A traumatised mother and the haunting proof your mind CAN make your body physically ill

FOR more than 20 years, neurologist Dr Suzanne O’Sullivan has specialised in treating patients with ‘ psychosomatic illnesses’ — where physical symptoms including pain, seizures, even paralysis, are triggered by emotional states. She has recently written a compelling account of her experiences, and how those affected can be helped. Last night her book won the prestigious Wellcome Book Prize. Here, we publish an extract...

Camilla was slight. Surrounded by a team of doctors and surgeons, she could easily have appeared diminished. But she maintained a rare sort of dignity. She had grown up well balanced and confident. after university she took a job in a City law firm. Hard work gained her high respect. She married Hugh, a college friend, and took six years off to care for their two children, then retrained to work as a family lawyer.

But on a work trip to Cumbria, Camilla fell ill. She had just left a meeting when her head felt light. a wave of nausea struck and she thought she might faint. Her right hand began to tremble. Within a minute, her left hand was trembling.

She laid her head against a wall as she felt the shaking become more violent. it spread to her legs so she was half-slipping from her chair with all four limbs flapping. Her heart was pounding.

Camilla tried to ask for help, but no words would come.

She was rushed to hospital and suffered several more convulsions. a doctor said she had suffered a seizure and that she may have a brain tumour. after six days, she was transferred to a london hospital for brain scans.

‘For six days, i believed i had a brain tumour. i was so relieved when we got the scan result,’ Camilla told me. ‘ and now . . . i wish it had been a tumour.’

None of the brain-scan results had been conclusive. But eventually the doctors were convinced she had epilepsy and started her on drug treatment. But Camilla’s seizures kept occurring, increasing in intensity and stealing her independence.

She’d been referred to me because a colleague thought her seizures were not epileptic, but psychological. Camilla’s neurologist had become concerned by the condition’s intractable nature and referred her for video telemetry, a test that diagnoses the cause of seizures. The patient is restricted to a hospital room where they are under constant video surveillance.

Small painless metal discs attached to their head make a round-the-clock recording of their brainwave — or EEG — pattern.

DuriNG that admission, Camilla suffered several seizures. However, there were no changes in her EEG pattern that would suggest epilepsy. The neurologist told her: ‘i’m sorry, but i think the original diagnosis was wrong.

‘The attacks we have seen are not due to epilepsy; they are nonepileptic attacks which have an emotional cause.’

Camilla’s seizures were psychosomatic. a psychosomatic disorder is a condition in which a person suffers from significant physical symptoms — causing real distress and disability — but there is no disease or physical cause that can be identified by medical tests or physical examination.

They are medical disorders like no others. They don’t obey any rules. They can affect any part of the body.

in one person they might cause pain, but psychosomatic illness can also manifest in more extreme ways: as paralysis, convulsions or almost any sort of disability.

Psychosomatic disorders are physical symptoms that mask emotional distress. The 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.

up to one third of people seen in a general neurology clinic have neurological symptoms that can’t be explained. an emotional cause is often suspected.

it is common for patients to react angrily when they are told that the cause of their symptoms is psychosomatic. This is often a defence mechanism, as they try to protect themselves against the fact that their physical symptoms do not have a physical cause.

anger will often dissipate with time. But patients also often go into denial, refusing to accept the cause of their symptoms is emotional. This is a far greater barrier to recovery.

Camilla had been referred to me for a second opinion because she would not accept her neurologist’s conclusion.

i have become a specialist in this area. in my first consultant post 20 years ago, i ran a service whose main purpose was to investigate people with epilepsy who were not getting better with standard treatment. it transpired that 70 per cent of the people referred to me did not have epilepsy. Their seizures were occurring for psychological reasons.

i admitted Camilla for further video telemetry and studied the results. i sat with her and Hugh, and said that i agreed her seizures were psychosomatic.

She responded by saying: ‘i still don’t believe it. i’m not that sort of person. i’m happily married with two beautiful children.

‘my life has never been so full or rewarding. i’ve had times in my life way harder than now, why didn’t it happen then?’

Camilla had fixed me with an emotionless gaze throughout our conversation. She challenged me to back down: ‘Do you understand how humiliated this makes me feel?’

For Camilla this diagnosis was more like an insult than an explanation. i tried to reassure her, saying: ‘This could happen to anyone. it’s an illness, it needs attention and treatment.’

One extreme way that the body can respond to emotional upset is to produce blackouts and convulsions, such as those Camilla was experiencing. This sort of convulsion is known as a dissociative seizure.

The seizures are real, but they arise in the subconscious rather than being due to a brain disease.

Dissociation means that a sort of split has occurred in the mind. Your conscious mind separates from what is happening around you. That detachment means that one part of you doesn’t know what the other is doing.

it’s not deliberate. You can’t make yourself unconscious any more than i can deliberately blush or produce tears.

When a patient receives a diagnosis of dissociative seizures within days or even weeks of their onset, their seizures often disappear almost the instant the diagnosis is delivered.

But Camilla’s pattern was set. She had lived with the belief of a diagnosis of epilepsy for nearly two years. Now that diagnosis was being taken away.

‘i need to keep you in hospital while i withdraw your epilepsy drugs,’ i told her. ‘Can i ask that you do one thing while you’re here? Will you see the psychiatrist, just to explore all the avenues?’

‘But nothing is bothering me,’ Camilla replied.

‘You may be right, but there is very little to lose by having one meeting,’ i said.

Camilla continued to struggle to believe her seizures were not due to epilepsy, but she carried her doubt calmly and with dignity.

Her evenness unsettled me. i wanted her to shout at me, to give me a display of emotion i could understand and to which i could react. But if there was something hidden, Camilla could not reach it, and nor could i. ON

THE day she was due to go home, i met her and her husband for one final conversation. ‘ is there anything more you’d like to ask before you leave?’ i asked.

‘Just what i always ask,’ said Camilla, laughing. She continued: ‘if this is true, why is it happening to me?’

‘Sometimes i think it is useful to think of the very first attack,’ i replied. ‘Sometimes that is the one that tells us the most. it might have been triggered by something.

‘Your first seizure happened on a work trip 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.’

at that point, Camilla’s husband seemed to wrinkle up his face as if he were confused.

‘Darling,’ he said. ‘You know that wasn’t the very first collapse?’

Two years into their marriage, their life was interrupted by the unplanned arrival of their first son, Henry. Camilla took a year’s maternity leave. She loved spending time with Henry, marvelling at all the little changes. Her return to work had been reluctant.

One Saturday, when Henry was 18 months old, Camilla had arranged to meet another mother in the park. at the entrance, she stopped to say hello to another friend.

as she talked, Camilla could see the mother she had come to meet pushing her daughter on the swings. Henry must have seen them, too, because he started to scream and strained to be released from his buggy.

Camilla told him to shush and turned the buggy to face away from the park. as she said goodbye to the

first friend and her child, the buggy rolled into the middle of the road and toppled over, trapping Henry beneath.

Her friend screamed and Camilla turned to see the buggy disappear beneath the wheels of a car.

It took the fire brigade 20 minutes to free Henry. At the hospital, Camilla stood at the door of the emergency room watching as paramedics failed to resuscitate her son. That night she 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 forgotten him, but her loss was behind her. That’s what she would have said. Until, that is, she found herself standing in a meeting in Cumbria 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. Her pain was locked in a box in her head.

The seizures protected that box. Only when their secret was revealed did the seizures disappear. It took time. The day of our conversation she had several more attacks, but in the weeks that followed they became fewer.

Camilla later underwent cognitive behavioural therapy and within two months made a full recovery.

DR SuzANNE O’SuLLiVAN is a consultant in clinical neurophysiology and neurology at the National Hospital for Neurology and Neurosurgery in London. Extracted from it’s All in Your Head: True Stories Of imaginary illness by Suzanne O’Sullivan (Vintage, £8.99). © Suzanne O’Sullivan 2015. To order a copy at £7.19 (offer valid to May 3), call 0844 571 0640 or visit www. mailbookshop.co.uk.