, you fail to recognize something about the dinner on the other side of your plate. This man had this neglect with one side of his body, so when he woke up he believed that the leg in his bed didn’t even belong to him.

I had assumed Sacks was going around collecting these very special, rare cases. But now I realize that what he’s really doing is drawing your attention to things that are not that unusual after all. He makes the stories wonderful and beautiful through the personal way in which he tells them.

As a neurologist describing your patients was it daunting to follow Sacks? How did the book influence your writing?

I wouldn’t say he influenced me at all. I’d long to be able to write like him but I don’t feel that I do! He’s a wonderful writer and I wouldn’t in a million years compare myself to him.

Your next choice is Into the Silent Land by Paul Broks. This starts off feeling similar to The Man Who Mistook His Wife For A Hat, with neurological case studies, but then goes in a very different direction.

It really does. You think you’re getting a popular science book about people with neurological problems. Then he wanders into these flights of fancy and philosophy, the bizarre meanderings of his own mind in response to his patients rather than necessarily patient stories. It’s an incredibly original and beautifully written book.

Throughout the book, Broks struggles with the question of whether we can ever explain subjective experience through a physical understanding of the brain.

He says something that Sacks doesn’t say. If you read The Man Who Mistook His Wife For A Hat, you’ll come to the end of a lot of those stories and not really know what was wrong with the person. Sacks describes their symptoms but he doesn’t necessarily tell you exactly what caused them or how they came about, probably because he doesn’t know and probably he doesn’t know because nobody knows. That’s what Broks says quite straightforwardly at one point in the book: neurologists and psychologists are working with something where we don’t know a fraction of the answers. We know a tiny amount about the organ we’re working with. Most people who work as experts in a field understand exactly what they’re doing. If they’re building an engine, they know what all the bits are. They know what will happen if they leave a bit out or if this breaks. Whereas we’re working with this organ that we don’t understand. When it goes wrong, it does so differently in everyone. It’s very strange to try to be an expert in something that you don’t remotely understand and I think that comes across in this book.

Last up is The Examined Life by Stephen Grosz. He’s also describing his patients, but this time from the point of view of a psychotherapist. Why did you choose it?

Grosz is such a beautiful writer. He creates these tiny vignettes. All the stories are short, you just get a little portrait of somebody, with a growing understanding, and invariably a bit of insight at the end. It provides answers more than some of the other books I’ve chosen. One example is the story of a man who compulsively tells lies. Grosz is trying to figure out how the man could possibly benefit from this. He traces it back to a point when he was a child and used to wet his bed. His mother used to clean up after him, they didn’t tell anyone and they shared this lie together. Then the boy’s mother died. In telling lies as an adult and forcing others to collude in them, Grosz concludes that his patient is unconsciously trying to recreate the bond he once had with his mother. You just think wow, that makes so much sense. I found it an incredibly wise and insightful book. My sister read it and she said it changed the way she praised her children. Grosz describes how he worries when he hears people praising his own children, because he knows that some sorts of praise are not beneficial. If you praise someone for being good at something, it makes them try less hard the next time and they worry about not being good in the future. Whereas if you praise them for hard work, it encourages them to work harder and improve on what they have done.

More than with the other books you’ve chosen, it’s very easy to identify with the people that Grosz writes about.

The stories are very relatable. I love the case of the man who used to retreat into daydreams about his house in France. I do that. Sometimes if I want to relax I imagine that I’ve fixed everything in my house, and wouldn’t it be lovely if I could convert something into something else. And so many of the chapters end in a pithy moment where you go ohhh, the house wasn’t real in this particular story! He’s been daydreaming about a house that wasn’t real. We can all imagine doing that.

It made me rethink what ‘rational’ means. The behaviours described in the book seem irrational at first, but when you understand what’s going on there’s a logic to them.

Absolutely. I think about this all the time. When you know someone who behaves in a way that seems objectionable to you – constantly tells you pathological lies, for example – you have a particular disregard for that person. Perhaps if we understood what was at the root of people’s behaviour, we would all be much more sympathetic to each other.

Although I loved this book, as a scientist I felt uneasy that there is no way to test whether Grosz is right about his patients. He comes up with compelling explanations but we only have his word for them. Do you worry about that in your own practice?

I think that to be a good doctor, and a good patient, always requires an acceptance of ambiguity. I’ve certainly encountered that in my practice. Some people feel like they’re not going to get 100% better unless they have an ironclad answer that is completely proven and incontrovertible. But, unfortunately, in the field of medicine, ambiguity exists and uncertainty exists. When I treat people with the same disease half of them will get better and half of them won’t, and I don’t know which half it will be. You can torture yourself by worrying about ambiguities and uncertainties or you can accept things and move forward. This is what I try to think about with my patients with psychosomatic disorders. I say, listen, if you’ve got no better answer, can you take this one for the moment and see how it benefits you? And if it doesn’t benefit you we’ll try something else. I think sometimes you just have to accept things and see how they help you.

In discussing these books we’ve covered physical and psychological symptoms as well as physical and psychological causes. In society we accept some of these as real and valid, while others are not seen as real, or as worthy of sympathy. Why are we so judgmental about certain kinds of conditions?

That is what I wanted to change entirely by writing this book. When I tell somebody that their seizures are dissociative rather than being due to epilepsy, they often get very upset. And I think that’s understandable, because people see things like dissociative seizures as not real. They immediately apply words like there’s nothing wrong with me after all, or there’s nothing wrong with you after all. Whereas the point is that if someone is having seizures or headaches or stomach pain, it doesn’t matter what the cause is, there is something wrong with them.

I think part of the reason people respond this way to psychosomatic disorders is because they believe it suggests a volitional component. People think that if your seizures are psychological then, to some extent, it’s deliberate and you could stop if you wanted to. That makes people very dismissive of these disorders. But I always say to my patients if I were anxious or frightened now and my heart was going at 150 beats per minute, you wouldn’t say stop it, or you’re doing it on purpose. You would understand that my heart is reacting that way for physiological reasons that I can’t control. I think there’s also a judgment people make that the pain you get from something psychological is less painful than the pain you get from cancer or a pulled muscle. Whereas actually the pain is every bit as real and can be just as painful if not more painful. Severity of pain doesn’t necessarily reflect a disease process. These symptoms are sometimes more disabling and more difficult to treat than other disorders.

What has the response been to your book? Has it started the discussion you hoped to have?

It’s hard to say at the moment. When I talk about psychosomatic illness at festivals or conferences, people are really relating to the idea. The minute you start talking about it, people realise they’ve had it. Not necessarily to the degree where they become disabled, but we’ve all experienced it. I describe in my book how I injured my foot and it took ages to recover. I know it was because I was worried about it, paying attention to it. I’m also beginning to get referrals. People are coming to me saying I think I have this, which is not something that ever happened before, so that’s brilliant. So I certainly feel that there is some raised awareness. But whether that is going to go even remotely far enough, I’m not sure at all.

What changes would you ultimately like to see?

I’d like to see changes in how doctors are trained. When I qualified in neurology, I was suddenly encountering these patients in huge numbers and I felt ill-equipped to do anything. Why? If this is a no secret to anyone and a large part of every doctor’s practice, why wasn’t I taught how to manage these problems? As a neurologist, you are taught to look for neurological disease. But a third of people you see will not have a neurological disease and you are not taught what to do when you encounter them. You’re essentially taught that they are not your responsibility and you must send them somewhere else, but where? I think we have to address that problem in medical school.

Ultimately, though, I think we need a broader shift in attitudes across society. If you knew a colleague was off work with seizures or in a wheelchair and you thought it was because they had multiple sclerosis but then you discovered it was actually psychological, would you see them differently? Would you have less sympathy? We need to realize that different sorts of disabilities deserve the same respect.

Interview by Jo Marchant

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