Contents
Cover
About the Book
About the Author
Dedication
Title Page
1. Tears
2. Pauline
3. Matthew
4. Shahina
5. Yvonne
6. Alice
7. Rachel
8. Camilla
9. Laughter
Acknowledgements
Index
Copyright
For E.H.
While I was convinced the woman was afflicted not by a bodily disease, but rather that some emotional trouble grieved her, it happened at that very moment I was examining her, this was confirmed. Someone coming from the theatre mentioned he had seen Pylades dancing. Indeed, at that instant, her expression and colour of her face was greatly altered. Attentive, my hand laid on the woman’s wrist and I observed her pulse was irregular, suddenly, violently agitated, which points to a troubled mind.
Galen, c. AD 150
I QUALIFIED AS a doctor in 1991. For fledgling doctors their first great dilemma comes when they are asked to choose their specialty. Some parts of the decision are easy. You either want to operate on people or you don’t. You can react quickly in an emergency or you can’t. Some want to be a scientist in a laboratory. Others would prefer to spend their time with patients. Medicine has room for every type of person. It is sometimes harder to make the more refined career decisions that follow. You know that you want to be a surgeon, but which bit do you want to operate on? Are you fascinated by the heart, where a single missed beat can put life in immediate peril? Or do you want to experience the highs and lows of the fight against cancer cells?
Despite all the possibilities, I knew from an early stage in my training what my decision would be. I wanted to be a neurologist. When I made that choice I thought I knew what it meant and where it would take me. I wanted to emulate the people I had learned from, the individuals who had inspired me. I enjoyed the detective drama of the job, unravelling the mysteries of how the nervous system communicates its messages, and learning all the things that can go wrong. Imagine a man who cannot move his right leg and cannot feel his left leg – where’s the lesion? What’s the disease? Or a woman who is otherwise well but finds she can’t write and can’t identify her fingers. Ask her to say which is the index finger and she will not get it right. What part of the brain, when damaged, causes that? Neurological disease manifests in elusive and strange ways. There is a sort of epileptic seizure that is triggered by brushing your teeth. There are strange temporary paralytic disorders that strike after eating salty food.
I started my first training post in neurology in 1995, expecting to look after people who had diseases of the brain and nerves and muscles; conditions like multiple sclerosis, stroke, migraine and epilepsy. I could not have predicted how far I would find myself drawn into the care of those whose illness originated not in the body, but in the mind.
Examples of how the mind affects the body are everywhere. Some are so commonplace that they are not regarded as anything out of the ordinary. Tears are only salt water produced by ducts in the eye. They are a physiological response to a feeling. I cry if I feel sad, but happiness can have exactly the same effect. Sometimes tears are triggered by a memory or a piece of music or a painting. They occur in response to anger or laughter. The instantaneousness of it all has always amazed me.
The body has a multitude of ways through which it can express emotion. Blushing occurs when the blood vessels of the head and neck dilate and become infused with blood. It is an instantaneous physical change seen on the surface but reflecting a feeling of embarrassment or happiness that is held inside. When it happens I can’t control it. That point is important. My blushes betray a feeling and, even when they increase my embarrassment, I cannot stop them.
Sometimes the body’s reactions are more dramatic than a brief blush or the odd tear. Even quite exaggerated bodily responses to emotion are easy to accept if the circumstances are right. In the early nineteenth century in Naples and Florence: A journey from Milan to Reggio the French novelist Stendhal described how he felt when he first encountered the great frescoes of Florence. ‘I was seized with a fierce palpitation of heart, the wellspring of life was dried up within me, and I walked with a constant fear of falling to the ground.’ Perhaps what Stendhal described seems extreme to some of us, but to others it may seem absolutely obvious that, on the day one first encounters the frescoes of Giotto, one’s legs will weaken and one’s heart will miss a beat.
There are many modern examples of the tendency to collapse in response to excitement. Think of young people fainting at pop concerts, for example. Of course, many such collapses are easily explained by the physiology of the body. A young girl is overcrowded in intense heat, her blood vessels dilate to cool her, venous pooling draws her circulation downwards away from her head and, for just a moment, her brain is deprived of oxygen, she collapses and consciousness is lost. She has fainted due to nothing more than the body’s physical response to a physical trigger.
And yet when scientists examined just this phenomenon, they demonstrated that not every swooning, swaying teenager could be accounted for in this way. In 1995 the New England Journal of Medicine published an article in which young people who had collapsed at a music concert were interviewed. Of the 400 brought to medical attention, forty were examined. Sixteen of those forty lost consciousness in a faint that was felt to be entirely explained by physical triggers – heat and dehydration leading to falling blood pressure, circulation drawn away from the brain and subsequent collapse. Others had panicked when they found themselves trapped in a crowd, leading to hyperventilation that constricted the blood vessels going to the brain and, again, a brief blackout followed. But the doctors also observed that not every collapse could be attributed to heat or dehydration or the crush of the crowd; some had occurred in the context of only one trigger: an overwhelming surge of emotion. An emotional collapse, with no physical cause to account for it.
Most of us readily accept these common phenomena. We are familiar with the shake in our hand as we pick up the pen to sign the marriage register or the bead of sweat on our brow as we stand up to give the presentation we do not want to give. These are the body’s physiological responses to stress. They serve a purpose even if that purpose is not always obvious. They belong to the impulse that made the caveman’s heart beat faster so that he could run away from the woolly mammoth. But what if this type of normal physical response to emotion ceases to work properly? After all, every function of our body that supports us can malfunction. Any cell that is alive can overgrow so that tumours form. Or they can stop growing, as with hair loss, for example. Any chemical that is produced can be overproduced, or underproduced, as happens in the overactive or underactive thyroid gland. In just the same way, sometimes the physical response of our organs to stress goes too far. When that happens, something that was normal is no longer so and illness occurs.
The word psychosomatic refers to physical symptoms that occur for psychological reasons. Tears and blushing are examples of this, but they are normal responses that do not represent illness. It is only when psychosomatic symptoms go beyond the ordinary and impair our ability to function or endanger our health that illness results. Modern society likes the idea that we can think ourselves better. When we are unwell, we tell ourselves that if we adopt a positive mental attitude, we will have a better chance of recovery. I am sure that is correct. But society has not fully woken up to the frequency with which people do the opposite – unconsciously think themselves ill. Certainly, there are several medical disorders that are already commonly associated with stress. Most of us know that stress puts our blood pressure up and makes us more vulnerable to stomach ulcers. But how many are aware of the frequency with which our emotions can produce serious disability where no physical disease of any sort exists to explain it?
Psychosomatic disorders are conditions in which a person suffers from significant physical symptoms – causing real distress and disability – out of proportion to that which can be explained by medical tests or physical examination. They are medical disorders like no others. They obey no rules. They can affect any part of the body. In one person they might cause pain. Think of the child who gets a pain in the stomach when they are being bullied at school. In someone else they might affect the heart. It is not unusual for somebody going through a period of stress to be troubled by palpitations. These sorts of symptoms are quite common but psychosomatic illness can also manifest in more extreme ways: as paralysis or convulsions or almost any sort of disability. They are disorders of the imagination restricted only by the limits of the imagination. Think now of any physical symptom and, at some time, in some person, the mind has reproduced it.
On any average day perhaps as many as a third of people who go to see their general practitioner have symptoms that are deemed medically unexplained. Of course, a medically unexplained symptom is not necessarily psychosomatic. Some of these people have transient illnesses that do not reveal themselves in common investigations. Lots of viral infections, for example, do not show up on routine tests. They come, they go, we never know exactly what they were but, once we feel better, the exact cause doesn’t really matter. Other people are clearly unwell and this is demonstrated through abnormal results of physical examinations or abnormalities on tests, but still the cause is not determined. There will always be diseases that stretch the limits of scientific knowledge. Every year scientists discover the cause for previously unexplained medical complaints, so some will get their diagnosis in time. But amongst those with unequivocal, but undiagnosed, physical symptoms is a large group in whom no disease is found because there is no disease to find. In those people the medically unexplained symptoms are present, wholly or partially, for psychological or behavioural reasons.
Psychosomatic illness is a worldwide phenomenon with little regard for any culture or system of health care. In 1997 the World Health Organization carried out a collaborative study to look at the frequency of psychosomatic symptoms in the primary care setting in fifteen cities across the world. Included were cities in the USA, Nigeria, Germany, Chile, Japan, Italy, Brazil and India. At each centre the frequency of ‘medically unexplained symptoms’ (i.e. where a psychosomatic cause is suspected) were quantified. The study showed that while the severest form of psychosomatic disorders are rare, the milder forms are not. The conclusion was that as many as twenty per cent of those attending their doctor had at least six medically unexplained symptoms, a sufficient number to significantly impair their quality of life. Interestingly, in this study, rates of medically unexplained symptoms were similar in both developing and developed countries. Differences in availability of health care did not affect the prevalence of the disorder. Sufferers in every country were high utilisers of medical services and had a high rate of disability resulting in lost work hours.
Disorders that are this common – that occur in twenty per cent of patients worldwide – must have a financial impact on the health service. This is very difficult to quantify. Those who have tried to do so have come up with some quite startling figures. In 2005 a study carried out in Boston revealed that people with a tendency to develop psychosomatic complaints cost the health care system twice as much as those who do not. These results were extrapolated to estimate the yearly cost of psychosomatic disorders in the USA – $256 billion. To put this into perspective, in 2002 diabetes, a common disease with multiple life-threatening complications, had a yearly cost of $132 billion.
Psychosomatic disorders are not neurological disorders. They belong to the fields of psychology and psychiatry. I am not a psychiatrist, I am a neurologist. At first my interest in, and exposure to, psychosomatic disorders may seem to make little sense. Until, that is, you realise that it is precisely because I am not a psychiatrist that I have come to see so many patients who suffer in this way. After all, if you collapsed or suffered a severe headache why would you ask a psychiatrist for help? Psychosomatic disorders are physical symptoms that mask emotional distress. The very nature of the physical presentation of the symptoms hides the distress at its root, so it is natural that those affected will automatically seek a medical disease to explain their suffering. They turn to medical doctors, not to psychiatrists, to provide a diagnosis. Those with abdominal pain see a gastroenterologist, those with palpitations a cardiologist, those with visual blurring an ophthalmologist, and so on. And because every type of specialist sees a different form of psychosomatic illness, and labels and treats it differently, it can be very difficult to fully appreciate the extent of the problem.
The two most common psychosomatic symptoms are fatigue and pain. They are difficult symptoms to assess because they cannot be objectively measured, they can only be described. Psychosomatic illness for a neurologist, however, will often manifest as a loss of function, such as paralysis or hearing loss. These sorts of deficits are subjectively experienced by the patient but there are ways in which they can be objectively verified and quantified, at least in part. The neurologist can fairly reliably differentiate disability due to organic physical disease from that which has a psychological cause. As a result the neurologist is faced with a diagnosis of psychosomatic illness more often than other specialists, and that is how my interest arose.
Up to one-third of people seen in an average general neurology clinic have neurological symptoms that cannot be explained and, in those people, an emotional cause is often suspected. It is very difficult for a patient to be given the news that their physical illness may have a psychological cause. It is a difficult diagnosis to understand, let alone accept. And doctors can be reluctant to offer it up, partly for fear of angering their patients but also for fear of what they might have missed. Patients often find themselves trapped in a zone between the worlds of medicine and psychiatry, with neither community taking full responsibility. Those who struggle with the diagnosis may seek the opinion of doctor after doctor in the hope of finding a different explanation – and validation of their suffering. Repeatedly normal test results begin to seem a disappointment, so desperate is the patients’ search for another answer. Some find themselves pushed into a corner where they accept the role of the undiagnosed, someone who cannot be helped, because anything is better than the humiliation of a psychological disorder. Society is judgemental about psychological illness and patients know that.
When my medical career began my own views on psychosomatic illness were little different. Compared to real illness these patients did not make the grade. My interest grew slowly, at first through gradual exposure and later more quickly when I found myself thrown in at the deep end in a new job.
Like most doctors my first experience of psychosomatic illness came when I was a medical student. When you meet the first patient who is physically ill, but with no disease to explain it, you dismiss them. You are there to learn about disease and they have nothing to teach you about that. Then you qualify and become a junior doctor and you act as a sort of triaging service. You are often on the front line, trying to make a diagnosis and then presenting it to your senior doctor for their approval. You prioritise the patient you view as the sickest. The person in the waiting room with chronic unexplained pain finds themselves at the bottom of your list. If nobody else has been able to explain the pain it is unlikely that you will. You grade illness not by how distressing the patient finds it, but by your own ideas about what constitutes a serious illness. On this matter doctor and patient do not always agree.
Once I had started my training in neurology my relationship with psychosomatic disorders began to grow. I became increasingly aware that a large number of people coming through the door of our clinic had symptoms that were more likely to be related to stress than any brain or nerve disease but I, like so many of my colleagues, saw my role as one of ruling out neurological disease. After I had done so I absolved myself of further responsibility. The rotating nature of training jobs meant that I might see a patient once and never again, so it was an easy stance to take. Good news, we have not found a brain tumour, your headache does not have a serious cause. And goodbye.
Then I met Brenda. She was unconscious that first time and for most of our meetings that followed. Brenda had come to the casualty department following several seizures. The on-call doctor had seen her and arranged for her to be admitted. We were on the ward when she arrived. Everybody stood back in fright as a trolley came speeding up the corridor towards us. Brenda had been stable in the casualty department but, as the porter transported her to the ward, her next seizure had started. The porter and the nurse who was with him had broken into a run. On the ward an oxygen mask was quickly clamped to Brenda’s face, while two nurses attempted, and failed, to roll her on to her side.The trolley had come to a stop by the nurses’ station and all the other patients and their families strained to see what was going on. A nurse appeared with a syringe filled with diazepam and handed it to me to give to Brenda. I tried to catch Brenda’s flailing arm but it kept slipping from my grasp.
Another doctor came to help and we managed to pin down the arm even as it fought against us. I slowly administered the injection. We stood back and waited for it to take effect, but nothing happened. I could feel the heat of all those eyes on my back and it was a great relief when the registrar shouted for the anaesthetist to be called. Brenda had been convulsing on and off for ten minutes by the time the intensive care team arrived; the only drug that could be given safely on the ward had been given twice and failed. The whole ward breathed a sigh as we watched the porter and anaesthetist turn Brenda’s trolley around and wheel her quickly away again.
I barely recognised Brenda when I saw her the next day. She was in the intensive care unit, intubated, her breathing under the control of a ventilator. A second tube threaded itself through her nose down into her stomach. Her eyes were closed with tape and her hair was pulled back tightly. Her seizures had not come under control so she had been put into a medically induced coma. Every time the intensive care doctor tried to withdraw the sedation and wake Brenda the seizures immediately started again. Over the next two days epilepsy drugs were given at escalating doses. In those two days Brenda became increasingly unrecognisable. Her skin became waxy and pale, her stomach dramatically distended, but her seizures were not improving.
On the fifth day we all stood around Brenda’s bed watching her. The neurology consultant had asked to be present the next time the sedation was being withdrawn. It took only ten minutes for the first signs of Brenda’s waking to show. She coughed against the breathing tube and her hands began to clutch at anything within reach.
‘Brenda, how are you feeling? You are in the hospital but everything is okay,’ the nurse squeezed Brenda’s hand.
Brenda’s eyes flickered open and she pulled at the breathing tube again.
‘Can we take it out?’ the nurse asked, but the intensive care doctor said not quite yet.
Brenda stared into the eyes of the nurse, recognising immediately the kindest person in the room. She coughed and tears began to run down her face.
‘You’ve had a seizure but you are perfectly fine now.’
Brenda’s left leg was beginning to shake.
‘The seizure is starting again. Should we re-sedate?’ someone asked.
‘No,’ the consultant answered.
By now the shaking had spread to the other leg and had become more violent. Brenda’s eyes, which had been open and alert, were slowly closing again. As the shaking moved up through her body the machine that measured her falling oxygen levels began to beep behind her.
‘Now?’ a tense voice asked, syringe filled and held in preparation.
‘It’s not a seizure,’ the consultant said.
Glances were exchanged.
‘Take out the ET tube,’ the consultant, again.
‘Her oxygen saturation has dropped.’
‘Yes, because her breath is held. She’ll breathe again in a moment.’
Brenda’s face reddened, back arched and limbs shook violently. We all stood around the bed, our breath held too, in sympathy.
‘It’s not an epileptic seizure, it’s a pseudoseizure,’ the consultant said and, as she said it, to our immense relief, Brenda took a large gasping breath.
Half an hour later Brenda was awake and sitting up in bed, with large tears coursing down her cheeks. That was the last time I saw her and the only time I ever saw her fully awake. Brenda and I never spoke.
Later that day when I was back in the hospital coffee room with the other junior doctors I told them about Brenda. ‘You know that woman who has been anaesthetised in intensive care for most of the week? She doesn’t have epilepsy, after all. There was nothing even wrong with her!’
It would be several years before I fully realised the danger that Brenda had faced. It would take longer still for me to really understand the disservice I had done her with my words. During my subsequent training I did become more understanding of psychosomatic disorders. But I would need to complete my training to mature as a doctor.
In 2004 I was appointed to my first consultant post and with this came the greatest change in my medical practice. As a senior registrar I thought I had known responsibility, but when the final decisions became mine alone I saw that I hadn’t really. The weight of decision-making is very different when there is nobody above you to say what you did was right or wrong. Only the patient getting better or worse will tell you that.
The specific job I had chosen helped too, even though, at first, I did not fully know what I had taken on. I was trained in two specialities, neurology and clinical neurophysiology. Neurology qualified me to care for patients with diseases of the nervous system, and clinical neurophysiology taught me how to carry out specialist investigations on the nerves and brain. My first consultant post straddled those two areas and saw me running a service whose main purpose was to investigate people with epilepsy who were not getting better with standard treatment. It transpired that approximately seventy per cent of the people referred to me with poorly controlled seizures were not responding to epilepsy treatment because they did not have epilepsy. Their seizures were occurring for purely psychological reasons.
Suddenly I was seeing a greater number of patients whose illness could be more fairly classed as psychological than neurological. And each person I encountered had a story to tell, and too often that story was one of a journey through the hospital system that led them to no satisfactory understanding of what was wrong. Few received treatment and few recovered. I witnessed suffering that had lasted for years, and it was clear to me that it would no longer be acceptable for me to tell my patients which diseases had been ruled out and to consider that my job was done. If I was ever going to make anybody better I would have to start being more proactive. For the first time I saw clearly the seriousness of this disorder, how people struggled to recover – and how they rarely did.
Since those early days I have met many people whose sadness is so overwhelming that they cannot bear to feel it. In its place they develop physical disabilities. Against all logic, people’s subconscious selves choose to be crippled by convulsions or wheelchair-bound rather than experience the anguish that exists inside them. I have learned a great deal through working with people who battle on despite the hardship and judgement that the world throws at them. I have found myself astounded by the degree of disability that can arise as a result of psychosomatic illness. In the beginning I sometimes fought against feelings of suspicion towards my patients, questions about their insight and their motives. So dramatic were some of the disabilities that it was not always easy to hold on to a belief in their subconscious nature. I have shared my patients’ struggle to accept the power of the mind over the body. I have felt their frustration at how the system fails them and their anger at how they are perceived. In this book I will tell the stories of some of the brave people I have encountered. I have been very careful to protect the identity of my patients. All names and personal details have been changed completely, without altering the vital components of the stories. I hope to communicate to others what my patients have taught me. Perhaps then, future patients – people like you and me, our friends, families and colleagues – will not find themselves so bewildered and alone.
Before I begin, I need to clarify some terminology. So far, for simplicity I have used the term psychosomatic to refer to any physical symptom which cannot be explained by a disease and is suspected to have a psychological cause. But to say somebody has a psychosomatic disorder is not a distinct diagnosis, it is an umbrella term that encompasses several different diagnoses. That is also the case for the term medically unexplained symptoms – this is shorthand that the medical community uses to refer to symptoms that are thought to be stress-related and which cannot be accounted for by any physical disease. I will continue to use the terms psychosomatic and medically unexplained symptoms in this umbrella sense throughout the book. I will also use the term psychogenic when I am referring to symptoms where there is a strong conviction that they have arisen in the mind, as a result of stress or psychological upset.
However, the terms psychosomatic and psychogenic will not always be appropriate. These labels make assumptions. Each contains the prefix psycho which presupposes that a symptom arises in the mind, usually through emotional or mental distress. For some patients, particularly those who are wholly unaware of a psychological trigger, these terms are both alienating and potentially incorrect. In their place I will sometimes use the term functional. This is a purely descriptive term that implies that a symptom is medically unexplained but which makes no judgement about any particular cause.
To further clarify the difference in these labels, imagine a woman who suffers a serious sexual assault and soon after develops unexplained paralysis of her legs. In light of the known trauma, once medical disease has been ruled out, the paralysis could reasonably be described as either psychosomatic or psychogenic. On the other hand if a woman develops medically unexplained paralysis where there was no known preceding trauma, her paralysis would be better referred to as functional in the first instance. This term says that her neurological system is not functioning as it should, that no disease has been found, but it does not presume to know why. Many doctors use these labels almost interchangeably, but to the patient the distinction means a lot.
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is the bible by which psychiatrists diagnose psychological and psychiatric illness and in it the term psychosomatic disorder does not appear. The conditions I describe in this book now more accurately fall into the DSM classification of somatic symptom and related disorders. Within that category there are several subclassifications. Each of those are designed to help the doctor make a diagnosis, but they are labels that cannot be offered easily to a patient. Included under this heading the DSM describes the following distinct conditions: somatic symptom disorder, conversion disorder, psychological factors affecting medical conditions, and unspecified somatic disorder.
A somatic symptom disorder is defined by the prominent presence of somatic (bodily) symptoms that cause significant distress and disruption to normal life for which there is no, or little, medical explanation. Pain is the most prominent symptom. It can be accompanied by almost any other sort of symptom, tiredness or diarrhoea or pretty much anything. The behaviour surrounding the symptom is key, not the symptom itself. There is disproportionate worry, anxiety and excessive energy spent on health concerns. It isn’t enough just to have pain, what’s important is how the person is disabled by that pain. They may stop exercising first. When the pain continues they stop working. Then they begin to avoid the normal activities of daily life.
There is an important distinction to be made here between the terms somatisation and somatic symptom disorder. Somatisation refers to the tendency of a person to have physical symptoms in response to stress or emotions. So, for example, if I get a headache when I am under pressure then I might be said to be somatising or to be a somatiser. But somatisation does not necessarily lead to a somatic symptom disorder. To somatise is a common, almost normal, feature of life. It is a basic mechanism through which the body demonstrates mental distress. If the symptoms are transient and not excessively disabling then they do not indicate illness and do not constitute a somatic symptom disorder. Only when they are chronic and disabling can this diagnosis be made.
A somatic symptom disorder is a rare and devastating medical problem which represents one extreme of a spectrum of diagnoses. It describes the person who is chronically severely disabled with multiple symptoms and has little chance of recovery. At the other end of the spectrum are the unspecified and brief somatic disorders that dip in and out of a person’s life, wreaking havoc for shorter periods and to a lesser degree. Illness of this sort is common. An example of this would be somebody who develops joint pain that cannot be explained, it causes disability, interferes with life but isn’t accompanied by multiple other symptoms and eventually disappears.
A conversion disorder is the neurological form of a somatic symptom disorder. Most of the same rules apply – it is still a condition where disability outstrips any disease that can be found – but in this particular case, the symptoms are neurological. So rather than pain being the most disabling symptom, there is loss of strength in a limb, or convulsions, or loss of sensation.
Conversion disorders are also known as functional neurological disorders and, in a small number of cases, as dissociative disorders. Conversion disorders were once also referred to as hysterical conversion or hysteria. When I use the term hysteria I will be using it in the historical sense, not in the way we use it now. Currently hysteria is used to describe an outburst of irrational emotion but in the past it was a medical diagnosis of unexplained, largely neurological symptoms. In this book the words hysteria and conversion disorder will be used to refer to the same illness in different eras.
It is important to point out that in a somatic or conversion disorder an organic physical disease may or may not be present. Such disorders do not presuppose no disease. Sometimes there is a medical diagnosis of a disease but the disability is out of proportion to it. That is where the classification of psychological factors affecting medical conditions comes into play. Imagine somebody who suffers with asthma. Their asthma is well treated and stable and for that reason lung function tests are normal and, when the doctor listens to their chest, there is no wheeze and the air can be heard going into the lungs. There is a disease present which is deemed under good medical control but the person still feels disabled by shortness of breath. If the asthma is well controlled and fails to explain the ongoing symptoms then those symptoms may be fairly considered as potentially psychosomatic or functional. Or, imagine somebody who has an underactive thyroid gland, a disease that causes fatigue. They are taking hormone replacement tablets and blood tests show that the treatment has returned their thyroid hormone levels to normal. We might expect that person to have minimal symptoms of thyroid disease. If that person suffers with ongoing crippling tiredness which the thyroid disease does not fully explain, then that tiredness might be called psychosomatic even though there is a known underlying medical problem.
In actual clinical practice all of these diagnostic terms are used in a fairly indiscriminate manner. It would not be unusual for a single patient to see several doctors and receive a different diagnostic label from each; conversion disorder from one, functional neurological disorder or psychosomatic disorder from the next. Sometimes a doctor uses the term that they perceive to be the least pejorative, or the one that the patient is most likely to understand and to accept. To a degree I will reflect that practice in the stories I tell.
Finally I need to clarify the terms disease, organic and illness. A disease is a biological dysfunction of the body. It implies a physiological abnormality or anatomical structural abnormality. The terms disease and organic refer to pathological disorders of the body, as opposed to disorders of the mind.
Illness is not the same as disease. Illness is the human response to disease. It refers to the person’s subjective experience of how they feel but does not assume any underlying pathology. Illness can be either organic or psychological. A person can have a disease but not be ill. For example a girl with epilepsy has a disease, but if she is not having seizures and the epilepsy is asymptomatic she is not ill. A person with a psychosomatic disorder, on the other hand, is ill but does not necessarily have a disease.
Everybody’s experience of illness is their own, and that is where illness becomes distinct from disease. I recall a non-medical friend of mine wondering why it was not possible to define all the characteristics of a single disease. Then a map or a formula could be created for all the common ailments and doctors might even find themselves obsolete – tap your symptoms into a computer program and a diagnosis pops up on a screen. That friend had failed to understand the human condition. He could not see the ways in which the individual patient impacts on their own disease. A person’s personality and their life experience moulds the clinical presentation, the response and the outcome of any brush with illness. If you take one hundred healthy people and subject them to the exact same injury you will get a hundred different responses. That is why medicine is an art.
Many of the people I will tell you about in this book suffer from illnesses so severe that their lives have been destroyed. But most of them do not suffer from a disease. That distinction will prove very important to them. It will decide how their disability is perceived, both by themselves and by those around them. That, in turn, will determine everything that happens from that point onwards.
For most sufferers acceptance of the diagnosis is dependent on how the illness is viewed. Those who can accept it have the best chance of recovery. But for that to happen, some of the common preconceptions and judgements levelled at those with psychosomatic illness need to change. Those preconceptions and judgements mould every patient’s story, and form a crucial part of this book.
At one time or another, we will try to silence painful emotions. But when we succeed in feeling nothing we lose the only means of knowing what hurts us and why.
Stephen Grosz, The Examined Life (2013)
PAULINE WAS EASY to spot. She was half the age or less of any other patient in the ward. The cot sides of her bed were up and each was covered with a layer of soft padding. To the right of her bed there was a wheelchair. In a high-backed chair to her left sat a woman who was staring intently at me. I saw her whisper something to Pauline and then their two similar faces turned back in my direction. Similar but different, in Pauline’s face I saw only fear, but in the other I saw hope. Curtains were partially pulled around the bed, shielding the women from the neighbouring patients. Or the other way round, I didn’t yet know which.
I had received a call the previous evening asking me to see Pauline as soon as possible. She had been admitted to the ward with pain and swelling in her leg. She had undergone a series of investigations but no explanation had been found. This was Pauline’s third admission with the same problem. That morning the team looking after her told her that they had exhausted all possible tests in the search for a cause. Pauline was told that nothing further needed to be done and she could go home.
‘It is not possible for us to find an explanation for everything. There is nothing more that I can do for you,’ the consultant had said.
One hour later Pauline was in the bathroom when she lost consciousness. A nurse had heard a loud noise and had run in to find Pauline lying on the floor, convulsing. The emergency medical team was called and Pauline was resuscitated and carried back to her bed. In the hour that followed she was witnessed to have two more convulsions. After the on-call neurologist had seen Pauline and heard her story, I was next on the list.
Before going to talk to her I went in search of her medical records. I found them on the bottom of the trolley, where files are kept that are too bulky to be stored elsewhere. Pauline’s notes came in two large volumes. These were the sort of notes that more commonly belonged to the elderly or people troubled by a lifelong incurable and serious condition. But Pauline’s notes were different, they spoke of a lifetime in hospital but they did not contain any definitive diagnosis or satisfactory explanation of any kind.
I read through the file thoroughly, starting with her first admission to hospital and leading to the present day. How an illness evolves is of great importance if you are ever to find a cause. Only when I was familiar with the version of the story that existed in the records did I approach Pauline. I introduced myself and started as I always did.
‘How old are you now, and when were you last completely well?’
‘I am twenty-seven,’ Pauline answered, ‘and if you really want me to go back to the very beginning I haven’t been well since I was fifteen years old.’
So I asked her to start there, at the point where one life ended and another began. This is the story she told me.
‘I was just like everybody else – normal.’
‘You were more than just normal, darling,’ Pauline’s mother rested her hand on her daughter’s arm. ‘She was very sporty, good at everything, in the top set at school. She could have been anything she wanted to be.’
‘That was twelve years ago. Now look at me.’
In the year leading up to her GCSEs Pauline had begun to complain of feeling generally unwell. She was tired and plagued by aches and pains. Her doctor had run some tests, told her that she might have a urinary tract infection and put her on a course of antibiotics. That seemed to help for a while but the problem soon recurred. Pauline received four courses of antibiotics in only three months; each time she improved for a brief period but then deteriorated again.
‘After the first infection I started to experience burning pain every time I used the toilet. Antibiotics only ever helped for a week or two. And when the infection came back I could barely get out of bed, I felt so weak.’
In the end Pauline was referred to a urologist, a bladder specialist. Numerous tests were done but all the results were normal. A camera was passed up into her bladder in the hope that an explanation lay there. There was nothing out of place. In the end the urologist put Pauline on a low-dose antibiotic which she was told to take every day to prevent future infections. She had taken the antibiotic almost continuously ever since.
‘I got a bit better after that,’ she said.
Pauline had got better but she had missed so much school that she could not sit her exams and was forced to resit the year. That meant that she was in the same class as her younger sister. Her old classmates had moved ahead of her. It was difficult, but Pauline was resourceful and able to make new friends and seemed to settle into her studies again. Pauline was soon at the top of her class.
‘I didn’t feel the same as I had before the infections but I acted the same so nobody could tell.’
‘She was a driven child,’ her mother told me.
For one whole term Pauline remained in school without missing a single lesson.
‘I was always tired but I fought it. I could even play netball, that’s how good things got for a while.’
Pauline’s recovery was incomplete and short-lived. During the Christmas holidays she began to notice that her joints felt increasingly painful and swollen. She went to see her doctor and he wondered if this might be a side effect of the antibiotic. Pauline stopped taking it on his advice. Almost immediately she contracted another urinary tract infection. The antibiotic was restarted and Pauline was referred to a rheumatologist.
‘When they saw how bad things were for me they thought I might have juvenile arthritis and started me on a course of steroids. But when the tests came back everything was normal, nothing was wrong,’ Pauline recounted.
‘I’m sure that when they said that everything was normal that they did not mean that nothing was wrong,’ I ventured.
‘Are you sure?’ Pauline replied.
No, I wasn’t.
While taking the steroids Pauline’s weight increased dramatically, but her joint pain did not get better. She had difficulty walking and spent most of her time at home. Isolated, in pain, concerned about her appearance, she became depressed.
‘Her depression was a wonderful opportunity for all the doctors to say that her illness was all down to that,’ her mother told me, ‘but she wasn’t depressed when it all started. That came after.’
Pauline stopped taking her steroids. She also stopped eating. Her weight fell rapidly. At the same time her joint pain also got a little better.
‘It was odd,’ her mother said, ‘when she stopped eating it almost seemed that she was improving in other ways. She even had a couple of weeks when we thought she would get back to school.’
But it was not very long before it became plain that Pauline’s weight loss was in itself a problem. She became worryingly underweight. Her periods stopped. Her hair began to fall out. Yet it was difficult for Pauline to start eating again when this was as close as she had felt to being pain-free in over a year. Seeing how Pauline improved just as a result of a change in diet, her mother wondered if she had a food intolerance. She took Pauline to be tested for allergies. After a series of tests Pauline was told that she could not eat wheat, dairy products and a variety of fruit and processed foods.
‘I was a bit doubtful,’ Pauline said, ‘I’d been eating most of the things they listed all my life. But I didn’t have much choice so I followed the diet they gave me and I put on weight, which was good. The pain did come back but it wasn’t quite as bad as it had been.’
Although Pauline gained weight she never fully returned to how she had been. She had missed so much school by then that her mother was concerned that she would struggle to catch up with the other children. A private tutor was hired. Pauline studied at home and only went back to school to sit her exams. She did well, her scores placing her in the top ten per cent of her class.
Pauline remained on a restrictive diet. She was taking regular painkillers. She could no longer play sport, but she could usually walk. She had also started going out with friends again, and even had her first boyfriend. It was a short-lived, lukewarm affair, but Pauline was happy to have had her first relationship. It made her feel normal again for a while.
Pauline was keen to take her A levels but was scared too. She did not want to get caught in the cycle of missing classes and catching up and falling behind that she had known for the previous two years. The decision was made to continue with tutors at home. She was glad of the decision in the years that followed. Her joint pain came and went in bouts. Every now and again she thought she saw a pattern develop, but almost as soon as one had been discovered, it disappeared.
Sometimes the pain was so severe that Pauline could not walk. She described how she would crawl on her hands and knees to the bathroom if there was nobody there to help.
‘Sometimes I didn’t drink anything all day just so I didn’t need to make the trip.’
In time Pauline’s mother had to leave work to care for her. ‘I couldn’t bear to be apart from her at that time. If I left the house for too long I had visions that I would come home to find her dead in her bed, or collapsed on the floor. That’s how weak and pale she looked, like a girl who would die at any moment. And she was only eighteen years old.’
Pauline lived with her mother and her two younger sisters. Her parents had divorced when she was twelve. After the divorce she had regular contact with her father at first. Their meetings had only tailed off as she had grown older and had wanted to spend weekends with her friends instead of with her younger sisters and father. In time her father had started a new relationship and he had remarried shortly before Pauline’s first illness. Her mother had remained single. When Pauline was first hospitalised with the urinary tract infection her father had rushed to be by her side. When Pauline’s mother had to give up work her father supported the family financially and paid for tutors. But as her father’s life moved forward and as Pauline’s illness became more and more normal to the whole family, his visits had become less frequent too.
‘Everybody forgot about how much pain I was in after a while. I didn’t want to be the girl who was always complaining so they began to think I was better. My sister saw me taking my painkillers one day and asked me what they were for.’
Diet and rest had only partially controlled Pauline’s pain. As she got older, it got worse. Simple painkillers were no longer effective and she had been prescribed morphine. Even that did not fully eradicate the pain, but to Pauline pain had become a normal part of life.
‘I could have lived with the pain if it were not for what happened next.’
During the summer holiday in the lead-up to her final A-level year, Pauline’s next illness struck. Her mother heard her calling out from her bedroom and came into the room to find her lying on the floor, doubled over and clutching her stomach. An ambulance was called and she was rushed to her local hospital. The admitting doctor diagnosed her with acute appendicitis and she was taken directly to theatre for an emergency operation. Her mother and sisters paced the floor of the hospital waiting to see if she would recover. They were by her bedside when she woke from the anaesthetic and cried out that the pain was no better. Two days later the surgeon told her that they had been mistaken in the diagnosis. When they had microscopically examined the appendix they had removed, they discovered that it showed no signs of inflammation and no evidence of appendicitis.
That was the beginning of a chain of events that would last over a year. A relentless and fruitless pursuit of the cause of her abdominal pain had begun. At first the doctors thought she might have a stomach ulcer caused by years of taking painkillers. A camera at the end of a long flexible scope was passed down into her stomach. No ulcer was found but her stomach lining seemed inflamed so she was given antibiotics and antacid drugs. They helped, but just a little and not for long. Next they wondered if the pain might come from chronic constipation caused by morphine and poor diet. A barium enema failed to provide an explanation. So a camera was passed through her back passage and into her bowel. Polyps were found, small out-pouchings of the bowel wall. Pauline was told that polyps were unlikely to be the cause of her pain but they might be a precursor for bowel cancer and they would need to be monitored for the rest of her life.