Tourette's Syndrome: A heroic response

Tourette's Syndrome means that Jess Thom is at the mercy of unpredictable verbal tics. But she has used humour to help fight back – and to educate others

Caped crusader: Jess Thom has created an alter ego, Touretteshero, to raise awareness about the syndrome (Laura Page)

When Jess Thom had to get off the Tube early due to a station flooding she did what most people would do and asked a member of staff the best way to continue to her destination. She is used to people reacting negatively to her verbal and physical tics so she wasn't surprised when the station worker turned his back on her. However, once she'd explained that she had Tourette's Syndrome, she did expect a better response than the one she got: "I'm not giving you any fucking information."

When her pass also failed to work at the exit barrier he refused to help her so she was stranded. Left feeling helpless and humiliated, she ended up taking a taxi home.

"I can understand that if you've not met someone with Tourette's before some tics can be challenging, but it's really not on for people working in a public setting to be disrespectful and unhelpful," she says.

The verbal tics that result from Jess's Tourette's cause her normal speech to be constantly punctuated with involuntary sounds or to say things she can't control. Her tics sometimes develop common themes or words which she will tend to say a lot. Some of her repetitive tics when I meet her are "biscuit", "I fucked a sheep" and "Help! I'm stuck down a well."

Some of her tics are almost poetic, comedic or insightful – "Derren Brown is in the room – shut your mind!", "Bye bye polar bear!" – others hilariously surreal: "Kanye West killed Rupert Bear yesterday."

She never knows what the verbal tics are going to be until she's said them and, if she manages to stop what she's saying mid-tic, she does not know what the rest of the sentence was going to be.

While Jess sees the humour in a lot of her tics and invites others to laugh at them, she is clear to make the distinction between laughing at her and laughing with her. She is also acutely aware that these things can sound strange or even shocking to people around her. It is because of this that she hopes to help bring about a change in awareness of Tourette's.

She has started to do this through a new not-for-profit social enterprise, Touretteshero, which she co-founded with friend and colleague Matthew Pountney. Touretteshero aims to increase awareness of Tourette's through creativity and humour but without self-pity or mockery.

The hub of Touretteshero is its website, which features a thought-provoking blog of Jess's daily joys and tribulations, a long list of her vocal tics and a gallery of tic-inspired artwork produced by numerous artists.

Artistic interpretations of tics such as "Wesley Snipes is a biscuit" and "Lego is for life, not just for Christmas," are a joy to behold.

Touretteshero is also Jess's alter ego. She dresses in a blue and white superhero costume, complete with mask and cape. Working with Matthew and a host of other Touretteshero characters, Jess raises Tourette's awareness with children and helps those with Tourette's to feel positive about it.

Jess is now 31 and her tics are more severe than ever, but she first remembers having tics aged six. Throughout her school years she experienced making involuntary movements and noises and remembers saving up her tics to let them out secretly in the toilet (these days she can only supress a tic for up to 16 seconds). By the time she was a teenager she realised she had Tourette's. She was only properly diagnosed in her early twenties.

Jess also experiences regular physical tics, which can make it hard for her to control her body, cause her to fall down and more recently to have fits where she convulses for minutes at a time. As these physical tics have intensified she has had to start wearing knee pads, wrist guards and a padded head piece to protect her from getting hurt.

She has fantastic support from her role as a youth worker, family and friends and acknowledges how difficult it would be without them. Since her fits have begun she needs to have someone near her all the time.

The severity of Tourette's varies widely and Jess acknowledges that the physical impacts are less severe for many people but she says: "It's not all about physical impact. Tourette's can be very socially isolating, which is why understanding and awareness are important."

Jess explains that it is generally when she is on her own and people don't hear her talking in her "real" voice that they are frightened by her tics. She says that fear comes before laughter and she sees it in people's faces. She will often call a friend if she's on public transport so people around her can hear her talking in her normal voice as distinct to her tics. But at times she still has to put up with people moving away from her, making nasty comments, laughing at or mocking her. People tell her, in all seriousness, that she's possessed and drivers have repeatedly refused to let her on their buses.

But it is not always this way. "I've had some amazing conversations I would never have had if I didn't have Tourette's and that's a gift. Some people surprise me that they're so non-judgemental."

The idea for Tourettehero was prompted by some of Jess's verbal tics. She says: "Suddenly my tics developed a God theme. I was saying things like "God loves everyone", and "God's moving to Watford on Sunday." I changed overnight from someone who was recognisable as someone with Tourette's to someone who looked like a fundamentalist Christian on the bus," she jokes. But she listened to Matthew's suggestion that she use her tics creatively and took the opportunity to make them into a body of work called "God says...", a series of photographs of church signs with Jess's tics photoshopped onto them.

Jess and Matthew posted the "God says..." pictures on the website and encouraged other artists to illustrate other of Jess's tics, which were listed there. It took off and now there are more than 100 works of art done by different artists on the website's gallery.

Jess says: "It's an irreverent approach to disability which I don't think is out of step with other disabilities. It's about changing the view of people with disabilities as victims or scroungers and seeing them as professionals, whilst having a sense of humour about it."

touretteshero.com

Tourette's explained

* The condition affects 300,000 people in the UK. Most never need treatment and many will not realise they have it. It is a neurological condition that manifests itself with involuntary "tics", which can be anything from blinking, coughing or saying words out of context. One common misconception is that people with Tourette's simply shout out swear words – this is only true for one in 10.

* The condition is often connected to other behaviours: 85 per cent of people with TS have another condition, such as obsessive compulsive disorder or attention deficit disorder.

* There is currently no known cure, although half of children with TS will find their tics fade as they reach adulthood.

* Treatment is difficult as symptoms can come and go naturally. TS is sometimes treated with medication, however these can often have undesirable side effects. There is a growing preference for non-pharmacological treatments such as cognitive behavioural therapy or habit reversal therapy.

* Educational support and understanding is vital for children with TS. Although it doesn't affect intelligence, it can be disruptive. For example: being told not to do something by a teacher could lead to an uncontrollable compulsion to do it. Try not touching any part of your body for the next hour – the growing urge to do so is similar to the feeling of someone with TS trying to control a tic.

WILL COLDWELL