Hear now this, O foolish people, and without understanding; which have eyes and see not; which have ears and hear not.
Jeremiah 5:21
THERE IS A very famous psychological experiment called the Selective Attention Test featuring an invisible gorilla. In it an audience is asked to watch a video of six players passing two basketballs between them. Three players are dressed in black and pass a ball to each other. The other players are in white and they pass the second ball. The audience is asked to concentrate and count only the passes made by those in white. The audience is motivated. They want to win, to get the answer right, and so they concentrate. When the video comes to an end the presenter asks the audience how many passes they have seen.
‘Fifteen!’ the audience cries in triumph, pleased with themselves and certain they are right.
‘And how many of you saw the gorilla?’ the presenter asks.
A small number of hands shoot up but most of the audience are just confused. What gorilla? What is he talking about?
The presenter plays the video again. This time the audience are not counting. They are wondering what trick has been played on them. This time they can see it plain as day. The players are running randomly around, deftly passing the ball just as they did before, but there, right in amongst them, is a grown man dressed in a gorilla costume. He doesn’t try to hide or run, he stops in the middle of the frame to beat his chest before he strolls away. Those who had not seen him the first time around cannot believe that he was ever there. ‘That’s not the same video,’ one woman says. But it is. The crowd struggles to accept that they have only seen what they cared to see and their minds erased the rest.
The day I first saw the invisible-gorilla experiment my mind immediately went back to a patient I had known for a brief period many years before.
When I met Yvonne I was a nascent doctor. I was in my early twenties and just out of medical school in Dublin. I had yet to encounter the harsh realities of life and in many ways I was still a child. I had learned a lot but had a lot to learn. When it comes to psychosomatic illness there are struggles that doctors and patients share, and Yvonne would teach me a little something about that.
I first heard Yvonne’s story from another doctor on a ward round. There were nine of us crammed into a small side room on the ward. We were a mixture of junior doctors, medical students and a nurse, overseen by a neurology consultant. The more junior we were the more we cowered behind others, afraid of being asked a question we couldn’t answer. One of my friends, only a year ahead of me in their training, had admitted Yvonne the previous day and detailed for us what he had learned from her.
Yvonne was forty years old and worked in a supermarket. She was stacking shelves one Tuesday when the accident occurred. A row of workers were removing broken packages from the display and pulling the older stock forward so that would sell first. The perishable goods were kept refrigerated behind glass doors and Yvonne was working in that section, moving from fridge to fridge opening each door in turn. Around her other women were doing the same while they chatted and laughed.
Yvonne had almost finished her section. As she stood back from the fridge she was aware of another person on the other side of the glass door she was holding open with her right hand. As she closed the fridge door she automatically turned to face the person. As Yvonne did so her neighbour, not expecting the fridge door to close, released a small spray of window cleaner into the air. Yvonne felt the liquid splatter against her face. She closed her eyes reflexively and raised her hands in defence. At first she cried out in shock but very quickly the cries turned into ones of pain. Yvonne experienced an immediate intense burning in both her eyes and when she tried to open them she found she couldn’t. Another colleague quickly led her to the bathroom and washed her eyes with water. When it became apparent that this was not enough to relieve her pain an ambulance was called and Yvonne was driven to her local hospital. In the casualty department a doctor and nurse examined Yvonne and then bathed her eyes carefully. Her husband was called and by the time he arrived at the hospital Yvonne was feeling better. Her eyes were red and full of tears but she could see normally and the pain had lessened. Her husband was allowed to take her home.
Yvonne left her family to fend for themselves and went to bed early that evening. She thought she would be better the next day and so was disappointed to find her eyes were still bloodshot. She prepared breakfast and made the children’s lunches with the vague feeling that she could not look directly out of the window into daylight, preferring the darkness of the kitchen.
Usually on a Wednesday Yvonne would leave the house with the children because she did an early shift at work. That day her husband told her she should stay at home. Yvonne had never missed a day of work and was very reluctant to do so now. ‘They won’t thank you for it,’ her husband had said and eventually Yvonne had agreed with him. Over the course of the day Yvonne noticed her vision blurring. By lunchtime, when her husband phoned her to see how she was, she was struggling to make out the numbers on the digital clock. She found herself rubbing her eyes repeatedly. When the family came home that evening they told her she looked tired. One of Yvonne’s children offered to cook the family tea while her mother went to bed.
When Yvonne awoke and opened her eyes and everything was black, she thought she must have slept through to the middle of the night. But as she sat up she realised it was an impenetrable sort of darkness, there was no light at all and no shapes. She waited for her eyes to grow accustomed to the dimness and when they didn’t she began to panic. She felt the bed beside her and realised her husband wasn’t there. She tried to stand and her foot caught on something on the floor. Her heart began to pound in her chest and she felt herself pawing at her eyes as if that would clear them. She cried out for help and she heard the noise of people entering the room and realised she could not see them because she was completely blind.
Yvonne went immediately back to the hospital. The doctor who saw her examined her and bathed her eyes again but it did not give her any relief. Completely unable to see she was admitted for a series of tests. At the end of one week of investigations Yvonne had not recovered any of her vision and doctors said that they could not find a cause for her blindness. That was the beginning of six months of hospital admissions and appointments for Yvonne. They came to nothing. Each doctor told Yvonne that they could find nothing wrong and discharged her to the next doctor in line. As a last resort Yvonne was referred for an assessment by a neurologist. The referral letter made it clear that nobody really believed that Yvonne had a neurological problem but it was the only avenue that had not yet been fully explored. This was enough to make us suspicious before we had even started.
My friend flicked through Yvonne’s notes as he told us about her, detailing every normal test and every failed treatment. Aside from Yvonne’s symptoms he interjected to tell us how her life had been affected.
‘Never went back to work after that and is receiving disability payments.’
Wry smirks were barely suppressed.
‘Needs a full-time carer. Cannot do housework or engage in normal daily activities.’
Once we had heard the medical history in detail, we shuffled out of the room and the consultant led us to Yvonne’s bedside. Seeing her for the first time I was surprised by how she looked. Although she was only forty years old, younger than my mother was at the time, she looked so much older. It was hard to know why. It was not her skin, which was clear and unlined. Nor her hair, which was brown, untinged by grey. Was it something in her demeanour then? She was sitting on the bed, a tiny woman, shoulders hunched, her elbows pressed tightly to her sides, fingers intertwined and held in her lap. The belt of a quilted dressing gown was pulled just a little too tightly around her waist. Her blank eyes stared far beyond us. Her husband sat beside the bed. He was loose-limbed, one leg draped over the knee of the other as he reclined in the chair. His arms were folded over an expansive chest. His eyes were vigilant, capturing each one of us as we distributed ourselves around his wife’s bed.
The consultant introduced himself and began by reviewing the accuracy of the details of the story we had heard. Yvonne’s husband spoke for her, making frequent corrections. ‘No it wasn’t just window cleaner, it was a bleach-based detergent.’ ‘Yes, a work colleague had tried to rinse her eyes but had only wiped them with a wet towel. They had not used running water which would have been better.’ He told us that he had contacted the company who made the detergent and they had said it could cause nerve damage if it was absorbed by the eye. He would like that documented. I exchanged a small smile with one of the other junior doctors. Yvonne had not been seen by anybody at work who was qualified in first aid, we were told. My friend smiled back.
Then the consultant spoke directly to Yvonne. He asked her if her vision was good enough to distinguish light or dark or to make out shapes. Yvonne answered that she could sometimes tell that a light had been switched on but that was all. To test her the consultant shone a bright torch directly into her eye and asked her if she noticed any change and she answered, perhaps, but she couldn’t be sure. At first, as she answered the consultant’s questions, Yvonne appeared to stare far to his right, as if she could not even tell where he was in the room. But as the conversation developed her eyes began to dart about, sometimes to his face or towards her husband and then quickly flitting back to a point in the middle distance.
We watched as the consultant worked through his examination. Yvonne’s pupils reacted briskly and symmetrically to light just as they should. But when he asked her to follow the light with her eyes she couldn’t do it. He took a small rotating handheld drum from his bag. It was painted in alternating black and white stripes and it spun on an axis around the handle. He held the drum in front of Yvonne and spun it quickly. Yvonne’s eyes flickered minutely from side to side in response to it, her eyes involuntarily drawn to the spinning stripes.
Next he asked Yvonne to touch the very tips of her index fingers together in mid-air in front of her. Yvonne lifted her arms and brought her hands towards one another at about the level of her chest, both her index fingers pointed. But the left hand went higher than the right and the knuckles of that hand hit against the raised thumb of the other, the pointed fingers missing each other.
We had never seen this asked of a patient before so behind the consultant half of us were now standing with our eyes closed trying to do what Yvonne had failed to do.
In the final stages of the examination, just as the consultant lifted the ophthalmoscope close to Yvonne’s eye for the final time, she blinked. I thought I heard a small thrill of a laugh somewhere in the room. Yvonne must have heard it too, as she was startled.
‘Is there somebody else here with you?’ she asked.
The giggles were less stifled this time.
Once we were outside in the corridor again one person whispered a shared thought.
‘When’s the court case?’
I was just about to laugh out loud at this but before I did I searched the faces around me for their approval and in doing so caught the expression of my consultant just before he spoke.
‘You lot had better hope that poor lady is blind, and deaf too, and that she did not notice how you were behaving in that room. Can we show some maturity in future, please.’
We had enough sense to be just a little scared at that. We quickly straightened our expressions and became very quiet and extra deferential on the ward round from then on. But because we were still nothing more than glorified children we released our laughter when we were having coffee together later.
‘We were like a herd of elephants going into that room,’ said one, ‘how could she not know we were there?!’
‘There’ll be no Oscars for that performance,’ said another.
And we planned what we would do to catch Yvonne out. I said that the next time I was in her room I would allow a five-pound note to slowly drift from my pocket and on to the floor and we would wait to see how long it took for her to find it. Someone else planned to scream loudly and point at the window and see what happened. But of course we wouldn’t do any of this. We were young people, just out of college, who had seen things that most people never see. In the previous year I had known people younger than me die. We had rushed to help people who were seriously ill and failed. And yet we were not ready yet to understand a different type of suffering.
Yvonne was in the hospital for a week waiting for her tests. It was my job to see her every day and make sure that she knew what was happening. I spent a little longer with her than the other patients because I was interested in her, although I knew that my interest could not always be called honourable. As the week went on the details of her story became clearer to me.
Yvonne spoke warmly of her family and her life, but even if she did not mean to tell it that way, I heard hardship too. She had grown up in rural Ireland. The first half of her life was spent in her parents’ home, a loving but also a sheltered place. A place from where a young girl rarely went out alone. At the age of twenty she had married her first boyfriend, Gerald, who was ten years older than her. There was not much of a difference now that she was forty and he fifty, but a great difference then. Within ten months of the wedding she had her first child. By the age of thirty she had six children under the age of ten.
Yvonne had spent most of her adult life devoted to the care of her family. Her husband worked full-time so she alone wrestled with six young children. Yvonne and her husband’s roles were well defined. He was the provider and he did his job well. She cared for the children and made a home for the family.
‘We are a good team,’ she said.
It was only when the oldest children had left home and the youngest were all in secondary school that Yvonne first experienced what it felt like to have time on your hands. Encouraged by her eldest daughter she decided to take a job in a local supermarket. It was a big step for Yvonne, who was a woman who had spent most of her time alone or with children. She had been in paid employment only once, two years before she married Gerald when she was eighteen years old. Yvonne came from the first generation of her family to have the chance to finish school. She had taken a job working as an office girl at a nearby university. It was the most prestigious job she might have hoped to get and she was very proud of her success.
‘I loved the feeling I was off to the office,’ Yvonne told me, sounding happy, but then changed her tone as if correcting herself. ‘The job was menial I suppose, but because I was working in the college it felt more than that.’
Yvonne had met Gerald at a dance on a rare night out with her friends from work. Within a year they were engaged. Yvonne gave up work straight after the wedding.
‘Back then you had to give up work when you married. Besides, Gerald thought my time would be better spent looking after my own family rather than working my fingers to the bone and only helping some stranger fill their own pockets.’
Almost immediately they left Cork and moved to Dublin. Gerald was the youngest child of a large family and he would inherit no part of the family farm or home.
‘Gerald was the cleverest, but being the youngest there was no bit of farm left for him. We had to leave,’ Yvonne told me.
‘You didn’t want to leave Cork?’
‘No, but it was the right thing to do. Gerald trained as an electrician and now he has his own business and we are more comfortable than we ever would have been had we stayed at home.’
‘Dublin is home now, I suppose?’
‘I suppose it is.’
When Yvonne decided to apply for a job at the supermarket Gerald had been against the idea. He worried that she would have less time for the family. She assured him that she would only work in school hours and that, when the family got home, they would not even know that she had ever been anywhere but there waiting for them all day long.
The job was simple and unexciting, easily within Yvonne’s capabilities. But for all that it lacked in challenges Yvonne quickly learned to love it. It gave her money of her own and a few hours in the outside world. She was a quiet woman who did not find it easy to meet new people. At work she had colleagues and regular customers that she came to know. She relaxed in their company and began to enjoy herself. She made sure she kept up with things at home and life for the family continued much as it had before. Gerald grumbled occasionally but she gave him no grounds for real complaint. Things were going well for Yvonne, until the accident.
During Yvonne’s stay in hospital I saw her children visit in the evenings, usually the older ones who no longer lived at home. The youngest ones visited only once accompanied by an older brother.
‘I’m only in for a week. It’s not that long,’ Yvonne said. ‘And sure am I not useless to them now in any case?’
‘Is Gerald visiting today?’ I occasionally asked. I had not seen him since the day of our first meeting.
‘Gerald is run off his feet with the business,’ she said, ‘he built it from scratch and he doesn’t like to leave things unsupervised.’
One day I saw a girl I took to be an older daughter sitting by Yvonne’s bed reading the newspaper to her. I was writing notes on the ward and I could not help watching them together. It was a touching picture, the girl sat attentively, poured her mother’s tea, adjusted the radio and nurse call button so that they were more readily in reach. They kissed affectionately when the girl finally stood to leave. Yvonne’s hand lingered on the girl’s arm as she pulled away.
For a few moments after the girl had left Yvonne sat quietly on her bed staring straight ahead. I was looking down at my notes as I wrote when a movement from Yvonne caught my eye. She had turned to the right and with her hand she reached mindlessly for a tissue whose corner was just sticking out of a box on the far side of her locker. How deftly she had done it, no feeling about, no hesitation. As soon as I saw it I had an impulse to laugh again, to go and tell my friends what I had seen the blind woman do, but then I realised she was crying and so I thought again.
Over the week, Yvonne came to recognise my voice and step, and greeted me warmly when I called to see her. I noticed a gradual but definite change in how Yvonne connected to me when we spoke. On the first day she had stared over my shoulder just as she had with my consultant, as if she could hear my voice but not locate it. But as the days went by I noticed increasingly that when she spoke Yvonne looked me in the eye. When she did so it was more than just a simple glance; I felt our eyes connect.
At the end of the week I joined the consultant to see her on the ward round. Gerald was with her again. Yvonne had undergone several more tests of her eyesight and each one had been normal.
The consultant told her the news and Gerald shook his head and muttered ‘Not again,’ then asked more loudly, ‘Has every possible test been done?’
Yvonne had not yet had her last scan. There was a waiting list for everything and she was not deemed to be the most in need. The consultant suggested that Yvonne could go home and have that final test done as an outpatient. It would mean that she would wait longer to have the test done but at least, while she waited, she would be at home and with her family.
‘Sure I’m no use at home like this. I’ll stay for the test,’ Yvonne said quietly.
Yvonne often talked about her children, how proud she was of them, how dreadfully she missed them. There are some patients for whom hospital provides company and support. That is particularly the case for those who live alone. For some, going home can be difficult. Yvonne did not seem like one of those people to me. But now she was turning down the chance to go home. She had surprised me.
Yvonne stayed in hospital for a full further week before all her investigations had been completed and we had the results to give her. On the day that she was to be discharged Gerald was with her again as the consultant gave her the final results. The integrity of Yvonne’s visual pathway was intact, her brain was normal and we could not find any neurological cause for her problem. The only possible explanation left for her loss of sight was functional blindness, caused by stress.
‘My wife hasn’t had a day of stress in her life. You’re talking nonsense,’ Gerald replied.
It was explained again that all the avenues had been explored more than once and that there was no other possible explanation, that it would be best to take the advice that they had been given if Yvonne wanted to get better. Yvonne had taken to staring into the middle distance again. The conversation ended with a reluctant agreement that Yvonne would meet a psychiatrist; if only ‘to prove us wrong’ as her husband put it.
After we walked away from Yvonne’s bed I told the consultant that Yvonne had begun to look straight at me when I entered the ward. One day she had smiled and acknowledged my presence even before I had spoken to identify myself.
‘Whatever else you do, give people the benefit of the doubt. The moment you say to that woman that you think she can see you have lost her,’ was the advice I received.
When I returned to the ward to give Yvonne her discharge letter I felt impossibly confused. Had I been told to disbelieve her blindness but avoid confronting her? Or should I disbelieve myself and what I thought I knew?
Yvonne was alone by her bed when I entered the ward. I said goodbye and handed her a letter for her doctor.
‘I have something for you,’ she said as I was moving to leave. She handed me a card.
The picture on the front was of a flower-filled field overlooked by a single dominating tree. It was drawn in coloured pencil. The words inside the card said thank you, it was nice to have somebody to chat to every day.
‘I made the card,’ Yvonne said.
‘You made it!’ I could not keep the surprise from my voice.
‘Yes, I borrowed the pencils and the paper from the woman in the bed next to me,’ Yvonne replied.
Even with my consultant’s warning ringing in my ears I heard myself say, ‘But if you can’t see how could you draw a picture?’
‘I can feel the pencil marks on the paper,’ she answered. She did not seem in the least affronted.
Gerald appeared then, picked up his wife’s things and led her from the room on his arm. As they walked away I looked at the picture again. The leaves of the tree were green, the bark brown, the field was scattered with purple and yellow flowers. Not a single outline was broken, nor was there a single leaf or flower out of place.
One of the greatest challenges for most doctors is the struggle to believe in the truly subconscious nature of their patients’ psychosomatic symptoms. If I cannot believe that then I am calling every patient I see a liar, whether I say it aloud or not. As soon as a patient is given the diagnosis, this is their first concern. They think I’m doing it on purpose. To believe in the subconscious nature of the symptoms is difficult but absolutely necessary for both patient and doctor.
Pierre Janet was a French philosopher and psychologist who was pivotal in the development of the concept we refer to as the subconscious. He was a protégé of Charcot, he learned from his master but also influenced him. For the majority of his career Charcot had asserted that hysteria was unequivocally an organic disease. Only in the very latter part of his life did Charcot begin to consider that his assertions about hysteria were wrong, that he had not found a pathological disease at post-mortem because there was no disease to find, that there might be a psychological cause for hysteria. His change of heart was said to be in part due to the work of Pierre Janet.
In the 1880s Janet was a young professor working in the Lyceum at Le Havre. He studied the techniques of Charcot, in particular his use of hypnotism. In the 1890s Janet moved to Paris to study medicine and began to spend as much time as possible at the Salpêtrière. Charcot admired the work of Janet. Shortly before his death Charcot opened an experimental psychology ward and offered Janet a small laboratory so that he could develop his research. Only weeks after their collaboration began Charcot passed away, but Janet was already in place at the Salpêtrière.
The death of Charcot and the work of Janet were turning points for hysteria. Almost immediately after Charcot’s death his detractors found their voice. Those neurologists who had always secretly disagreed with Charcot rounded on his organic paradigm for hysteria, pointing out the lack of pathological evidence and the ludicrousness of hypnotism as proof of an organic disease. Several scientific papers were published to that effect. Quickly the world stopped viewing hysteria as a neurological disease and started seeing it as a psychological illness born in the mind.
Janet’s work at the Salpêtrière would result in some of the key concepts that still influence how we think about hysteria today, the most important and lasting of which were his delineation of the concepts of the subconscious and dissociation. Janet described consciousness as those sensory experiences and thoughts of which we are actively aware, those that are currently receiving our attention. He described consciousness as expanding and contracting, allowing things to move in and out of our field of awareness. He thought our consciousness could choose what we perceived and what we ignored. To understand Janet’s idea, think of the chair you are sitting on. When you pay attention you can feel every contour of it against your body. Everything your skin touches produces a sensation. But our mind dismisses most of this as unnecessary noise and only pays attention to the things that seem important. Imagine that one moment you are aware of a sound and the next you are not. Further to this, Janet suggested that a neglected sensation could be lost from consciousness, not just transiently but absolutely and completely. In this way a person might completely lose the feeling in a limb because the mind was ignoring it. In extreme situations the field of consciousness could retract to such a degree that it could render a person catatonic – in a state of unresponsive mental stupor, unaware of anything.
Janet described the subconscious as the place where everything that one has learned and experienced is hiding, a place to store information that is not immediately available to the conscious mind. He proposed that consciousness existed in parallel with the subconscious and that each could be entirely unaware of the other. He demonstrated this through the use of hypnosis. Under hypnosis patients lost conscious awareness and their subconscious became suggestible. He showed that in the hypnotic state paralysis could be induced in the patient just through an idea. On waking the subconscious retained the idea that had been planted there but the conscious self was unaware of it. This observation was later used in abreaction – suggestions to influence recovery were sown under hypnosis, and unbeknownst to the patient those suggestions were retained by the subconscious when the patient awoke. It is also the basis for hypnosis as a source of entertainment as it is used today.
Janet went on to theorise that a split or separation could occur between the different parts of the mind, thus depriving a person of conscious awareness of reality. Memories and feelings could exist in parallel parts of the mind, neither knowing of the other. This he referred to as dissociation. Dissociation, he said, occurs when feelings, thoughts or memories become disconnected from one another. Janet believed that the split arose as a result of trauma. A psychological trauma caused the secrets of the subconscious to slink away so that they were no longer available to their owner.
On Janet’s model, where two states of mind can exist but one doesn’t know about the other, it would be possible for Yvonne both to see and be unaware of seeing at the same time. But it is a difficult concept to grasp. It is an idea for which there is no proof and on which there is still no consensus. When I am faced with a difficulty understanding how the subconscious can hide things in this way I look to everyday life for supporting evidence and I often find it. Have you ever had a cheating partner? The deception goes on for months undetected, but as soon as it is revealed you realise that you had known all along. You had seen the receipts, heard the late-night phone calls, but had consigned your unwanted suspicions to your subconscious until forced to face them. We hide unwanted thoughts from ourselves all the time. And some of us dissociate occasionally, but only briefly. You cannot find your wallet. Eventually it turns up in your briefcase but you are absolutely convinced that you didn’t leave it there. You take the train, sooner than anticipated you arrive at your destination and realise that you recall very little about the journey. You are watching the news and suddenly you have lost the gist of it and don’t know what the presenter is talking about.
Our minds are constantly choosing what to perceive and what to ignore. You do not have to have participated in the invisible-gorilla experiment to recall a time when you stared right at something but didn’t see it. Looking for a friend in a crowd, say. They are right in front of you, waving, but somehow you look right past them as if they weren’t even there. ‘You must have seen me. You looked right at me!’ they say afterwards. But you didn’t. For a moment, your mind employed selective attention and blocked something from your view.
Janet’s idea accounts only for negative symptoms, lost sensation or lost memories, but the mind can do more than keep sensations and feelings from us – it can produce sensations from nowhere just as easily as it can hide them from view. I remember a time when I was invited to the home of an elderly friend of mine. As soon as I crossed his threshold a wave of odour hit me, a slap of wet dog directly in the face. The front door opened on to a single reception room littered with old newspapers and other detritus, in the kitchen the worktops were scattered with unwashed crockery. Two dogs sat on the sofa. My friend nudged the dogs from it and I was invited to sit.
Even now I can feel vividly the discomfort I felt that afternoon. My imagination was attributing life to that sofa that it did not contain. My skin was so invaded by itching that when my friend left the room for a moment I had to stand and shake out my clothes looking for imaginary insects. Even when I went home I could not escape the feeling of a thousand flea bites. Only when I had washed my clothes and showered did I feel any relief.
There were no insects in the sofa, nothing was crawling on my skin, nothing was nipping me. But the itch and tickle felt absolutely real. My mind had produced real physical sensations triggered only by an idea. Even with the evidence of my eyes that saw no fleas I simply couldn’t shake the imaginary feeling of being bitten. And even though it was years ago, and all in my mind, I am experiencing it all over again now just through remembering it.
More than anything else it is through my experiences working with patients with dissociative seizures that I find the most compelling evidence for the subconscious nature of the illness. The behaviour of dissociative seizures scream of it.
I have seen the same pattern with dissociative seizures time and again. A patient suffers a series of seizures before we meet, maybe five or ten in a six-month period. That amounts to less than one hour spent in a seizure in six months’ worth of hours. Then I meet the patient for the first time in the outpatient clinic and they collapse in front of me, or in the waiting room. I arrange for them to have an EEG and they collapse during the test. When a patient has a typical seizure during the EEG it is always a relief because it means that I can make an incontrovertible diagnosis. But could it possibly be only good luck that the patient collapsed at that moment, just when it mattered most?
Even when dissociative seizures occur rarely in a person’s daily life they will often appear on the day of a hospital appointment. It is an odd coincidence for a person who has rare seizures to suffer a seizure during the brief time they spend with me, but that is exactly what happens. Patients with epileptic seizures do not typically have an attack in the clinic or during their tests. But it is a feature of dissociative seizures that they have a very high chance of happening right at the moment that the patient is at the hospital. The odds cannot support this as a chance occurrence.
In the first instance when a patient collapses right in front of you it is tempting to see it as a deliberate cry for attention. Or even an ill-judged attempt to impress you and to fool the system. At the beginning of my career I struggled to see it as anything but a conscious act by the patient. Deserving of sympathy, even so, but done with intent. It took time for me to realise how little sense my judgement made. When a patient has an EEG they understand its purpose, it is fully explained to them. Why would a person straining to deceive or attempting to engender sympathy collapse just then, just at the moment that they are guaranteed to be found out?
Imagine for a moment that you want to impress a new friend by telling them that you are an expert at playing the guitar. By wonderful coincidence they have a guitar somewhere nearby and would love to hear you play. Unless you believe absolutely that your claim is true you will be very reluctant to agree. To collapse in the epilepsy clinic in front of the epilepsy specialist doctor or in the EEG department is an act of innocence, not one of manipulation. It is a cry to be understood that comes directly from the subconscious. If a patient simply described their seizures to me but never let me see one, I could never prove the diagnosis.
To my mind, the very manner in which patients with psychosomatic illness pursue a diagnosis provides the most compelling evidence for the subconscious nature of the illness. When Matthew looked for a cause of his paralysis he did so exhaustively. Yvonne had subjected herself to the most minute scrutiny in the hope of finding an explanation for her loss of sight. Pauline had the same tests again and again because she could not believe that no organic disease had been found. A person who is feigning illness has no need of such a search. If I am pretending to be ill, the sophistication of modern medicine becomes a threat to me, and it was no threat to Yvonne or Matthew or Pauline. They could not stop their search because they were looking for something that they were certain was there.
I believe in and accept the unconscious, uncontrollable nature of a psychosomatic disability. But many in the medical community struggle with the notion as much as any other person does. As it is the doctor’s job to allay the patient’s fears and dispel any confusion about the diagnosis, a problem arises if the doctor is not convinced.
Shortly after I became a consultant I attended a paediatric epilepsy training course that I hoped would broaden my experience of diagnosing seizures in children. One session of the course was interactive. In a small group we were asked to watch videos of children having seizures and we were called upon individually to offer our diagnosis based on the video alone. Most of the other professionals there were not specifically trained in epilepsy as I was. What’s more I was already regularly working in the field of diagnosing seizures from video recordings, although usually with adults, so I knew that I was likely to be more experienced than the rest of the group. For that reason I avoided offering the diagnosis too quickly.
Near the end of the session we were shown a video of a girl of about fourteen years old having a convulsion. It was not at all unlike the sort of seizures suffered by adults so I did not think the diagnosis presented much of a challenge. The doctor running the session went from person to person in the room asking for opinions on the cause of the seizure.
‘Frontal lobe seizure.’
‘Tonic-clonic seizure.’
I was at the end of the row so answered last. I was the only doctor to say that I thought the seizure was dissociative. I was asked to give my reasons and I gave them.
With unconcealed venom another member of the group turned to me and said, ‘No way is that child faking her seizures.’
And there we have a problem. Whether I was right or wrong in my diagnosis, if that doctor thinks dissociative symptoms are faked how would he ever present that diagnosis to the patient in a palatable way? Or worse, how often would he miss the diagnosis? His words came from compassion for the child so could he ever make such a difficult call if, in his heart, he considers it such a damning judgement?
These days I’m more likely to be the teacher at such a session and I hit on the same problem all the time. Doctors are scared to make the diagnosis.
‘What if it’s wrong? Wouldn’t it be better to treat the patient for epilepsy just in case?’
The mistake of offering a patient an organic diagnosis just in case has led to many people suffering lifelong seizures with no abatement. It happens for a number of reasons. Doctors are frightened to face the almost inevitable anger that will occur when a psychosomatic illness is mentioned. But protecting the patient from that upset is not in their interest in the long term if they are being denied a diagnosis. Also doctors worry about calling a symptom psychological and discovering later that there was an organic cause after all. Calling an organic problem functional is a mistake that is guaranteed to engender anger in a patient and their relatives, and can lead to a lawsuit.
In 1965 an eminent British psychiatrist called Eliot Slater published a paper in the British Medical Journal in which he described a ten-year follow-up study of a series of patients diagnosed with hysteria. He reported that over twenty-five per cent were ultimately found to have an organic disease that had not been detected at the time of their first diagnosis. He went on to say ‘the diagnosis of hysteria is a disguise for ignorance and a fertile source of clinical error. It is in fact not only a delusion but a snare.’ This paper influenced many doctors to stop making a diagnosis of conversion disorder. It played on their worst fears. I doubt many of my contemporaries in medicine have read this paper but the attitude it portrayed lives on in them instinctively. Contrary to what many patients believe, doctors worry all the time that they might be wrong, particularly in this field. They worry that a new scientific study will prove every diagnosis of psychosomatic disorder to be incorrect in the future. So they avoid the diagnosis, refuse to acknowledge it and fail to see the harm that stance does. But in the fifty years that have passed since Slater published his paper there have been numerous similar studies, none of which are in agreement with his findings. His study is widely agreed to be flawed and modern technology has also helped to guarantee a more sound diagnosis in the twenty-first century. Equally eminent psychiatrists have shown that in a modern era, where the diagnosis of conversion disorder is made in a sound manner, the likelihood of an organic disease eventually coming to light is low. Only four per cent will later be demonstrated to have an alternative diagnosis – this is the same misdiagnosis rate as many diseases where there is not a single diagnostic test. So the diagnosis is correct ninety-six per cent of the time, but still doctors shy away from it.
Missing an organic disease – putting the patient’s life in danger and often leading to guilt and self-doubt in the doctor – is the mistake most feared by the medical profession, but it is not necessarily always the worst one. It is quite common for psychosomatic illness to find itself incorrectly labelled as organic in the first instance. Doctors and patients often find it the more palatable option, even when incorrect. But the harm that can come from this sort of error is often underestimated. It can be immeasurable.
Firstly, there is a face-saving internal struggle involved before a patient can move away from an organic diagnosis to a psychological one, and often that struggle is just too hard and the patient simply cannot accept the new diagnosis. The longer a person carries the wrong diagnosis the worse the prognosis becomes. Once somebody has been given an organic explanation for their symptoms the chances of recovery quickly fall. Many studies have shown that if somebody is told, in error, that their seizures are due to epilepsy before the correct diagnosis of dissociative seizures is made, then the chances of becoming seizure-free immediately lessens. This may be because the original misdiagnosis delayed the true diagnosis, and we know that the longer people live with dissociative seizures the less likely they are to be cured. Or it may be a product of what a patient has come to believe. If somebody has been told they have epilepsy and has been allowed to believe that they have a serious, potentially life-threatening brain disease, then this belief alone may be so enmeshed in their mind that it affects their ability to recover. If you believe that you could never run a marathon, then you’ll probably never try.
The prognosis for any stress-induced symptom also worsens as soon as the symptom has been attributed to an organic cause. Say, for instance, that somebody with neck pain is found to have wear and tear in their spine on an X-ray. Any middle-aged adult might have this same finding on an X-ray just as part of ageing, but if the patient attributes their pain to it, rather than due to muscle tension or stress, they are much less likely ever to be completely free of pain.
And an incorrect diagnosis of organic disease has other implications. It might lead to toxic unnecessary treatment. It might lead a person to make unnecessary life changes to accommodate the disease. But most importantly, the wrong diagnosis will deny the person the correct treatment.
The reluctance to offer a psychosomatic diagnosis is not always so noble as a fear of missing a disease or a reluctance to upset the patient. There are still a lot of medical professionals who believe that psychogenic paralysis is faked paralysis, and that the patient could walk if they wanted to. Or that psychogenic convulsions are deliberate and within the patient’s conscious control. In previous centuries, when people were less likely to censor their thoughts and actions, patients suffered the harshest treatment as a result of this attitude. In the nineteenth century one doctor was fond of subjecting patients with psychogenic convulsions to treatment with enemas. He was certain that a patient could not concentrate on both retaining an enema and deliberately convulsing at the same time. Another doctor locked patients in his office and refused to release them until they stood and walked.
These days doctors who hold those views largely do so behind their patients’ backs. Largely but not entirely. I have encountered patients who have been confronted with accusations of faking. It is difficult to evaluate their accounts, however, because how a diagnosis of a psychosomatic illness is received is not always how it was meant. I am sure that some patients have been told to ‘snap out of it’ just as they report. This damning judgement does far more harm than just the superficial hurt it causes. It alienates the patient and feeds the attitudes that are at the heart of the stigma this diagnosis carries.
If the reality is that doctors struggle with the concept of psychogenesis every bit as much as the patients do, and psychosomatic disorders are a mere footnote in a doctor’s training, it’s hardly surprising it’s such a mess. And this isn’t helped by cases that feed the uncertainties surrounding these disorders.
Judith had been referred to me with epilepsy. Her doctor’s referral letter told me that she had recovered from leukaemia and he wondered if her epilepsy was a late complication of that disease. Judith told me about her medical history.
She was born in England but in her early teen years her whole family had moved to live in Miami for her father’s work. She had lived there for six months when she fell ill. It began with unexplained bruises. The first doctor she saw dismissed her. Children fall over and bruise, it’s just what they do. But when a chest infection simply would not go away, a series of blood tests revealed the worst. Judith’s blood counts were dangerously abnormal. A bone-marrow biopsy revealed that she had acute leukaemia. Judith underwent a series of unpleasant tests that led to a course of chemotherapy. Her hair fell out. Her brain was irradiated and chemotherapy was injected into her spinal fluid to ensure that the cancer had not spread to her nervous system. Her immune system was so suppressed by her treatment that she developed recurrent infections. She became dangerously underweight. She required isolation in hospital for long periods of time. After the treatment Judith went into remission but within three months the cancer had returned. Her only hope was to undergo a bone-marrow transplant. Finally Judith had some luck, as it turned out her older sister was a perfect match.
Judith told me how her parents had taken her and her sister to Disney World as their treat before she went to hospital for the final chemotherapy that would prepare her for her transplant. That whole day she moved between the feeling that this was both the best and the worst day of her life. She was doing something normal for once and yet it did not feel normal at all.
‘I wasn’t well enough to be there,’ she said, ‘it felt sort of cruel.’
‘It was really great that your sister could be your donor.’
‘That didn’t feel right either. It felt like I owed her something. But I was a child with cancer and I didn’t feel like being grateful.’ Judith’s voice was monotone, deadpan even.
She spent much of the following weeks in the complete isolation required during a bone-marrow transplant. On the rare occasions that her family could sit in the same room with her they were covered head to toe in the gowns and masks that protected Judith from the outside world.
But it did not last for ever. Eventually Judith’s blood cell counts began to recover. First she was allowed out of her isolation room and in time she could go home. She still lived with restrictions. She could not go to crowded places in case she contracted an infection. Her mother cooked all her food, ensuring that her meals were prepared in the most hygienic environment possible. Judith stared from her bedroom window at the children playing basketball and eating pizza in their neighbour’s yard and longed for an imperfect day at Disney World.
All of this happened twelve years before Judith and I first met. A lot had changed since then. Judith’s family had moved back to England. Judith sat her A levels and eventually left home to go to college. She moved to London and got a job in childcare. Then one day, as she was playing with a toddler under her care, she abruptly collapsed. An ambulance was called and when Judith awoke she was in hospital.
‘Hospitals are so familiar to me that it almost felt like I had woken up at home,’ Judith told me.
Both Judith and her new doctors felt sure that the seizure must have been a consequence of the brain irradiation that she had undergone to treat her leukaemia. She was started on epilepsy drugs and discharged home. The seizures continued unrelentingly and she was referred to my epilepsy clinic.
As a junior doctor I spent six months working with a haematology team. I saw many patients suffer in just the way that Judith had described. So often the patients were young; several have stuck in my mind. Why, then, did Judith’s account of her cancer ordeal fail to move me? I knew why. It was because I did not believe her. All the facts were there but something was missing. What was it? Was the recital just that, a prepared performance? I could not pin down my suspicions. There were certainly some things that did not make sense, but was there enough for me to consider my patient a fantasist, or worse, a liar? Why didn’t Judith bring any old medical notes with her? People with complicated medical problems often bring copies of previous doctors’ letters and tests and prescriptions but Judith had come empty-handed. And where were her parents? Judith was a twenty-six-year-old adult so there was no reason for her to be accompanied, but parents who have seen their child through a life-threatening illness like leukaemia are usually not far away.
I found myself testing the details of what she had told me.
What antibiotics did you take after your transplant? Correct answer.
Where was the site of your bone-marrow biopsies? Correct again.
Do you remember the type of transplant you had? Autologous? Allogeneic? Right answer.
I felt shame as I quizzed her but I needed to know. If the story of the leukaemia was not true, then why tell it?
What was the name of the hospital where you had your transplant?
‘Miami General Hospital.’
It did not sound right. I would check it later.
‘What was your doctor’s name in case I need to contact him or her?’
‘Dr Marrow.’
Dr Marrow!
That was impossibly ridiculous, surely? But then again, maybe not. There was a very famous neurologist called Lord Brain, so why not? Perhaps Dr Marrow had a sense of humour when it came to career choices.
With only this strangely named doctor to go on I admonished myself. Perhaps if you meet enough people who have suffered, your heart hardens, and a girl who tells her story frankly and without sufficient emotion becomes a liar. I shrugged off my remaining questions as cynical and unnecessary and asked Judith to sit on the couch so that I could examine her. Her neurological examination was entirely normal but that is often the case even in people who suffer with the severest epilepsy.
Just before Judith hopped down from the couch I checked one more thing.
‘Where was your Hickman catheter sited, Judith?’ asking about the central line implanted in every leukaemia sufferer to allow chemotherapy and drugs to be administered.
Judith did not skip a beat, she pulled up her T-shirt and pointed to a small freckle just below her right breast. Not a scar, just a freckle, and not even close to the spot where a central line should be placed. This was the first question that she had not answered completely correctly. But she was only a child when she was sick and it was a long time ago.
Next I asked Judith to sit forward so that I could look at the skin on her back. It was a perfect English alabaster and in the place where I would have expected her repeated bone-marrow biopsies to have taken place it was smooth and white and entirely lacking in scars. How does someone come through such an illness without a blemish? Is that even possible?
When I was finished I told Judith I would admit her to hospital to witness her seizures. I had no proof that anything I suspected was right. I could not even justify my doubts if pressed. But I owed her a fair and open-minded hearing. Even so as soon as she left the clinic I found myself tapping ‘Miami General Hospital’ into the computer and there it was, just as she had said.
A few weeks later Judith was admitted to the neurology ward for tests. I had not managed to get all of Judith’s previous medical history. I had confirmed that Miami General had a haematology department, but when I rang there was no Dr Marrow. I thought I heard the girl on the other end of the phone giggle when I asked. Maybe he or she has moved on, she said politely. But when I pressed, I discovered that the hospital did not look after cancer patients, and nor did it carry out bone-marrow transplants. And there was no record of any patient by Judith’s name.
‘Judith, I have contacted Miami General Hospital and they do not have any records for you. Do you have any of your old hospital letters?’
‘No.’
‘When I rang the hospital they said they don’t carry out bone-marrow transplants. Do you think you could be mistaken about the name of the hospital?’
‘Maybe.’
‘Do you think your parents might be able to help?’
‘I suppose they could.’
‘Could I ring your mum or dad to get more details?’
‘No, they are both at work. They can’t take phone calls.’
‘Can you ask them for us?’
‘Okay but they might not remember.’
‘That’s okay, anything at all would help.’
Judith was admitted to the video-telemetry unit for monitoring overnight. Whatever the truth of her past medical history, her seizures required explanation. The following morning the ward staff told me that they had found Judith lying on the ground the previous evening. The nurse was with another patient at the time and nobody knew exactly what had happened. Judith had injured her hand and had needed to be taken to the X-ray department to look for evidence of a fracture. Thankfully there was none.
I scrolled through the video to find the point of the collapse. The nurses had found Judith on the floor at a quarter past nine. For most of the evening Judith had sat on her bed, flicking through a magazine, watching television. Shortly after nine I watched as she stood up and walked towards the door. The electrodes that were attached with glue to her head allowed her to go just to the threshold of her room but no further. She stood there for a while, looking about, and then gently closed the door. From there, Judith turned and crossed the room again until she was on the far side of her bed. I was horrified to watch what she did next. Judith shook her right hand loosely for a moment at the level of her shoulder and then she struck it roughly against the wall. She winced in pain. I shared her pain for a moment, feeling the need to comfort my own hand. Then Judith did it three more times, and winced again. Then she placed herself gently down on the floor, pulling a plate from her table so that it landed with a loud clatter beside her. A few seconds later a nurse threw open the door and came in. Judith could not be roused.
Suddenly all of the compassion and sympathy that Judith had failed to evoke in me with the story of leukaemia came flooding in. I was touched by the colossal innocence of the act. It was no secret that she was there to be watched. The video camera was set clearly in the wall, not hidden. How could she expect that we wouldn’t see? But, then again, perhaps that was the point. Some part of her wanted to be seen. What had Judith suffered that this was the only means she had to ask for help?
Every psychosomatic sufferer fears they will be accused of doing just what Judith had done, lying and deliberately injuring themselves just for the attention that it will bring. They are hurt by the comparison. But for a patient to consciously fake illness is rare. There are always rumours, the woman who put blood in her own urine to convince people that she had a serious kidney disease, the man who rubbed dirt into his wound to cause a deliberate infection. But most doctors will see such behaviour only once or twice in their careers, if at all. And yet somehow the shadow of those who deceive hangs over every person who is deemed to have a physical illness that does not have an organic cause.
Perhaps the longest shadow of them all belonged to Karl Friedrich von Munchausen, the ‘Baron of Lies’ who gave his name to the syndrome. Munchausen’s syndrome is now more correctly called factitious disorder. It refers to those who manufacture or imitate illness for medical attention. It is not done for financial gain, disability payments or compensation, it is done for the care and attention that illness brings. The behaviour of the patients can attract judgement very easily. Or mirth. The seriousness of it is often underestimated. Munchausen’s sufferers can expose themselves to life-threatening operations, amputations, unnecessary medications and toxic treatments. And in the background their ordinary lives are destroyed by their pursuit of a certain sort of attention. And most will flee as soon as they are detected so they will never get help. Even those who make it to the psychiatrist are rarely able to recover fully. It is the worst sort of life-destroying medical problem.
Fortunately it is rare. I work with a large number of people who suffer with conversion disorders, which means I might be expected to happen upon Munchausen’s more often than most, and yet I have only seen this condition three times of which I am aware. Judith was the third.
My first I encountered as a very junior doctor. She was a woman who had presented to hospital with a headache and a dilated pupil. On a neurology ward a patient with a single fixed dilated pupil can cause great concern. And it did. When scans were normal we were initially flummoxed. Until, that is, a nurse walked into an unlocked bathroom to find the patient self-administering dilating eye drops into the offending eye.
Five years later I met number two. There was nothing especially unusual about Joan at first. She had unexplained collapses. They could be epileptic seizures but nobody was quite sure. The usual range of investigations were normal so she was admitted for observation. Her first blackout in the unit occurred as she sat in bed watching television. The second occurred as she sat in a chair. On each occasion she became deathly pale and slipped limply into a lying position, either in her bed or on the floor. Watching the video and seeing the brain tracing, it looked as if Joan had simply fainted. There were no signs of epilepsy. But healthy young women don’t just faint while sitting relaxed in bed, so what on earth was wrong?
The technician I work with saw it before I did.
‘What is she doing with that handkerchief?’ he said.
We zoomed the picture in on Joan’s face and replayed the video. Once we saw it we could not believe that we had not noticed it before. You don’t notice what you don’t expect to see. Joan took the hanky out of her pocket and appeared to wipe her nose, or so we had thought. But magnified on the screen we could clearly see the small vial that the handkerchief contained. With one hand Joan unscrewed a cap and took a deep sniff. She returned the handkerchief-wrapped vial to her pocket and sat back. Within seconds she became pale and lost consciousness.
Joan absconded from the hospital as soon as we raised our suspicions with her. It was not possible to confirm what was in the vial but it was easy to guess. Vials of just this size are commonly used for amyl nitrite. This is a drug which, when used recreationally in inhaled form, causes a brief high. It has the unfortunate side effect that it lowers blood pressure and can cause the user to faint.
It is tempting to metaphorically point and laugh when one is faced with a factitious disorder – until one realises that those who suffer in this way can do themselves and others such great harm, and they rarely recover. I never knew what motivated Judith. Like Joan, she fled the hospital as soon as I confronted her. She was never seen by the psychiatrist and I never heard from her again. I always wondered where she got the story of leukaemia. It had been so full of accurate detail, more than could be learned from a book. I wondered if parts of what she had told me were true. Some factitious-disorder sufferers have been exposed to illness in childhood. I thought of the trip to Disney World that Judith had told me about in such specific detail. It was the most unnecessary part of her story. I thought of the sister who featured so heavily in that tale and for whom Judith carried such strong resentment. Was it possible that Judith’s story was in fact almost entirely true, except that it was not her own?
People lie to or mislead their doctor for different reasons. Scott had something in common with Judith but what he hoped to gain through illness was distinctly different.
Scott worked in a warehouse until his medical problems began. Much of his work was manual, heavy lifting, fixing light machinery. For this reason when he developed pain in his back his life very quickly fell apart. He was the main support for his family. He gave money to his ex-wife to contribute to the care of their three children. He lived with his girlfriend, Debbie, and her two children. Debbie worked in a school canteen but neither Scott nor Debbie earned a lot of money, so if either couldn’t work, they quickly felt the pinch.
Scott began to notice the pain after a particularly gruelling few days at work. He took a few days off and stayed in bed waiting to get better. When he returned to work the pain didn’t seem quite so bad but Scott felt that the days in bed had left him weaker than before. Heavy lifting seemed twice the burden it had been. Over the following month the pain came and went. Scott began to complain of difficulty climbing ladders. He took a further week off work and saw his doctor who prescribed painkillers and sent him to a physiotherapist. When Scott returned to work again he found heavy lifting almost impossible. He told me he could lift with his arms, but not his legs. His supervisor changed his work so that Scott drove the forklift truck and only needed to carry small loads. For six months this continued. Scott got better but always briefly and always followed by a significant decline. He took erratic weeks off work until his boss began to lose patience with him. A tribunal at work threatened Scott with the sack if his sickness record did not improve. The threat didn’t matter much to Scott because within two weeks he developed rapidly increasing weakness in his legs which left him with no choice but to leave work completely.
Over the course of one year Scott lost all power in his legs. He was completely paralysed below the waist, confined to a wheelchair and entirely dependent on the people around him. Debbie had to stop work. They had to give up the home they had lived in for ten years and were rehoused in a ground-floor flat in an area they didn’t know. The children had to move school.
I met Scott after he had taken the usual journey from doctor to doctor with some saying that they could find no explanation for his paralysis and some saying they felt it had a psychological cause. Scott navigated his way into the clinic room in an electric wheelchair, his legs covered by a blanket. Debbie was at his side. He did not seem happy to be there. He let me know from the outset that he would not tolerate a doctor who simply told him all the same things he had been told before. As he recounted his story and as I looked through his test results I feared I would be just such a doctor.
When it came to examining Scott I found that his legs were so entirely paralysed that there was no question of moving him from his chair to the examining couch. So instead, Debbie helped me to remove Scott’s shoes and socks and roll up his trouser legs so that I could examine him in his chair.
‘How do you manage all of this at home?’ I asked.
‘We manage,’ Scott replied.
I stood back and looked at Scott’s legs. That is what you are taught in medical school, always look first. Scott’s muscles were of normal bulk and I could see nothing out of place. But there should have been, I thought. I bent to move Scott’s legs. He had no pain but no feeling either. His legs moved freely and were a heavy weight in my hands.
‘Do you have physiotherapy?’ I asked.
‘I do that for him,’ Debbie answered. Debbie was now Scott’s full-time carer.
When I asked Scott to move his legs, even if only very slightly, he could not produce any movement at all. When I tested the feeling in Scott’s legs he could feel nothing. I applied pressure to his toenail, looking for a pain response or withdrawal of some kind, but he didn’t move. When I had completed the examination Debbie and I began to roll down his trouser legs again.
‘Debbie will do that,’ Scott said.
‘Thanks,’ I said and turned back to my desk. As I sat down Debbie was awkwardly pulling Scott’s right sock on to his dangling foot. Had I imagined something? Had Scott lifted his leg slightly or had Debbie lifted it for him? I put my head down again to write my notes but during another upwards glance I became more certain that Scott had moved his leg, more than once.
All of Scott’s clinical findings and tests spoke of only one thing: functional leg weakness. If Scott had moved his leg it did not alter the seriousness of his disability. Perhaps his weakness was not as impenetrable as he thought but that should not detract from the disability he was experiencing.
I told Scott that if he wished I would repeat some of his tests but that I thought it likely that I would come to the same conclusion as the other doctors.
‘Do you believe I’m paralysed?’ Scott asked me.
‘Yes, I do.’
‘Well, what’s the point in repeating the tests? Why don’t you bloody doctors just admit you don’t know what’s wrong with me?’
Scott left the consultation that day dissatisfied and with a parting promise that he would never return. I told him that if he changed his mind I would be happy to meet with him again. He spoke as if he meant it, and it was entirely likely that Scott and I would never have laid eyes on one another again had I not been in a rush to get home that day.
Almost as soon as the clinic was finished I gathered my belongings to leave. My car was in a car park ten minutes away from the main hospital building. I walked quickly and soon I was convinced I could see Scott and Debbie in front of me. Scott was propelling himself in his chair and Debbie was walking beside him. I had almost caught up with them when Scott stopped beside a large black people carrier. Debbie walked around to the passenger side and climbed into the front seat. The electric rear door slid open on the driver’s side. I was nearly at the car when Scott stood up. He picked up his wheelchair, lifted it into the back of the car and climbed into the driver’s seat. As I drew level with the car Scott turned his head and looked at me. Through the closed window he mouthed an expletive and I walked away.
Scott is one of the ones who are not so innocent. They are the smallest in number but somehow they colour every other person in the group. That is the shame of it. Scott is the only one of my patients that I could ever confidently refer to as a malingerer and yet many conversion-disorder sufferers will find themselves lightly, or heavily, tarred with this suspicion.
Conversion disorders, factitious disorders and malingering are three distinct groups. The first two constitute disabling illness, the last does not. Conversion disorders are subconsciously generated, and the patient is mystified to discover that no organic disease has been found. In a factitious disorder the affected person has an awareness of the lies they are telling but they do so out of a need for a certain kind of support and attention. Often they are unaware of their own motivation and cannot control their own behaviour. Malingering, however, is quite different. It is a deliberate feigning of illness for financial gain, to win a court case, to avoid conscription. Malingering is illegal and often requires prosecution rather than medical intervention.
And yet is it quite as simple as that? The Diagnostic and Statistical Manual (DSM) does not consider malingering to be a medical diagnosis. Sufferers are not referred for medical help once they are discovered. But are all sufferers the same?
Imagine a woman who has fled a war-torn country where she has known every sort of assault and has lost her family. She flees to England and seeks asylum. Facing possible deportation she fakes an illness so that she cannot be sent home.
Imagine a man who slips on a wet floor in a supermarket. He pretends to be paralysed so that he can sue a rich corporation for a large amount of money.
Imagine a man who grew up with a single neglectful parent, a parent who didn’t work but lived off allowances and taught their child nothing about how to make their own way in life. When the child grows up he uses illness to avoid work, just as his parent had.
Are all of these people exactly alike and do they all deserve our contempt and equally so?
I am often asked how I spot the malingerers and I answer that I don’t even try. I always make the assumption that my patient’s suffering is genuine and do not make any attempt to prove otherwise. For some people that stance is difficult. They imagine that comedy sketch where the paralysed man jumps up and dances a jig every time their carer’s back is turned. It is possible that some of my patients have had the satisfaction of feeling they have fooled the system, but it is better to miss those rare few than to alienate and demean the rest. I have seen enough patients with conversion disorders to know how damaging an accusation of faking can be and to know which mistake I do not want to make.
I wrote to Scott’s doctor and told him what I had seen. He wrote back to say that Scott was in the process of suing his employer, claiming an injury sustained at work had caused his paralysis. In time I received a request from a group of solicitors asking for Scott’s medical notes. I sent the notes which included the letter telling Scott’s GP that I had seen him not only walk, but do so easily and lift a heavy wheelchair and drive. I received no information about the outcome of the case but it is unlikely that Scott fared well. And yet I still hesitate over Scott. He and I did not see eye to eye when we met and I have a low opinion of his behaviour, but was there more to know? Scott had worked hard for many years. He had not had many opportunities in life. He supported two families. Scott had chosen the wrong way out of his situation but perhaps he had a reason. Perhaps if we knew what motivated him we could learn to understand why he did what he did. Perhaps we would condemn him anyway, but perhaps not.
Malingering and factitious disorders are rare. And the truth is that, even without trying, they are usually easy to spot. The behaviour of those patients is often different to conversion-disorder patients. Innocent or not, if a patient is aware of their own deceit it makes them evasive. Their stories do not ring so true. They fail to turn up for tests, they cancel hospital admissions. They are not on the relentless pursuit for truth that Yvonne was on.
I had wondered if I would see Yvonne again. If a patient is going to resist the diagnosis of a conversion disorder they do not always come back to clinic either. They might go to see another doctor in the hope of getting a different diagnosis. Or some choose to live with their disability. Or some get slowly better and put the illness behind them and call it unexplained. I hoped Yvonne would come back. Her disability was so complete, her life so torn apart, that I could not see that she could continue as she was.
A few weeks after her discharge from hospital Yvonne came to the outpatient clinic. Her daughter brought her in a wheelchair. At home she walked around unaided and her children helped her when they could, but in unfamiliar places she needed more than this. Her daughter told me that Yvonne refused to learn to use a stick for the blind.
‘I think she feels that if she uses aids for the blind it means admitting she won’t get better,’ she said.
‘Maybe that’s not a bad thing,’ I said. ‘It means she has hope.’
We had found no physical reason for Yvonne’s blindness so there was hope, and I was glad that Yvonne had not given up.
‘She has agreed to see the psychiatrist although she has reservations … my father has reservations,’ her daughter said.
I noticed not for the first time that people seemed to feel the need to speak for Yvonne.
I told them I would arrange the psychiatry assessment and asked if she had anything to ask or say. Yvonne said no and the consultation was over. As her daughter propelled her out of the office Yvonne held her hand out in my direction and I took it in mine.
‘If I don’t get better I’m no use. Please do whatever you can.’
‘I believe you will get better,’ was all I could think to say.
I thought our meeting was over and the door was open for them to leave. But as so often happens, the thing that somebody really came to say is left till last and even then only offered reluctantly. On this day it came from Yvonne’s daughter. Just as they crossed the threshold she turned back and her words came in a hurry.
‘If she tells the psychiatrist that everything is alright at home she’s lying.’
I was shocked, not so much by the news, but by the manner of its delivery.
‘Maire—’ Yvonne said, grabbing her daughter’s hand.
‘That’s all I’m saying,’ her daughter said and pulled away from her mother’s grasp. And then they were gone.
I did not see Yvonne again after that, but her daughter’s words stayed with me. What little I would learn later would come in correspondence from the psychiatrist. These letters were factual, plainly written but always slightly cagey, as they have to be. You cannot put the most intimate details of a person’s life into a letter. If a thought that has never been spoken comes out for the first time it is not right to make it permanent by recording it in black and white for anyone to see.
The first letter began with the details of Yvonne’s medical history and a summary of investigations before discussing more personal details of her life:
Yvonne married at the age of twenty. She stated that she was very happy to be married although it did come with some sacrifices for her, first her job and later her home town. Her husband Gerald, who has very traditional values, had been strongly opposed to her continuing to work and keen to start a family straight away. Yvonne had reservations about having children at such a young age but when her first child, Maire, was born they bonded well. The rapidity of the subsequent pregnancies were dictated by Gerald. Yvonne stated that she ‘had difficulty saying no to Gerald’.
Since her husband worked long hours Yvonne brought the children up largely alone but felt great self-worth in doing so and describes herself as having an excellent relationship with each of her children. Gerald was a good supporter of the family and Yvonne regards herself as comfortably off. She is very proud of each of the children but saddened at the partial estrangement of Maire, who has fallen out with her father.
Yvonne states that she has a happy marriage although other statements suggest that this is dependent on her giving way to Gerald’s opinion. Yvonne’s supermarket job was a great source of tension in the home and partially responsible for Maire’s fractured relationship with her father. Gerald felt the job was demeaning and unnecessary whilst Maire encouraged Yvonne to take the position.
Yvonne’s accident at work had resulted in an argument at home. Gerald had been called away from work to come to the hospital to collect his wife. When he learned what happened he had insisted that she resign from her job instantly. Yvonne, whose vision was not affected in the immediate aftermath of the incident, tried to plead otherwise. Gerald had phoned Yvonne’s employer and offered her resignation on his wife’s behalf. Later that evening the argument had become moot when Yvonne discovered she had lost her vision.
The letter went on to state that Yvonne had great difficulty accepting the functional basis for her blindness but was willing to do anything possible if there was any hope of recovery. She was struggling at home, unable to do any of her usual work. Gerald had hired a housekeeper who did all the housework and helped with the children but would not take responsibility for Yvonne. This left Yvonne feeling both superfluous and frightened in her own home.
At the end of the consultation with the psychiatrist Yvonne agreed to an admission to the psychiatric ward for intensive rehabilitation and talking therapy.
The second letter came months later:
Yvonne has now been discharged after a four-week in-patient stay. There was some controversy as to where she would stay after discharge. In the first instance she planned to return to her family home but it was ultimately decided that she would be best placed with her daughter, Maire, until her recovery is more complete. She seems to have benefited from both occupational and cognitive behavioural therapy. Her vision is partially restored and she plans to continue therapy as an outpatient. We will continue to meet with her and let you know the outcome.
And then the third and last.
I am happy to let you know that Yvonne’s vision has returned to normal. She has engaged well with treatment although both she and her husband still struggle a little to accept the diagnosis in full. She has recently moved back to the family home and reports that things are going well and she is getting great pleasure from being with the younger children again. So much so that she has decided it would not be right to return to work.
Yvonne has crossed my mind several times since then and when I think of her it is often with the thought that I did her a disservice. I liked Yvonne. I felt sorry for her. But I did not believe that she was blind. Over the many years since I have watched patients just like Yvonne set out on a desperate search for an explanation for their physical symptoms, having every test twice in the certainty that one would finally give the answer. It took meeting those people for me to realise that I had been wrong about Yvonne.
I remember the first time I saw the invisible-gorilla experiment shown at a conference. I did not see the gorilla. My mind had simply discarded it. What amazed me was that I had not blocked out something meaningless and trivial, only paying attention to the thing that interested me. I had seen the trivial and instead discarded something so flagrant and incongruous that it was a struggle for me to believe it had ever really been there.
I was a fool to question Yvonne’s motives and insight because she had, suspecting or unsuspecting, answered my question on the day she was discharged from hospital. Yvonne had told me how things were when she handed me the card she had made. A woman who wishes to lie and fake and fool wears dark glasses and carries a cane and stumbles about. That woman certainly does not draw a picture. Yvonne’s drawing was not evidence of guilt but of innocence and, at the moment that she handed it to me, it was I who could not see.