It’s been described as the one of the greatest medical mysteries of all time. All of a sudden, a patient is struck down by blindness. Others are paralysed. Some endure violent fits.
But when doctors do all the usual tests, they struggle to find anything physically wrong with them. There is nothing wrong with their eyes. They don’t have epilepsy. When they sleep, their paralysis disappears.
It is a condition thought to affect up to 30 per cent of people referred to neurology clinics, and others not yet diagnosed.
“There are thousands of people out there right now that probably have this disorder and don’t know it,” says Professor Richard Kanaan, from the The Florey Institute of Neuroscience and Mental Health.
The condition is named conversion disorder or a type of functional neurological disorder, but you might know it better as hysteria, a now defunct medical description of a phenomenon where male physicians theorised that a woman’s womb would wander about the body, causing all sorts of havoc.
Some also believe that conversion disorder explains cases of shell shock in traumatised WWI soldiers – the men pulled from the trenches, trembling and struggling to see, who were sometimes tried and punished for their “cowardice”.
A soldier comforts his shell-shocked friend while they wait to be evacuated from Papua New Guinea during World War II. Photo: Australian War Memorial.
In modern times there has been an enduring theory that conversion disorder’s physical symptoms are often prompted by stress or trauma.
But the condition has long been stigmatised and doubted, even by some in the medical profession, who believed sufferers were making it up to avoid challenging situations (for example, to escape near-certain death in the trenches).
Dr Kate Gill, who has been diagnosed with functional neurological disorder and is president of support group FND Hope Australia, said she still faces scepticism.
“If people see you walking your dogs normally one day and then walking with a spastic gait the next, it’s hard for them to understand it’s real,” she said.
Dr Gill, 44, said she first experienced symptoms in January 2013 when she lay down not feeling well and then found she could not get up or move the left side of her body.
“It was the most bizarre and frightening experience,” she said.
“I was rushed to emergency… initially the neurologists diagnosed me with a stroke after they saw a mark on the brain. It took several years before I found out the correct diagnosis.”
Kate Gill was a competitive line dancer before she fell ill. Photo: Supplied
The first attack came when Dr Gill was moving house and physically pushing herself to the limit with gym classes and dance championships. The severe symptoms of left-side weakness still flare up if she is sick or weary.
Psychiatrists who work with conversion disorder patients have no doubt the symptoms are real, although research into the mechanism of the disorder could be misunderstood.
Professor Kanaan said research he’s been involved in found many patients fall sick when the sickness can provide escape from stress – what’s described as a “secondary benefit”.
One patient was a woman who collapsed, had a fit and was left on the ground unable to move when her partner of 12 years broke up with her. They knew she was not truly paralysed because she could move her leg when sleeping, and Professor Kanaan theorised the sudden illness may have the secondary benefit of making her partner less likely to leave her.
Brain scans showed that when she thought about the breakup there was a lot more activity in some parts of the brain, but less in the motor cortex, Professor Kanaan said.
“The motor cortex is the bit which controls in this case her right arm and right leg. That’s the bit that is responsible for her symptoms. She is left with the paralysis.”
Dr Andrew Court, a psychiatrist and paediatrician at the Royal Children’s Hospital, said he also sees child patients overwhelmed with stress who experience seizures, blindness and lose the ability to walk.
Worries about school performance, concerns about friendships and bullying, and parents breaking up are often the triggers. One of his recent patients, whose symptoms were so bad she needed a wheelchair, had endured a series of traumas including a sexual assault, and was too worried to tell her parents because the offender was a family friend.
He said treatment often involved getting children to confront their anxieties, even if it meant going to school while still in the throes of physical symptoms.
“The danger of allowing long-term avoidance is conversion disorder could keep popping up in their life,” he said.
But he stressed the disorder is “unconscious and not put on”.
Brisbane neurologist Dr Alex Lehn of the Mater Centre for Neurosciences warns against oversimplifying the causes of functional neurological disorders.
He sees about 100 people patients each year and believes it is generally multiple factors (biological, physical, psychological and social) that “push people over the line”.
He said while childhood abuse is often linked to the disorder, it was not as common as people might think, and that “you don’t need secondary gain to get functional disorder”.
“In 30 per cent of patients – and you can dig as hard as you like – you won’t have previous trauma.”
Dr Lehn said while not everyone had a functional neurological disorder, everyone has probably experienced symptoms of it during their life – like a child who during a school play freezes a soon as they get onto the stage, and can’t get a word out.
“Functional symptoms are super, super common – and they live in all of us,” he said.
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