The most remarkable example of the way in which the two states were entangled yet unaware of each other.
Sigmund Freud, Studies in Hysteria (1895)
WHEN I MET Camilla for the first time she was sitting on her bed in the video-telemetry unit. She was a slight creature; I towered over her. Accompanied by a team of junior doctors and nurses, we surrounded her and could so easily have made her appear diminished. We were in our work clothes, she in her night clothes, we were rifling through paperwork, she was half reclined on the bed. But, somehow, Camilla maintained a rare sort of dignity. In the future I would wonder if it was not just that forbearance that had been Camilla’s weakness all along.
Camilla’s life had been full of opportunity from the start. There was no way to anticipate how a single event would change everything for her. She referred to her family as ‘comfortably off’. Her father worked as a banker. Her mother, an air hostess, had given up her job to start a family. Camilla’s upbringing was a happy one, she was allowed to be a child when that was appropriate and then an independent teenager, but her parents were always there waiting to give her support when needed. The result was that Camilla grew up to be well balanced and confident. But a little sheltered, she would add. At the age of eighteen Camilla had gone to university to study law. She told me that when she was interviewed for her university place she had told her interviewers tales of all the good she wanted to do, how she would help the defenceless and punish the guilty.
‘I think I was lying when I told them that,’ she said, ‘I had barely been out in the world. I didn’t know hardship then so I had to make something up that I thought they’d like.’
It may have been true that when Camilla was eighteen she had never met the defenceless she spoke of, but eventually her prediction for her future would prove correct.
Camilla had had an insular and protected upbringing, but that did not mean she did not have the ability to look outside herself. She was interested in the world around her. She enjoyed politics and world affairs. They had felt remote to her when she lived at home but university life helped transform the wider world into something real.
‘I wish I could go back to that time,’ she said, ‘when everything seemed possible and I thought I could solve any problem I encountered. Life really knocks that out of you, doesn’t it?’
After leaving university Camilla took a job in a big City firm in London, fancying that she would pursue a career in business law or follow her father into banking.
‘I think I always doubted how suited I was to that sort of work,’ she told me, ‘but I went along with it for a while.’
Over the next few years Camilla’s life followed the course mapped out for her. Hard work saw her well respected in her workplace. Her personal life was also fulfilling. At the age of twenty-four she had fallen in love with an old college friend, Hugh. They were both twenty-seven when they married.
‘Hugh and I married at the exact same age that my parents had,’ she told me.
A year later they moved from their small flat in central London to a modestly large home suitable for a family. The fifteen years that followed brought many changes in Camilla’s life. The couple became a family with the arrival of their two small children. In a decision that she would never have predicted when her career was just beginning she took six years off while her children were young.
‘I’m not old-fashioned,’ she said, ‘I just wanted my children to have the childhood I had: hot summer days and paddling pools. That’s how I remember it at least.’
Once the children were at school Camilla decided to return to work. That was when she noticed the change in herself.
‘I couldn’t even contemplate going back to a corporate environment,’ she said. ‘As soon as I tried to imagine myself in a meeting, defending my client’s position, poring over heaps of documents, I realised my heart wasn’t in it. I knew it was the wrong career for me.’
Hugh was partner in a large law firm by then so, with no pressure to return to paid work, Camilla initially took a job volunteering at a free legal advice clinic. She would later say that this was the most rewarding job she had ever done. She had found a fight that she could invest in. Most compelling for her were the family cases; cases of neglect, abuse, deprivation – she was helping people survive the most harrowing experiences. After a year of volunteer work she began the process of retraining in family law. Camilla brought the compassion of motherhood and the negotiating skills of her training in business to her new role and rose quickly through the ranks. Before long she was fully qualified and working almost as hard as she had done before the children were born. Her new job required her to work long hours, sometimes travelling throughout the UK. She had felt a little guilty about this at first. Lengthy conversations with Hugh eventually convinced her that she could be a mother and have a demanding career at the same time. The children were now nine and eleven years old, Hugh also worked long hours but could work from home when needed and they had plenty of extended family to help out if required.
‘The first time I had to stay away from home overnight I couldn’t sleep, I felt like such a bad mother. But when I got home the children had had a great time without me, all treats and games with their grandmother. That made it a lot easier the next time.’
It was on one such trip that Camilla fell ill. She had been working in Cumbria for two days and was due to return home. She had just come out of a meeting when her head felt light and a wave of nausea struck and she thought she might faint.
‘The meeting had been a huge success,’ she said, ‘it was a jubilant moment. There was no reason for it to happen just then.’
Camilla sat down in a corridor after telling a colleague that she felt strange. The building was overheated and people brushed past her as she tried to bend forward to rest her head in her hands. A local colleague was with her and he said that he would get her a glass of water. As he disappeared she noticed that her right hand began to tremble. Within one minute the trembling moved to her left hand. She sat back and laid her head against a wall as she felt the shaking become more violent. She felt the intensity of how alone she was. Strangers filed past, creating an arc around her, as if she had suddenly become contagious. Some stopped to stare. By the time her colleague had returned the shaking had spread to her legs so that she was half slipping from her chair with all four limbs flapping. Her heart was pounding in her chest. She tried to ask for help but found that no words would come.
An ambulance was called. When it arrived Camilla was lying on the ground, her eyes fixed open, her breath held, her limbs still moving out of her control. Her colleague had attempted to lay his jacket under her head but she was moving so much that it did not help and her head repeatedly hit the floor. By now several strangers had come to her assistance; one gripped her shoulders as if he could stop the shaking just by force.
Camilla vividly recalled the moment when the paramedic stooped down to her. She was awake and aware of the shaking but powerless to let people know that she could see and hear them. He spoke to her in a thick accent and she could not understand what was being said.
‘He was a huge man,’ she said, ‘he got down on his knees and was so close to me that I could feel his breath on my face. I could hear kindness in his voice but I was terrified. When I didn’t answer he stood up again and placed a stretcher on the floor beside me. Another paramedic helped him lift me on to it. I remember being acutely aware of the feeling that my skirt was riding up my thighs and of everybody looking at me.’
Camilla had a terrifying ten-minute journey to a local hospital. For the whole trip her arms and legs flapped wildly, her back arched and her breathing alternated between nothing at all and huge gasps. She was certain that she would never see her children or husband again. Once in the casualty department she was wheeled into a dark room where a doctor and nurse were waiting.
‘They looked panicked,’ she said, ‘as if they didn’t know what to do. The nurse grabbed my arm and the doctor took blood. After a while more people came running into the room. It was chaos. Eventually three nurses were holding me. They rolled me over and gave me an injection in my bottom. It made exactly no difference. It didn’t help.’
Camilla was given three injections before the movement in her limbs quietened, after which she slowly drifted out of consciousness. When she awoke she was lying in a different room with a drip attached to her arm. Another patient lay in a bed beside her, an old woman with rasping breath. An old man sat by the woman’s bed gripping her hand.
‘I felt utterly disorientated. Like going to bed in your own house and waking up in Narnia. I tried to sit up but felt so dizzy I had to lie back again. I looked around for my handbag so I could get my phone to call Hugh but it wasn’t there. The old man saw how upset I was and said he would go and get the nurse.’
The nurse arrived a few minutes later and told Camilla that she had suffered a seizure. They had stabilised her with drugs and the doctor would see her later. Camilla’s colleague, who had seen her collapse, appeared soon after. He had followed the ambulance to the hospital and had waited there for Camilla to wake up. He had also phoned the London office and had been given Hugh’s mobile number, but had been unable to get hold of him. The colleague had kept hold of Camilla’s handbag and returned it to her. As soon as she could Camilla rang Hugh’s office and was told that Hugh was at a meeting but they would track him down as a matter of urgency and have him phone her back.
Half an hour later Camilla was alone and still had not spoken to Hugh when the doctor came to see her.
‘They told me that I had suffered a seizure and that they thought I might have a brain tumour. They said I needed a brain scan but that they couldn’t do it. I would have to go somewhere else for that. They were trying to arrange for me to go to another hospital but they didn’t know how long that would take.’
Shortly after, Camilla’s phone rang. A panicked Hugh was on the other end of the line. He told Camilla that he was getting straight into the car and would be with her in a few hours. He arranged for his mother to care for the children. Another colleague came to sit with Camilla while she was waiting for Hugh to arrive. The colleague had gone to her hotel and collected her overnight things and brought them to the hospital.
‘For the second time, all I could think was that these relative strangers had seen my underwear. The whole experience was so degrading.’
In the hours that followed Camilla had three more convulsions until eventually her colleague was asked to leave and she was alone with the nurses again. Hugh arrived later the same day and, after he had seen Camilla, he asked to speak to the doctor in charge. He was also told that they thought it very likely that Camilla had a brain tumour. They were in the process of arranging for a transfer to a hospital that had scanning facilities but it could take several days for a bed to become available. Hugh did not hesitate. He contacted his medical insurer and arranged for Camilla to be admitted to a private hospital in London. A private ambulance was booked and cancelled four times over the course of the next few days. Every time Camilla was scheduled for transfer she had another seizure and the doctors did not think she would survive the journey. Eventually, heavily sedated and accompanied by an anaesthetist, Camilla was allowed to travel.
‘For six days I believed absolutely that I had a brain tumour. I was so relieved when we got the scan result. And now … I wish it had been a tumour.’
Camilla spent ten days in hospital in London. She underwent a series of tests. None were conclusive but eventually the doctors were sufficiently convinced that she had epilepsy and started her on treatment. Her seizures slowly disappeared. When Camilla was finally discharged her children were waiting excitedly at the front door of their house to welcome her home. They had decked the house with banners and balloons that said how glad they were to have their mother back.
Camilla spent the next two weeks recuperating. The seizures settled down in time and Camilla was happy to return to the normality of work.
The following eighteen months were full of hopes raised and dashed for Camilla. The seizures which seemed so well controlled at first kept recurring. And they changed. In the beginning she was helpless but awake for the duration of the convulsion but over time the seizures brought a deep loss of consciousness that she found particularly distressing. Her doctor increased her medication and then changed it and changed it again. Each new drug brought a brief reprieve, a few weeks seizure-free, but the improvement was never sustained.
‘If I hated one thing more than anything else about the seizures it was the unpredictability. They teased me. Camilla … go back to work … everything will be alright, they said. But they were lying. Every time I thought I could get on with my life, there they were.’
In fact Camilla did continue to work. She was never far from the computer at home and during the lulls in her illness she continued to travel.
‘It teased me and I defied it,’ she said, ‘but it won in the end.’
When the seizures continued unabated, Camilla’s neurologist became concerned and referred her for video telemetry. During that admission she had suffered several seizures that led to the revision of her diagnosis.
‘I’m sorry, but I think the original diagnosis was wrong. The attacks we have seen are not due to epilepsy; they are non-epileptic attacks, they have an emotional cause,’ she was told.
Two weeks later I received a letter from her doctor:
This very nice woman has been told that she has pseudoseizures. She is having great difficulty accepting this. I have known Camilla for many years, she is a very intelligent, sensible, successful woman and I share her doubt about the diagnosis. I would appreciate if you could admit her for further tests.
And a while later, following a further week of video telemetry, Camilla and Hugh and I had sat together so that I could tell her that I agreed that she had dissociative seizures.
‘I still don’t believe it. I’m not that sort of person.’
What sort of person, I think, but do not say.
‘I’m happily married with two beautiful children; my life has never been so full or so rewarding. I’ve had times in my life way harder than now, why didn’t it happen then?’
‘I’m not sure I can answer that. But that can be explored and understood and you can get better.’
Camilla had fixed me with an emotionless gaze throughout our conversation. She challenged me to back down, to change my mind.
‘Do you understand how humiliated this makes me feel?’
This is the saddest of truths. For Camilla this diagnosis was more like an insult than an explanation of what was wrong.
‘This could happen to anybody. It’s an illness, it needs attention and treatment.’
In fact the humiliation meted out to Camilla by her illness extended far beyond just the implications of the diagnosis. She had suffered many seizures in strange places surrounded by people she did not know. During a period when she believed the seizures were in remission she had gone on holiday with Hugh and the children to Morocco.
‘I collapsed in a public square when I was there. Hugh was in a shop with the girls and I was on my own for the only time during the whole holiday. I was surrounded by a throng of people when it began. I didn’t have time to get somewhere less public, I collapsed right where I was in the most frightening place I could imagine. A man called a group of women to help me so I suppose I was lucky. They did look after me, but it was awful. Two sat on me. I was flapping about the place and they were straddling me. The others broke into some sort of prayer, a high-pitched wailing. They were waving their arms and shouting up to the heavens. They meant well, I suppose. All around them men and children craned to see the spectacle.’
‘That must have been awful. Did it stop you travelling?’
‘Why not travel?’ she was incensed now. ‘Do you think having a seizure in England is any less degrading?’
Camilla helped remind me what it feels like to find yourself helpless in an unsympathetic, voyeuristic world.
‘I have collapsed in the street lots of times. I chose to get on with my life. I didn’t want to hide indoors. Lots of people are compassionate and helpful. They might try to pin me to the ground but those people mean no harm, I know that. I’ve had a couple try to stick their fingers in my mouth in some sort of attempt to stop me choking. It’s disgusting but, again, they are trying to help. But do you know what happens all the time? People video me on their mobile phones and walk away laughing.’
It did not stop there.
‘I was standing outside a shop one day, talking to Hugh on my phone. I felt it coming on. Sometimes it starts in my arms and I have time to sit down but this time it started in my legs and I just dropped to the floor. The shaking was moving from limb to limb but I was still awake. A man got down on his knees beside me and asked me if I was okay. I couldn’t answer. And do you know what he did? He picked my mobile phone up off the ground and ran away.’
I imagined how the powerlessness of it must have left her feeling.
‘I was on a train about half an hour outside London when I had one once. I have a note which I carry in my wallet and if I have time I get it out to show people. I can’t talk so it tells people not to panic and to leave me be. My whole body was shaking as I showed the note to the people sitting beside me. It says, I have epilepsy but I’m fine, the seizure will wear off in its own time, there’s no need to call an ambulance. A bunch of do-gooders decided my best interests would be served by removing me from the train. They manhandled me to a standing position and half walked, half carried me to the exit. They then put me on the platform with my bag and told the stationmaster that I needed a doctor. I was desperate to tell them to let me stay on the train. I just wanted to go home. The words wouldn’t come out. What will my note say now? I’m mad, stay clear it might be catching?’
But it was not only the reaction of strangers that proved a problem.
‘Even before I was told that these attacks were in my head people at work said terrible things to me. I had several convulsions at work and one day I was lying on the ground with a really nice girl from the office fussing over me when a colleague came up to her and I heard him say, leave her alone, there’s nothing wrong with her. I couldn’t believe it but once he’d said it I started to see that attitude everywhere. Some people were nice but some people decided I was going mad even before I knew they were right. One day there was a meeting scheduled and I was told not to attend. My seizures might detract from the important discussions of the day.’
‘You know the Disability Discrimination Act applies to this illness?’
‘Don’t you see? I was embarrassed. I didn’t want to do anything that would draw even more attention to me. I wanted to crawl into a hole.’
‘But you didn’t.’
‘Now I have to. I can’t tell them this.’
The revision of Camilla’s diagnosis added another dimension to her struggle. When a patient receives a diagnosis of dissociative seizures within days or even weeks of their onset they often disappear almost the instant the diagnosis is delivered. I did not think that Camilla would be so lucky. Her pattern was set. She had lived with the belief of a diagnosis of epilepsy for nearly two years and now that diagnosis was being taken away. Her distress was exacerbated by the protracted nature of her journey.
‘Can she have a second opinion?’ Hugh asked.
I was Camilla’s second opinion.
‘Of course, you need to be happy that the diagnosis is correct. I do need to keep you in hospital while I withdraw your epilepsy drugs. Can I ask that you do one thing while you’re still here? Will you see the psychiatrist, just to explore all the avenues?’
‘But there’s nothing on my mind. Nothing is bothering me. Any problems I’ve had in my life I’ve dealt with.’
‘You may be right but there is very little to lose by having one meeting.’
Camilla agreed and, for a moment after, we sat looking at each other in silence.
‘Okay?’ I asked as I left.
‘Okay,’ she said, and just as I crossed the threshold, ‘I do believe that things like this can happen to people through stress, you know. I’ve seen terrible things in my work and I’ve seen the catastrophic reactions that people have in the face of them. I just don’t believe that something like that could affect me.’
‘It could happen to anyone.’
‘Have you had anything like this?’
‘Not to the point that it caused illness, no. But, like most people, my body reacts to stress all the time. I’ve often felt dizzy and light-headed when I’m worried about something. But because I recognise it, it doesn’t bother me. I think of it as my friend, my early-warning system.’
‘You would like me to make friends with my seizures?’
‘As ridiculous as it might sound they may be there to protect you from something else. They may already be your friend.’
Sometimes people appear to behave in a way that brings them unhappiness or harm. People create arguments where none are necessary. They stay in abusive relationships when they could escape. They give up their ambitions for seemingly little reason. Behaviour that seems irrational might make more sense if you could appreciate the purpose it serves. Sometimes we create conflict with others because the intensity of feeling it leads to makes us feel less lonely. To feel hated can be less distressing than to feel forgotten. Sometimes being with anybody is better than being with nobody. Sometimes giving up feels better than failing. Sometimes failing through illness feels better than just failing. The unconscious substitutions we make to protect ourselves do not make sense when we do not understand them fully. I didn’t understand Camilla’s seizures yet, but that didn’t mean I never would.
Where it is possible to identify why an individual has developed a psychosomatic illness, it is far easier for the doctor to make the diagnosis and for the patient to accept it and in turn to recover. The most frequently asked questions – Why me? Why now? – are the most difficult to answer. Patients like Camilla face a diagnosis that doctors cannot fully explain in terms of its mechanism or its causes. Their desire for certainty is matched only by the lack of it.
Charcot, Janet and Freud all agreed on one thing in their work on hysteria: those who developed the condition were vulnerable for some reason. Charcot firmly believed that hysteria was an inherited disease, the onset of which could be triggered by trauma. This theory did not prove to be correct, but neither did it entirely lack merit. While there is no current evidence to support the likelihood of a genetically inherited cause, numerous reports agree that people with somatic symptom disorders are more likely than others to have a family member who is also affected by them.
Pierre Janet believed that hysteria occurred as a result of a dissociation between the conscious and the subconscious mind. The split was caused by trauma and it occurred in people who were mentally weak or defective and therefore vulnerable to the fracture. So the person was flawed even before the fracture occurred.
Freud agreed with Janet’s concept of dissociation but did not agree that the sufferers were mentally inferior from the outset. In contrast to Janet’s view he observed that many patients under his care were of superior intelligence. In Studies in Hysteria he said ‘hysteria of the severest type can exist in conjunction with gifts of the richest and most original kind’. He noted that his female patients were restricted by society and wondered if it was, in fact, lack of intellectual stimulation that led them to hysteria. So, quite the opposite to the opinion held by Janet.
But for Freud it was not only the restrictive social circumstance that created vulnerability. He believed that the vast majority of hysteria occurred as a result of a repressed memory of a childhood sexual abuse. He based this belief on the memories of abuse that he elicited from his patients, usually under hypnosis. He later changed that belief when, just like in the later sodium amytal experiments, hypnosis was said to produce the perfect conditions in which to elicit false memories. Despite his detractors Freud published a number of papers expounding the ‘seduction theory’ before revising his theory to say that the memories that he had at first taken to be real were in fact fantasies. He believed that these fantasies provided evidence for infantile sexuality and this belief led him to replace the seduction theory with the Oedipal complex theory.
The vulnerability that they described might be inherited or due to a mental weakness or a history of repression or abuse. It is still the case that doctors consider some people to be more susceptible to psychosomatic symptoms than others. The factors that can create susceptibility are varied and numerous but in the case of conversion disorders, and in the most disabling cases of somatic symptom disorder, the role of childhood abuse is still thought to be of great importance.
Many neurologists believe that almost every conversion disorder sufferer they see, particularly those with dissociative seizures, has been the victim of serious sexual or physical abuse. That view is only partly right. A history of sexual abuse is far more common in people with a conversion disorder than in the general population, so it is always worth considering. However, it is not true to say that it is found in the majority of sufferers. Studies vary but it is believed that up to thirty per cent of people with non-epileptic attacks have suffered sexual abuse. This means that at least seventy per cent have not. If a doctor approaches a patient with a conversion disorder with the belief that every individual has been the victim of such abuse, then they will be wrong at least seven out of ten times.
Sometimes the sort of childhood experience that creates vulnerability is subtle. Not all abuse is tangible or can be easily detected on direct questioning. An ignored or neglected child is more likely to develop somatic symptoms as they get older than a child who feels loved and secure. Having a father who is remote and uninvolved has been particularly associated with the later development of somatic disorders. But the impact of a distant, unloving father is not easily measured, nor is it easy to detect just through questioning the child who has now become an adult.
Many doctors think that sufferers of conversion disorders and somatic disorders have a particular sort of personality. This too can be a sticking point in making the diagnosis. If we believe that only a certain type of person tends to somatise in response to stress, then this makes the diagnosis a statement about personality as much as about medical illness. Those perceived to have the right sort of personality for psychosomatic disorders will be offered the diagnosis too often, and those deemed the wrong sort will have their diagnosis missed.
The concept of a somatising personality is not entirely wrong, though. There is evidence to suggest that people who have anxious or neurotic personalities, those with a tendency to worry or feel anger, guilt and depression, are more likely to develop somatic complaints. The same can be said for those with a tendency to be overly dependent on others, and people who see others as powerful and successful and themselves as helpless. Also a history of psychiatric illness is seen in fifty per cent of sufferers; but that means it is also absent in fifty per cent. So, having a particular personality or a history of psychiatric complaints increases your chances of developing a somatic disorder, but it does not mean that somatisation is the exclusive domain of any particular sort of person.
To a degree we are all vulnerable, we all have a threshold and if we are pushed beyond that point any one of us could develop a psychosomatic disorder. Our early lives help to determine both where our threshold will lie and what it might take to cause us to respond to stress through illness or psychiatric symptoms.
When psychosomatic illness does occur there is often a trigger that sets events in motion. Charcot, Janet and Freud were also in agreement on this point. They recognised that a specific precipitant could be identified before the onset of symptoms. But what counts as a trigger event? Some things are considered stressful by any standard. The loss of a loved one is not an uncommon starting point for psychosomatic illness, particularly where the loss was tragic in some way or guilt-ridden. A serious physical or sexual assault has also commonly been described as a precursor for illness.
Yet many life events are not so easily categorised as purely good news or bad, so it may not be easy for the patient to acknowledge or recognise the stressor. Having a baby may be unqualified joyous news to the couple who have longed for just that, but might be a more complicated event for the twenty-four-year-old who is just starting out in her career. To a twenty-five-year-old banker living in London, redundancy is something he or she will face at some point in their career and they will usually find a replacement job in due course. Redundancy to a fifty-year-old factory worker in a small town is quite another experience. What’s more, the trauma can be hard to quantify if the person does not recognise it as stress at the time. Moving to a beautiful new home, emigrating or getting a promotion can all be a positive change in our lives, while at the same time being a great source of stress.
The denial of stress seems to be inherent in conversion disorders. If unpleasant emotions have indeed been converted to a physical symptom, the patient is not always aware that they ever existed in the first place. That makes it difficult for scientists to study the association between stress and the onset of symptoms. In order to try and establish the type of triggers that might lead to psychosomatic illness, a group of scientists compared people with a recent diagnosis of conversion disorder with those recently diagnosed with an organic disease. They did not ask the patients to identify a stressor but instead showed them a list of life changes or possible traumas and recorded every event that they had encountered in the previous year, irrespective of whether or not the patient considered it relevant, or stressful. The respondents with functional illness were twice as likely as the others to have experienced a significant life event in the year before they fell ill. Examples of triggers were a birth, a death, a change in employment, moving home, being the victim of a crime, meeting a previous abuser, the break-up of a relationship, financial problems and so on.
In clinical practice I am constantly looking for these triggers. Sometimes there is an unequivocal stressor on which everybody can agree. When that is the case it makes the diagnosis far easier to accept and it offers a focus for treatment. But too often there is no discrete event at which to point the finger. The cause may be nebulous and therefore hard to pin down, perhaps the chronic low-level stress of poor housing or long-standing marital disharmony rather than one big stressful episode. Situations that make people feel trapped appear particularly likely to lead to somatic illness. Or there could be a series of small stressors that feel cumulative. Mild unhappiness in a relationship coincides with chronic dissatisfaction in the workplace; worry about financial stability adds to concern about how the children are doing at school. Out of several small worries a major anxiety is born.
To think of psychosomatic illness as a single illness with a single cause is a mistake. It has more in common with a medical condition like epilepsy. Epilepsy is not a single disease, it is a group of disorders, all of which result in seizures, and in each case the cause, treatment and prognosis are different. A child who has genetically determined epilepsy cannot be compared to an old man who develops epilepsy as a result of head injury. The same rules do not apply, and that is also how it is for psychosomatic illness. It is not a single condition, there are many distinct causes and two people cannot easily be directly compared. The end point may be similar but how people get there can be very different.
While it does seem to be true that for many of the patients who develop sudden onset seizures – or the more flagrant and dramatic of the conversion disorders – a clear psychogenic cause or trigger is present, not every somatic disorder can be explained in this way. Some arise as a result of dysfunctional attitudes to illness and a tendency to seek attention and help for every medical complaint. In these cases, somatic illness comes about because of particular behaviour rather than a trigger event or trauma.
The tendency to somatise often begins in childhood. Recurrent abdominal pain is common in children but an organic cause is found in fewer than ten per cent of those affected. It causes great disruption to families and to schooling. The mechanism for it is poorly understood. It does not lead to the development of disease and it is linked to anxiety and depression. Children who suffer recurrent abdominal pain are more likely than others to have a family member with a history of chronic ill health. Its incidence is higher where a parent suffers with multiple medically unexplained symptoms. A history of parental anxiety in the first year of life is associated with it, as is a history of a parent who suffers with obsessive traits or neuroticism.
Not all the childhood experiences that make us vulnerable to somatic disorders fall into the category of abuse. Some are almost the opposite. Over-attentiveness, particularly when a child is sick, can also serve as a risk factor for unexplained medical illness later in life. Attitudes to illness and health can be in part learned through experience. Chronic illness, either in a child or in a member of their family, can modulate how they manage illness and respond to stress in the future. Early exposure to chronic ill health can inadvertently encourage illness behaviour and, as we have seen, shape how psychosomatic illness presents, with patients often suffering from symptoms they have come across before in others.
Behavioural factors may also be important in the development of chronic pain and chronic fatigue syndromes. Disorders like ME and irritable bowel syndrome may not have their origins primarily in stress but instead in mistaken beliefs about how best to respond to changes in your body and illness. The tendency to respond to every bodily sensation, rather than ignore most of them as the majority of us do, may be learned at a very young age.
In irritable bowel syndrome, one explanation is that the sufferers have abnormal gut motility and an oversensitivity to foodstuffs and stimulants that leads to their symptoms. Another argument says IBS is in fact a disorder of perception, that those affected are overly observant of every internal sensation and change in their bowel motions. They are reacting to symptoms that others might dismiss, and those reactions serve to heighten the symptoms and awareness of them.
There is one further risk factor for psychosomatic illness that I have been withholding, a single personal characteristic that is seen in the majority of those who develop a medically unexplained chronic illness: they are female.
More than seventy per cent of patients with dissociative seizures and chronic fatigue syndrome are women. Somatic symptom disorders may be up to ten times more common in women. This imbalance has been recognised since records began. As doctors we have been very good at making this observation but not quite so successful when it comes to explaining it. In this, I too will fail.
Of course we must start with the name, hysteria, from hystera, the Greek for womb. The womb provided a compelling explanation and source of hysteria until the early twentieth century. The ovaries were also vibrant at communicating their distress to the rest of the body; and the clitoris, if not used appropriately, was also highly suspect. A woman’s attempt at self-gratification might lead to excessive stimulation of the nerves, and that might lead anywhere … But underuse might also do the same. Only in the twentieth century, as the organic hypotheses for hysteria slowly receded, did the interest in the female organs begin to wane.
Although the large majority of cases continued to be women, men were also seen to be affected: Charcot had pointed out quite clearly that he diagnosed many men with hysteria. He noted that pressure on the testes could produce the same beneficial effects in men that pressure on the ovary produced in women, he opened a ward for male hysterics at the Salpêtrière, and stated that he did not consider hysteria to be a female disease. Yet all his most famous patients, such as those paraded at the Tuesday lessons, were women.
Freud also had male patients who were hysterics. He did not propose that hysteria exclusively affected women, but he did feel that women might have traits that put them at risk. Women had more time on their hands and were therefore more prone to daydreaming, and such daydreaming could lead to pathological associations. He did not think, as Janet did, that their vulnerability was due to weakness. But once again, even though Freud did not consider this to be an exclusively female problem, he did not help to dispel that impression because every patient detailed in Studies in Hysteria is female.
More than a hundred years has passed since Charcot’s and Freud’s hysterics. Men have had hysterical epidemics, but they were given labels of their own. Neurasthenia was the first, but British men returning from the First World War also exhibited many of the signs of Charcot’s hysteria. A new diagnosis was created for them: shell shock. Even allowing for these outbreaks of male hysteria, the perception that it is a female illness has not changed very much at all to this day.
I will always remember a day in my early training as a neurologist when this was brought sharply into focus for me. The team I worked with had just seen a young man with bizarre muscle spasms in one foot. The problem had followed a minor injury to his leg that had occurred at work. He had not worked since. Gradually, his foot had contorted into a position that made it difficult for him to walk. He had been extensively investigated. Tests were always normal. When we reached the point where there was nothing more we could do I wondered if the problem might be psychosomatic. In response, the middle-aged male consultant I worked for had turned glibly to me, and to the group of female medical students with me, and announced that the problem could not possibly be psychogenic since the patient was male and psychogenic disorders were disorders of young women.
Even now, years later, as an experienced consultant, this view comes up time and again. I once made a firm diagnosis of dissociative seizures in a middle-aged man and, in reply, the male consultant who had asked for my opinion in the first instance made it clear that I could not possibly be correct.
‘Men don’t get psychogenic seizures,’ he stated, reflecting almost exactly, I thought, the words of the French physician Jean-Baptiste Louyer-Villermay in 1819: ‘A man cannot be hysterical; he has no uterus.’
Perhaps Louyer-Villermay was simply being literal about the meaning of ‘hysteria’ but perhaps he was demonstrating an attitude that has also been suggested as a contributing factor when it comes to the apparently female nature of psychosomatic disorders: male doctors are reluctant to make the diagnosis in men. Certainly in the eighteenth and nineteenth centuries, when doctors were almost exclusively men, and women were considered to be the inferior sex, it seems likely that this sort of prejudice had an effect. Although such attitudes are less frequent and less overt now, they do live on in the twenty-first century. Some clinical studies have shown that doctors are likely to pursue the cause of difficult to explain physical symptoms less aggressively in women than they are in men; and labels such as emotionally disturbed or histrionic are more likely to be applied to a woman than a man.
I do believe that male dominance in medicine has played its part in moulding hysterical illness, but I realise I am also being disingenuous. The majority of patients that I diagnose with conversion disorders are also women. Even when one removes the male doctor one is still left with mostly female patients. The reason is very difficult to determine.
One important factor is that women are more vulnerable to some of the traumatic events that are thought to trigger these disorders. In 2012 in England and Wales, of the 6,634 reported sexual offences committed against children, 5,156 were against girls. Similarly, adult women are more likely to be the victims of physical abuse than men. They are more likely to find themselves threatened or trapped or victimised – just the sorts of inescapable stresses that are understood to promote psychogenic illness.
An alternative theory involves differences in what is deemed to be socially acceptable in the behaviour of men and women. Women are permitted to display emotion while men must be strong. It is more socially acceptable for a woman to appear weak and to seek help. Men must simply carry on. This may result in the development of a culture where women are more likely to report their symptoms and to seek help, while men are more likely to ignore them.
Psychiatric disorders such as anxiety and depression also affect women significantly more often than men. But men do not have less stress in their lives, so on the surface the higher incidence of depression, somatic and conversion disorders in women might seem to suggest that men cope more effectively with life than women do. But perhaps that view might be changed if we also look at other gender differences. Women drink less alcohol and have fewer alcohol-related problems than men. Men are more likely to self-medicate stress with alcohol. Men are more prone to aggressive outbursts or high-risk behaviour, and are more likely to be arrested, harm their children, and have affairs. So perhaps it is not a matter of one sex coping better or complaining less, but rather a case of each suffering but differently. On the face of it, women turn their distress inward and men turn it outward.
The complexities of chronic medically unexplained illness never end. But whatever it is that makes us ill, there may be a whole other set of reasons why we don’t get better.
Peter lost his job at the age of fifty. He had worked for the same company since leaving school. He had started out driving a van and graduated to a job in sales. Peter had expected to work there until he was sixty-five and then he and Liz would retire and do the things they had been waiting to do. Peter calculated that the mortgage would be fully paid off by then, leaving them with the freedom to take their caravan around every county of the United Kingdom, something Peter had always dreamed of. Liz had her own ambitions. She had never been to America and wanted to take her grandchildren to New York.
Suddenly Peter, who had never known an idle day in his life, lost his job. He was unemployed and unemployable. He had no education and no formal training. He lived in a moderately sized town where more men were losing their jobs than finding new ones. Liz was a hard worker like her husband. She was a supervisor in a supermarket. She did not like her job much but it served its purpose. Once Peter stopped working her salary was just enough to cover the mortgage payments but left little for anything else. She increased her hours at work. She hoped it would be a temporary measure. Even then, money was short. Peter and Liz began to dip into their savings. Liz watched the New York money slip away.
Three years went by. Peter could not find another job. He had always been a proud man and now he was demoralised, sitting at home, his wife at work, his life savings depleted. Liz was still working long hours and coming home each night to a different sort of husband to the one she had married. A depressed man with all his thirst for life gone. Their relationship, which had always been strong, began to fracture. Liz was exhausted and began to feel depressed and suffer debilitating headaches. Then, at the end of a particularly gruelling day, she collapsed at work. Peter received a phone call to say that she had been rushed to her local hospital in a coma. When Liz woke an hour later Peter was by her side, her hand in his. The doctor told them that they believed that Liz had suffered a seizure.
Peter and Liz were devastated. How could their lives become even more difficult? What had they done to deserve this? They prayed for a quick recovery.
‘We’ll lose the house if I can’t work,’ Liz said.
Over the course of the next week Liz suffered several seizures and had to stay in hospital. Peter sat by her bed, he could barely be persuaded to leave her side. In time Liz was ultimately diagnosed with epilepsy and started on treatment. When she was discharged from hospital she was advised to stay off work for a further week until she felt better. With her diagnosis a lot of things began to make sense to Liz. Epilepsy was the reason that she had such difficulty coping. Epilepsy was the reason she had felt depressed.
Liz’s seizures did not come under control immediately. The doctor told her that this was to be expected. He would adjust the drugs until things improved but it could take several months. Liz was signed off from work but continued to receive full pay. Peter, who had had so little to do for so long, found a purpose in looking after his wife. After six months Liz still had not fully recovered. She was let go from work and began to receive disability payments. A social worker and occupational therapist helped Peter and Liz with modifications to their home to accommodate her epilepsy. Peter was afraid to leave Liz alone. Since he still could not find work he became his wife’s paid carer. He stopped looking for a new job.
A year and a half later when Liz was still not responding to epilepsy medication she was referred for video telemetry, and that was when I told Liz that she did not have epilepsy.
In that moment I turned Peter’s and Liz’s life on its head. The diagnosis of dissociative seizures threatened all the security that the diagnosis of epilepsy had inadvertently offered. The presence of Liz’s seizures had strengthened Peter’s and Liz’s relationship, it had allowed Liz to avoid a job that exhausted her, it had provided the family with the social and psychological support that they had desperately needed. Were I to take Liz’s seizures away I would consign her back to working long hours in an underpaid job, returning home every evening to a depressed despondent husband who resented her. Liz did not choose her diagnosis, it was given to her; relinquishing it meant relinquishing a lot.
Of course, I had changed Liz’s diagnosis but I had not cured her, and the seizures continued. That’s what I tried to tell her.
‘I’m not saying there’s nothing wrong, Liz. It’s just not what we originally thought. The seizures are still a serious problem.’
But Liz suspected that dissociative seizures would not come with the same rewards as an organic illness, and she was right. The world would care less about Liz’s suffering now that its nature was known. Her seizures were as distressing and life-destroying as they had always been for her, but others wouldn’t see them in the same way. Her disability would be downgraded. Liz was no longer sick, she was just weak. She would find her benefits under threat. Family and friends would see her differently. Snap out of it, Liz. In an ideal world Liz and Peter would get the psychological and social support that they needed and Liz might learn to find things easier and get better in time. But in the real world where only real illness counts, Liz would not necessarily get any help and might not get better.
Gain from illness might take the form of sympathy or loving care or financial reward or avoiding a problem. Most often gain is not sought, but there are gains that can hold a person unconsciously to disability. Perhaps you are not coping at work. You have a major presentation coming up and you are not prepared. Coincidentally you develop low back pain and find you have to take a few days off work. Your boss does your presentation for you. Inadvertently your illness has been rewarded. What happens the next time there is something at work that you just cannot face?
Your husband rarely stays home on a Sunday. Against all your protestations he usually spends the whole day playing golf and you are left on your own with the children. One weekend you don’t feel well and have to stay in bed. Unusually he stays home to help. Illness has achieved what nothing else could.
Such rewards, whilst not consciously planned, can reinforce illness. Sometimes, for everything that is lost through illness, there is also something that is gained. Even disability can be difficult to relinquish if the gain is sufficient. But this too is an unconscious process.
For a long time after I first started to see patients with conversion disorders I believed that if I could understand the three factors of vulnerability, trigger and gain, I’d have the key to the patient’s recovery. In many cases this has proven to be true. Where it has been possible to understand the cause and the maintenance factors it has been far easier for the patient to accept the diagnosis, to move forward to treatment and to recover. Like Jo.
So many of my patients are young women that when a mother stopped me in the corridor of the hospital and asked me if I remembered her daughter I couldn’t bring her to mind.
‘Her name is Jo,’ she told me.
I felt discomfort creep over me, announcing itself in the form of a red rash starting at my neck and spreading up my face. I just couldn’t remember.
‘You saw her about six years ago.’
‘I’m sorry …’
‘I’m here with my other daughter today,’ she said. ‘She’s in the epilepsy clinic. I came to find you to tell you about Jo. You saw her in the video-telemetry unit and diagnosed her with non-epileptic attacks.’
Now I had a tightness in my chest, an undeniable feeling that my day was taking a downward turn.
‘I just wanted to tell you that you changed Jo’s life. You really helped her. I wanted to thank you.’
My chest released a sudden breath, I felt my muscles relax and there was a real chance that a tear would escape there and then. I had been sure that something awful was going to happen but it was the opposite. The relief combined with how pleased I felt took over for a moment, and I didn’t take in everything she said next.
‘She gave up her job once she realised it was making her sick. She decided to become a physiotherapist. She’s just qualified. She’s so much happier. She lives in Edinburgh now. She really wanted me to let you know how well she was doing.’
‘I’m so pleased. Thank you so much for taking the trouble to tell me.’
After she had gone I walked back to my office with a feeling of my heart fluttering, a secret smile on my face. But I still didn’t remember Jo. Sitting in my chair I tapped her name into the computer. I only needed a small reminder for it all to come back to me.
Jo had come to the casualty department with a prolonged convulsion. The casualty officer had given her diazepam. Jo had been diagnosed with epilepsy six months before. Since then she had suffered ten seizures. Her sister had a diagnosis of epilepsy and since it can be genetic it was assumed that that was the cause of Jo’s seizures. All her tests had been normal but that is frequently the case in somebody with epilepsy in between their seizures. Jo had been prescribed an epilepsy drug. That didn’t seem to have helped because the seizures began to occur more frequently, leading to this presentation to the casualty department. A neurology registrar was called. After seeing Jo he concluded that she needed a second epilepsy drug and he provided her with a prescription and prepared to send her home. Had Jo been allowed home her story might have ended very differently, in years of drugs in escalating quantities before somebody perhaps would question the original diagnosis. Jo’s mother would credit me with making her better but what happened next was probably much more important. It was the policy of the hospital to ask the epilepsy specialist nurse to meet with patients like Jo before they went home. The nurse would discuss the diagnosis and treatment in more detail and counsel Jo, if it was needed. But after her discussion she did not let Jo go home, she rang me instead.
‘I know the registrar said this girl has epilepsy, but I don’t think so.’
‘Why not?’
‘I can’t put my finger on it, it just sounded wrong for epilepsy. Can we bring her in?’
This is medicine as an art once again. There is more to a story than the facts. There is the manner in which it is told. A scientific study published in the journal Epilepsy & Behavior in 2009 examined the linguistics of how people describe their seizures, and it found a distinct difference in the way people phrase their description between those with epilepsy and those with dissociative seizures. A specialist linguist can thus listen to a tape of a consultation and help predict the diagnosis without knowing anything about epilepsy. Or a specialist nurse, experienced and empathetic, can talk to the patient in the casualty department and do the same. I trusted her judgement.
‘Okay, we’ll admit her for some video telemetry.’
Three days later we had seen two of Jo’s seizures and the diagnosis of dissociative seizures was made. The next stage in the process was not mine either, although I would be given the credit six years later. Jo agreed to meet the psychiatrist. In the casual in-between bits of conversation I had already gleaned some of what might be upsetting Jo but the psychiatrist would help us to see the full story.
Jo was twenty-five, a beautiful and engaging girl. She was a photojournalist working for a major newspaper, a huge achievement for a person of her age. She lived with a group of friends in London. She had grown up in London and so her family lived nearby. Jo’s sister, Martha, had developed epilepsy at the age of thirteen. Throughout Martha’s teens and into her early twenties she had suffered frequent seizures. Jo was three years younger and her sister’s illness had occupied a prominent place in her childhood. Eventually Martha’s epilepsy had come under control but she was still closely monitored.
Jo was the lucky one in the family. She did not have epilepsy. She was both creative and clever. She did not disappoint her parents. Throughout her school years she had loved photography, teaching herself and setting up her own darkroom in part of the family’s garage. After leaving school she trained formally in media photography before spending a year travelling. She returned with a huge portfolio. She immediately created her own website and began to bombard local and national newspaper editors with her CV. She had many rejections before she received a letter from a major newspaper asking to meet her. Ultimately they offered her an internship with a view to more permanent employment if she did well.
The warning signs were there on day one, but Jo had underestimated them. She had just been introduced to her department when she heard one man whisper to another, ‘She has the skirt for the job.’
For the first three months Jo hid the feeling of discomfort that she felt while at work. She had never had any difficulty getting on with people so she assumed that things would improve once people got to know her. Her colleagues spoke to her warmly so, when her unease did not lift, she convinced herself that she was imagining it. As time progressed, however, it became impossible to ignore the fact that something was not right. Her photographs were constantly criticised. As a very junior member of the team she did not expect that she should always be praised for her work, but it seemed that she could do nothing right. A male intern who had started work at the same time as Jo had several of his photographs used in the newspaper. Jo didn’t feel she could complain. Perhaps her work was simply not as good as that of her fellow intern and she did not have the judgement to see it.
One day when Jo felt certain that she had produced publishable work that had been overlooked once again, she asked the editor about it. She had not meant to be derogatory but in the course of a long conversation she found herself pointing out a published photo taken by her male colleague and asking how it was superior to her own.
‘No need to be catty, young lady. Jealousy is not an attractive quality.’
Jo did not like what this sentence suggested to her and she answered strongly.
‘I’m not being catty, you are comparing my work to the others in the department and I am doing the same. I’m not behaving any differently to you. I am just asking you to help me by pointing out what makes one photograph better than another.’
He didn’t listen. The conversation ended with a firm suggestion from her editor that she adjust her attitude. There was a distinct deterioration in the situation after that. Colleagues began to exclude her from meetings. The more challenging or interesting assignments were offered to others and she felt herself slowly drift into the background. But this was the career that Jo had dreamed of for years, so she would not give up that easily. She began to work twice as hard. It didn’t help.
One morning she came to work at seven to attend a weekly meeting held at that time, but found the office empty. When people began coming in later, she discovered that the majority of the department, interns included, had spent the previous evening together at a local restaurant, a bonding exercise that had been a tradition for many years. They had postponed the morning meeting as a result. As soon as Jo realised that she had been excluded she knew she was going to cry. She had gone to the bathroom, berating herself for caring. A secretary who bumped into her in the bathroom let her boss know that she was upset. He called her to his office later that day.
‘Outbursts of emotion in the workplace are really not appropriate.’
After that Jo felt she was drowning. Everything she did or said seemed to be wrong. And yet even though she knew that, logically, she would not be kept on when her internship came to an end, she could not give up the hope that fairness would win out and hard work would eventually be noticed. She feared that if she didn’t turn the situation around she would get a bad reference and her career would be over before it had started. Her family had been so proud of her achievements that she could not bear the thought of telling them how badly things were going. She could not stand to think that the people at work, who were not giving her a fair chance, might win. She had an overwhelming feeling of being trapped. One day, getting ready to go to work, she had her first seizure.
It was a credit to Jo that once we told her about her diagnosis of dissociative seizures, it did not take long for her to understand that her feeling of entrapment was like something boiling over inside her, something that had to be released. She had been unable to admit what she perceived as failure to her friends and family so when the situation came to a head her body called for help on her behalf, using an expression of distress with which it had long been familiar. The psychiatrist had referred Jo for therapy and she had re-evaluated her life and made the changes she wanted to make without regard to how they would be perceived by others. My meeting with her mother told me that Jo had made the right decisions for her.
I should have remembered Jo when I met her mother because she was an example of how well things can go when the system works as it should. Not every diagnosis of epilepsy will be right – it is a diagnosis dependent on a clinical history, the evaluation of which is open to error. When it became clear that Jo wasn’t getting better on the treatment for epilepsy the diagnosis was reviewed, the correct diagnosis was made, and the correct treatment started. Seventy per cent of those with dissociative seizures continue to have seizures, particularly those who don’t get the diagnosis quickly enough or in whom no underlying cause is found or where there is no appropriate psychiatrist to provide care.
Medicine is a career that is full of highs and lows. When working with people with dissociative seizures, success stories can feel hard to come by at times. Too many patients never see a psychiatrist and too often I never find out where their story ends. Jo had recovered completely once she understood her seizures. I felt greatly heartened to hear how well she had done.
In time Camilla would also make me feel that way, but not until she came to a very difficult realisation.
Camilla remained in hospital for a further two weeks after her diagnosis had been confirmed. During that time I monitored her progress as I withdrew her epilepsy medication. She continued to struggle to believe that her seizures were not due to epilepsy but she carried her doubt calmly and with dignity. Her evenness unsettled me. It spoke of denial. I wanted her to shout at me, to give me a display of emotion that I could understand and to which I could react. But if there was something hidden Camilla could not reach it, and nor could I. If I had upset her with the diagnosis she could not feel it – or could not show it. Soon I began to worry I was wrong. And every time we met Camilla would tell me that she believed that emotions could make you ill, but it was not happening to her. It was something that happened to others.
Some somatic disorders happen insidiously with no great trauma to explain them. Some happen for a reason that is obvious and some because of something secret. Dissociation involves a separation: one part of the mind is not aware of the other, memories from the past are kept away from the present. My last meeting with Camilla would let me know how absolute that separation of consciousness can be.
Camilla had stopped all her epilepsy drugs with no ill effect. Her seizures were ongoing but there was still no evidence to suggest that any of them were due to epilepsy. On the day she was due to go home I met her and her husband for one final conversation. They sat facing me on the edge of Camilla’s bed.
‘Is there anything more you’d like to ask before you leave?’ I asked.
‘Just what I always ask,’ Camilla laughed. ‘If this is true, why is it happening to me?’
‘You know I don’t know the answer to that. It might take time to figure it out.’
‘They happen anywhere, watching the television, reading. There is no pattern.’
‘Sometimes I think it is useful to think of the very first attack. Sometimes that is the one that tells us the most. The first attack might have been triggered by something and then all of the others may have been spontaneous, not following any pattern and therefore confusing us. Your first seizure happened in Cumbria, didn’t it? Can you think of anything that happened there, even something small?’
‘I had a very successful meeting. There was nothing.’
Camilla’s husband sat by her side, her hand in his. He now seemed to wrinkle up his face and look at his wife as if he were confused.
‘Darling?’ he said.
It was not an endearment, it was a question.
‘What?’ Camilla turned to him.
‘You know that wasn’t the very first collapse?’
‘What?’ Camilla said again.
The beginning of Hugh’s and Camilla’s relationship was touching. Hugh claimed that he had known he would marry her the very first day they met. Camilla claimed that he had worn her down. They had been in the same social group throughout college and their friendship survived the dispersal of their college friends. They both took jobs in London and began to spend time together. They fell in love as Hugh had said they would. Hugh claimed that he had wanted to propose almost as soon as the relationship had begun but he had waited nearly two years out of a sense of decorum. One year after that they married.
Both Camilla and Hugh worked long hours and they decided to wait before starting a family, although both agreed that they wanted as many children as possible. However, two years into their marriage their best-laid plans were interrupted by the arrival of their unplanned first son, Henry. Camilla took maternity leave for one year and then returned to work. She loved spending time with Henry, marvelling at all the little changes. Her return to work had been reluctant.
One Saturday, when Henry was eighteen months old, Camilla had arranged to meet another mother in the park. It was a play date for Henry and a chance for Camilla to catch up with an old friend. The walk to the park had taken fifteen minutes. Sitting in his buggy Henry had chatted animatedly to himself for the whole journey.
Just at the entrance to the park Camilla had met another friend that she knew from the area. She stopped to say hello and they fell into the usual conversation about schools and day care and nannies. As she talked, Camilla could see the mother she had come to meet pushing her daughter on the swings just on the other side of the fence that bordered the park. Henry must have seen them too because he started to scream loudly and strained to be released from his buggy. Camilla told him to shush, that they would not go on the swings if he was naughty. She turned the buggy to face away from the park. Henry screamed again and arched his back and kicked his legs.
‘Better go,’ Camilla smiled at her friend and bent down to say goodbye to her friend’s child, who was by now looking precariously close to joining Henry in his tantrum.
What Camilla had not realised was that, as she turned the buggy around, she had released the brake but had not engaged it again. Henry was still wrestling to get out of his straps and as he did so the buggy began to move forward. The narrow pavement was gently sloped and it did not take long for the buggy to reach the road. At this point, if Camilla had noticed, she could still have reached the handle and pulled it back. But she didn’t notice and as the buggy rolled over the high kerb it fell forward so that Henry lay beneath it in the middle of the road. Camilla’s friend, who was facing the road, looked first. She let out a scream and lurched towards Henry. Camilla turned just in time to see the car round the bend, brake but fail to stop before her son’s buggy disappeared beneath its wheel.
‘Everything felt unreal. They say that you see disasters like this in slow motion, but it wasn’t like that. It was fast, as if the buggy had just vanished … puff.’
The driver of the car came to a quick halt. Camilla ran into the road and lay on the ground, trying to get to her child. The buggy was wedged against the undercarriage of the car. It was folded in such a way that she could not even see Henry.
‘There was so much screaming, me, my friend, the driver, that it took me minutes to realise that I couldn’t hear any sound coming from Henry.’
It took the fire brigade twenty minutes to free Henry from beneath the car. By that time Hugh had arrived, so they were both there to see the fireman’s expression as he handed the lifeless body of their child to the paramedics. Camilla and Hugh were not allowed to travel with their son in the ambulance, they followed immediately behind in a police car. Camilla was standing at the door of the emergency room watching as paramedics failed to resuscitate her son. A nurse turned to look at her and ushered her and Hugh back out to the waiting room. Half an hour later they were told that there was nothing that could be done. The doctors believed that Henry had probably died as soon as the car had hit. That night Camilla collapsed and had a seizure for the first time.
When I had asked Camilla how many children she had she had not told me about Henry. She had not mentioned him to any of the doctors or nurses she had met during any of her hospital admissions and my questions had not been direct enough to seek out the hidden things.
Camilla had not forgotten Henry, nor the day he died. Her life had moved forward, she had had two more children, but he was never forgotten. His picture was up in nearly every room of the house. She would have told us about him had we asked, but in the absence of that direct question she believed that she had dealt with her loss and so didn’t offer it. Had we asked she would have told us that she was lucky to have had Henry in her life, even if only briefly, and she was lucky to have gone on to give birth to two more healthy children when other people had none. She had not forgotten Henry but her loss was behind her. That’s what she would have said.
Until, that is, she found herself standing in a meeting and Henry had popped into her mind. The meeting had gone well. She had negotiated successfully on behalf of a mother and child whose home life was not safe. She was feeling happy until she thought of Henry.
‘I helped save that child but I couldn’t save my own.’ She pushed the thought quickly from her mind.
Five minutes later she had her second seizure.
Camilla had consigned her pain to a place in her brain that she could not fully access. She knew that she had lost a son but she had forgotten the pain of it. Her pain was locked in a box in her head. The seizures were the monster that protected that box. They were her monster and they served a purpose, and only when their secret was revealed did the seizures disappear.