If you want to keep a secret, you must also hide it from yourself.
George Orwell, Nineteen Eighty-Four (1949)
CASSANDRA WAS THE daughter of the King of Troy. She had been both blessed and cursed. Her blessing was one of prophecy, Cassandra could foresee the future. Her curse was that she was not believed. That is how people with psychosomatic disorders feel. Their suffering is real but they do not feel believed.
Telling somebody that their disability has a psychological cause creates in them a feeling that they are being accused of something; they are being told that they are lying, faking or imagining their symptoms. For my patients to recover I need them at least to consider a psychological cause for their illness and to agree to see a psychiatrist. Even when the patient succeeds in this, their families often don’t. The most important and challenging aspect of my role is to support the patient and their family through the difficult journey they have to take. I do not always find that easy and I do not always succeed.
Shahina’s illness had begun six months before we met, following an incident at university. Shahina had turned up late to her lecture that day, not realising how this small thing would change her life. All the outer seats of the long tiered rows were taken. Rather than pushing noisily past her classmates Shahina took off her coat and sat on a step behind a row of other latecomers. She laid her coat across her knees and sat back with her hands placed behind her on the floor for support. For the next five minutes the door of the lecture theatre swung open from time to time as other students ducked in.
Shahina was just leaning to one side, craning to see the lecturer, when she felt a crushing pain. She let out a loud cry and a titter went up from the students nearest to her. The red-faced boy who had stood on Shahina’s hand muttered an embarrassed apology. He bent down mindlessly to touch her arm, as if that would take back what he had done. Shahina pushed him away and a tear came down her cheek as she held her hand to her chest. For the rest of the lecture Shahina could not quite concentrate as she watched a large dark bruise develop.
Shahina’s family had little sympathy for her that evening when she complained bitterly of the pain and refused to help with household chores. They reacted differently when they saw how swollen and bruised her hand was when she woke the following morning. Shahina’s mother took her straight to the casualty department where it was discovered that she had a hairline fracture of a metacarpal bone. Her hand was splinted and her arm was put in a sling. Her abashed mother drove her home and took the day off work to care for her. For the next three weeks Shahina could not use her right arm. She typed with one hand and used a Dictaphone to record her lectures.
When Shahina was finally allowed to remove her splint, her hand was thin and useless. Underuse had left it misshapen and a fraction of the size of its partner. The doctor told her not to worry and arranged for her to meet the physiotherapist, who advised on a series of exercises. She found the exercises painful but was glad to be able to do normal things again. The pain bothered her a bit, and her hand felt clumsy, but she enjoyed regaining her independence, fastening buttons, driving the car.
About two weeks after the splint was removed Shahina was sitting in a lecture when she felt an unpleasant cramp in her hand. Her pen slipped from her fingers and rattled noisily to the floor. She bent to pick it up but, just as she grasped at it, the cramp struck again. She found herself pawing uselessly at the pen as it slid between her fingers and rolled away. She had to leave it on the floor. For thirty minutes she found herself sitting mindlessly staring at her lecturer as his words floated by her.
When the lecture was over Shahina showed her friends her hand. The index and middle fingers were bending inwards. She could easily stretch them out flat with her other hand but as soon as she let go the fingers curled again slowly like a little animal avoiding danger. Her friends laughed when they saw it and for half an hour played the game of curl-and-uncurl with Shahina’s fingers. Shahina also found it funny, but only for a while.
That evening when she tried to eat her dinner she couldn’t hold a knife. Her parents were distressed to see their daughter suddenly disabled in this way. They phoned the physiotherapist and left a message requesting an urgent appointment.
Shahina saw the physiotherapist the next day. She stretched Shahina’s hand, which helped, but the problem remained. The physiotherapist advised Shahina to see her doctor again, which she did the following day. A repeat X-ray revealed that her fracture had healed well. Despite the reassurance of the X-ray Shahina’s hand did not feel any better. In fact she felt the X-ray had the opposite effect.
‘It didn’t feel as if I was being told that everything was okay. I felt as if I was being told that I was imagining it. The reassurances made me feel worse, not better.’
‘You were telling them that you couldn’t use your hand and they were telling you that you were fine?’
‘Yes, I told them my hand was not working properly and they essentially told me I was wrong.’
For a month Shahina exercised her hand several times per day. The pain increased. Her mother arranged for her to see a private doctor who gave her a series of muscle relaxants and painkillers. This helped the pain but did not prevent her fingers from curling inwards. Writing invariably resulted in cramp so, on the advice of the doctor, Shahina began to record lectures with her Dictaphone again and borrow her friends’ notes so that she could avoid writing for prolonged periods. And, at the suggestion of a family friend, she began to bathe her hand in ice every night before bed. All of this helped the pain but had no impact on what mattered most, her ability to use her hand. It took approximately one month for all four of Shahina’s fingers to curl in almost completely, rendering her right hand all but useless.
When Shahina and I met in the outpatient department, one month later, her arm was in a sling. The sling gave her relief. If she allowed her hand to hang downwards she found it crippled by a throbbing pain that could only be relieved by elevating it again.
‘If she lowers her hand you can almost see the blood rushing into it. Her hand is so lifeless that the blood just pools there with nowhere to go,’ said Shahina’s mother, who spoke almost as if her daughter’s hand was no longer part of her.
When I examined Shahina, I found all four fingers curled inwards, the index and middle fingers were completely folded with the fingernails hidden deeply from view. The half-moon of the cuticles of the ring and little fingers were just visible. The thumb moved freely which meant she could still pull at zips and buttons as long as they were loose and easy to access. Writing was impossible, the scribbles of a child. She could use her thumb to type but it was slow and full of errors.
When I tried to straighten Shahina’s fingers there was resistance. It was painful but possible to draw the fingers outwards so that the palm of the hand was fully bared. Four red welts were visible where the fingernails had burrowed into the skin. When I released the fingers they immediately sprang back into their coiled position.
‘She can open her fingers sometimes,’ her mother told me.
‘I can pry them open for just long enough to cut my nails or wash my hand,’ Shahina said.
‘Have you ever seen anything like that? Do you know what it is?’ her mother asked.
‘It looks like Shahina has developed focal dystonia. It’s a condition in which people’s muscles go into spasm. It can be triggered by trauma but we need to look for other causes. I am concerned about how disabled Shahina is by the problem so I would like to admit her to hospital for tests. That is the quickest way to get an answer.’
‘My daughter is precious; please don’t make her wait too long,’ her mother said.
When Shahina and I met again she had been admitted as an inpatient on the ward. Her hand was just as it had been when I saw her last. Blood tests, genetic tests and brain scans designed to look for an underlying neurological disease were all normal. An electrical study showed the muscles of the forearm in a constant state of contraction but did not say why. Patients who suffer with dystonia often have normal tests, so this did not imply any particular diagnosis. But Shahina’s dominant hand was useless to her now, and she needed her mother to close her buttons and cut her food. Something needed to be done. A specialist neurologist in movement disorders came to see Shahina and recommended that she be given a therapeutic trial of botulinum toxin.
Botox isn’t just for cosmetic use. It has long been used as a treatment for neurological disorders. In people whose muscles go into painful spasm, for whatever reason, it can paralyse the muscles so they relax. The paralysed muscle may then prove useless but if it results in an improvement in pain and deformity it can be worth it anyway. Botulinum toxin wouldn’t tell me what was wrong with Shahina but it could relax the muscles in her hand just enough to give her some use of her hand and some pain relief.
I accompanied Shahina to have the procedure. A small needle electrode was placed into the muscles of her forearm. The electrode recorded the excess electrical activity that was produced by the furiously over-contracting muscles leading to Shahina’s fingers. The computer converted the electrical activity to a noise, so that when the needle was inserted into Shahina’s arm the room filled with a wild crackling sound. The doctor running the test leaned over and turned down the volume.
‘Is that my arm making that noise?’ Shahina asked.
‘Yes.’
‘Is that what it is supposed to sound like?’
‘Not if you are trying to relax. If the muscles going to your fingers were able to relax there would be silence.’
Next the doctor took a small syringe filled with botulinum toxin, attached it to the needle and slowly injected. Shahina was watching the computer screen and I knew she was also listening intently to the noise it gave off. We were all listening. One minute is a very long time when you are just watching and listening but that is about how long we waited before we noticed the change. The static crackling that had been present since the needle electrode had been inserted was dying down. Shahina’s gaze moved from the computer to her hand. Her eyes were transfixed as her fingers slowly unfurled.
‘It worked!’ she cried.
The doctor who had given the injection looked at me with raised eyebrows.
That afternoon I went to the ward to see if Shahina’s improvement was sustained. I found her tapping away at the keyboard of her computer.
‘It hurts and my hand feels a bit weak but look how good it is.’ She opened and closed her fist. ‘I’m cured, can I go home now?’
What I did next I would regret many times.
‘I need to explain something to you, Shahina.’ I sat beside her on her bed as I spoke. ‘Botulinum toxin poisons the nerve ending and the result is that it relaxes the muscles. But it doesn’t usually work instantaneously. It takes a day or two for it to take effect.’
Shahina looked at me puzzled. I could tell she had not understood the full implications of what I had said.
‘But it worked straight away for me. That’s a good sign, right?’
‘Yes, which is all that really matters.’
‘Okay, so I can go home.’
Shahina had offered me an opportunity to retreat and I ignored it.
‘What I’m trying to say is that I don’t think it could have been the botulinum toxin that made you better. The recovery was too quick.’
‘But I got better right after the injection so it had to be the botulinum toxin.’
‘Sometimes, when we desperately want to get better and we are offered a treatment that we hope will help, we get better just through the power of our minds and the strength of our will. And getting better in that way might tell us a little about what caused the problem in the first instance.’
Shahina was staring at her hand, watching her fist opening and closing in front of her.
‘Shahina, the speed at which your hand responded to the toxin makes me wonder if there is a chance that the spasm in your hand might have a psychological rather than a physical cause.’
‘You think I’m mad?’
‘Of course not.’
‘What, then? What does psychological mean? Either I’m doing it on purpose or I’m going mad! Which?!’
The mood in the room had turned quickly. People passing the open door heard the raised voice and looked in.
‘Physical symptoms for psychological reasons happen to all of us.’
‘I can’t fucking believe it! I came to this hospital with muscle spasm in my hand and now I’m being told I’m doing it on purpose.’
A nurse came to pull the door closed. ‘I’ll give you some privacy, shall I?’ she said.
‘I’m very sorry that this is so upsetting for you, Shahina. Your hand is better. That’s what matters.’
Shahina sunk into silence. Minutes passed before she spoke again.
‘So what do I do now?’
‘You’re better so you can go home.’
‘What are you even talking about when you say it’s psychological? You haven’t even explained what you mean.’
The next ten minutes were delicate. I felt the conversation could veer in any direction at any moment, that every word had to be the right one. I imagine Shahina felt it too, the vigilance in the room. I explained psychosomatic symptoms to her.
‘I’m not saying that this is the case for you, Shahina, I’m just wondering. Does what I have said make any sense to you?’
‘I don’t know. No, it doesn’t make sense. It sounds like nonsense.’
‘Perhaps, in that case, it is best to put this idea aside for the moment. Your hand is better so let’s focus on that.’
Though it was of course too late to brush what I had said aside, we both knew that.
‘How can a hand go into spasm for psychological reasons?’
‘We all get physical sensations through stress sometimes. Have you ever felt your shoulders tense up through stress? This could be something similar, but, of course, worse.’
‘But I’m not stressed.’
‘I know, but you had a trauma, a difficult time with the broken bone in your hand; maybe it’s worth looking into how that affected you?’
‘I don’t want to see a psychiatrist.’
‘That’s okay; I don’t think it’s necessary at the moment.’
‘Where does that leave me? Will my hand stay better? Will I need botulinum toxin again?’
‘I think that since your hand is better now it will probably stay better.’ I was offering hope because expectations matter.
‘I’m sorry I shouted.’
‘I’m sorry you’ve had such a hard time.’
I left understanding that Shahina would go home and that we would meet again in the clinic in the future. An hour later I was called back to the ward.
Shahina’s mother stood squarely in the door. Shahina was sitting on her bed, packed bag beside her. Her father sat on the chair by the bed. A nurse joined me as I went into the room.
‘I want to know exactly what you said to my daughter,’ her mother said.
I explained that Shahina’s tests were normal but that her response to the botulinum toxin had raised some concerns.
‘My daughter has told me that you said she was doing this deliberately.’
Shahina’s mother stood in front of me and I could not see her daughter.
I craned to talk to Shahina. ‘I don’t think you are doing anything purposefully, Shahina, I am just worried that there is something underlying your dystonia that we haven’t fully explored. I may be completely wrong, I accept that, and I’m sorry if I am.’
‘Sorry won’t cut it,’ her mother said. ‘Do you really think a young girl could hold her hand in that position for weeks? There are welts on her hand. She’s in pain.’
‘Shahina’s spasms of her hand are involuntary and very disabling, we all agree on that.’
‘She has a broken bone on her X-ray. Can you acknowledge that?’
‘Yes, the dystonia was clearly triggered by a trauma.’
‘So you still admit she has dystonia?’
‘Yes, Shahina has dystonia. The question we have been trying to answer is why.’
‘I know my own child. She is a bright girl, halfway to being a lawyer. She works hard, she is never ill. I guarantee you that if she had any control over this it would not be happening.’
As the questions and answers passed quickly between us I suddenly felt as if Shahina had left the room, as if it was just me and her mother standing there. Shahina and her father had blended into the background.
‘Shahina …?’ I tried to get her back.
‘I am going to take my daughter home and when I get there the first thing I am going to do is write a complaint letter about you.’
At this cue Shahina’s father picked up the suitcase and gently put his hand on his daughter’s back to usher her along. Shahina stood up from her chair and took her handbag from her bed. I watched as she clutched that bag tightly in her right hand and walked out of the room behind her mother.
‘She doesn’t believe there’s anything wrong with me,’ I heard her say as she crossed the threshold.
‘She’s wrong,’ her mother turned to answer and, in doing so, caught my eye. ‘This is not the last you will be hearing of this.’
For a parent illness and disease jeopardise the opportunities they dreamed of for their child. They are angry at the disease that robs them in this way. When that illness becomes psychological, where does the fault lie? Who can they be angry at then? Themselves? Or has their child become stained with something so stigmatising that they cannot bear to look? With no other choice they redirect their attention somewhere else.
A week later the letter of complaint arrived:
I would like to complain about the treatment that my daughter received at the hands of Dr O’Sullivan. My daughter has been severely disabled with spasms of the right hand for some time. Despite the purely PHYSICAL nature of my daughter’s symptoms, and based on no evidence that I can see, Dr O’Sullivan summarily accused her of having psychological problems!! My daughter, who is a law student and extremely reliable, says that Dr O’Sullivan approached her without warning and advised her that she was imagining her symptoms.
The letter continued in this vein. It was printed on the headed stationery of the law office where her mother worked. It ended by saying that Shahina had met with another doctor who had assured her that there was no possibility that the problem could be psychosomatic. It did not include any correspondence from that doctor.
After that I sent several letters to Shahina asking her to meet me again in the outpatient department. She did not respond. I had to wait over a year before I heard anything further about her progress. The news came in the form of a letter from another neurologist at a different hospital.
Dear Dr O’Sullivan
I would appreciate if you could send me any test results that you have for this young lady. She tells me you diagnosed her with focal dystonia and that you gave her botulinum toxin with good results. When I saw her first her dystonia had recurred and she responded well to a further administration of Botox. That improvement was not sustained however. I’m sorry to say that ultimately the dystonic contraction moved to her left arm and is now spreading to her trunk. She seems to be developing a generalised dystonia for which I cannot find a cause. I wonder what you thought when you met her? I am beginning to wonder whether some, if not all, of her problem may be psychological in origin.
It is not unusual for patients who reject the possibility of a psychological component for their symptoms to seek out other medical opinions that seem more palatable. Unfortunately if a treatment works more through its placebo effect than its biological effect the benefits of that treatment are not always sustained. That is not to say I have not wondered many times if the outcome for Shahina could not have been very different if I had managed to communicate my suspicions to her and to her family in a better way.
Over the years I have tried to learn how to temper a patient’s response. The manner in which the diagnosis of a psychosomatic condition is delivered is of pivotal importance to what happens next. If the patient feels that they have been told that their symptoms are imaginary they will walk away. It is too often just that which prevents people getting the help that they need and deserve.
Even when a diagnosis of psychosomatic illness is delivered carefully anger is a common response and it is always flagrant. When it comes in the form of a letter it is filled with capital letters and underlining and exclamation marks. Even in the written word the patient is straining to be heard and believed.
Anger has a purpose. It tells others we are not alright. It also has a lot in common with psychosomatic symptoms. It can be misleading because often it is something else in disguise – hurt or fear repackaged. It is easily misinterpreted, both by those who feel the anger and those at the receiving end. And its effect may be detrimental. It is frightening. The person at whom the anger is directed may well be compelled to flee, possibly just when they are most needed. Anger can destroy the relationship between patient and doctor. The doctor escapes or avoids or ends up treating the anger and not the patient.
I have come to accept anger as a stage in a difficult process. An unpleasant truth is being forced out into the open and that does not come without consequences. Anger will often dissipate with time, but there are other defence mechanisms that are far greater barriers to recovery, including denial.
I see Shaun every three to six months. Usually, I wait to hear from him and when I do I send him a clinic appointment. Sometimes he phones me himself to say things are going badly. Other times I get a call from a doctor at another hospital to say he is in the casualty department. Those are the best scenarios; the worst are when I get a letter a week after he has been discharged from an intensive care unit: this man was admitted in status epilepticus, we have started him on Phenytoin, we understand he is under your care with epilepsy …
Shaun and I had met two years previously. When he fell ill he was a teacher. On the day of his first seizure he was at work. Halfway through the morning he had started to feel unwell. He was nauseated and felt weak and dizzy. A colleague suggested he go home and offered to drive him, but he insisted on driving himself. Shaun lived two miles from the school, and was almost in view of his street when he lost consciousness. He remembered nothing about what happened. He awoke, still seated in the car, which was stalled and half on the pavement. The road was empty of other cars. There were no witnesses.
Shaun saw his doctor who advised him against driving and referred him to a neurologist. With very little information to go on the neurologist did not feel confident that he could say why the blackout had occurred. Tests were arranged. The brain scan was normal. The EEG brainwave test showed some irregularities that were not felt to provide conclusive proof of epilepsy but were sufficient to make the neurologist suspect that diagnosis.
Shortly afterwards Shaun had a second collapse. This one was witnessed by his wife. She reported that Shaun turned deathly pale and collapsed like a rag doll to the floor. Soon this was a regular recurrence. Shaun was started on drugs for epilepsy. At first the drugs helped and Shaun’s collapses disappeared for a full month. Everybody was very relieved, feeling sure that an uncertain diagnosis had proven right. But soon the seizures were back and worse than before. By now Shaun shook violently during the attacks, which lasted an increasing length of time. Soon Shaun’s wife noticed that he would drift off mid conversation for seconds at a time, and she suspected that he was having other seizures that did not lead to collapse. Shaun was given a second epilepsy drug. Again his seizures disappeared but came back, this time after three weeks. At that point Shaun was referred for video telemetry. During three days in hospital Shaun had multiple convulsions and brief episodes of losing awareness. His wife was by his side every day and was with him when we met and I told him that he did not have epilepsy, he had dissociative seizures.
‘It makes no sense,’ his wife said.
‘The test was conclusive,’ I told her.
‘If he doesn’t have epilepsy, then why did the epilepsy drugs make him better?’ she asked, reasonably.
‘Drugs can make dissociative seizures better for a variety of reasons; because we desperately want to get better and believe they will make us better; because epilepsy drugs do more than control epilepsy, they can improve mood and make us feel generally better in ourselves.’
‘A colleague at work whose child has epilepsy saw one of my seizures and said he was sure it was epilepsy,’ Shaun said.
‘Dissociative seizures are very easily mistaken for epilepsy. I have the benefit of your test results, so I am absolutely sure about the diagnosis.’
‘Can an EEG ever be normal during an epileptic seizure?’
‘Not in the sort of seizures you have.’
‘So it can be normal in some sorts of epilepsy.’
‘It’s never normal in convulsions.’
‘What sorts of seizures is it normal in, then?’
‘I know it is very difficult to be given a change of diagnosis after months of being told that you have epilepsy. I don’t want to dismiss these seizures because they have impacted on your life. But there is another perspective. You have lost your driving licence. And your job. You’ve been on toxic drugs that haven’t helped. We know what is wrong with you now. This illness can be cured. It takes time but now we know what’s wrong you can be treated and you can get everything you used to have back again.’
Would Shaun be willing to make the sacrifice required to get better? Would he relinquish the diagnosis of epilepsy and take on one that offered a chance for him to recover but was difficult to bear? Shaun agreed to meet the psychiatrist, after which I met him again.
‘I’ve been talking to the other epilepsy patients, they have the exact same symptoms as I do. How can this not be epilepsy?’
I didn’t answer, we had been over this before.
‘Is it possible that some of my seizures are epilepsy, just not the ones you have seen?’
‘How did it go with the psychiatrist?’
‘It was fine. She said I’m not depressed but I knew that already.’
The psychiatrist had told me that Shaun was not depressed, nor anxious, but she also told me a story that Shaun had not. A year before his seizures began a teenager at his school had accused Shaun of hitting him. Shaun had pleaded his innocence. The pupil said they were alone when it happened. With no proof to vindicate Shaun he was suspended. An investigation followed taking three months. Shaun could not work during that time. The problem had only resolved itself when a friend of the pupil told another teacher that no assault had occurred. The story had been made up as an act of revenge for some slight that Shaun had committed but could not even remember. Shaun’s tearful accuser eventually admitted the truth. Shaun got his job back. His fellow teachers, who had never believed the accusation and had supported him throughout, were jubilant at his return.
‘He had three months of humiliation and absolute hell,’ the psychiatrist told me. ‘He believed he would be prosecuted, he would go to jail, never work again. He couldn’t see a way out.’
But now Shaun believed absolutely that he had been through his greatest trial and had put it entirely behind him.
‘I don’t think he can accept how the accusation affected him and I don’t think he’s going to accept the diagnosis,’ the psychiatrist said.
So far the psychiatrist’s assessment was proving right.
‘The other neurologist said I have epilepsy,’ Shaun said.
‘You were sent to me because your doctor was no longer sure about the diagnosis.’
‘My first EEG was abnormal. The doctor who reported that EEG said I might have epilepsy.’
‘EEG tests are open to interpretation, everybody’s are different. It’s easy for a small irregularity to be labelled as an abnormality, when really it is just evidence that we are all a little different on the inside just as we are on the outside.’
‘Everybody’s telling me something different,’ Shaun said.
‘I have the benefit of seeing your seizures in the video-telemetry unit. The other doctors only had the story to go on.’
‘I’ve read about epilepsy, all my symptoms fit.’
Shaun was not the first and would not be the last to have difficulty believing the diagnosis. We would ride out his confusion together and I would wait to see where we ended up. Shaun stayed in hospital for one further week as his epilepsy drugs were withdrawn. On the day he was due to go home we met again.
‘I’m not saying that I agree with you, but I’ll do whatever you suggest. It can’t do any harm.’
I was pleased.
I left Shaun and his wife with one final instruction: I told them that the seizures might stop after he went home, but they might not. If they continued they were not dangerous, so Shaun’s family and friends should avoid calling an ambulance, if they could. Dissociative seizures are fed by the attention they receive.
‘So we should do nothing when they happen?’ His wife looked worried.
‘Never be afraid to call for help if you need it, but it is better if you just let them happen.’
When I met the psychiatrist later I told her of the progress we had made.
‘I think he’s coming round to the idea,’ I said, ‘I’m really hopeful that he will do well.’
‘I think you’re wrong.’
She was right, of course.
In the twenty-first century psychosomatic illness is a socially unacceptable disorder. That was not always the case. There was an era when things were very different, when patients embraced hysteria as a diagnosis. That era was ruled over by Jean-Martin Charcot and it starred Blanche Wittman.
The nineteenth century had seen the birth of spinal irritation and the reflex theory, both of which were purely speculative theories, based on little physiological or anatomical fact. Both gained great popularity, particularly with the rich who could afford to pay for the recommended treatments. However, there were many doctors who still considered hysteria to be a sign of insanity. Hysteria in the poor in particular was still attributed to madness and the poor were consigned to an asylum just as often as they had been one hundred years before. There would be a sharp change in attitudes as a result of the work of Jean-Martin Charcot.
Charcot was one of the most powerful doctors of the nineteenth century and one of the most famous neurologists of all time. Amongst his other achievements he would spend decades trying to understand hysteria. He was the first doctor to subject it to rigorous scientific study. In doing so he would attract great minds to the disorder. He would not find the solution, and everything he believed about hysteria would eventually be discredited, but the attention he brought to the disorder was enough to see it transformed.
Imagine the scene. It is 1887 in Paris. Blanche stands at the front of the auditorium. She is by far the most conspicuous person present. She is the star of the show but she would be conspicuous even if she were not. There are more than thirty people in the room and she is one of only three women present. Even amongst those three Blanche is worthy of attention. Her white blouse is open to reveal her cleavage. Her skin is pure creamy white. Her brown hair, perhaps tied up neatly at the beginning of the day, is now loosened and is giving her a wild appearance. The other two women are nurses. They each wear bonnets tied tightly under their chins. Their tunics are dark in colour, and stiff, and buttoned up into a high collar. Nobody has come to see them, though.
Jean-Martin Charcot stands beside her. He is the most pre-eminent neurologist in Paris and Blanche is his patient. A dim light breaks through the high windows. The light sets Blanche’s pale exposed skin in stark contrast to the audience of austere, dark-suited men around her. The men write furiously lest they miss any fragment of what is said. They are keen to see the specifics of what happens next. They have only ever heard the phases of la grande hystérie described.
But not all the eager voyeurs are doctors. Charcot’s Tuesday lessons have gained such notoriety by now that they have become of interest to all of fashionable Paris. André Brouillet, the artist, bears witness. Charcot’s son, Jean-Baptiste, is also in the audience. He is a medical student but in the future he will be better known as an explorer. Le tout Paris is present and when the lesson is over the greatest amongst them will be invited to retire to the drawing room of Charcot’s home on boulevard Saint-Germain for an evening of more refined entertainment. Blanche will return to the locked hospital ward where she has been resident for eight years.
In the 1800s the Hospice de la Salpêtrière in Paris was an asylum. More than 8,000 patients were incarcerated there, from the lowest sections of society: prostitutes, beggars and the aged poor. Many were deemed mad through venereal disease, others simply mad. It was the least prestigious medical institution in Paris, which is what made it so singularly unexpected when one of Paris’s most promising young doctors chose to take a permanent academic position there. In 1863 Charcot chose to dedicate his future to the Salpêtrière. He had seen the possibilities, even if others had not. What Charcot had recognised was that the infirmary created a perfect stable population for scientific study. Charcot had found the ideal environment to employ the new technique called the clinical-anatomical method.
In a time that lacked sophisticated investigations Charcot began to follow disease from its early stages to its very end. He did so by employing the technique of carefully recorded and thorough physical examination. He tracked each patient’s progress and rigorously documented what he observed. In an elderly and sick population patients regularly died. When they did it allowed Charcot, who was initially a professor of pathology, to examine them post-mortem. He was then able to correlate what he had seen physically in life with what he found microscopically in death. Charcot was senior physician at the Salpêtrière for over thirty years. In that time and through this method he defined more neurological diseases than any other doctor before or since. Pre-Charcot, the tremor seen in Parkinson’s disease could not be differentiated from that seen in multiple sclerosis. But his scrutiny of the patient’s clinical condition, combined with his examination of the brain after death, allowed him to distinguish the two. What he discovered allowed doctors to clinically identify many previously poorly understood disorders – motor neurone disease, syphilis and polio amongst many others.
Charcot’s detailed scientific study and clinical-anatomical method would change neurology to such a degree that the impact of his discoveries is still felt. Which is precisely why it is so surprising that when it came to hysteria Charcot’s theories would prove to be so wrong.
Perhaps it was always inevitable that Charcot would be drawn to hysterical illness. The Salpêtrière housed a large number of hysterics and the majority of doctors working in the asylum were psychiatrists. Having proven its use in other diseases, he soon applied the clinical-anatomical method to hysterics in the Salpêtrière. He renamed their illness la grande hystérie and dedicated himself to it.
From the outset Charcot’s practice differed from that of other doctors. He did not visit his patients on the ward. They were brought to him in his office. He sat behind his desk like an observer and barely touched the patients, but instead gave instruction. The patient undressed and he watched. His interns reported interminable silences during which he would only stare. Then he would ask the patient to stand or walk or lift an arm and he would stare again. It was likely in a setting such as this that Charcot met Blanche Wittman.
Blanche was admitted to the Salpêtrière in 1878. She was born in poor circumstances. Her mother died when she was young, her father was a carpenter who was institutionalised when Blanche was a child. To support herself Blanche was a laundress, a furrier’s apprentice and a nurse. Blanche had her first convulsion at the age of fifteen. It was provoked by a sexual assault made by her employer. At the age of sixteen she was admitted to the Salpêtrière. She would never leave. The story of her life before the Salpêtrière is largely based on rumours, but her life after admission was lived publicly and recorded. She was scrutinised, photographed, painted, written about, studied and never forgotten.
For a decade before Blanche’s admission Charcot had carefully documented the features of la grande hystérie in the expectation that he would be able to explain it as he had other neurological diseases. He subjected patients to close clinical scrutiny, carefully documenting every clinical sign they displayed. He began to notice distinct similarities. The hallmark of the illness was seizures, and each seizure presented with a very specific pattern that did not vary between individuals. He noticed that seizures were often triggered by trauma, either physical or psychological. These features were each important in the diagnosis but there was another feature that became the hallmark of the condition in his mind. The sufferers had a unique vulnerability to hypnotism and he considered this an important diagnostic feature of the illness.
Every week, on Tuesday and again on a Friday, Charcot gave lectures during which he demonstrated the clinical features of hysteria. He induced hypnosis in his patient. In this state the clinical features of hysteria could be produced and reproduced for any audience. Blanche and others were triggered to convulse as Charcot stood by their side detailing the stages to the astonishment of those watching. He showed the audience the depth of his patient’s detachment from their surroundings by asking them to partake in activities to which they would never agree in their fully conscious state. Women undressed or crawled around the room on hands and knees like a dog.
Charcot also experimented with metallotherapy. It was widely believed by patients and doctors that magnets had great powers. Charcot demonstrated that magnets could shift symptoms from one part of the body to another or even from one person to the next. Convulsions could be transferred from the right arm to the left. Even more incredibly an affliction could be taken from one woman and given to the one beside her.
It was not only hypnotism that could be used to produce hysterical attacks. The symptoms could also instantaneously appear just through applying pressure to the ovary. Charcot did not completely disagree with the other theories still in play at the time. He demonstrated that such pressure did not only cause seizures but could also be used to terminate them.
Over many years Charcot carefully detailed and demonstrated the diagnostic manifestations that he considered absolutely typical of hysterical disease; the loss of normal sensation, the restriction of the visual field, headaches, dizziness and, of course, convulsions. But it was not so easy for Charcot to document his hysteria patients all the way to death as he had with other diseases, because hysteria was never fatal. Fortunately, however, the inmates of the Salpêtrière were rarely released, so it was inevitable that hysterics would eventually die for other reasons. When a patient died he could examine their brain for a pathological explanation of their symptoms. He never found one. He examined the ovaries and they too were normal. What is strange is that despite this lack of pathological evidence he held the almost unshakeable conviction that hysteria was an unequivocally organic disease. In the absence of an identifiable brain lesion he noted how stereotyped the disorder was between different patients, every seizure was the same and obeyed the same rules. Madness was rarely so uniform. He noted that sufferers often had a family history of hysteria or had a relative committed to an asylum. He became convinced that hysteria must be an inherited disorder in which functional lesions in the brain came and went. He imagined swelling of the brain that disappeared at death and, in doing so, escaped detection.
Hysteria responded to the attention paid to it by Charcot. There was a dramatic increase in cases and in 1890, under Charcot’s protection, hysteria had reached epidemic levels in the Salpêtrière. By bringing the scientific study of hysteria to the fore, Charcot created a plague of hysterical seizures that quickly spread to all of France and then throughout Europe. In a single year Charcot alone saw more than 3,000 patients, 800 of whom were diagnosed with hysteria. The late nineteenth century was the age of hysteria. It was created by one man and would prove dependent on him. In 1893, after a thirty-year reign, Charcot died. It took less than one year for Charcot’s version of hysteria to follow him. The rate with which the diagnosis was made plummeted and many hysteria patients that had been under his care went into remission. Charcot had made hysteria acceptable, even popular, but he had only succeeded in doing so by strongly reinforcing it as an organic disease of the brain. Others would take the next step, but with that hysteria would lose its acceptability once more.
I planned to meet Shaun again in the outpatient clinic a month after he went home, but circumstances demanded that we met again much sooner than that. Six hours after Shaun was discharged from the neurology ward I received a phone call from another hospital to tell me that he had been admitted there.
Shaun’s wife had been driving him home when he had a seizure. She had pulled the car on to the hard shoulder and, when the attack did not show any evidence of stopping, she called an ambulance. Shaun was taken straight to the nearest hospital. The seizure was the longest he had ever had. The doctors in the casualty department had started him on emergency drugs, treating him for status epilepticus, a life-threatening, unrelenting epileptic seizure.
Medicine can be a wonderful career, one in which there are many instantaneous rewards. Then there are times when everything you have done seems to have been for nothing. This was one of those times. I sat imagining the discharge letter tucked into Shaun’s pocket, the one that said ‘I am happy to say that this man does not have epilepsy, his seizures are non-epileptic, I have stopped all his epilepsy medication.’ I wondered if his wife had shown it to the doctors. She probably did, there had never been anything covert in Shaun or his wife’s behaviour. So, if they had shown the doctors the letter, the doctors had ignored it.
I rang the junior doctor who was looking after him at his new hospital.
‘You know he doesn’t have epilepsy,’ I told her.
‘That’s what his wife told us, but his seizure just wasn’t stopping. He’d been fitting for over twenty minutes.’
Dissociative seizures are not dangerous, I have seen them last for several hours. Those hours should be spent sitting quietly, reassuringly, with the patient. I understood the casualty doctor’s position. Imagine you are watching Shaun convulsing but I have told you not to intervene, how long would you last? In the car his wife had lasted ten minutes. In the casualty department the doctors had lasted twenty.
Shaun was discharged from hospital and I met him one week later in my clinic. His wife reminded me strongly that my instruction to let him be during a seizure was of no use whatsoever on the hard shoulder of the motorway. Intervening when psychosomatic symptoms occur perpetuates them, you are paying attention to something that wants attention desperately and that is ill-advised. But that is the advice I give from the safe distance of my office and it is not easy to carry it out in the world. I discussed the diagnosis with Shaun and his wife once again.
‘But the doctors in casualty were convinced I had epilepsy,’ he said.
‘That was probably the only seizure those doctors had seen in their whole career, Shaun,’ I answered. ‘They thought they were doing the right thing, they wanted to help you, but what they did was wrong.’
‘I need you to explain the whole thing again. Why did the first doctor say I had epilepsy? Why are you dismissing the abnormal EEG? Why did the epilepsy drugs make me better?’
So I explained it again. Later I told the psychiatrist what had happened.
‘It’s not surprising,’ she said. ‘Shaun was incredibly proud of his career, it defined him. What happened at work threatened not only his whole life but his view of himself. Now you are threatening that again.’
Since then Shaun has been admitted to another hospital on three further occasions because of seizures, each time receiving epilepsy drugs he didn’t need. Shaun and I meet every few months now, and each time our conversation follows a similar thread.
‘I accept that my old seizures were not due to epilepsy, but I have a new sort of attack, I’m sure it’s epileptic,’ he says.
People with epilepsy sometimes develop psychogenic seizures. The mechanism is unknown but I think it is learned behaviour. If you have lived a lifetime of epileptic seizures, then when you are distressed, your body harks back to previous experience and calls on it for an expression of your distress. But there is no reason for somebody with dissociative seizures to develop epilepsy at a later date.
‘No, Shaun, it’s not epilepsy.’
‘No? Okay. My wife found an article in the newspaper about a woman who had a disease called limbic encephalitis. She said it sounded just like me. Have I been tested for that?’
‘Limbic encephalitis causes epileptic seizures. We have clear recordings of your seizures and they were not due to epilepsy. You absolutely do not have limbic encephalitis.’
‘Have you ever heard of stiff person syndrome? It causes muscle stiffness and my muscles get stiff in my seizures.’
‘But your tests were normal, they showed nothing like that.’
‘My seizures are no better, do you think I should try more epilepsy drugs anyway? Just in case?’
‘You do believe that your seizures are not due to epilepsy, don’t you, Shaun?’
‘Yes, of course I do.’
I welcome anger in comparison to denial. Anger tells me that the message has been heard, but denial says it has not. Where a diagnosis cannot be clearly demonstrated with positive tests, doubt has room to grow. Where the mechanism of an illness is so poorly understood, questions flourish. To a person struggling against the possibility of a psychological diagnosis, the unknowns create a hiding place. Denial of the diagnosis is far harder to counter than anger and far less likely to end in recovery. It is likely that Shaun’s seizures will go on until they are replaced by another expression of distress, another illness.