What’s in a name? That which we call a rose by any other name would smell as sweet.
William Shakespeare, Romeo and Juliet (1597)
SOME PSYCHOSOMATIC DISORDERS are extreme and rare. Others are so common that even if you are not personally affected you probably know several people who are, although many of those people will of course hotly contest any suggestion of a stress-related cause. Psychosomatic symptoms are by their very nature evidence of denial. When a symptom cannot be measured, that creates an ideal opportunity for denial to flourish.
We all perceive sensations differently, although the method by which our bodies communicate those messages are the same for all of us. A tiny odour molecule stimulates a receptor in our nose or a vibration strikes our eardrum and a signal is released. An electrical discharge travels upwards through the nerves and to the brain. In just the same way that sensory and motor nerves transmit information by means of an electrical impulse, so too are smell and hearing messages carried to the brain. The speed, integrity and size of this response can be measured and the measurements are very similar between individuals. Each nerve is just a bundle of cells and fluid, and the message it carries just a flow of ions. A nerve is like a living piece of electrical wire. Remove the nerve from the body and preserve it and it will transmit its message as if it still existed in the living human being. It doesn’t need the brain to function. A nerve’s response is standardised but how we react to the message it transmits is not. Somewhere inside our heads the message is interpreted, and it is in that interpretation that we become individuals again.
Our experience of each sensation is our own. We like the smell of a perfume or we don’t. We love to have our feet massaged or we cannot bear for our feet to be touched. We each have individual thresholds for sensation, differing pain tolerance, a fondness for cold or for heat, varying experiences of taste and smell. And just as we all feel pain differently, fatigue too is an experience that is uniquely ours.
In medicine fatigue is a particularly enigmatic problem. There is something in its nature that makes it difficult to pin down. We all experience it from time to time but we can only know how it feels to us. It is absolutely subjective and absolutely normal – until it becomes not normal, that is, and when that happens it is not always easy to say why it has. Trying to understand why a patient is suffering with excessive fatigue can point a doctor both nowhere and everywhere. If there are no other clues the cause might lie in the brain, or the heart, in the blood, almost anywhere. An endless number of medical conditions are associated with excessive tiredness: multiple sclerosis, lupus, diabetes, cancer, HIV, thyroid disease, anaemia, heart disease, coeliac disease and many more. Excessive fatigue does not necessarily imply illness. It is part of all of our lives from time to time, when we are not looking after ourselves or we’re working too hard or are missing out on sleep for whatever reason.
Another feature of fatigue is how little sympathy we have for it at times. If your workmate rang you up and said they could not work today because they felt too tired, how would it make you feel? When a loved one has had a bad day at work and is complaining about their exhaustion, sometimes we sympathise but other times we can only counter that person’s description of their tiredness with our own. Perhaps it is precisely because we have all regularly experienced fatigue – and it was not so bad for us and we were able to keep going – that we cannot quite get the measure of why others complain so bitterly about it. After all, a good night’s sleep will cure it, won’t it?
Part of the problem is that fatigue can be described but never objectively quantified. I describe my tiredness today by comparing myself to other days because it is the only measure I have. So if I am the only frame of reference I have, how can I really know how others experience it?
One way that normal fatigue might be distinguished from that which indicates illness is in how it responds to rest. If I am tired because I am overdoing it and then I rest, I usually feel better. But where the tiredness has reached the point of a disability, rest often fails to give relief. That is how it is for sufferers of chronic fatigue syndrome.
People in the waiting room moved back as Rachel wheeled herself slowly past them to get to the door of the room where I stood waiting for her. Chairs faced one another in rows and the space between them was narrow. Seated people turned their legs to the side and pulled their children up on to their laps as the wheelchair travelled forward. A man and a woman who I took to be Rachel’s parents were walking behind her. I moved to help but the woman stopped me.
‘She has to do things for herself.’
I could only stand and watch, then, as Rachel laboured forward. Once settled in the room, her parents seated on either side, Rachel asked for a moment to compose herself. Even before a word had been exchanged I felt that a point had been made.
Rachel had been unwell for three years. When her problem began she was a dance student, hoping and expecting to follow a career in modern dance performance. Rachel’s love of dance began when she was six years old after her mother had enrolled her in a ballet class. Soon she also studied modern dance and jazz. At the age of twelve she enrolled in an acting class. One day a casting director came to her class looking for a child to take the lead role in a television advert. Rachel got the job. It made her a minor celebrity at her school for a term. At the age of fourteen she left mainstream education and transferred to an academy for the performing arts. By the time she was sixteen she had decided that her strength was as a dancer and she planned to make that her future career.
Even outside of her interest in performance Rachel was a very active girl. She went for a run every morning, in her spare time she enjoyed swimming and playing tennis. That Rachel was a girl who never sat still only added to her distress when she fell ill.
Rachel was in the first year of a degree course in dance when she suspected there might be a problem. She had recently returned from a holiday in America and expected to feel refreshed as she got back down to work. Instead she felt quite the opposite. The first sign was that she found it increasingly difficult to stay awake during lectures. She would regularly drift off and then wake with a start. No matter how soundly she had slept the previous night she could not concentrate for any significant length of time. She soon fell behind in her academic classes. While this was the least important segment of her course it still caused Rachel great concern. The course was competitive and Rachel knew that only a small number of students would successfully make a career out of performance alone. She clung to the knowledge that she was one of the best in her practical dance classes, which made it even worse when she began to suffer problems there too.
All the students in her class experienced minor injuries from time to time. The college provided a sport physiotherapist to monitor the students’ physical well-being and to provide treatment when injuries occurred. Rachel began to notice that after her more strenuous classes she felt that her joints were swollen and that her hips and lower back ached. She consulted the physiotherapist who advised her on her posture and gave her exercises to strengthen her back and legs. Despite closely following the advice given, Rachel did not improve. Soon she found that when she was asked to carry out more energetic dance steps she did not have the power that the other dancers her age seemed to. Several times she had wavered and had almost fallen. She began to suspect that there was more going on than the usual dance-related injuries.
When Rachel went home for the holidays and described her problem to her parents they became very concerned. Rachel’s mother took her to the family doctor and he wondered if her symptoms indicated that she might have multiple sclerosis or a muscle problem. He referred her to a neurologist who examined her and told her that he could not find anything amiss – there were no signs to indicate a neurological disease and he did not think that tests were necessary.
The next term at college Rachel’s problems worsened. Aches and pains moved around her body. Dance practice, which could last two hours or more, became impossible for her. Lectures were worse. Rachel was unable to concentrate. When she reviewed her notes at the end of a class she found that what she had written was sometimes close to nonsense.
When it was obvious that Rachel was falling behind, her teachers suggested that she take the rest of the term off. They told her to go home and try to figure out the source of the problem before returning. Rachel’s parents were very upset to find a tear-stained Rachel on their doorstep one evening.
When Rachel saw her doctor she told him that she was overwhelmed with fatigue. Every day felt like the day after a major dance recital. Her whole body was consumed with aches and pains that moved around and became worse with every activity she attempted. She had stopped dancing and she could no longer take her morning run.
Rachel saw another neurologist. This time some blood tests were taken and Rachel was referred for an electrical test to check the integrity of her nerves and muscles. The tests were normal. With Rachel deteriorating fast and at risk of losing her career, the neurologist arranged for her to have a muscle biopsy, concerned that she might have a muscle disease. Again the results came back normal. The neurologist discharged Rachel and her worried mother took her back to see her doctor again. This time he referred her to a rheumatologist. The rheumatologist repeated much of what the neurologist had done and came to the same conclusion – he could find no explanation for Rachel’s symptoms.
For the next two months Rachel’s parents watched their athletic energetic daughter fade in front of them. Unrefreshed by sleep Rachel spent most of the day lying on the sofa, in and out of a half-sleep. Soon the energy required even for simple tasks like reading was no longer available to her. She was unable to eat and became pale and thin. When her mother asked her how she felt, all she could talk about was the pain.
Rachel’s mother researched her daughter’s symptoms on the Internet. She came across several accounts of young people who had suffered in a very similar way to Rachel. She had heard of myalgic encephalomyelitis before but she had not realised until that moment that the symptoms fitted so perfectly with those of her daughter. Rachel had ME, she was certain of it. A website for ME sufferers gave a list of recommended doctors and Rachel’s mother rang one of those listed and arranged for Rachel to see him.
This new doctor listened very intensely as Rachel described what she felt. As soon as she had finished her story he asked her about her recent trip to the States. Just before she had fallen ill Rachel had spent two weeks in Washington state, staying with cousins. When he heard this the doctor was certain that he had the answer: Rachel suffered from Lyme disease, contracted while on holiday. Lyme disease is an infectious agent transmitted through insect bites and is common in parts of the US. The doctor suggested that he take some blood and look for evidence of infection. Since the result of the test could take weeks, he also suggested starting Rachel on antibiotics in the meantime.
One week after starting the antibiotics Rachel could not believe the improvement. Her energy levels doubled and she felt well enough to take a daily walk. She began to eat normally and put on weight. Suddenly she could foresee a return to her beloved dancing.
When Rachel went back to see the doctor for her results she was shocked to discover that the test for Lyme disease had come back negative.
‘Not to worry,’ the doctor said, ‘the test is not positive in everybody and the improvement with antibiotics is proof enough that the diagnosis is right.’
Rachel completed the course of antibiotics and negotiated with her college to allow her to re-enter the class she had left. Her good records from the time before she fell ill stood her in good stead. However, as soon as Rachel tried to return to class her pains and tiredness returned. She thought she must have tried to do too much too soon. She saw her specialist again and he suggested a second course of antibiotics, and then a third. This time there was no improvement. Once again, she had to leave college and move back to her parents’ home.
Next the doctor told her that while the infectious organism causing Lyme disease had probably been cleared from her body, she was now suffering from a complication of the disease in the form of chronic fatigue syndrome. He suggested a variety of painkillers and a meeting with a physiotherapist. Nothing worked. Rachel deteriorated and became housebound. Her poor concentration made it impossible for her to enjoy even normal pursuits. She could not follow the plot of a television programme. When the principal of her college rang to ask if they could expect her to return that year, Rachel and her family finally admitted to themselves that it would not happen. It was agreed that if she improved she could resit the same class the following year. Rachel now had four months to get better.
Her parents took her to another rheumatologist. He did not agree with the diagnosis of Lyme disease and told her that he thought she was depressed.
‘Of course I’m depressed, I told him, I haven’t been able to do anything but lie on the sofa for months. That shut him up.’
He suggested that Rachel take an antidepressant and see a psychologist, but she refused.
Over the next three months Rachel suffered setback after setback. Every good day filled with hope was followed by a day full of despair. Soon she was sleeping for sixteen hours a day. Her parents converted the dining room into a bedroom for her so that she did not have to take the stairs. They bought a wheelchair so that they could take her out of the house occasionally.
‘We had to do everything for ourselves. If we didn’t buy that wheelchair that poor girl would have been stuck indoors for months,’ her father said.
Two weeks before the new academic year was due to begin Rachel’s father phoned her college and told them that Rachel would not be coming back.
Unable to continue paying for private treatment they asked their doctor to refer her to another rheumatologist on the NHS. Over the next six months Rachel saw two rheumatologists, an immunologist and another neurologist. She was again told by one that she was depressed. Another said she had fibromyalgia and prescribed painkillers and an antidepressant.
‘Is that the only treatment you doctors have heard of?’ her father asked rhetorically as the family recounted the story.
When Rachel finally agreed to an assessment by a psychologist the report came back saying that, if the test result was to be believed, she had the mental capacity of a six-year-old.
‘They mean you didn’t even try,’ the doctor who had ordered the test told her.
‘If you think that’s bad,’ Rachel said, ‘one doctor told me all I needed was a holiday. Or a boyfriend!’
Her parents turned to the Internet again for help and found the name of another doctor who ran a specialist clinic for ME sufferers. Her GP agreed to make the referral and when Rachel turned up to the appointment she was heartened to find herself sitting in a waiting room alongside a group of other people who she could tell felt as she did. She fell into conversation with a girl sitting beside her and when she heard the girl’s story it was the same as hers.
‘One doctor told me to go for a jog and I’d feel much better,’ the girl said and Rachel laughed for the first time in months.
Meeting the specialist Rachel felt that she might finally be making some progress. He listened carefully to everything she said. He had read through all her old notes and seemed to grasp what she was telling him.
‘He seemed to believe me. I was finally believed.’
The doctor suggested that she be admitted to hospital. He would review all her test results and repeat anything that was necessary and together they would consider her treatment options.
‘Leaving that clinic that day I felt better than I’d felt all year. He really meant to help me, I could feel it,’ Rachel said. ‘He fooled me.’
‘He fooled us all, sweetheart,’ said Rachel’s mother as she took Rachel’s hand in her own.
Rachel’s admission date soon came around. Her first inkling that something was not right came before she had even reached the ward. Her mother was with her and when they arrived at the main entrance of the hospital they stopped at the reception to get directions. The man behind the desk told her to follow the orange line on the floor and to look out for signs for the psychiatric hospital. Seeing the expression on Rachel’s face her mother said, ‘Don’t panic. He just means that ward is beside the psychiatric hospital.’ Even as she said it she prayed that she was right.
Five minutes later Rachel and her mother found themselves outside a locked door leading into a psychiatric unit. Both women were furious. Rachel would have turned and left immediately but her mother insisted that they go in and find somebody who could tell them ‘what the bloody hell was going on’. After pressing the buzzer and being admitted to the ward Rachel’s mother asked to speak to somebody in charge. An exchange followed in which both women made it quite clear how they felt about being ‘tricked’. An experienced senior staff nurse assured them that while this ward was ‘technically’ part of the psychiatric hospital, the section of the ward where Rachel would be based was solely occupied by those suffering from chronic fatigue syndrome and related disorders. Rachel was not in the least pleased with the explanation, but with so few options available to her she agreed to stay for one night.
The first night in hospital was not as bad as Rachel had feared. She was sharing a room with three others, all girls her age and all of whom had been diagnosed with ME. Meeting people who understood how she felt helped Rachel, although it was a mixed blessing in some ways. One girl was so severely disabled that she had not walked for five years. Another seemed almost unaffected to Rachel’s eyes. She watched that girl leap from her bed and run to the bathroom without any clear evidence of difficulty. Rachel could not quite decide which upset her more.
The following day she had a meeting with her doctor and her first question was why she was on a psychiatry ward.
‘This is a psychiatry-led service, Rachel. I thought you knew that.’
‘Are you a psychiatrist?’
‘Yes, I am.’
‘You should have told me.’
‘I’m sorry, I assumed you were aware of that when we met. Maybe it would help if I told you that this is a specialist service for people who have ME. It is not intended as a primarily psychiatric intervention. It is a programme to treat the physical disabilities caused by ME.’
‘I’m not insane.’
‘Nobody here thinks you are.’
Rachel was just about persuaded to stay.
The next day Rachel tried her hardest to engage in the treatment that was scheduled for her. She saw the physiotherapist who did a detailed assessment and gave her a programme of graded exercise. She was also seen by an occupational therapist who asked her about her plans for the future.
‘If we could put this illness behind you what would you do?’
‘I’d be me again. Rachel the dancer, not Rachel the wheelchair-bound cripple.’
‘And if it takes a while to get there and we can only hope to meet small goals, one at a time, building upwards – what then?’
‘I’d like to be able to walk from my bedroom to the bathroom without feeling drained.’
‘Okay, let’s start there.’
Rachel also had a reluctant meeting with a psychologist. She had not fully recovered from the results of the last psychologist report. She was relieved to find that this psychologist was different. She didn’t bombard her with questions but listened while Rachel talked.
When Rachel’s mother phoned her that evening she felt relieved to hear her daughter sounding optimistic. The next night’s phone call was not so positive. On the first day of her exercise programme Rachel had fallen out with the physiotherapist. Having agreed to at least try the exercises, Rachel found she just couldn’t do it.
‘She kept saying, you can do it, don’t give up, keep going, as if I wasn’t doing the exercise by choice. I just didn’t have the strength and she just wouldn’t listen.’
Rachel managed four days in the unit. On the fifth day she was sitting in the shared lounge when another patient became acutely distressed. She crouched in the corner and started screaming following a disagreement with a member of staff. Rachel rang her mother that evening and asked to be collected. The consultant was called to see her before she went home.
‘He thought he could talk me into staying. What’s the policy of this unit anyway, I said to him, bully people better? I should never have been admitted to that ward.’
It was now one year later and as I listened to Rachel’s story I felt sympathy for how difficult her life had been and how little progress she had made, but at the same time I wondered what she hoped I would do differently. With this thought in my mind I asked Rachel if she could transfer from her wheelchair to the couch to be examined.
Almost as soon as I had made the request I could see that Rachel would not be able to do what I had asked. Even with the support of both me and her father she could not bear enough of her own weight to get up on the couch. This was not an unusual situation in a general neurology clinic where many people are immobile for different reasons. Usually I examine people on the couch if they can make it there, otherwise I examine people sitting in their chair. But in Rachel’s case she simply would not be dissuaded from trying. It was a vivid display. Every sinew of her body strained with the effort. All of us in the room tensed in preparation to catch her if she fell. I wondered if it was possible that Rachel needed me to share her experience of the impossible task I had set her. Perhaps she felt she had not convinced me yet. I reminded myself that exaggerating to convince is not the same as exaggerating to fool. Some cries for help are louder than others if they have previously gone unheard.
Eventually Rachel relented. As I examined her in her chair I asked, ‘Do you agree with the diagnosis of chronic fatigue syndrome?’ Doctors are just like their patients. It is in the casual gaps between formal questions that the truth of what we want to know can be found. I was looking for a way in, but I was about to learn that I had got it wrong.
‘No,’ she said firmly. ‘Have you even been listening? I don’t have chronic fatigue syndrome, I have ME. Fatigue is something that everybody gets. The word is an insult. Fatigue happens if you go to bed late or exercise too much. You rest and then you feel better. I’m not tired. What I feel is nothing like fatigue. I feel like somebody has literally drained all the life out of me. Death would be an improvement compared to how I feel. I do not have chronic fatigue syndrome, I have ME!’
‘ME, you’re right, I’m sorry.’
‘Can’t you see how bad things are for me?’ she said.
For everything she had told me and all she had done to convince me, I had left Rachel feeling that she had not done enough.
‘I guarantee you, Rachel, that I am in no doubt about how bad things are for you. What I’m not certain about is how I can help you. I have looked through your test results and listened to what has happened to you and I agree with the diagnosis of ME. I’m not convinced that any more tests will make a difference.’
‘I don’t want any more tests. I want treatment. I have heard that interferons used to treat people with multiple sclerosis can help people with ME. I want you to prescribe them for me.’
‘I’m really sorry, Rachel, but the treatment you are talking about is very dangerous and it isn’t licensed for use in ME. There is no way that I can put you forward for it.’
‘It doesn’t matter how dangerous you think it is. I’m the one who is taking the risk, not you.’ Rachel was pulling a newspaper and a number of magazines from her bag, a new vigour to her movement.
‘You’ve seen how disabled Rachel is. You say you believe her. If you do then you know she has nothing to lose,’ her father added. Her mother sat to one side, a handkerchief held to her face.
‘I’m sorry. I have no say in this at all.’
‘You mean the health service won’t pay the money for the drug,’ her father said angrily.
‘I could just go to America and pay for it,’ Rachel said, ‘but I shouldn’t have to do that. I should be able to get treatment here.’
‘Interferons are not licensed for use in ME in any country. I’m sorry.’
Rachel thinks I have access to a treatment but I am withholding it. Or that she is a victim of a health service that is short of funds. But it is not a question of money or what the NHS can or cannot provide. A quarter of a million people in the UK and at least 2 million people in the States have ME (or chronic fatigue syndrome, as it is also known). To a certain degree each of those people will be at the mercy of the doctor they see; some will be dismissed, some will undergo inappropriate investigations, some will be prescribed antidepressant drugs and others will be referred for alternative therapies. It is possible that those seen by private doctors or alternative medical practitioners, in any country, might find themselves more likely to be offered unnecessary tests and unproven therapies. On his website one private doctor makes the uninterpretable claim that he treats ME by altering the patient’s ‘biological terrain’, others offer magnesium injections or vitamin supplements. These are placebos at best, or evidence of profiteering at worst. But beyond the variations in practice of individual doctors there is no difference in the treatment of ME between developed countries, and Rachel will not be prescribed immune-modulating therapies no matter where she goes.
Having said that, sometimes patients persuade doctors to do things that are against their best judgement. I may not be able to make Rachel better, but I could possibly protect her from the danger of other inappropriate treatments and investigations. But Rachel had strong views about her illness and about how she wanted to proceed and they were hard to counter.
‘Do you even believe that there are serious immune problems in people who suffer with ME?’ she asked.
‘I believe that ME is a serious disabling illness that nobody has yet fully explained.’
‘That’s a no,’ Rachel’s father said and turned to her. ‘We’re wasting our time once again.’
Rachel’s mother let out a gasping sob that spoke for everybody in the room. We all felt the despair of a difficult road with nothing worthwhile to reward us at the end. Rachel was climbing a hill and every time she thought she had made it to the top she discovered she had not. I worried that Rachel would never reach her destination because that place does not exist. People have searched for it for centuries.
Chronic fatigue syndrome (CFS) has been subject to many explanations and has been given many different names. Its nineteenth-century ancestor was called neurasthenia. Neurasthenia was a syndrome with a long list of symptoms, many of which are very familiar; chronic fatigue, nerve pain, joint pain, depression, difficulty sleeping, anxiety, impotence, headache. A very particular feature was that the sufferers were not refreshed by sleep although many slept for most of every day. Patients exhibited a very extreme form of exhaustion although no physical weakness could be found in the limbs to explain it. The fullest early descriptions of the condition were given in 1869 by George Beard, a prominent American physician. Beard championed neurasthenia as an organic disease, imagining some depletion of resources in the peripheral nerves or brain as a result of overuse. Neurasthenia struck down the successful and the intellectual almost as if they had quite literally exhausted the nervous system through excessive use of their higher faculties. It was a modern illness attributable to the fast pace of life in the latter half of the nineteenth century. Here was an illness that victimised the elite.
Neurasthenia had much in common with hysteria. Both were defined by medically unexplained symptoms that led to disability but not to death. They came with no objective evidence for disease. But neurasthenia also had one feature all its own. Whereas hysteria was viewed, rightly or wrongly, as an illness mostly of women, neurasthenia was an illness that predominantly, although not exclusively, affected men. And nerve exhaustion would prove more robust than its sister hysteria. When the doctors in Europe who had championed hysteria began to disappear, neurasthenia grasped the opportunity to take over the world. By the early twentieth century neurasthenia had become the ‘maladie à la mode’ in Paris, while in Harley Street it became one of the most frequently offered diagnoses.
With this new diagnosis came the possibility of new treatments. The most famous, or infamous, treatment was the Weir Mitchell rest cure. Developed by a neurologist based in Philadelphia, it subjected the neurasthenia sufferer to an unnatural sort of rest, in which they could not move, read, have a conversation, nor be subjected to stimulation of any kind. Patients were not allowed to stand and had to use the bedpan lying down. Extreme rest was combined with force-feeding with fatty foods and took place continuously over months. Many doctors made their fortune from this sort of ‘cure’.
In time, however, neurasthenia would follow the trajectory of Charcot’s hysteria. As more became understood about the physiology of the nervous system the idea of a finite energy source depleted by overuse was no longer viable. It also became obvious that the Weir Mitchell rest cure was as ineffective as it was costly. But the thing that cast neurasthenia most fervently in a new light was the dawning realisation that members of the lower orders, and even women, were just as likely to be affected as were rich and successful men. This flew in the face of all that was understood about nerve exhaustion reportedly brought on by excessive use of a superior intellect. The neurologists who had fought so hard for possession of the illness soon abandoned it with just as much fervour. Once the label had been rejected by the rich and successful, it was rejected by all society.
Neurasthenia became less prominent as a diagnosis although it did not disappear completely until at least the second half of the twentieth century. It still lurked in neurologists’ offices, sometimes offered as an organic disease and other times as a polite alternative to depression. Fatigue did not disappear, of course, it was just reclassified. Some neurasthenic patients gained the label of melancholics, others had their symptoms attributed to infections or use of chemicals or one of a host of different physical complaints.
By the mid twentieth century the concept of a syndrome defined by fatigue had faded from doctors’ arsenal of diagnoses. It would take a series of seemingly unrelated events occurring in different parts of the world to see chronic fatigue re-emerge with all the old controversies intact.
In 1955 in north London a mystery illness swept through the patients at the Royal Free Hospital. Soon the illness spread to the nurses and doctors. Over 200 people were struck down and the hospital was forced to close for two months. Patients presented with a flu-like illness followed by muscle aches, tiredness, headaches and memory lapses. The clinical features of the illness suggested to doctors that their patients were suffering from some unexplained inflammation of the brain and nerves. The term myalgic encephalomyelitis was applied. No cause was identified and no one died. This outbreak was the origin of the label ME.
Following on from this epidemic similar cases began to appear individually or in smaller numbers elsewhere. Scientists investigated a variety of different viruses and other organisms in an attempt to find an explanation. Every now and then, over many years, in an explosion of excitement, a new cause was found. Each was quickly disproved.
Then, in Incline Village, Nevada, in 1984, the Centre for Disease Control was called as 120 people out of a population of 6,000 fell ill with a mystery disease. No two patients were identical. Each had their own mix of symptoms, many included dizziness, numbness, aching joints, tiredness. At first there was no explanation, but then, after exhaustive tests, it was discovered that a large percentage had antibodies in their blood that suggested exposure to Epstein–Barr virus (EBV). A link had been created between chronic fatigue and EBV that would last to the present day. The fact that the majority of most adult populations do not suffer chronic fatigue but will have been exposed to EBV at some point in their lives, and therefore will also carry an antibody to the virus, did not deflate the enthusiastic investigators in the least.
The 1980s was the era in which chronic fatigue became chronic fatigue syndrome. A veritable outbreak occurred. Newspapers and television shows blossomed with evocative stories about the disease that doctors didn’t understand. People who had suffered for years found an explanation, if not a solution. And the old neurasthenia debate began in earnest once again: was it even a real illness?
Chronic fatigue syndrome is defined in the simplest terms as an overwhelming fatigue that has been present for at least six months, is disabling, and where there is no psychiatric illness or other physical disease to explain it. ME is synonymous with chronic fatigue syndrome, and is the term favoured by some sufferers, particularly in the UK. To include ME/CFS in a book primarily concerned with the description of those suffering with psychosomatic illness is foolhardy to say the least. A fierce argument has raged for decades between those who consider this to be a purely organic disorder and those who view it as psychologically driven.
It is tempting to be obtuse at this point, to hide my opinion on the matter amongst the opinions of others. This is a very contentious issue whatever stance one takes. One of the foremost experts in CFS in the UK is reported to have received regular death threats for his position on the disorder. He is responsible for the largest number of scientific studies into CFS and yet he is accused of discouraging research in the area. He devised the most effective treatment programme for sufferers and at the same time he has been vilified for encouraging neglect of patients and leaving them to die. He is the person in the UK who has taken this illness the most seriously and who has devoted much of his career to solving the riddle, and yet he is accused of quite the opposite. His sin is that he is a psychiatrist and that he has emphasised the importance of the psychological mechanisms in the development and perpetuation of the chronic fatigue symptoms.
I will not be obtuse. I believe that psychological factors and behavioural issues, if they are not the entire cause, at the very least contribute in a significant way to prolonging the disability that occurs in chronic fatigue syndrome. Do I know that for sure? No, nobody does; but I am influenced by the lack of evidence for an organic disease. ME/CFS sufferers do not usually have any objective physical findings to explain their fatigue. They have been likened to those who had multiple sclerosis before that disease was properly understood. Their plight has also been likened to those victims of AIDS who died before the virus causing it was discovered. But even before the plaques of inflammation that are responsible for damaging the nerve cells were found in the brain to explain MS there was objective evidence of neurological deterioration to confirm the physical nature of the disease. Even before HIV was discovered as the cause of AIDS there were multiple blood test and other abnormalities that left no doubt as to the physical basis for the disease.
There is always much concern amongst ME/CFS sufferers that their condition simply hasn’t been found yet. Doctors have the same worry, that they have missed something. In fact long-term follow-up studies of ME/CFS patients show that if the original diagnosis was made in a sound manner in the first instance, it would be exceptionally unusual for an organic diagnosis to emerge at a later date. The same studies also show that full recovery from the syndrome is very rare. The illness usually continues unabated but no evidence for an organic illness is ever found.
The World Health Organization classifies ME/CFS as a neurological disorder. To a neurologist this is more of a practical classification than an indication that ME/CFS is a neurological disease. In truth the term myalgic encephalomyelitis has been alienating to neurologists. Encephalomyelitis in its literal interpretation means inflammation of the brain and spinal cord. It is a condition seen by neurologists regularly, either caused by viral infections or autoimmune disease. Affected patients are often morbidly ill and confined to intensive care units. Absolute evidence for the presence of that inflammation is seen on scans, in the spinal fluid and on blood tests. It is often a fatal disease. There is no evidence for inflammation of either the brain or spinal cord in ME/CFS sufferers and the misnomer creates a barrier between neurologists and those with ME/CFS. Nor has there been any convincing evidence for a muscle or nerve disease as a cause. Most neurologists therefore do not see ME/CFS sufferers. It is not that they do not believe in the validity of the patient’s suffering, but rather that they do not believe that they can help. In my early years training in neurology I encountered many patients with CFS, but more recently neurologists have distanced themselves from this disorder and patients are more likely to seek help from immunologists or endocrinologists. I do not currently see patients for the purpose of diagnosing or treating ME/CFS, but many of my patients with dissociative seizures have a history of ME/CFS and there is something very interesting in that fact alone.
Many ME/CFS sufferers cite evidence from scientific publications that they believe supports an organic cause for the illness. Indeed a variety of scientific studies have demonstrated reproducible anomalies in a range of different investigations carried out in CFS. Several viral infections have been implicated in the cause. There is certainly evidence that ME/CFS can be precipitated by exposure to an infecting agent, but once the infection has cleared there is no way of explaining how the syndrome of chronic fatigue develops, except perhaps to consider the psychological vulnerability of those affected and their behavioural response to the original illness.
A number of studies have shown irregularities in the immune system of those with ME. But the research is contradictory and the findings are not consistent amongst sufferers and therefore do not provide a coherent explanation for the symptoms they are said to produce. More recently scientists have become interested in the hypothalamic-pituitary-adrenal (HPA) axis which, as we’ve seen, helps control our response to stress. In ME/CFS sufferers it has been shown that there is dysfunction in this pathway, so perhaps sufferers cannot mount a sufficient hormonal response to stress when it is required of them. This might explain why stressful events, either psychological or physical, can trigger the illness and why those affected cannot recover when faced with stress. But again there is controversy, not all studies agree, and not every patient shows a hormonal abnormality.
No single scientific study provides either an absolute explanation or a diagnostic test for ME/CFS, but what they all do is confirm the physical reality of the illness, that systems of the body are not functioning as they should. They are evidence that even if the cause is psychological, the symptoms are not imagined.
So is it a somatisation disorder? ME/CFS is an illness in its own right that has not traditionally been referred to as a somatisation disorder, but that is not to say that it does not share common ground with psychosomatic disorders. It manifests as multiple medically unexplained symptoms. Sufferers of both disorders carry similar behaviours and illness beliefs and neither leads to evidence of organic disease however long you wait. ME sufferers also have many characteristics belonging to the diagnostic features of depression. Depression can manifest as tiredness and difficulty sleeping, for example.
And of course ME/CFS and psychosomatic disorders are linked by the same overarching question: are they real? Ask the 250,000 ME/CFS sufferers in the UK that question. Their lives are devastated by this illness. The reality of how life-destroying this problem is cannot be argued with. The question that we, the unaffected, must answer for ourselves is, can we give a disability that has its roots in behavioural or psychological factors the same respect that we offer to a physical disease? If the answer is yes, then none of the other controversies matter any longer.
It is important to recognise that ME/CFS sufferers have good reason to be defensive of their diagnosis. Many medical staff and lay people do not see this illness as either psychological or organic. Many people consider ME to be a non-illness, more a personality flaw than a medical complaint. Although CFS is not common many of us will have encountered someone in our lives who is affected and in those encounters I suspect some of us have had moments of cynicism.
So Rachel rails against the attitudes of others, and why shouldn’t she when there is so much judgement about? But at the same time the strength of the defence that people mount against a psychological paradigm for this illness can be a problem. Sometimes, the more strongly something human and ordinary like sadness or stress are denied, the doctor becomes suspicious of subterfuge or of something being hidden. I have heard it often from my own patients: ‘I had the most wonderful life until I fell ill, I hardly ever had a reason to feel stress.’ And I think, how could that be? I have not had a day in my life with no stress at all. And my patients who have a diagnosis of an organic disease, such as epilepsy, are very open in their admission about how stress affects their illness. Stress makes everything worse – epilepsy, diabetes, asthma, migraine, and psoriasis are all exacerbated by it. So why would that not be the case for somatising disorders or CFS? In the absolute rejection of stress in these sufferers is there something for us to learn? It’s possible that many patients worry that if they admit to any hardship in their lives then the doctor will latch on to that as the culprit for their illness and lose the ability to keep an open mind. Or perhaps it is not that simple. People with conversion disorders are often recognised to be alexithymic, which is a loss of the ability to interpret your own emotional state. Ask somebody with dissociative seizures how they feel, and you may get the answer ‘tired’ or ‘cold’ – neither answer contains anything of their emotional state. Perhaps those who deny stress do so because they do not feel stress, having converted it to something else.
Fortunately ME/CFS is not a common illness. Somatic symptom disorder by its strictest definition is also rare. The motor manifestations of a conversion disorder such as paralysis and convulsions will only ever affect a modest number of us. Those illnesses are the dramatic and sometimes bizarre end of a spectrum, but at the other end of that spectrum lies a more pedestrian set of somatic symptoms that many of us will experience many times in our lives. Somatic symptom disorder affects one in a hundred, but transient somatic symptoms resulting in illness without long-term disability affects one in four of the population.
A large percentage of people attending gastroenterology clinics have recurrent abdominal pain where no bowel disease is found. Irritable bowel syndrome (IBS) is a common explanation. Like CFS it is poorly understood and a psychological mechanism for it is not always easily accepted by the sufferers. But there is a close relationship between the presence of psychological distress and IBS, even if it is not the absolute cause. IBS sufferers often have a range of other somatic symptoms. They have a higher incidence of ME/CFS, they have a higher rate of illness in childhood, and a higher rate of attendances at their doctor’s surgery. Many of the patients that I see with conversion disorders, particularly those with dissociative seizures, have a previous diagnosis of IBS, and that association once again gives me pause to think. And like ME/CFS patients, those with IBS have a very high rate of depression and anxiety.
Fatigue may be common, but pain is the commonest psychosomatic symptom and it is represented in every sort of hospital clinic. In the rheumatology clinic, joint and muscle pain that cannot be explained are seen frequently. Fibromyalgia is one disorder fairly often seen there. It presents as widespread muscle pain and is diagnosed when there is evidence of pain in eleven out of eighteen potential tender points. Fatigue is also a ubiquitous feature. Fibromyalgia has so much in common with ME/CFS that many doctors now consider the two disorders to be manifestations of the same illness.
Pain comes to the neurologist as headache. Chronic headaches are increasingly called chronic migraine, with old names like tension headache falling out of favour. And yet antidepressants, psychological intervention and relaxation exercises remain standard in the treatment – which is telling in itself. Chronic headache comes with mood disturbance and with all of the common features of ME/CFS and IBS.
Every sort of clinic is equally represented with potential somatic disorders presenting as pain. In the cardiology clinic there is non-cardiac chest pain. In the gynaecology clinic there is pelvic and abdominal pain. In the urology clinic there is pain passing urine. But while pain is the commonest somatic symptom it is far from the only one. Respiratory physicians see patients with unexplained shortness of breath. Dermatologists see itching and rashes that quickly come and go. Ophthalmologists see people with blurring of vision, ENT doctors see people with hearing loss. ME/CFS by its fullest definition is not very common, but chronic fatigue not fulfilling the criteria for CFS accounts for one in ten consultations with a family doctor. Dissociative seizures are rare in the wider community but one in five people who go to an epilepsy clinic transpire to have dissociative seizures rather than epilepsy. Thirty per cent who go to a rheumatology clinic suffer with pain for which medicine cannot account. Fifty per cent of those who go to a general medical clinic have symptoms that cannot be explained. Sixty per cent of women who go to see a gynaecologist have symptoms for which no cause is found. The impact of our emotional well-being on our health is not a trifling problem. I only wish I could convince Rachel of this.
Samuel Johnson said that the chains of habit are too weak to be felt until they are too strong to be broken. There are ways to help Rachel but she must be willing to give something up and to change some patterns of behaviour. So I tell her that although we differ on some points, there is one thing about which we are both in absolute agreement: that she is getting worse instead of better.
She says, yes.
‘If we agree on that, then can we agree that your current way of managing your fatigue is not helping?’
‘Yes.’
‘And if that is the case then what is there to lose by trying a different way?’
‘It depends what it is.’
I could not persuade Rachel to consider anything but medication to treat her fatigue. The only treatment proven to offer at least some benefit to those with ME/CFS is a graded exercise programme and cognitive behavioural therapy (CBT). And Rachel was quite right, CBT is no magic bullet, it is hard work, it doesn’t help everybody and she had tried it before. I reminded her that if somebody with diabetes doesn’t get better with their first tablet, they don’t abandon the treatment, they try a higher dose. If someone with asthma does not get better with one inhaler, they try a second. ME/CFS is no different to that, some people get better with one course of treatment and some people need a second. Rachel would not be moved. As we talked I was aware that she didn’t really want a better treatment, she wanted a better diagnosis. And why shouldn’t she? ME/CFS is a disabling illness, the treatment is laborious and slow, the outcome is often poor and for all of that, outside her family, she would get very little understanding or sympathy.
The diagnostic label that a doctor offers the patient has many implications. With a diagnosis comes treatment and prognosis. ‘You have gastroenteritis. Take this tablet and you should be better within one week. Most people recover and the problem is not usually recurrent.’ Once you know what’s wrong you can convey it to friends and colleagues. You know what to expect next and when you might recover. A label validates our suffering, both to ourselves and others. If I have a cough and a runny nose and I tell people I’m suffering with a cold, I am saying I don’t feel great but neither is it all that bad. But, with no evidence except how I feel, I might instead choose to tell people I have the flu. I have elevated my suffering. But what if I take the word ‘flu’ and add a prefix, ‘man-flu’? The entire illness has been transformed again.
Neurasthenia, hysteria, melancholia, depression, chronic fatigue syndrome, chronic fatigue immune dysfunction syndrome, myalgic encephalomyelitis, yuppie flu: all these labels impact upon how a patient receives their diagnosis, how they move forward and also how they are received by the world. If you have been housebound for a year, have lost your job and your relationship has broken down, it’s not hard to understand that the label ‘yuppie flu’ does not encapsulate the experience. I see this in my clinic regularly when I tell a patient that their seizures are not due to epilepsy. In my early years as a consultant I often called dissociative seizures by another common name, psychogenic non-epileptic attacks. Using that label I had many conversations that went something like this:
‘The seizures you have are called psychogenic non-epileptic seizures.’
‘So now I’m a psycho, am I?’
‘You know that’s not what I mean.’
‘What do I tell my employer?’
‘Tell them you have seizures. You don’t have to go into the specifics.’
‘They’ll want a medical report.’
‘I will word the report carefully and anything you want to keep confidential, you can.’
Then the patient would meet the psychiatrist before we met again.
‘He told me the proper name for the seizures is dissociative seizures. Why didn’t you just tell me that?’
The naming of dissociative seizures has changed several times in the years since I qualified as a doctor. For a very long time they were referred to as ‘pseudoseizures’. ‘Pseudo’: something that is pretending to be something it is not. How do you give that diagnosis to your loved one or your boss? Now ‘non-epileptic attacks’ is commonly used. In my experience that label says a lot about what is not wrong and so little about what is that patients walk away feeling that they have been given no diagnosis at all.
For many years I had a preference for the term ‘psychogenic non-epileptic seizures’. It acknowledges the seizures and the psychological factors that might act as a trigger. If a patient can accept the psychogenic component of the illness they are far more likely to recover fully. But more recently I have come to see that sometimes the use of the word ‘psychogenic’ is presumptive and exposing. So now I do say, you have dissociative seizures. It is a diagnostic label that is descriptive rather than demeaning or judgemental. And yet, when I use this term I have a lingering concern. The name shields patients from the judgement of others but does it also allow a person to hide something from themselves? While psychiatrists and neurologists understand the term dissociative, most people do not and it could inadvertently strengthen the conviction that a disease is physical in origin. That can preserve dignity in the face of suffering, but the more completely somebody has denied the psychiatric diagnosis and imagined a particular physical paradigm to explain an illness, the more prolonged that illness becomes.
Maybe it is time to stop changing the labels and start changing the attitudes to psychological illness instead.
Hypochondriac is another common label applied to people whose symptoms are medically unexplained.
Daniel was twenty-three years old. He was generally fit and well. He had never had any significant illness. He came to see me because he had headaches. He described them as a small twinge of pain in the back of his head, ‘like something burrowing under my skull’. The headache was not severe enough to require painkillers, nor severe enough to stop him doing normal things, but it was worrying him. An acquaintance had died suddenly of a brain haemorrhage.
I had listened to all of Daniel’s story and the headache he described did not have any of the features of a brain haemorrhage.
‘If it’s not a haemorrhage, could it be a brain tumour?’
Again, very unlikely.
‘I think this is a very benign sort of headache, Daniel. Why don’t you try waiting a couple of weeks, look after yourself, drink water, avoid alcohol, do some exercise and it will probably be gone before you know it.’
‘I do believe it’s nothing serious but I would believe it more if you did a brain scan.’
‘I don’t think you need a scan, Daniel.’
‘It will make me feel better.’
What Daniel didn’t know was that it could well make him feel worse. There is a terribly delicate balance in the investigation of benign-sounding symptoms. One must investigate to rule out a physical cause if it seems necessary, but the line where investigations should be stopped is drawn very faintly. Primum non nocere. First, do no harm. If you investigate and find something incidental, what do you do? And when do you say no more tests?
Whenever I am faced with these dilemmas I think of a patient I once had called Eleanor. She had a diagnosis of epilepsy but epilepsy was not the illness she started with. Since her teen years Eleanor had suffered many unexplained medical complaints. She had numerous tests, none of which had ever shown an abnormality. Then, after years of chronic pain in her back and in her joints, Eleanor began to complain of headaches. Her GP referred her to a neurologist and she was told that her headaches were nothing serious. Her GP advised some lifestyle changes. But Eleanor just could not shake the idea that her headaches had a sinister cause. The neurologist agreed to arrange a scan to give Eleanor some peace of mind. It was not successful. The scan did not show a brain tumour, but it did show a five-millimetre aneurysm, an area of weakness in the wall of a blood vessel which was like a small balloon. Eleanor’s anxiety levels were higher than ever.
The type of headache that Eleanor described could not be caused by the aneurysm so this was an incidental finding. It was likely that the aneurysm had been present for many years and Eleanor could have lived happily for a lifetime without ever knowing that she had it. But now she did know.
If an aneurysm bursts it causes a brain haemorrhage, but not every aneurysm will burst. In up to five per cent of autopsies of people who have died for other reasons, an incidental unruptured asymptomatic aneurysm is found. There was no reason to believe that Eleanor’s aneurysm had ever bled, so treatment was not automatically recommended. But Eleanor could not live with the sense of this time bomb in her head, waiting to explode. Therefore she chose to have treatment.
Eleanor was taken to the X-ray department and given an anaesthetic. Once she was asleep, the radiologist passed a catheter into Eleanor’s groin and threaded it up through the blood vessels of her abdomen and into the blood vessels of her brain. The radiologist could follow the progress of the catheter on an X-ray projection. He placed the tip of the tubing into the mouth of the aneurysm. He began to inject. He was going to fill the aneurysm with a platinum coil so that it was rendered harmless. The procedure did not go well. It caused the aneurysm to burst. Eleanor had a serious haemorrhagic stroke from which she never fully recovered. She was paralysed down one side and suffered with epileptic seizures from then on.
No one will ever know if, without the treatment, the aneurysm would have ruptured anyway at some point in the future. Or if, without the scan, Eleanor would have lived all her life happily without ever knowing it was there.
MRI scans are such sophisticated and sensitive ways of imaging the body that it is not unusual for them to pick up incidental findings that do not necessarily cause illness. We are as different on the inside as we are on the outside. Sometimes, for example, scans detect small cysts that have been present since birth and are entirely harmless. But if you have a brain scan for reassurance and such a cyst is found, will you feel better or worse?
Many investigation results are misinterpreted by doctors. Lyme disease, one of Rachel’s diagnoses, is another very good example of this. Lyme disease is potentially a very serious disorder but a lot of doctors are very bad at interpreting the test results for it. In the United States, where this tick-borne disease is endemic in certain areas, it is a commonly over-diagnosed disorder. One study looking at patients attending a Lyme disease clinic showed that sixty per cent had been given the diagnosis in error. Each was exposed to unnecessary treatment, were led to believe they had a serious disease, and deprived of their true diagnosis and correct treatment. Lyme disease can cause many vague symptoms including pain and fatigue. In people with psychosomatic illness it can provide a more palatable explanation for their symptoms than a psychogenic explanation will.
Blood tests, X-rays, every test, comes with the same risk. Some tests are particularly difficult to interpret and therefore open to errors. To carry out a test is not a benign procedure, so I made a deal with Daniel.
‘Why don’t you give this headache time to go away naturally first. Drink more water, eat healthily, get more sleep and wait a month. If you don’t get better we can re-discuss the scan.’
As Daniel left I knew that the consultation had not gone well because he looked like a small child who had not got his way. I wondered if he would see another doctor and ask them for the scan instead. Two days later my secretary took a call. Daniel could not wait to have the scan. Could you arrange it now please? I was reluctant but, because I thought Daniel could not find peace of mind without it, I made the appointment for him. Even as I did it I wondered if I was making a mistake. The day after the scan Daniel rang to ask for the result. The scan was normal. I was as relieved as Daniel, but for different reasons.
A month later Daniel and I met again to see how he was doing. He was happy that the scan was normal but now he was wondering if there was a more sensitive type of scan he could have. The headache was no worse but he was worried that something had been missed. He pointed out a single point on the back of his head where he located the pain. He told me again that he felt something burrowing or bursting through that point of his skull. ‘I feel something pressing against my brain.’ He asked me to feel the point on his skull and I told him again that I could not feel anything out of the ordinary. As we talked, his hand reached unconsciously to the back of his head every few seconds. I assured him that the scan he had had was very sensitive and showed nothing at all to cause concern. With his agreement I referred him to the physiotherapist for relaxation exercises. As he walked out the door he was a little boy lost once again. I felt as if my words of reassurance had bounced off him. I wondered what it would have taken to make him believe me, but if I knew that I would have done it.
We met again. The pain was a little better, but still there. Daniel had done some research. He knew that high blood pressure could cause headaches so he had bought a blood pressure monitor from a local pharmacy. He had brought a detailed list of the blood pressure readings he had taken over the past week. Each day he had recorded at least thirty measurements. Some of them seemed a little high. I had to explain to Daniel that the readings were not nearly high enough to account for his headache and, besides, the sort of headache he had was very different to the sort caused by high blood pressure. Daniel accepted that his head pain was not due to hypertension but now he would like to meet a cardiologist to discuss his blood pressure.
We all do it a little – worry about the thing that might never happen – but some make a sort of habit of it and, when they do, the anticipation of illness can be so life-destroying that when the illness happens it is almost a relief. It is quite normal to be worried about your health from time to time. As a doctor I am often asked by family and friends and acquaintances to give my opinion on some ailment.
‘How long does it normally take to recover from a viral infection? Is two weeks too long?’
‘My daughter slipped and banged her head. Her head hit the floor really hard. How do I know if she’s okay?’
‘Look at this lump, what do you think it is?’
Although it is normal to seek reassurance, some people can find themselves pursuing every symptom until it is the pursuit itself rather than the symptoms that lead to an inability to function fully in the world. That is the plight of the worried well.
People who suffer with hypochondriasis, the modern term for which is health anxiety, can find themselves obsessed with their health and the anticipation of ill health so that their lives are almost taken over by it. In conversion disorders or somatic symptom disorders the disability is caused by real physical symptoms such a paralysing fatigue, weakness, convulsions and so on. Health anxiety is very different from this. There is no physical disability. The symptoms themselves may be innocuous. It is not the symptom that disables but the anxiety about the symptoms.
Unlike conversion disorders, where the patient may feel emotionally well, in hypochondriasis that is not the case, and the sufferer’s life is taken over by anxiety. Every small ache and moment of dizziness is imagined into something bigger. A habit of self-checking can develop. Does that red mark on my arm look different than it did yesterday? How many times did I go to the toilet today? Every symptom that is monitored is kept in the mind, and in doing so it is perpetuated. And every test that is ordered brings the thought of ill health to the fore.
I tried to explain to Daniel that I feared his anxiety about his health was his real problem. We had a long discussion and Daniel recognised that he was anxious. His family and friends told him he was obsessing over nothing so he had heard this view before. Daniel had already spent over six months believing in a serious cause for his headache. Nothing had been uncovered but his every waking moment had been taken up with it. I told him I was worried that he could stay trapped in this vicious cycle for years if his anxiety was not addressed and that I would like him to see a psychologist and to consider cognitive behavioural therapy. Daniel could learn to respond differently to changes that he notices in his body. He agreed to see a therapist.
Could Daniel learn to do things differently?
Consider Daniel’s usual pattern: he feels a pain in his back that he immediately suspects – no, he knows – is something very serious. He researches back pain on the Internet and is shocked by the list of possibilities. He can imagine cancer spreading through his bones. When he is in the shower he searches his body for the source of the cancer. He can’t find anything amiss but he wonders if that’s worse. Perhaps he wouldn’t be able to have chemotherapy if they don’t know where it began? He makes an urgent appointment to see his doctor. The doctor says that the back pain is nothing and that Daniel should just forget about it. Daniel does not go to football practice that evening for fear of exacerbating the problem. He tries to rest but that night he cannot sleep. Daniel waits seventy-two hours before calling his doctor again. This time the doctor agrees to arrange for an X-ray to be done. Daniel takes the X-ray request to his local hospital. On the way there he noticed that the pain had spread to a place between his shoulder blades. After he has had the X-ray he asks the radiographer if it shows anything abnormal. She said the result would be sent to his doctor. As he leaves the room he watches the radiographer looking at the picture on the computer. She is pointing at the screen; what is she pointing at? Every day for the next week Daniel phones his doctor’s office for the result. They say they don’t have it. Are they afraid to give him the news? It can’t take one week to report a normal X-ray, he thinks. While he is waiting for the result he keeps a diary of how severe the pain has become. It began as a three out of ten and now it is a six. One week later he sees his doctor again and is told that the X-ray is completely normal. ‘But that’s impossible,’ Daniel says. His GP sends him home and tells him to stop worrying. Daniel does not stop worrying. He has not yet been given a satisfactory explanation for his pain and he wants to see another doctor and to have more tests.
If Daniel learned to react differently to his symptoms the pattern might look more like this: Daniel feels a pain in his back. For a moment he is very worried but then he reminds himself that most people get aches and pains from time to time and in young people they are rarely serious, and most just disappear. He observes the pain for a moment. It’s not severe, and he reminds himself that he is otherwise well. He decides to carry on his day as normal as he has practised with the psychologist. He doesn’t search the Internet or tell his colleagues about the pain. When at work he notices the pain again and feels the familiar wave of panic, but Daniel replaces the thought with something relaxing and pleasant that he has practised with his therapist so that he can carry on with his day. When he finds himself thinking of telephoning his GP he flicks the elastic band on his wrist and it acts as a reminder that most symptoms are transient and due to nothing serious at all. Daniel has a busy day at work and for almost an hour he forgets the pain completely, but that evening it comes back. He spends half an hour meditating and feels better. His inclination is not to but he does go to football that evening as usual. He maintains his normal routine for one week and somewhere in that time the back pain has disappeared. He is not quite sure when it happened. He never knew exactly what caused the pain, but now it is gone that doesn’t seem to matter.
But of course it would not be quite as easy as that. Daniel had borne his worries about his health for many years. Before any recovery would happen more reassurance would be needed. Less than twenty-four hours after our last conversation I got another phone call. Daniel would like one more scan before he goes to see the psychologist. In a way I understood what had happened. In the cold light of day, sitting with me in my office, his normal scan pictured on the computer screen, Daniel could believe, for the moment at least, that everything was okay. But alone at night in the dark it would be a long time before he could learn to keep his anxiety at bay.