Living with Tourette's

John Davidson

John Davidson appeared in a BBC documentary in 1989 about his daily battle with Tourette's syndrome. Here, he talks about how he copes with the condition, growing up with Tourette's and building self-confidence.

"John’s Not Mad" was a BBC documentary featuring John as a lonely 16-year-old boy with such severe Tourette's syndrome (TS) that he was too scared to venture outside and face people.

Viewers saw how his uncontrollable (sometimes foul-mouthed) outbursts and violent body jerks prevented him from leading a normal life. The documentary highlighted a much-misunderstood condition, which affects 300,000 people in the UK.

“The BBC documentary changed my life tremendously due to the public awareness it created,” says John, a community worker from Galashiels, Scotland, and a TS spokesman.

“I felt that people realised I wasn't insane, and that I was a decent kid who unfortunately had this misunderstood condition. I then had the confidence to walk down the street without feeling I was being watched and laughed at.

“Most importantly, it raised awareness of TS and has encouraged other people to get diagnosed. It's also helped me make many friends.”

John has vocal tics, including coprolalia (unintentionally using bad language). Coprolalia is one of the most well-known aspects of TS but it affects only 10% of sufferers.

Nervous system

TS is a condition of the nervous system, and there's no cure. Symptoms usually appear in childhood. Some symptoms disappear by the age of 18 but the condition stays throughout the person's life.

TS causes involuntary movements and involuntary noises, called tics. Vocal tics can range from coughing or throat-clearing to the involuntary utterance of whole words or phrases. During a tic, a person is fully aware of their actions but can't stop, though they may be able to suppress them temporarily.

People with TS are of usual intelligence, but may have educational difficulties due to poor concentration. If they're not given appropriate help, they can become frustrated, withdrawn or do poorly at school.

“Growing up with TS was very difficult,” says John. “I believed I was different from everyone else because of the involuntary symptoms.

“I often felt unloved and unwanted by family and friends. I felt that I was a hindrance to the rest of my family.”

Many people with TS lead normal lives. Others find that the condition, and people's prejudices about it, make it difficult to get jobs or form relationships.

“I was very self-conscious about my condition, especially when all I wanted was to fit in with my peers,” says John. “I was often paranoid about everything and everyone around me. At times I felt very alone.”

 

'Be open and honest about how you feel in different situations'

John Davidson

Coping mechanisms

Although public acceptance has made John feel much more comfortable in society than he did when he was 15, day-to-day life is still very difficult.

“My self-confidence goes up and down a lot. It tends to increase when I have good friends and lots of support around me, especially from close family,” he says.

“Having constant reassurance helps tremendously, as does getting lots of positive feedback about achievements.”

John generally has fewer tics now than when he was a teenager. But certain social situations, such as going to the supermarket, still make the tics worse.

He says that each person with TS must develop their own ways of coping, with the help of medical experts.

“At school I used to take 10 minutes time out from the class when I felt stressed and ‘ticcy’. Sitting next to a door helped me in the classroom setting as I could easily escape if I needed to,” he says.

“I often sit tapping my fingers and tapping my foot, which helps to alleviate the tics and gives me something to concentrate on.

"In my current work situation I find it helpful to have somewhere quiet to go and gather myself.”

John does relaxation exercises at home, attends cognitive therapy and takes medication to lessen the tics. But he knows that Tourette's will always be part of his life.

He says the best and most effective coping mechanism is understanding and patience from others around you.

“Be open and honest about how you feel in different situations. It helps others to understand what you're going through,” he says.

 

Tourette's syndrome (TS)

A neurologist talks about Tourette's syndrome, which causes people to make a combination of involuntary movements and sounds. He offers advice on treatments and where to find support.

Media last reviewed: 19/08/2011

Next review due: 19/08/2013

Page last reviewed: 19/01/2014

Next review due: 19/01/2016

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Media last reviewed: 27/12/2012

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