In your head: Imaginary illness

What if your very real symptoms – migraines, pains, even seizures – were the signs not of a physical illness, but of emotional distress? Anita Chaudhuri talks to neurologist, and winner of the Wellcome Book Prize, Dr Suzanne O’Sullivan about psychosomatic disorders


In your head: Imaginary illness

We’ve all experienced situations where an overactive mind has wreaked havoc on our bodies, be it the dry-mouthed adrenalin rush before public speaking, a blushing, awkward dinner with a date or the inability to stem tears while watching a weepie on TV. But what happens when this mind-body connection gets so overloaded that it results in debilitating physical symptoms, from chronic fatigue, headaches and nagging pain, to more dramatic conditions such as seizures and paralysis for which no medical cause can be discerned?

Suzanne O’Sullivan is a neurologist who began her medical career specialising in epilepsy. It became apparent to her that non-epileptic seizures, known as ‘dissociative seizures’, accounted for one in five patients in her clinic. As she gained more experience, she began to explore so-called psychosomatic illness more deeply, and has written a book on the subject It’s All In Your Head: True Stories Of Imaginary Illness (Chatto & Windus, £16.99), winner of the 2016 Wellcome Book Prize. 

Psychosomatic disorders are physical symptoms that mask emotional distress. A World Health Organisation Study in 1997 found that as many as 20 per cent of people had at least six medically unexplained symptoms. The Diagnostic And Statistical Manual of Mental Disorders, the psychiatrist’s bible when it comes to diagnosis, does not include the term ‘psychosomatic illness’, preferring Somatic Symptom Disorder.

There is a big difference between somatisation and Somatic Symptom Disorder, however. Somatisation is when a person has physical symptoms in response to stress or emotions. ‘We all somatise at times; it’s normal,’ explains O’Sullivan. ‘After a hard day at work, it wouldn’t be unusual to have a headache. Personally, if something anxiety-provoking is coming up, I tend to feel dizzy. Another person might get palpitations or an upset stomach before a big day.’ Where things get tricky is if you don’t move on from this and instead become obsessive or anxious about the symptoms. ‘A somatising disorder has to result in significant disability and affect your life so you start accommodating that symptom.’

Such symptoms can affect any part of the body. ‘The behaviour surrounding the symptom is key, not the symptom itself. 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. But it isn’t enough just to experience pain or fatigue; what is important is that the person is disabled by it and it is medically unexplained.’

In her book, O’Sullivan describes case studies including a man who experiences paralysis on his right side after he noticed a lump on the right side of his head and was convinced he had a brain tumour. Another man who was convinced he had MS was forced to give up work and be confined to a wheelchair, and a woman became blind overnight, although no nerve damage to her eyes could be detected. In every case, the cause was not disease, but the attempt of the subconscious mind to keep the person safe from emotional upset.

Physical responses 

‘I’ve met 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 be wheelchair-bound, rather than experience the anguish inside them,’ O’Sullivan says.

So what might typically trigger this type of physical response? ‘Often there isn’t a single cause; it’s more an accumulation of little things – things that make you feel trapped and that you can’t escape, such as a bad marriage, children not performing at school or the fear of losing your job. In a large percentage of people, we never identify a clear cause.’

In cases such as chronic pain or fatigue, the cause may be behavioural. If you grew up in a family where attention is paid to every minor ache and pain, that might have an impact. ‘Or it might be psychosocial. Illness can sometimes be a better way of explaining failure, marriage breakdown and difficulties in life than alternative explanations. For others, they may experience social anxiety and illness gives them an excuse not to face these social difficulties.’

In more extreme situations, like dissociative seizures or paralysis where people have become suddenly disabled, there tends to have been major trauma, sexual abuse or the sudden loss of a loved one. One of the most shocking stories in the book concerns a woman who suddenly started having seizures. It emerged that these were triggered by a tragic accident involving the loss of her young son years earlier. 

Unlike other medical specialities that have a high volume of patients with unexplained symptoms (rheumatology and gynaecology for example), neurologists are uniquely equipped to measure symptoms objectively. ‘If someone complains of weakness in their legs and if that condition is due to brain disease, not every muscle in the leg will be weak; it takes on a pattern that the subconscious mind is not able to reproduce. Also, if someone is unable to move their legs, but then I test their reflexes and they are normal… well, I know our reflexes are not open to subconscious influences.

This helps us to assess what’s going on,’ says O’Sullivan. This is very different to, say, a patient describing degrees of pain to a rheumatologist. Pain can’t be measured; only the individual can report how much pain they are in. But a neurologist can run tests on the nervous system. 

To illustrate how ingenious, yet ultimately limited, the subconscious mind is, O’Sullivan talks about the man with a ‘brain tumour’ on his right hand side. Alas the man – or rather the man’s subconscious – did not know that the right side of the brain controls the left side of the body. ‘The illness a person manifests is the illness they can imagine, because that’s all they know. The subconscious can’t reproduce accurate organic signs because it doesn’t know what they are.’

O’Sullivan describes a number of cases involving dissociative seizures, an area where technological advances via the field of video telemetry can monitor brain activity during a seizure. ‘Quite simply you can’t be unconscious and have a normal waking EEG [test for electrical activity in brain], so this is a very reliable test. It’s incontrovertible evidence.’

Frequently, patients are distressed to be told the cause of their symptoms is psychological and refuse to see a psychiatrist or psychologist. In many cases, after such diagnosis, their symptoms travel around the body, known as the ‘chameleon’ effect; as soon as one diagnosis is ruled out, the first complaint will magically disappear only to be replaced by a new ailment. ‘It’s another form of denial,’ says O’Sullivan. ‘If I provide evidence that your seizures are not due to epilepsy, particularly when a patient has a transient illness caused by a problem that doesn’t relate to major trauma, symptoms will move around the body. Many people I see will have a longstanding history of medically unexplained problems such as chronic fatigue or Irritable Bowel Syndrome.’

Particularly female

Interestingly, more than 70 per cent of patients with dissociative seizure or chronic fatigue are female. O’Sullivan traces this back to the ancient belief that ‘hysteria’ was a medical condition caused by disturbances in the uterus. ‘What triggers these disorders tend to be things women are more vulnerable to – sexual assault or being in trapped situations like a bad marriage. Men suffer in different ways; they abuse drugs or alcohol, or get into fights. It’s a different way of manifesting distress, whereas women may turn their pain inwards.’

Modern society likes the idea that we can think ourselves better, but not the extent to which we have the power to think ourselves unwell. It is the unwillingness to accept a diagnosis that makes O’Sullivan’s job difficult. ‘It should be good news,’ she says. ‘Sadly, people don’t always take it that way. But it’s a relief because you have no underlying disease, which means you have the potential to be better, and take back control.’

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