Teaching the world about TS

Interview with Jess Thom, Lucy Benyon, Daily Express, June 2013.

Read the article on the Daily Express website.

Sometimes she is stared at, on other occasions people will point and laugh and at times she is blatantly shunned.

Having to deal with other people’s reactions is a daily event for Jessica, 33, who, like 300,000 other people in this country, has Tourette’s syndrome.

Tourette’s syndrome (TS) is a widely misunderstood neurological condition which causes sufferers to shout out, make strange noises and move their bodies uncontrollably.

These overwhelming impulses are called tics and can range from relatively mild urges such as repeated blinking or throat clearing to more complex impulses including the need to drop to the floor (the reason Jessica always wears knee pads) or a compulsion to blurt out inappropriate but not necessarily offensive, words or phrases.

Although the cause of TS is unknown it is believed to be the result of abnormalities in neurotransmitter functions in the brain. There appears to be a strong genetic link and typically symptoms start to show around the age of seven. In about half of sufferers the tics will have disappeared by the time they reach adolescence.

However Jessica, from south London, was not diagnosed until she was 26 and over the past few years her tics have become increasingly debilitating.

Jessica’s mother mentioned she might have Tourette’s after watching a television documentary on the condition. At first, Jessica did not want to acknowledge she had a problem. It was when a friend asked how she could explain her twitching that she realised it was time to be diagnosed.

Having a recognised condition means Jessica can live and work independently. She receives disability allowance and has a wheelchair as she drops to the floor so often it’s not always safe to walk.

She uses muscle relaxants to help her sleep, while the calming pressure of a weighted duvet also helps. When her tics become too intense she takes diazepam.

During the day she wears padded gloves as she repeatedly beats herself on the chest.

A course of Habit Reversal Therapy, which teaches sufferers to try to replace a physical tic with a less severe one, has improved things. “It has been useful but it’s not a cure,” says Jessica. She also suffers vocal tics. Her conversation is currently littered with the word “biscuit” which she says up to 16 times a minute. “For about three years, it was squirrel,” she says with some resignation. “Now I’m in biscuit land and have no idea why.”

Like about 10 per cent of others with Tourette’s, Jessica suffers from an uncontrollable urge to swear.

Most of her verbal tics make little sense, even to Jessica. She regularly blurts out bizarre but amusing phrases like “Long division killed your soul” or “There’s a dog in your wallet, wash your hands”.

“There are certainly some amusing moments,” she says.

“But Tourette’s itself is not funny.”

Although Jessica has an amazing support network of family and friends she still finds strangers’ reactions difficult to deal with.

“People can be very quick to judge. Recently my ticket got stuck at a Tube station and the guard refused to let me through as I was swearing uncontrollably.” She tried to explain but he wouldn’t listen.

In a bid to put a more positive slant on TS, Jessica set up Touretteshero (tourestteshero.com), an amusing internet resource for people with Tourette’s. The aim is to celebrate the creativity and humour of TS.

“It is all about breaking down attitudes and getting acceptance,” says Jessica, who has published a diary of a year with Tourette’s.

“While it can be difficult, having Tourette’s has made me a more resilient, confident and articulate person,” she adds.

Welcome To Biscuit Land: A Year In The Life Of Touretteshero by Jessica Thom (Souvenir Press, £12). Find the book online.