Centuries ago, doctors may have said Rachael had ‘hysteria’. They still aren’t sure what causes her condition

Rachael Dodd sat at her desk, staring at her computer screen as random letters in the body of an email vanished from sight.

Tiny blank spaces populated the text like a reverse join-the-dots. Dissecting words, severing messages in a crude facsimile of what was happening within her malfunctioning brain.

Rachael Dodd, whose FND came on suddenly in 2021, with her dog, Lenny.Credit: Louise Kennerely

“How is this happening?” the 31-year-old thought in disbelief during this strange occurrence in 2021 that she would come to call her first “episode”.

Dodd started “going in and out of memory”, having no recollection of conversations or interactions.

She must have had a stroke, her horrified family thought. But at the hospital, a neurologist told her it was an aural migraine. She was fine. Go home.

“I said I don’t feel fine. I feel uncoordinated. Things aren’t working well,” Dodd said she told the doctor.

Her “big episode” came two months later. As Dodd sat on her couch, she felt her right side grow heavy and called for her husband, who found her slumped over, the right side of her face drooping. Dodd couldn’t move her right arm or leg. She was slurring and stuttering, unable to form sentences.

Staff at Sydney Adventist Hospital performed a pin-prick test: she felt nothing. But her CT scan, MRI and echocardiogram were all clear.

This time, a neurologist dug deeper.

“He didn’t dismiss me,” Dodd said. “He took the time to listen and investigate.”

Dodd has functional neurological disorder (FND): a modern “hysteria” at the centre of a medical misogyny Venn diagram.

FND is predominantly diagnosed in women (about 70 per cent of all cases). It manifests as alarming, unexplained physical symptoms and doesn’t appear on the usual scans. It is under-researched, poorly understood, and patients report being humiliated and dismissed as hysterical hypochondriacs, liars and malingerers.

FND can manifest as spontaneous seizures, movement disorders, pain, tremors, speech, vision and hearing problems, extreme slowness and fatigue, and loss of the sense of touch. Symptoms can seem to emerge suddenly, disappear and return with no warning.

A review by international brain science and psychiatry experts found what would be described as FND today had been depicted as “moral failing, demonic possession, hysteria or witchcraft” up to the 19th century, with “uterine repositioning” a proposed treatment historically.

“There is so much stigma for people with FND,” said UNSW senior neuropsychiatrist Dr Adith Mohan, who leads the Mindgardens FND clinic at Sydney’s Prince of Wales Hospital.

“This is a real condition. It is not feigned or imagined. People have real symptoms that they have no control over.”

Unlike many neurological conditions that are a disorder of brain structure, FND is a disorder of brain networks: the way these networks process information.

Research studies using functional neuroimaging have shown changes in the connections between different brain regions in FND patients.

It is the second most common diagnosis neurologists encounter – after headaches or migraine – and affects between four and 12 people per 100,000 each year nationally.

The cause of FND is a mystery. Childhood trauma is a major risk factor. About 70 per cent of people with FND have a history of childhood sexual abuse or developmental violence.

The median delay in diagnosis is eight years, and more than half of FND patients can’t access treatment.

“There is a huge unmet need, and a lack of investment in services and research,” Mohan said.

After every episode, Dodd must relearn basic skills: using a knife and fork, throwing a ball, and writing. It took her six weeks to relearn to walk.

“One moment I’m fine, and the next I’ve lost function down my right side and have to sit there,” she said. “I think of my brain like a computer that overheats, shuts itself down and then has to reboot. When my brain is overworked, it stops sending messages to parts of my body that it thinks are not required.”

An MRI brain scan.

She learnt how to conceptualise FND and reroute these errant messages at Mindgardens FND Clinic, which was a finalist in the 2024 NSW Premier’s Awards.

Mohan leads the team of a physiotherapist, occupational therapist and clinical psychologist who adapt a six-week intervention tailored to each patient’s symptoms and goals, whether it’s being physically active or caring for their children.

“Some people will get completely well, but many will continue to have some symptoms,” Mohan said.

Of its 100 patients, 41 per cent couldn’t work due to their symptoms at referral. After intervention, 65 per cent of these patients could go back to work, Mohan said.

Dodd said she would never fully recover, but she can recognise the signs, have fewer episodes, and is back to walking her dog, Lenny, and teaching martial arts.

“You can manage a new normal, and you realise life is what you make it,” she said.

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