Tourette’s in China: how a sufferer’s video helps public understanding and acceptance
A neurological disorder characterised by physical and vocal tics, there are a lot of misconceptions about Tourette’s syndrome. One Chinese sufferer is hoping to change that through a documentary
Afflicted with involuntary facial movements and impromptu vocalisations, Jiang Yunsheng had a difficult childhood, his teen years riddled with teasing from his peers, not to mention romantic setbacks.
His parents had taken him to Chinese medical clinics for acupuncture and herbal medicine sessions countless times, but they didn’t help stop the movements and sounds known as tics.
Six years ago, he met an American at a party in Shanghai who suggested he might have Tourette's syndrome. After extensive online searches, it finally dawned on Jiang that what had been afflicting him for nearly three decades was a neurological disorder.
Coming from Liaoning province in the northeast of China, the 35-year-old said the lack of awareness about the condition in China means many patients are not diagnosed, even in adulthood.
“There are no associations for Tourette's syndrome patients in China like those in Hong Kong and Taiwan. There’s also no data on the number of sufferers. Using the patient population data in Hong Kong and Taiwan, I gathered that there are at least three million Tourette's syndrome sufferers in China,” says Jiang.
Dr Deirdre O’Hare, a clinical psychologist from Central Health Medical Practice in Hong Kong, recently gave a talk on Tourette's syndrome at the Helena May in Central. She says one in 100 children and adolescents suffer from the condition.
“It’s a very niche and specialised disorder. It hasn’t been included in academic curricula. There’s a lot of misrepresentation in the media. Parents see the child [as] just misbehaving and think the child should be able to control the movements and sounds” he or she makes, says O’Hare.
She adds that China is even further behind in providing funds for medical research into the illness. “In countries like Australia and New Zealand, patient advocacy groups have become quite powerful. They do a lot of fundraising for research and public awareness campaigns,” she says.
Jiang’s quest to find out more about the condition in China put him into contact with many other mainland sufferers. Struck by the way Chinese patients are seen as victims worthy of sympathy, the former animation filmmaker set out to make a documentary in 2015 to portray his fellow Tourette’s sufferers in a positive light.
“There is a lot of footage online showing patients living in limbo. But my own experience of having the disorder is not that traumatic. I wanted to make a film which encourages people to embrace the condition,” he said.
After securing 60,000 yuan (US$9,180) from crowdfunding, Jiang spent six months following four patients and carers from different parts of China. He recorded the ways in which the condition may be seen as a gift rather than a curse.
“I chose these four cases out of 40 people willing to participate in the project. I didn’t want to make a tear-jerker, so I didn’t pick the miserable cases.”
In The Happiness of Tourette Syndrome, an 18-year-old girl from Hunan living in Guangdong transforms from a timid girl, who had kept her condition secret for years, into an outspoken activist doing publicity campaigns for people like herself.
A 40-year-old employee in a state-owned enterprise wrote an uplifting book about her quest to help her son cope with the condition.
A mother from Hangzhou with two sons with the syndrome strove to suppress her children’s symptoms with harsh discipline, only to discover that acceptance and a conciliatory approach are more helpful.
After the film premiered in Pudong Library in Shanghai and was broadcast through Chinese online media in 2016, Jiang set up a support group, Home of Tourette Friends, to help rectify the approach many Chinese parents adopt.
“The parents just want to cure their children’s condition. But it is incurable. Under pressure from parents, Chinese doctors prescribe Western psychiatric medicine to suppress their symptoms. I saw several cases of children becoming obese and dealing with poor memory and narcolepsy after taking drugs,” says Jiang.
Doctors will consider prescribing medication for those patients who are leading compromised lives due to severe symptoms, says O’Hare.
“In a country like Japan, it is very important [for people] to fit in and not to be eccentric or strange. People with schizophrenia prefer to be heavily medicated than to have obvious symptoms. The same thing applies to Tourette's syndrome.”
There are alternatives to medication, she adds. One is the newly developed comprehensive behavioural intervention for tics, or CBIT. Children must be at least 10 years old to have it as it is quite difficult to teach the child how to manage their tics. For instance, if a child blinks his eyes a lot, a therapist will ask him to try to hold them wide open, instead.
Jiang, who also suffers from obsessive-compulsive disorder, trains himself regularly to control his symptoms.
“I sometimes want to close my eyes when cycling, but I have learned to suppress the urge. If you know its properties, Tourette’s syndrome is a monster you can tame. Exercising also helps a lot. When I get ill, the symptoms worsen.”
O’Hare says that two-thirds of Tourette’s patients will see a big improvement by the time they reach early adulthood: “They won’t get tics as frequently or as severely.”
Jiang is now a professional filmmaker making another documentary – this time about music therapy. He credits Tourette's syndrome with bringing him a new career.
“Through my film, patients and carers can learn to embrace imperfections,” he says.
O’Hare agrees that the film can help remove the stigma and stereotyping associated with Tourette’s syndrome.
“We have to help the child to understand that there’s nothing wrong with them … It’s just a little hiccup in the brain that causes the uncontrollable tics. It doesn’t have any impact on intellectual function and academic performance. In fact, some evidence suggests some patients can have above-average intelligence.
“Most people with the syndrome go on to have very successful careers, get married and have children,” she stresses, adding that’s more likely to happen if they are surrounded by people who understand their condition.