In every voluntary movement it is the idea that triggers the corresponding contraction of the muscle; therefore it is not inconceivable that the idea should hinder the movement.
Josef Breuer, Studies in Hysteria (1895)
IN THE LEGAL system the burden of proof requires evidence to support the truth. But in the case of psychosomatic disorders the diagnosis often rests on the lack of evidence. The diagnosis is made when disease is sought but not found. It can be very difficult for a patient to accept that they suffer with a conversion disorder (a medically unexplained neurological symptom) when that assumption is based almost entirely on what is missing. It requires great trust between patient and doctor. Every week I tell somebody that their disability has a psychological cause. When they ask me how I have come to that conclusion all I can provide is a list of normal test results, evidence for the diseases that I have ruled out. When a person is paralysed or blind or suffering with convulsions it is not difficult to see why they find that a very unsatisfactory explanation.
‘I am completely sure that you do not have multiple sclerosis.’
‘How sure are you?’
‘All of the tests are negative. You do not have multiple sclerosis.’
‘What percentage are you sure?’
‘I am absolutely sure.’
‘You can’t be one hundred per cent sure. Nothing is ever one hundred per cent.’
I could feel Matthew’s desperation tugging at me. He was willing me to say any number that was less than one hundred. And I could see that even if I said that I was ninety-nine per cent sure, I would have offered him some doubt, however small. A part of his brain was hoping for just that. And in the face of his question I was forced to question myself. Was I as sure as I said I was that Matthew did not have a disease? Should I simply have agreed with him that nothing was ever unequivocally certain? I was very convinced that his disability was functional, that there was no organic cause underlying it, but was I one hundred per cent convinced? Of course, I know what was holding me back from offering Matthew any of my uncertainty. He was struggling with the diagnosis. Any shred of possibility that a physical disease had been missed offered him hope that his illness was not psychological and he might cling to that. If I allowed him any glimpse of my doubt I could be sending Matthew on a quest for a disease that might easily take up a lifetime.
Matthew was a product of the Internet age. When he came to me his research had utterly convinced him that he had multiple sclerosis. Throughout our first conversation he kept using the words ‘my multiple sclerosis’. ‘Is my multiple sclerosis more severe than other people’s?’ ‘How will my multiple sclerosis affect my life insurance?’
Matthew’s problem began with a feeling of pins and needles in one foot. At first it affected him only if he sat for prolonged periods. Sitting at his computer in his office he would feel the tingling and would need to stand and move around to make it go away. In the evenings it would go but the next working day it was always back.
After having the symptoms for nearly two weeks Matthew went to see his doctor. He was assured that these sorts of symptoms were not uncommon and rarely meant anything worrying. The doctor examined him and told him that everything was okay. He was advised to take regular breaks at work, to avoid sitting for too long.
Matthew followed his doctor’s advice but found it of little help. More worryingly, he noticed his symptoms change and spread. The pins and needles were now moving around his body, one day in an arm, the next over the bridge of his nose, then in the back of his head, then his lower lip. He no longer needed to be seated to feel the tingling. It could strike at any time and any part of him. Matthew went to see his doctor again. Again the doctor examined him and told him that he could find nothing wrong.
‘I have often heard people describe symptoms like these,’ his doctor said, ‘and I have never seen them lead to anything serious. Stop thinking about it and it will disappear.’
Matthew was not satisfied. He took it upon himself to research the possibilities. The Internet advised him that diabetes could damage the nerves and lead to pins and needles. Matthew stopped eating sugary foods but got no better. Again he discussed his concern with his doctor who told him that his blood sugar was normal. He did not have diabetes.
Matthew read that trapped nerves were a common cause of his symptoms. Tired of his doctor’s dismissiveness he went to see a chiropractor. The chiropractor wondered if Matthew might not have a disc out of place in his neck and suggested a course of treatment. This helped only briefly.
Matthew tried adjusting his life. First he began to exercise vigorously and regularly. He thought it was possible that he might have poor circulation and that exercise would correct it. When this did not help he tested the effect of avoiding exercise and resting as much as possible. The patches of numbness spread to his trunk.
Nothing Matthew did to help himself made him any better. By now he was finding it difficult to work. Sitting for prolonged periods was impossible. His workplace had assessed his office space and made changes but it made no difference. He cut down his working hours. He began to work from home. At the same time he intensified his research. That was when he discovered for the first time that multiple sclerosis could cause sensory abnormalities that moved around the body. In reading the stories of MS sufferers his own story was reflected back at him. At his request his GP finally agreed to refer him to a neurologist.
At last Matthew felt that he had made some progress and this made him feel better. But, at the same time, the potential diagnosis began to play on his mind and soon he felt worse. Matthew’s symptoms had begun to evolve with everything new he learned. The tingling and numbness were constant now. He noticed pain and loss of balance if he walked any distance. He began to feel dizzy. Tiredness overwhelmed him. Two months had passed and by now Matthew was working almost entirely from home.
Then one day, before the date of his appointment with the neurologist, things abruptly came to a head. Matthew awoke to find that he had lost all strength in his legs. Numbness and pain were replaced by nothing, no feeling at all and no movement. His wife called an ambulance and he was taken to his local hospital where he immediately underwent a scan of his spine and brain. They offered no explanation. Matthew was admitted to hospital for further tests.
Over the course of the next few days Matthew underwent a series of investigations. A lumbar puncture took a sample of his spinal fluid and that was normal. Blood tests and electrical studies of his nerves and muscles showed nothing wrong. Matthew stayed in hospital for two weeks. During that time, even without a diagnosis, the strength in his legs improved slowly although not completely. When the neurologist had exhausted the investigation Matthew was given a wheelchair and a walking frame and sent home. The following day his distressed wife made an appointment to see their GP and one hour later the GP phoned me.
‘This family is at breaking point. His wife is furious that her husband has been sent home with no diagnosis and no plan.’
‘What were they told before discharge?’
‘She says nothing.’
I arranged to see Matthew in the next available outpatient clinic. In the meantime I contacted his original hospital and asked for a copy of his records.
A week later Matthew’s wife wheeled her husband into my office. Her expression was firmly set. I said hello and in return she offered a curt nod. Matthew was almost the opposite of his wife. He greeted me cheerily. He was seated in his chair, smartly dressed and with a sheaf of papers resting on his knee. He offered a warm handshake as his wife pulled up a chair and sat beside him. Once we were all seated I asked Matthew to tell his story from the start.
‘I know I have multiple sclerosis,’ he began.
‘Let’s not make any assumptions. For the moment just tell me how your symptoms started and how they evolved.’
Matthew took out his diary and opened it on the table between us.
‘On the tenth of June, I got the first feeling of parasthesia in my right foot. I was at a barbecue at my brother’s house. It was his birthday. We had been sitting in the garden for most of the afternoon. I suppose we arrived at about one and I noticed the problem at about four. Or maybe a little later, maybe five o’clock. I stood up to go into the house and my foot felt strange. It was a horrible sensation.’
Carefully Matthew detailed the events of that day and then of the gradual progression of events that led up to the day when he lost the power in his legs. Occasionally I asked an additional question. Every answer came in the affirmative.
Blurred vision? I have that, sometimes when I stare at a book all the letters come together.
Tiredness? All the time.
Bladder disturbance? Yes.
As I listened I tried to spot an anatomical pattern that would explain everything, but all I could see was that what Matthew was describing was impossible. There was no part of the nervous system that if diseased could account for everything that he described. But, at the same time, I wondered if he was simply elaborating on a simpler story. Maybe he had an organic neurological problem and it was being magnified and contorted somehow by the depth of his concern. So I kept listening. All the time Matthew’s wife sat silently beside him while her husband listed each point documented in his diary. And Matthew was very specific.
‘John always has a barbecue to celebrate his birthday, weather allowing of course. If the weather isn’t good he might do something else. John lives in Kent.’
His language was peppered with medical phrases.
‘I also have facial neuralgia and tinnitus.’
His story was detailed but he was strangely casual about his degree of disability for someone who three months previously was active and in full-time work.
‘I have asked someone to come and put handrails up in my house. I think it will help me get around more easily.’
‘What did the doctor say when they sent you home from hospital?’ I asked.
‘Nothing.’
After Matthew had finished telling me his story I asked to examine him. Although he was in a wheelchair he could walk short distances and moved, with difficulty, to the couch so that I could do this. When he was lying down I tested the strength of his muscles one by one.
I asked him to lift his leg off the couch. ‘Keep your leg straight and lift it.’
Matthew couldn’t. His whole face contorted with the effort. His right leg moved a few centimetres into the air and then he reached with his hands, cupped them under his thigh, to lift it further.
‘Point your toe,’ I asked him next.
Matthew’s foot lay inert but his face told me that he was trying.
When I pressed a blunt pin to his leg he could not feel it. When I applied a vibrating tuning fork to his skin he felt nothing below the waist. But the power to move or perceive sensations are things over which both the conscious and subconscious mind have some control so next I tested the things where this is not the case. Despite the lifelessness of his legs the reflexes reacted as they should. The tone of his limbs felt normal.
When I had nearly finished the examination Matthew stood again and I asked him to walk. He locked his knees tightly and walked with straight legs and with great difficulty. I asked him to try to take a few steps on his toes. Great effort was required but he managed a few short tippy-toe steps. And I asked him to sit on a chair and stand with his arms folded and after several tries he managed it. Matthew didn’t realise yet that I had tested the same muscle groups in several different ways and that each time they had behaved differently. The same muscle that wouldn’t allow him to move his leg as he lay on the couch had allowed him to rise from a seated position in a chair.
At the end of the consultation, as much as Matthew was convinced that he had MS, I was convinced that he did not. There were too many inconsistencies. Neurologists look for patterns. A disease of the spine causes one distinct set of symptoms, a disease of the nerves another. Brain disorders cause certain groups of muscles to be weak while others are surprisingly strong. Matthew’s pattern did not fit with any anatomical location. I could not take dizziness and weakness of every muscle and numbness in the face and attribute them to a single diagnosis. And the examination presented other problems. The subjective part of the examination, concerning those things over which the subconscious has some control, such as strength and feeling, was abnormal; while those reflexes that are objective and less likely to be influenced by the mind, such as reflexes and muscle tone, were normal.
But Matthew was more than the sum of his medical history and clinical examination, he was a person with a life beyond his illness and in that life I saw other points of concern. Matthew had always seen his doctor regularly. In five years he had been prescribed five courses of antibiotics. He had had investigations for a number of medical problems in recent years. He had a scan to investigate back pain. He was being investigated both for constipation and diarrhoea. All of these tests were normal. The symptoms disappeared without ever being fully explained. And there were things about his personal life that also made me hesitate. Matthew worked in accounting and moved jobs regularly. He had been in his current job for nearly three years, the longest that he had stayed in a single position. What made Matthew move on so often? Did moving protect him from something? Did illness do the same? Was he hiding?
I had also reviewed the normal investigation results from Matthew’s previous hospital admission and I could find only one coherent explanation, and that was that he had a conversion disorder, his neurological symptoms could not be explained by a neurological disease. But it was clear that Matthew was unlikely to accept the normal test results or my certainty that he did not have MS, so it seemed reasonable to give him the second opinion that he wanted and to reinvestigate. I thought of stretched resources and wondered if all that I was doing was reinforcing Matthew’s worry about a disease having been missed. Matthew remained wheelchair-bound and unconvinced that he did not have MS, so I chose to put my reservations aside and keep an open mind.
As Matthew and his wife left I glanced once more through the discharge letter from his previous hospital. It read: ‘I have told this man that I believe his symptoms are functional in nature. I have made a referral to a psychiatrist.’ For all the details that Matthew had included in his story, he had left that one out.
The process of making a diagnosis of a functional or conversion disorder relies on ruling out disease. There are no exceptions to this. Sometimes when the doctor has listened to the patient’s symptoms and examined them a psychosomatic diagnosis seems inescapable. Even when that is the case it is vital that all possibilities be considered and all appropriate tests be done – otherwise mistakes will be made. This is a lesson that Fatima helped me to learn.
I had not been a neurology registrar for long when Fatima and I met. She made an impression. She walked into the basement room wearing dark glasses. As soon as she sat down she asked me to turn off the fluorescent light that had flickered slightly as she sat down.
‘Can you turn the lights off, please,’ she asked. ‘Light triggers my migraine.’
Even when the room was dark she kept her sunglasses on. Before we could talk she fumbled through her bag, found a piece of chewing gum and popped it into her mouth.
‘Chewing is the only thing that helps my jaw pain,’ she said.
It was a busy morning and I could feel my patience slipping away. She had barely begun to tell me her story and already I felt irritated. As I listened I wanted to say, stop, I’ve heard this one before. Fatima had suffered with chronic headaches, stomach pain and joint pain since her teen years. She took a cocktail of drugs to control her pain. Each medical problem had been thoroughly investigated. When she was twenty-seven the pain had moved and she had been admitted to hospital with crushing chest pain. Despite her young age she was investigated for a possible heart attack. Nothing was found in the tests but she continued to take aspirin to thin her blood and a cholesterol-lowering tablet. Just in case. She had kept the label of heart disease, even after it had been disproven and she had been discharged from the cardiologists.
Before we met I had read every page in Fatima’s extensive notes. At the top of each letter was a list of medical problems. The most recent one read: migraine, arthritis, angina, irritable bowel syndrome, possible hypertension, abnormal liver function tests. Fatima was thirty-five years old. She did not smoke. She did not drink. I recognised the list, I had seen many like it before. It was the list that one junior doctor copies from the most recent letter in the notes into the letter they are currently writing. Lack of experience sees them underestimate the necessity of checking every fact. In that way a medical history can take the form of Chinese whispers. ‘Chest pain under investigation’ is slowly transformed into ‘angina’ with every retelling of the story. Fatima had been investigated for angina, but a read-through of her notes told me it had been ruled out, even though the diagnosis lived on in the legend of her letters. Soon, with little evidence for it, ‘possible hypertension’ would become ‘hypertension’.
Fatima had come to me convinced that she had suffered a stroke. She had noticed that her right hand had become weak. She was clumsy, kept dropping things and was unable to write. She had stopped using her right hand as a result. When I asked Fatima to put her two arms out in front of her so that I could establish how severe the problem was, she lifted both her arms but quickly her right fell back down by her side. When I tried to test the strength of the arm by asking her to push against me she said she couldn’t and could not even be persuaded to try.
‘At least try just a little,’ I said. I was becoming frustrated. I wanted Fatima to stop chewing her gum noisily. I wanted to turn on the lights and to ask her to leave and to call the next patient. A nurse came in and left two more sets of notes on my desk, a message to say that more people had arrived. I was falling behind.
Fatima wanted to have a scan. At that time people waited months to be investigated or to have tests. I didn’t want to add Fatima to that burgeoning list.
‘I don’t think you’ve had a stroke,’ I said.
‘What is it then?’ she asked.
‘I think your symptoms could be psychological.’
‘My doctor told me it was a stroke. So you’re right and he’s wrong. Is that it?’
‘There is no reason for somebody your age to have a stroke.’
‘I have high blood pressure and a heart problem.’
‘I don’t think you do.’
‘I didn’t come here for your opinion about my heart. I came for a scan.’
The door opened again. The nurse asked me how long I would be, the next patient had waited half an hour already. The nurse had broken the stalemate. I agreed to arrange for Fatima to have some tests done and I opened the door for her to leave.
Fatima was scheduled to have all her tests on a single day and three months later I saw her name on the list of admissions for that afternoon. My conscious memory couldn’t quite place the details of her case but a feeling in my stomach when I read her name suggested that my subconscious had something to say on the matter. Before I could read through her notes and remind myself a nurse came to tell me that she was going to the reception to collect a patient. ‘The porters phoned and need somebody to come and collect a lady who has prostrated herself across a row of chairs in the reception area!’
Fatima had arrived.
‘Can’t they just put her in a wheelchair and bring her up in the lift?’
‘She’s says she’s too weak to sit up.’
Fatima had travelled by public transport but almost as soon as she had stepped into the foyer of the hospital she declared herself overwhelmed by fatigue and weakness and unable to walk even one step further. The porters had called for nursing assistance.
Fatima lay across three chairs in the foyer with her jacket over her head to protect herself from the artificial light. With the help of a porter the nurses encouraged Fatima to climb on to a trolley and together they wheeled her to the day unit. I watched as she arrived, her dark glasses in place, the back of her hand pressed to her forehead, little sighs escaping and her eyelids fluttering. Three nurses were required to help her from the trolley to a bed.
Over the course of the day Fatima had the tests that were planned for her and between each she returned to her bed and sat with a pillow over her head. When the investigations were complete the nurses asked me to see her to verify that she was safe to go home while we waited for the results.
‘How have things been, Fatima?’
‘My arm has been getting worse.’
I examined her again and the arm that I had seen her freely use all day to shade her eyes flopped repeatedly down by her side when I asked her to hold it in the air. I told her that I could find nothing new, that she was well enough to go home and I would see her again in clinic with the test results.
‘I can’t wait that long,’ she replied.
For the second time our stalemate was broken by one of the nurses.
‘There’s a bed on the ward. She can stay one night and go tomorrow if you can get the results together by then.’
So Fatima stayed that night. The following morning I went to see the neurophysiologist who confirmed that the studies he had done on her arm showed no fault in Fatima’s nerves that would explain her weakness. Her blood results were normal too. Finally I went to see the radiologist to look at the scan.
‘Take a look at that!’ He snapped the scan up on a screen in triumph.
There right in the middle of the scan, superimposed on the grey of the brain, was a white circumscribed ball of tissue that most certainly should not have been there. Fatima had a brain tumour and it sat in just the place that when compressed would lead to weakness of the arm.
I have thought of Fatima often since that day. I use the memory of her to remind myself that a clinical suspicion is only that, an unsubstantiated opinion. A doctor forms a medical diagnosis in part based on their knowledge of disease but much is also drawn from the qualitative nature of the story that a patient tells. Doctors struggle when a patient’s complaints or level of disability seem to outstrip what they can find on examination. We expect people to complain only in proportion to our idea of their illness. A large disparity between the extent of the disease that can be found and the degree to which the patient appears to be suffering can lead to a breakdown in the working relationship, and this might see a patient neglected.
As I watch doctors mature through their careers I see how their behaviour changes, how an open-mindedness often slowly emerges. It is a characteristic that is more often than not learned through experience and, more importantly, getting it wrong. An experienced doctor will be right a lot more often than they are wrong, and their early clinical impressions will be correct most of the time. But in the field of psychosomatic illness mistakes will remind you that for a symptom to be medically unexplained somebody must have first tried to explain it. To consider every possibility and exclude physical illness is at the heart of the diagnosis of these disorders.
Matthew got his tests. He had a further MRI scan of his brain and spine, the standard tests for MS. We looked for white spots of inflammation on the scan and didn’t find them.
But not every disease shows up on a scan, so I set out to check the integrity of Matthew’s nervous system. He underwent an electrical study of his nerves. A tiny electrical stimulus was given to the nerves in Matthew’s feet and arms. Metal electrodes were stuck at points on his skin that followed the path his nerve travelled as it carried messages to the brain. In this way we could literally watch as the electrical impulse moved from a point at the ankle, up the leg, up the spinal cord and into the brain. Although Matthew could not feel the stimulus, a clear electrical impulse was seen to arrive at every recording point and each arrived at the correctly appointed time. And even though Matthew could barely move his legs voluntarily, when the electrical stimulus was given, his foot twitched and jerked in a perfectly normal way. Then his visual nerves were stimulated to assess their integrity. Matthew was asked to sit in front of a television that showed an ever-changing pattern of squares. A small metal electrode placed on his scalp tracked the message that was picked up first by his optic nerve and then transmitted along the visual pathway to the visual cortex. The message arrived safely. His neurological pathways were intact.
When all the results were available Matthew and I met again. He was, as usual, well presented, sitting in his wheelchair, dressed carefully and clutching a sheaf of notes. He always looked as if he had just come from the office, although he had not been to work for months. His wife was with him again, a pace behind.
I knew Matthew’s concerns and I tried to address them from the outset. I explained how we make a diagnosis of MS and explained then that none of Matthew’s tests had shown any evidence of it. What fantastic news, I suggested, MS is a serious illness but it had been ruled out. I could see Matthew’s face darken and just to his left his wife’s shoulders heaved and I saw her roll her eyes.
‘I know you are suffering, Matthew. I don’t want to detract from that. You are suffering and something needs to be done. But you do not have MS.’
I explained the diagnosis of functional neurological disorder, that his leg paralysis could not be explained by any neurological disease. Although I had not gone as far as to call his paralysis psychosomatic I also told him that I was wondering about a psychological cause.
‘How can you say that? Just because the tests are normal you assume I’m mad. That’s what doctors say when they don’t know what’s wrong.’
‘There is more than just the normal tests,’ I answered. ‘The weakness in your legs doesn’t fit with neurological disease. Such profound weakness should come with other clinical signs, altered reflexes or wasted muscles.’
The practice of clinical medicine is holistic just as much as it is scientific. Matthew’s scans were normal but there was much more to his diagnosis.
‘You are afraid to admit that you don’t know what’s wrong.’
‘I do know what’s wrong, Matthew. I’m trying to tell you what’s wrong.’
‘But it feels so real, it can’t be nothing.’
‘It feels real because it is real. Your paralysis is not imagined but that does not necessarily mean that it is a primarily physical disorder.’
‘I just don’t feel confident yet that MS has been ruled out.’
Matthew had come prepared. He took the papers he had been clutching on his lap and placed them on the desk. He pushed some pages towards me. They were designed to show me that I was mistaken. He told me of the woman he had met on the Internet who was told she did not have MS but the doctor had been proven wrong. He told me that he had a friend who had headaches and was told that he was depressed but it transpired that he had a brain tumour. He showed me an article from a daily newspaper that extolled the virtues of a novel treatment for MS. I told Matthew again that all the appropriate tests had been done and that he did not have MS. I could tell that Matthew was stricken. His desperation was palpable.
‘All of the tests are negative. You do not have multiple sclerosis.’
‘What percentage are you sure?’
‘I am absolutely sure.’
When I chose a career in medicine I believed I would diagnose disease and learn to treat it. Sometimes I would deliver bad news of something serious. But at other times I would get to give good news. I would tell people that the scans were all clear and they would be relieved and happy and shake my hand warmly. I was trained to deliver the difficult diagnoses but I was never taught to anticipate the impact that apparent good news could sometimes have on the patient.
People like Matthew have taught me that ruling out disease is not the same as ruling out illness but it often feels that way to the patient. Matthew’s disability was not altered by the fact that I had found no evidence of multiple sclerosis. This new diagnosis was not only confusing, it also muddied his view of how he might get better. With a diagnosis of MS he knew what to expect but now he needed to learn to let go of one certainty and, in its place, accept a hard truth. I had put Matthew in a difficult position. What would he tell his friends about his illness? And his employer? How would they receive the news?
‘Are there other tests I could have? You must be wrong sometimes,’ he said.
I didn’t answer.
He shook his head and continued to leaf through his papers. Scientific papers about MS. Newspaper articles. He asked to see his brain scan as if he would find something that the radiologist had not. I had reached the point in our discussion where I was struggling to find a way to move things forward and needed to remind myself that I would be ill-advised to enter a battle of wills with a patient. But Matthew and I were saved when something quite surprising happened. His wife spoke.
‘For heaven’s sake, Matt, how many times does she have to say it? You don’t have MS. You came here for the doctor’s opinion so why don’t you try listening to her?’
She turned to me. ‘Can we have a moment alone please?’
All I needed was a glimmer of acceptance and it seemed his wife might give me that. I left the room and returned five minutes later.
‘Okay, let’s say it’s not MS,’ Matthew started. ‘Let’s say that this psychosomatic idea is possible, how does it happen?’
‘I’m not sure why or how it’s happening. It’s possible that this is a sign that there is some stress that you are suppressing and it is leaking out in the form of a physical symptom.’
‘But how? What’s stopping my legs from moving?’
‘I don’t have an answer for that.’
Matthew went back to rustling through his papers. His wife reached over and took them from him. Matthew’s hands froze in mid-air for a moment.
‘It would be a lot easier for him if you could explain it,’ his wife said.
‘There is some dysfunction in the way the message telling Matthew’s legs to move is travelling from his brain to his legs but I don’t know how that happens. I just know that it can happen and that it may help for Matthew to see a psychiatrist.’
In the same way that we rule MS in or out through a series of investigations, a psychological assessment need only be another exploratory test. Unfortunately many patients find it difficult to make that final step in the investigative process. To see the psychiatrist feels to some as if they are relinquishing their grip on physical disease, and with it losing all validation of their suffering. For Matthew to agree to see the psychiatrist required a sacrifice that would change the way that society would view his disability.
I was lucky that day.
‘Okay,’ Matthew reluctantly agreed.
Matthew wanted something very reasonable from me: proof. If I could provide evidence, or at the very least a coherent explanation for why his legs failed to move, then he could, in return, accept the diagnosis. Instead I offered him only my conviction and a list of normal test results.
The effect the psyche can have on the physical self has long been observed, but for all that time scientists and doctors have also been trying, and failing, to understand how it occurs. As long ago as 400 BC Hippocrates noted that emotion could trigger sweat and cause the heart to beat strongly in the chest. And it could lead to illness. Hippocrates believed that to treat the sick it was necessary to see the person as a whole, that treating the mind was as important as any treatment of the body; he cured illness by analysing dreams over 2,000 years before Freud was born.
Hippocrates is credited with the earliest descriptions of the illness known as hysteria. He considered it to be a disease of women said to originate in the womb. It was believed that the uterus was a mobile organ that travelled around the body causing disease; if the uterus was displaced upwards or down, or irritated in any way, this could lead to delirium and collapse. Hysteria was not a coherent syndrome with well-defined symptoms; descriptions of it were vague and variable. Seizures were a common manifestation, but shortness of breath, loss of voice, neck pain, dizziness or palpitations were also described. The ancient Greeks knew nothing of physiology and very little of anatomy so they did not distinguish psychosomatic illness from other disease. Hysteria was an organic illness, a disease of the body rather than the mind.
Mobile organs were not the only possible mechanism for illness in ancient Greece. The four humours – black bile, yellow bile, blood and phlegm – were believed to be pivotal in maintaining health and also causing ill-health. The balance of these essential fluids could both determine our temperament and control the stability of our physical health. Each humour was associated with one of four temperaments – choleric, melancholic, sanguine and phlegmatic – and the proportions of each fluid within a person was thought to determine the person’s character. Where the balance was in favour of blood that person was sanguine, cheerful and optimistic. A balance in favour of yellow bile suggested a choleric person, more likely to be ill-tempered. The humours were constantly in flux so a person might be both ill-tempered and optimistic at different times.
By AD 200 Galen was still setting great store by the importance of humours but he also developed another hypothesis about how illness developed and spread. He set out the theory that organs could communicate with one another. He imagined nerves as hollow tubes that carried messages from one organ to the next, and the name that he suggested for the message that was transmitted was sympathy. Galen was the first to suggest that one organ might change or react in sympathy for another. He described how a disease of the stomach might travel in spirit form through a nerve to the brain resulting in a fainting or a seizure. Galen was correct in noting the importance of nerves in transmitting information, even if he had not understood exactly the purpose of this or how it was achieved.
In the Middle Ages, superstition and religion took precedence over medical theories. Hysteria all but disappeared as a condition of medical interest and importance and would not reappear in earnest until the beginning of the seventeenth century, when prevailing myths would have to be dispelled before new explanations for hysteria were sought.
In 1602 Mary Glover of London began to suffer seizures seemingly triggered by an altercation with a neighbour. Soon Mary was deemed possessed by the Devil. The neighbour was accused of putting a curse on Mary and was put on trial as a witch. A prominent physician of the time argued that Mary was not possessed but was suffering with the disease hysteria. His argument was rejected by the court. In England the last executions for witchcraft took place at the end of the seventeenth century, but until then witchcraft and the Devil provided explanations for illnesses that could not otherwise be explained. When witchcraft was no longer believed in, hysterical symptoms could not be attributed to such external factors either and it became necessary to provide an alternative explanation: if they weren’t cursed or possessed, patients must be mad. Hysteria became an illness of the mind: sufferers were transferred into the hands of the psychiatrists of their day, the asylum doctors, also known as alienists; witch trials were replaced by madhouses. The eighteenth century saw asylums become the last resting place of the destitute and the hysterical. That move away from hysteria’s organic beginnings meant that sufferers received no treatment and had no hope of cure – an asylum’s purpose was containment.
Fortunately, as the eighteenth century progressed, the world was on the brink of change, entering a scientific era. Asylums would not go out of fashion for a long time, particularly for the lower classes, and the majority of doctors would still consider hysteria to be synonymous with insanity, but some modern scientists started to wonder if it was possible that hysteria did not originate in the mind, nor even in the head. This thought saw many new explanations for hysteria that would prove as varied and strange as the symptoms themselves. The finger of blame was pointed first at a host of disparate organs and later at the nervous system.
The first advance was in fact a step backwards as an ancient idea was brought to the fore again: the uterus as a source of hysteria. By now it was fully accepted that organs were fixed in place but it was still believed that the uterus, through the power of humours, had the ability to bring other organs into sympathy with it. The status that was given to the uterus is quite complimentary – beyond the brain or any other part of the body, it became the master organ. Either underuse or overuse of the womb could lead a woman to an attack of the vapours, an overwhelming feeling of weakness and fatigue.
The uterus was the preferred organ, but not the only organ implicated in this latest version of hysteria. An explanation was also needed for men who suffered with fits and malaise. Continental Europeans were particularly enamoured with the stomach as a source of hysteria, drawn to its dense confluence of nerves and influenced by the stomach sensation that many sufferers described just in advance of a seizure. The spleen was also a culprit, a blockage of which was believed to lead to any number of disabilities.
The concept of the master organ and its role in hysteria survived a hundred years, until a new type of specialist doctor started to emerge: the neurologist. In the early nineteenth century it was discovered that muscle fibres were excitable and contracted in response to a stimulus. Tapping on the knee was shown to elicit a reflex contraction. This reflex was believed to be mediated by the nerves in the spine. Suddenly the nervous system, and the spine in particular, were considered to be the centre of the body’s communication system. Nerves had been shown to be both excitable and irritable and this led to a new explanation for hysteria – spinal irritation. Young women were noted to have a special sensitivity of the spine, which could communicate its irritation to other parts of the body resulting in pain or paralysis or vomiting just as easily as it could in fits. Spinal irritation became one of the first popular nervous illnesses. This idea led quickly to its successor, the reflex theory – if the spine could communicate its distress to the rest of the body, perhaps every organ could do the same. When many women are pregnant they vomit – was this evidence that the distress of the uterus had been communicated through the nerves to the stomach? Was it an indication that irritability could travel from the uterus to elsewhere in the body?
Up until this point, the 1850s, there was at least a shred of sense in these theories about hysteria. But in the late nineteenth century my favourite explanation was proposed – the theory of nasal irritation. The idea that the mucosa of the nose could be responsible for illness became very popular in the 1880s and it survived into the early twentieth century. The nose became implicated in afflictions as diverse as seizures and pains in the stomach. Cauterisation of the mucosa of the nose or the correction of a deviated spectrum began to be used as treatment. So legitimate was this condition that Sigmund Freud, who was said to suffer chronic ill health not entirely unrelated to the sort seen in his patients, sought frequent treatment of his nasal turbinates. And even with the remoteness of the nose from the sexual organs, nasal irritation did not forget those organs. Doctors felt that the similarity in the engorgement of the mucosal lining of the nose and the engorgement of the penis could not be dismissed as coincidence. The uterus was also inexorably linked to the nose, a blockage of one leading to a blockage of the other. Excessive use of either the female or male organs could be just the thing to cause the nasal mucosa to swell and for hysterical fits to begin.
The role of the master organ, spinal or nasal irritation – each of these theories was embraced by patient and doctor alike. Even though many doctors considered hysteria a feigned illness, a manifestation of either attention seeking or lunacy, they were happy to apply new labels since they pleased patients and required lucrative treatments. Seizures as a result of spinal irritation could be treated with cupping or the application of leeches over the back. Patients could be bled or encouraged to urinate to balance the humours. Sex, pregnancy, vaginal douching and hysterectomy took the place of consignment to an asylum. If a patient was offered either spinal irritation or madness as an explanation for their suffering, it is not hard to understand why they chose the former.
While each of these proposed mechanisms for hysteria has survived in small ways within modern society, they no longer exist in conventional medicine. However, at the end of the nineteenth century came a series of doctors whose theories about hysteria remain the basis of our understanding of psychosomatic illness today and provide the mainstay of current psychological treatments. First there was Jean-Martin Charcot, a French neurologist responsible both for piquing the world’s interest in hysteria and for producing an epidemic of diagnoses of it. Then psychologist and doctor Pierre Janet produced an account of the subconscious which brought hysteria to the realm of the mind. Finally came Sigmund Freud, whose work took the ideas of both men and expanded on them to create his own concept of the conversion disorder. Although these three men were working about one hundred or so years ago, their contribution has been so lasting and their influence so great, that we will meet them and their ideas in more detail throughout this book.
The ways in which medicine has attempted to account for hysteria are fascinating not only for the theories themselves, but also for how they have echoed into the future. When the uterus was cast in the role of the master organ, or when the reflex theory was conceived, very little was known about physiology. Scientific advances have proved that these theories are unfeasible, but even so they have not been completely left behind. Even now a woman’s physical and mental well-being is often considered closely linked to her uterus, and in particular to the stages of her menstrual cycle. We no longer believe in witches, but we do look outside ourselves for external explanations for how we feel, attributing blame to viruses or pesticides or electricity pylons. The multimillion-pound industry that is osteopathy has much in common with the treatments for spinal irritation. Reflexology and acupuncture are direct descendants of the reflex theory. It seems that only nasal irritation has been truly left behind.
Nowadays, I have at my fingertips a host of sophisticated investigations that the original nerve doctors did not have. You might surmise therefore that in the twenty-first century I would be in a position to understand the mechanism of psychosomatic illness, at least in part, and could provide the proof of diagnosis that patients like Matthew want. But the truth is that doctors still struggle to provide a coherent explanation for psychosomatic illness. There have been many advances in our understanding of biological disease but progress to explain how emotions can produce physical symptoms has been slow and incomplete.
The biggest leaps have been technological. Shortly after I qualified as a doctor the magnetic resonance imaging (MRI) scan was just coming into use in clinical practice. It brought a new language to how we described the brain. Computerised tomography (CAT or CT) scans showed us density; the MRI scan showed the intensity of the brain. Suddenly parts of the nervous system were visible that had been impossible to look at in a living patient before, and things were explained. The MRI scan produced such detailed pictures that it could easily detect the lesions of diseases like multiple sclerosis. The diagnosis of MS, which had previously involved a series of unpleasant investigations spanning months or years, could now be made with a single scan. In people with a lifetime of unexplained epilepsy the MRI could visualise tiny scars and birth abnormalities in the brain, thus providing a whole new range of explanations for the disease. That was in the 1990s, and several generations of technology have come and gone in the evolution of brain imaging since then. Many new diseases have been found where it was not the patient or disease that had changed but the technology.
Now there are dozens of ways for the brain to be viewed. We can look at its structure or the blood flow, at how the brain utilises fuel or at its electrical fields. The advent of the functional MRI scan has allowed us to look at what is happening in the brain at the time of a specific action. Rather than concentrating on the solid components of the brain it maps how the brain behaves while a person carries out a task. That task could be thinking or moving or experiencing an emotion. For example, the subject lies in the scanner and is asked to tap their finger. The functional MRI takes an image that detects a change in blood flow, comparing the brain before and during finger tapping. This gives us a picture of which part of the brain is active during the task and indicates the possible nerve cells where the finger tapping originates.
Such MRI techniques have been applied to patients with psychogenic paralysis, paralysis for which no organic disease can account and where there is a suspected cause of mental distress. The patient lies in the scanner and is asked to move the paralysed limb. While the patient tries to do this an MRI picture is taken. Then, the same technique is applied to healthy volunteers and to a group who are asked to feign paralysis. It is possible to see in the scans a clear difference in what is happening in the brain of a healthy volunteer and that of a patient with suspected psychogenic paralysis. In a healthy control subject the motor cortex shows intense activation, but in the patient with psychogenic paralysis there is less activation in the motor area, and instead a different part of the frontal lobe activates. But, much more importantly, there is also a difference between the brain activation of those patients with psychogenic paralysis and the volunteers who are asked to pretend to be paralysed. Those feigning weakness show a distinct pattern of brain activation of their own. So all three groups are different. The MRI has demonstrated that something in the brain is not functioning as it should in those with psychogenic paralysis and it has told us that psychogenic paralysis is not feigned. But the changes seen on imaging are not consistent in every patient, nor are they easy to understand. They provide an interesting part of a puzzle that will hopefully one day make sense but, for the moment, they continue to tell us almost nothing about why or how the paralysis has occurred.
The truth is that for all the advancements in our understanding of how the brain works and how our bodies respond to stress, our tests are still blunt tools. We still have very limited understanding of how thoughts or ideas are generated; we are no closer to explaining imagination and no closer to understanding or proving the reality of illnesses that arise there. So how can one ever be sure of a diagnosis which is offered in such an insubstantial way?
Often doctors do not confront patients with suspected psychosomatic disorders for just that reason. The diagnosis is too hard to prove and therefore will not be accepted. And what if the future brings some new test that will reveal that the original diagnosis was wrong? In some ways we have not moved on from the eighteenth century, the diagnosis may still be avoided for the comfort of both patient and doctor. And this is particularly the case where the symptoms are subjective and cannot be measured. If a gastroenterologist sees a patient with stomach pain the first step is to rule out disease and tell the patient what has not been found. You do not have an ulcer. You do not have colitis. But it is not easy to conclusively distinguish a pain that originates first in the mind from one that exists only in the stomach.
This is where neurology departs from other specialities. It has always had a close relationship with psychosomatic disorder, and has even given it its own particular name, conversion disorder, as if the conversion of distress into paralysis or seizures instead of pain or fatigue is in some way special, when it is not. One symptom is not any more significant than another. Conversion disorders are not any more common than other somatic disorders such as chronic pain. In fact unexplained pain is far more common. Yet the diagnosis of conversion disorders is more likely to be directly confronted. This is because the integrity of the nervous system can be assessed objectively. Essentially, neurologists have the tools to reliably assess the function of nerves and muscles and, in doing so, they are faced with a much clearer diagnosis.
The neurological examination is a sophisticated tool. Weakness that is psychogenic has quite a different quality to weakness caused by neurological disease. Different muscles are affected. Aspects of the examination can be assessed objectively, without the participation of the patient. The nervous system consists of a complex collection of nerve pathways that intersect and join together and divide again as they travel from the peripheries of our body to our spine and brain. The subconscious mind cannot authentically reproduce in the nervous system the complexity of the symptoms caused by a single lesion. For these reasons, conversion disorders are usually a poor mimic of neurological disease.
I once had a patient called Linda who had noticed a small lump on the right side of her head. She saw her GP and he said it was a lipoma, a harmless fatty lump that sits in the skin. But even with this reassurance Linda couldn’t stop re-examining and checking the lump. Was she imagining it, or had it grown in size? Soon she experienced a sort of tingling down the right side of her body. The sensation in her right arm slowly disappeared and then weakness of the right arm and leg followed and she knew for sure then that the lump had reached her brain and was pushing inside.
When I saw her she was split down the middle by the harm that the lump had done. A line could be drawn that divided her exactly in two, on the right was the lump, on the right everything about her limbs was dulled, all movement and sensation. Because Linda didn’t know that the right brain controls the left side of the body her subconsciousness had imagined her symptoms wrong.
Symptoms that arise through stress or anxiety are produced in the mind and are dependent on what the sufferer understands about the body and disease. The subconscious mind reproduces symptoms that make sense to the individual’s understanding of how a disease behaves. In the absence of detailed knowledge of the body, disabilities that arise in the subconscious rarely obey anatomical rules.
It is just this rule-breaking that makes conversion disorders so out of keeping with neurological disorders, particularly when they are severe. But the neurologist has a second tool when there is doubt or to back up a conviction. Our brain and nerves and muscles all function through the passage of electrical discharges and there are reliable tests that can objectively measure this function in any part of the nervous system. Those methods that are used to scientifically explore psychosomatic disorders are equally useful in everyday clinical practice.
It is precisely because the neurological examination is so objective and the nervous system so amenable to measurement that neurologists find themselves confronted so directly by psychosomatic illness. It is hard for neurologists to ignore the possibility of psychosomatic factors, which in turn makes it harder to simply offer the patient a list of what has been ruled out.
But, even with all these techniques at our disposal, all we can prove is that the structure of the nerve pathways is intact. This may help us decide whose weakness is impossible but it still does not provide what Matthew wants – an explanation for how and why. Nor will it validate the reality of his suffering. Every week I hear the word real used over and over, as if something that cannot be measured cannot be real. But the world is full of things we cannot see but either know or believe to be real. Our thoughts are vivid and constant but nobody knows how they are generated; they can’t be seen or smelled or touched but it wouldn’t occur to us not to believe in them. Dreams are the same; we all have them but can only speculate about how or why they occur. A large proportion of the world believes in the concept of God. He is worshipped by intelligent, educated, rational people. Wars are fought for Him, with no scientific evidence that He exists.
There is nothing I can show Matthew, no shadow on a scan or irregularity on a blood test, that will allow him to believe that my diagnosis is correct. But I will ask him to believe me even without that proof, in the same way that I believe that his paralysis, that I cannot measure, is as real as any other.
Most of my patients will face the same uncertainty as Matthew. But methods do exist that provide patients with absolute proof of their diagnosis. Conversion disorders occur when distressing emotions or traumatic events cannot be voiced, and some treatments focus on finding a way to release that voice.
From the late nineteenth century hypnosis became integral to the assessment and treatment of hysteria. Under the influence of hypnotism patients were able to face the suppressed experience that they had been denying, their hysterical state was reproduced and their negative feelings purged. This catharsis, of facing and surviving the trauma, could lead to a full resolution of the patient’s disability. In the early twentieth century it was discovered that a similar effect could be achieved with drugs. Barbiturate drugs were given in order to disinhibit the brain and reveal the hidden truth. Under the relaxing effect of sodium amytal the patient was able to see the traumas of the past more clearly, and then, in time, the negative feelings were discharged. Once sedated, the patient demonstrated a similar suggestible state to that seen in hypnosis. A suggestion to get better was slowly sown. Or the patients could be exposed to the thing they feared most in an environment that was safe. The technique retained the label abreaction, referring to the emotional purge that is the basis for the treatment. In the mid twentieth century this technique allowed victims of World War Two to confront traumatic memories, desensitising them to the extreme reaction they had experienced in the face of particular fears.
Sodium amytal interviews remained in use into the late twentieth century. Its first use was in those with catatonia; people lost to the world, mute and motionless with no brain disease to explain it. Such catatonic patients have been coaxed to move, speak and reveal their secrets under the influence of barbiturate drugs. Many psychosomatic disabilities have reportedly been cured in this way. When the drug is given it travels to the brain causing a gradual disinhibition of the frontal lobes. These control our social behaviour; they stop us telling the inappropriate joke at the formal meeting, they control our impulses, warn us of danger. Drugs can chemically disconnect the frontal lobes leaving our brains uncensored. In one example this technique was used to assess the memory of a man who had attacked a young female acquaintance of his. Following the attack he developed a dense amnesia. He could not remember what he had done nor any detail of his own life. During an interview carried out using sodium amytal the man’s memory returned. It emerged that he had been in love with the woman he had assaulted, but he perceived that she had rejected him. Immediately following the drug interview the man lost his memory again and went into a deep sleep, but over the course of the following week piecemeal fragments of memory returned until, eventually, he made a full recovery. There are similar accounts of paralysed people regaining the ability to walk. After the drug has left the brain not every patient remembers what occurred during the interview. By watching a playback of the video taken at the time they can see that they were able to overcome their disability, even if only briefly.
However, there are significant issues associated with the technique. Cases of long-buried abuse and neglect have been released using this method. Patients have suffered extreme reactions to such abrupt revelations of something suppressed for so long. But, more worrying still, the reporting of false memories has been attributed to both hypnosis and sodium amytal interviews, leading to false accusations of sexual abuse and rape.
Matthew would have to find a way forward without abreaction, with only the inadequate evidence of normal tests and my clinical opinion. I was greatly relieved therefore when I met him six weeks later and was greeted by a transformation.
I went to the waiting room and called his name. He was still in his wheelchair, well dressed as usual but this time he had no large file or armful of papers. He looked less like a man who had come to defend himself. I hadn’t yet had the psychiatrist’s letter and I was not sure what to expect but, even from a distance, he looked more content. His wife walked behind the wheelchair as Matthew came into the room and, although she didn’t smile or acknowledge me, I thought I could detect a glimmer of something positive in her too.
When Matthew told me how he was doing there was only good news. Somewhere in the time since we had last met he had been converted, or had converted himself, to the idea of a psychosomatic disorder. His wife had encouraged him both to meet the psychiatrist and carry out his own research, and somehow he managed to bring himself to an understanding that there might actually be some truth in my odd diagnosis.
‘How did the meeting with the psychiatrist go?’
‘Well, I didn’t like it at first but I realised he made a lot of sense. He said my paralysis was due to a functional blockage in my nerve pathways. There’s a blockage in the message between my brain and legs. He called it a functional neurological disorder.’
‘I’m pleased he’s helped.’
‘The psychiatrist explained things a lot better than you did. He said the nervous system is like a computer, that my hardware is intact and the wires are all in the right place, but I have a software problem that stops my legs receiving the instruction to move.’
Matthew had been given a label and an explanation that he could relate to. For any illness the first step to getting better is to accept the diagnosis and Matthew had learned to do that. That came with firm benefits for Matthew: now he could move forward to treatment, and he could do things to help himself. And he had a prognosis. He could anticipate recovery. He could contact his workplace and tell them he had a functional neurological disorder, that he had to undergo intensive physiotherapy but that he would get better.
‘I know I can defeat this blasted thing,’ Matthew said, rubbing his legs.
Matthew had found his way out.
Once the diagnosis was finalised Matthew’s care could move to the psychiatrists, who kept me updated. With intensive physiotherapy and occupational therapy Matthew was learning to walk again. He was keen to return to work and his employer allowed him to work from home until he had recovered. And with the intervention of the therapists little pieces of him had been revealed. He was one of three brothers and they were a successful family, but Matthew never quite felt that he made the grade. He was as successful as his brothers but felt he had to continually work harder to hold on to his success. He was a man on a treadmill looking for a way off.
Although I had passed Matthew’s care to somebody else I continued to see him from time to time in clinic. Even those who embrace their diagnosis will occasionally have doubts and I am still needed when the dark days come and thoughts of physical disease sneak back in. Recovery is not linear, it comes with ups and downs. Every now and then Matthew developed a new symptom and when he did I was there to examine him and assure him, and myself, that no further tests were needed. Soon he was able to accept my reassurance even knowing I could not provide the proof.
‘Are you absolutely certain?’ he asked occasionally, from the need to be sure.
‘I am one hundred per cent certain.’
And eventually Matthew didn’t need me to remind him any more. Soon he could do it for himself.
‘I’m going mad again, Doc,’ he said every now and again and I could see that he had come to understand what his body told him and could even laugh about it now. His symptoms were still there but when he felt them he responded differently. He had come to realise that the message that they convey is not always what it seems. Now if they tried to interrupt his normal life he knew he didn’t have to do exactly what they say.