Your vision will become clear only when you can look into your own heart.
Carl Jung, Memories, Dreams, Reflections (1961)
I CANNOT IMAGINE the person who would meet Maria and fail to like her. She is fifty years old but she has a childlike quality that endears her to everybody. She has been in hospital under my care three times now. Each time she brings George with her. George is her stuffed bear. He is almost as old as Maria herself. She would not dream of leaving him alone at home. Nor is she ever without a picture that shows her beaming broadly beside her favourite football player. Maria does voluntary work greeting people at the entrance to a stately home. That was where she met David and shook his hand, and where he had kindly paused so they could have a photograph taken together. Maria tells me the story of their meeting almost every time I see her. If asked, Maria would mark this as the best moment in her life.
‘What about the times that Manchester won the league?’ I asked once.
They were good times, but meeting David was better.
‘All the girls will be jealous when they see that picture,’ I teased Maria and she laughed.
Maria was a healthy child until the day that she had her first epileptic seizure. She was five years old when they began. They continued until she was fourteen. During the time when Maria’s brain should have been maturing it had been disrupted by frequent convulsions. As a result Maria’s intelligence lies just in the region that means she has been categorised as mildly learning disabled.
Maria’s parents had provided her with a loving home but they had an old-fashioned sense of self-sufficiency that did not allow them to take advantage of all the services that might have been available to Maria as she grew up. As a consequence she spent much of her life at home with her mother, isolated from people her own age. Maria’s learning was interrupted in every way by her frequent hospital admissions. When she should have been finding out about life she lay in hospital or at home. She spent very little time at school and left with no qualifications and very few life skills. What Maria knew she had learned from her mother. When her mother cooked, Maria watched and stirred the pots. When her mother cleaned the house, Maria followed her carrying the sprays and dusters. When her mother’s friends visited, Maria delighted in putting on an apron and acting as waitress. Maria rarely went out and never formed close friendships outside her family. It was her father who had encouraged her love of football. Whenever possible he took her to see a match. The only other regular outing that Maria enjoyed was her weekly trip to church with her mother.
Maria was an only child with few interests. That hadn’t mattered much because, as the centre of her parents’ world, Maria was well cared for and never alone. That the situation was unsustainable had not fully dawned on anyone until her mother had her first stroke. She recovered well on this occasion but her mortality had been brought sharply into focus. Plans needed to be made for how Maria would manage if and when her parents were not around. The local learning disability and social works teams arranged for Maria to attend a day centre. They also organised weekly volunteer work. Her parents set up a fund with administrators so that Maria would always be provided for. When Maria was in her late thirties, her mother suffered the second stroke, the one that would take her. Maria and her father muddled on together for a while. When Maria was forty-two years old her father died.
So now Maria lives alone in her family home. Because of the measures her parents had put in place she has a carer who visits briefly every morning and evening. Most days she has activities, either volunteer work or at the day centre. Maria’s preferred work is the greeting, which she does at a supermarket as well as the stately home. At the supermarket Maria gets great pleasure from shouting a loud hello as soon as somebody approaches and handing them a shopping basket. She does not always take it so kindly if the hello is not returned. Once she followed a customer into the shop and down an aisle when they failed to acknowledge her. After that she had lost her job for a while until a kindly social worker intervened and asked the shop manager to give her another chance.
‘If they don’t say hello back, I’m not allowed to say anything,’ she told me.
‘Not everybody is as friendly and happy as you, Maria, so we have to remember that,’ I replied.
‘My social worker said that some people are too busy to say hello.’
In fact I suspect that Maria brightens many people’s day. For all the people who do not respond there are others who make a point of stopping. Anybody who knows Maria at all knows that she can always be drawn on the subject of football, and I suspect many lively conversations happen at the door of that shop.
At the age of forty-five Maria had her first seizure in thirty years. She had been taking her epilepsy medication since her teenage years. Attempts to withdraw it when she was a child had resulted in seizures so it was felt prudent that she should stay on it all her life. One Monday morning Maria’s carer had called to see her as usual only to find her lying on the floor of her sitting room, a carpet burn extending from her elbow to her wrist. She came around when the carer shook her but did not know how long she had been lying there. Maria was taken to hospital where tests were normal. A blood test showed an unusually low level of epilepsy drug in her blood and the doctors feared that, in the absence of supervision at the weekends, Maria might have forgotten to take her tablets.
After that Maria suffered clusters of collapses occurring months apart. Her doctor increased the strength of her epilepsy drugs and a carer was employed to visit at the weekends to supervise Maria as she took her tablets. The seizures continued. As the source of the problem was clearly not missed medication, Maria was eventually admitted for video telemetry to verify what was happening when she collapsed.
On her first visit to the hospital Maria had spent the biggest part of every day standing at the door of her room calling out to the nurses working on the ward. Leads that were attached to her head to record her brainwaves during an attack did not allow her to wander out into the corridor or around the ward. Just through standing at her doorway and calling out she made friends with other patients and soon she had people visiting her room throughout the day.
The day before Maria was due for discharge I was told that she had been found the evening before lying on the floor of her room. I looked at the video to see what had happened. Evening was the quiet time for Maria, there were fewer staff on the ward and other patients were with their visitors. Maria had been pacing her room, sitting down briefly to watch television and then walking to the door and calling out to somebody who didn’t come. She had been behaving restlessly in this way for almost an hour when I saw her take some magazines and throw them on the floor. Then she went to the door and I could hear a distant shout, ‘Help, help.’ She returned to her room and, using her bed for leverage, she lowered herself carefully to the floor. She lay still then, with her eyes closed, but nobody came. After a minute or so of waiting she stood again and did the same, walked to the door and cried for help. This time, when she returned to the room she also pressed the alarm button before she lay down again and closed her eyes. Only when she heard the nurses arrive in the room did she begin to shake. The nurses were very experienced and recognised straight away that Maria’s seizure was unlikely to be due to epilepsy. They talked to her and reassured her that she was safe. One got down on her hands and knees beside Maria and stroked her arm and told her that everything would be okay. When they got no response the second nurse began to talk.
‘The match is on soon, Maria, you don’t want to miss that.’
Maria’s eyes were tightly closed but her face broke into a partially suppressed smile.
‘Is David playing tonight?’ The nurse knew Maria very well.
By now Maria’s teeth could be seen in the smile.
‘I’m not sure they’ll win. They have not been playing so well,’ the nurse added.
That was far too much for Maria who opened her eyes then. ‘They will so win!’
The shaking had stopped, Maria stood up again, and lively debate about the finer points of football ensued.
With the help of a nurse, I sat Maria down to discuss her blackouts. Her innocence stopped the conversation before it had properly begun. A childhood of epilepsy made it impossible for her to consider any alternative explanation and our conversation came to a quick halt when Maria fell to the ground and began to shake. The shaking didn’t stop until I had left the room.
The next day the psychologist met with Maria but it was clear that she could not engage in a conversation about non-epileptic attacks in any meaningful way. So we set about finding other ways to help.
I contacted her doctor and her local casualty department to explain her diagnosis. Usually when Maria collapsed she was rushed to hospital by ambulance. Once there she was given drugs and on one occasion she was admitted to the intensive care unit because the seizure failed to stop with medication; often in this highly fraught situation non-epileptic convulsions are mistaken for epilepsy and treatment is started that does more harm than good. In Maria’s case this would mean the risk of serious side effects from receiving unnecessary drugs and the potential life-threatening complications of intensive care units and ventilation, including chest infections or blood clots. What was happening to Maria was harmless, but the treatment could put her in danger. By ensuring that the diagnosis was well communicated to all the doctors involved in her care I felt we might at least be able to make sure that they thought carefully before intervening too aggressively when the next attack occurred. She could be treated just with love, attention and reassurance.
And we put Maria in touch with the social worker again. Despite her volunteer work and her hobbies Maria was spending long periods every day on her own. The social workers helped her to find a befriending service, someone who she could ring in the evenings when things were very quiet at home. Maria’s childhood had been filled with love but the adult Maria found herself alone without the language to explain how she felt. There was very little intent in what Maria had done in hospital. Her first collapse in adulthood was probably due to epilepsy, caused by a missed tablet just as her doctor suspected, but somehow that seizure had inadvertently acted as a reminder. In her loneliness Maria had reverted to something from her childhood that had been a benefit of sorts to her then. When Maria lay down on the ground her brain was recalling a time when a small girl had a seizure and a mother came running.
I think of Maria when I need to remind myself that there is no single solution to psychosomatic illness. To look for one is akin to looking for the cure for unhappiness. There is no single answer because there is no single cause. Sometimes you just have to figure out what purpose the illness serves, find what is missing and try to replace it. If illness seems to be helping solve the problem of loneliness, then treat the loneliness and the illness will disappear. Or find out where the gain lies and address that. Or if the problem lies in maladaptive responses to the messages the body sends, that can be relearned. Break the patterns of fear and avoidance. Or if there is a specific trauma triggering illness then address it. There is no shame in asking for help. If there is no explanation and nothing else has helped, talk to a psychiatrist. What have you got to lose? We only have one life, why not explore it?
All my patients are individuals with their own story to tell, their own set of problems and their own solution. Even where the symptoms of their distress are very similar, the roads that bring them to me are not. Each of them teaches me something important, just as each new patient I meet reminds me that there is always more to learn. But, for all their differences, there is one thing that every patient shares, and that is the confusion of their journey. But when neurologists know that conversion disorders are so common, why does the news come as such a shock to patients? If psychosomatic symptoms are so ubiquitous why are we so ill-equipped to deal with them?
Consider the statistics once again: in 2011 a German study showed that twenty-two per cent of people attending a primary care centre had a somatising disorder. A UK study looking at medically unexplained symptoms in hospital clinics found them common to every clinic; in some clinics they represented more than fifty per cent of those attending. A Norwegian study asked over 900 consecutive patients at a GP practice if they thought they suffered with any of the following: amalgam poisoning, irritable bowel syndrome, candida syndrome, chronic fatigue syndrome, fibromyalgia, electromagnetic poisoning or food intolerance. Each of these diagnoses is considered either entirely medically unexplained or only partially explained and with a large psychological component. Nearly forty per cent of respondents thought that they might have at least one of these complaints. In the United States, where medical insurance is expensive and the system is very different from the NHS, the prevalence of dissociative seizures in most epilepsy clinics is thirty per cent – much the same as in the average UK epilepsy clinic.
And then consider the impact on the health service: in 2011 three GP practices in London identified 227 patients with the severest form of somatic symptom disorder, those like Pauline. These 227 patients constituted one per cent of the GP practice populations – confirming that it is a rare illness. Those patients attended secondary-care facilities 1,077 times in one year. They each had twenty appointments with their GP and underwent numerous investigations. These 227 alone cost the NHS over £500,000 in one year. When this was extrapolated to an estimated cost for similar patients throughout London it came to £115 million per annum. That is the cost for London alone, and for the most severe form of somatic disorder. There is no estimate available for the large number of people who attend the doctor with less severe forms of the illness – possibly up to thirty per cent of GP encounters every day.
If we really want this situation to improve then we each have a contribution to make. There is room for change in all of us. Doctors should be less afraid of this diagnosis, more willing to confront it and more compassionate to the sufferers. Medical schools should teach their students about this disorder, create better doctors. Medical professionals need to stop placing this unqualified diagnosis right at the bottom of their list. Certainly, this is a diagnosis that is left over when tests are normal and nothing else fits, but why should that detract from the disability and suffering it causes? Instead of appearing as a footnote in medical textbooks, psychosomatic disorders should be acknowledged as a serious diagnosis in their own right. But most of all society, the general public – you! – need to stop regarding symptoms of this sort as in some way less ‘real’ than those associated with other diseases. That is where Charcot is to be admired. For all his faults, for all the ways in which he was wrong, he applied the same scientific rigour and the same level of interest to hysteria that he had given to every other neurological disease that he studied. That’s what all of us could do differently – when we encounter somebody who is severely disabled with purely medically unexplained symptoms we should treat that person with the same respect that we would give to anybody else with any other diagnosis.
It has taken over twenty years for me to feel I am even close to an understanding of these disorders. Personally I find a strange sort of comfort in the knowledge that my body can react in this way to stress. And if my body wants to tell me something, I intend to listen. A few years ago I broke a bone in my foot and had to wear a plaster cast for a month. When the cast was removed my foot was misshapen and wasted. For two weeks I limped about as I tried to recover. Previously healthy, I could not accept that my progress was so slow – there must be something wrong. Had the fracture failed to heal? I made an appointment to see my doctor. He suggested that I go for an X-ray. The X-ray was done that morning but I had to wait until the next day for the result. I was fascinated to observe how my symptoms evolved during that twenty-four hours. I had walked to my GP surgery the previous morning, a mildly painful ten-minute stroll. Over the course of the day that followed I began to feel that my foot was weakening. My limp worsened and I ended the day hopping on one leg, only able to place the toes of the affected foot on the floor for balance. In my mind was a vivid image of a bone snapped in two, the exposed ends pushed apart by any pressure I applied. And yet, even though I struggled to walk I still clearly recall that I was not scared … because I had seen this before. My experience wasn’t so different to what my patients have described to me. I knew there was no medical reason for my foot to deteriorate so quickly. On one level I knew that my symptoms did not make sense, but on another I reacted like any other person might. Once I had learned that my X-ray showed a well-healed fracture I made a quick recovery – I had hopped to my GP surgery but walked home.
I believe in the reality of psychosomatic symptoms, and imagining that my symptoms were psychosomatic had comforted me throughout. I was somebody who was unaccustomed to pain or any sort of disability but my knowledge had been useful to me. All along I hoped my symptoms were psychosomatic because, if they were, then I was in control again and I could hope to get better soon. There was no shame in that feeling.
For us to consider a psychological cause for serious illness it is vital that we believe that such a thing is possible, and how extreme psychosomatic illness can sometimes be. For people to accept the reality of psychosomatic illness they must accept the power of the mind over the body. We seem to be happy to accept reports of people using hypnosis in place of anaesthesia, the placebo effect, the use of sports psychologists, homeopathy and alternative medicines, the effect of meditation and cancer diets and any number of other examples of how the mind can influence the body. Why is the idea of the mind reproducing physical symptoms any harder to credit? For all the positive effects the mind can have, there can just as easily be negative ones. There is no point resisting: disability for psychological reasons is all around us, it can exist and does. It is a common problem that could affect anybody – ourselves, as well as the people we know and love.
If public perception is to change, each of us would have to accept that part of ourselves which reacts physically to the world around us. Maybe if we understood better the way our own bodies lose control, triggered only by a feeling inside, then more extreme reactions might not seem so unacceptable. Because we do all somatise our emotions, whether or not we acknowledge it. Think about laughter. When we laugh our diaphragm contracts repeatedly, air is expelled from our lungs and then drawn back in again at speed. The larynx half contracts and a rhythmic gasping sound is released. The facial muscles contract and the mouth opens. The skin around the eyes wrinkles. The head goes back. Sometimes the whole body joins in, the hands clutch the stomach, we bend forward at the middle and our whole body trembles. When the pleasurable emotion goes far enough, water gathers in our tear ducts and releases itself down our face. For a second we can barely breathe, our hearts race and our faces redden. And, even better, it is contagious. The heartier the laugh the more people around are drawn to look at us and join in. So that, even without knowing the emotion that started it, strangers are drawn into your physical concert.
But laughter communicates more than just mirth, it is triggered by a variety of emotions. Alongside humour, it can also occur as a result of social discomfort or embarrassment or it can be an expression of negative intent, such as derision. In most cases laughter is an involuntary mechanism but it can be disingenuous, it can be faked.
Nobody fully understands the mechanism by which the brain produces laughter. Many parts of the brain have been implicated but no single laughter centre has ever been identified. It’s likely that laughter is not a single phenomenon, that different laughs have different causes and are generated in different parts of the brain. That is why a laugh of derision is not easily mistaken for one that is heartfelt, because they are related but different phenomena.
Freud believed that laughter, like dreams, could betray our secret thoughts. Most of us have laughed when we didn’t mean to and in doing so inadvertently allowed people to know something of what we secretly thought. Laughter is often involuntary, so if we looked at what makes us laugh we might learn something about ourselves. Jokes allow us to laugh at things that are not normally socially acceptable and that in itself is revealing.
Laughter can be therapeutic. Pent-up anger or sadness can be converted to laughter and in doing so release an internal tension. Laughter can distract us. If we are suffering stress or fear we might feel better to suppress or deny it and seek out laughter instead.
And laughter can go wrong. Sometimes it can be a sign of illness or disease. Inappropriate poorly controlled laughter is seen in a variety of psychiatric and neurological disorders. In mania there is the raucous laughter that goes too far. Diseases affecting the frontal lobe of the brain can cause inappropriate laughter where the brain has ceased to be able to distinguish between situations that can rightly be considered places for humour and those which cannot. There is also a sort of epilepsy which manifests as nothing more than a mirthless laugh.
How easily we accept these different facets of laughter. It is a physical display of emotion, its mechanism is ill-understood, it is not always under our voluntary control, it affects our whole body, it stops our breathing and speeds up our heart, it serves a purpose, it releases tension and communicates feelings. Laughter is the ultimate psychosomatic symptom. It is such a normal part of the human experience that all its facets are universally accepted. Now all we have to do is take the few short steps to a new realisation. If we can collapse with laughter, is it not just as possible that the body can do even more extraordinary things when faced with even more extraordinary triggers?