Tourette’s Syndrome : Profiling a Common and Misunderstood Condition
Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The disorder is named for Dr. Georges Gilles de la Tourette, the pioneering French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman.
Jess Thom the Tourette’s Syndrome superhero who can’t stop saying ‘biscuit’
To the outside world, it can appear something of a joke, but Tourette’s is no laughing matter for those living with the syndrome. Sufferers’ lives are forever marred by the constant, uncontrollable urge to shout, swear and tic inappropriately. In this remarkable story, we meet Jess, who finds it impossible to control the urge to say the word ‘biscuit’. She says it hundreds, if not thousands of times every single day, often while punching herself in the chest. Jess invites Sunday Night into her life to experience what it’s like to live with Tourette’s. It is heartbreaking television. Rahni Sadler also meets an amazing young jazz singer who swears and tics uncontrollably off stage, but transforms into a composed and talented songstress on stage. This story will forever change the way you think about Tourette’s.
A profile of Jess Thom
Tourette’s Syndrome sufferer Jess Thom has set up a website to demystify the condition and help others. She tells Anna Davis how writing a daily blog has transformed her life.
When Jess Thom wakes up in the morning she knows she is going to say the word “biscuit” thousands of times. “Hedgehog”, “cat” and “f***” might also feature hundreds of times in her day. From minute to minute, in any situation, she has no idea what might come out of her mouth.
Jess has Tourette’s syndrome and, although she does not particularly care for biscuits, the word has become the most common of her tics.
She avoids cash machines because she cannot stop herself shouting out her pin number and she involuntarily hits her chest so often that she wears gloves to protect her knuckles. Recently her legs have started twitching so chaotically that she now uses a wheelchair. Most days she will experience tics so strong that it looks like she is having a seizure.
But despite the problems she faces Jess, 33, is determined to de-mystify the often misunderstood condition and make life easier for other sufferers.
With help from the Evening Standard’s Dispossessed Fund and Sport Relief, she set up the Touretteshero website where she shares the surreal and sometimes funny things that happen to her every day.
This simple action has transformed her life and those of countless other people with Tourette’s.
Once again, Sport Relief has chosen the Evening Standard Dispossessed Fund to be a major beneficiary of its activities, which includes a night of TV fundraising on March 21 and a weekend of sport at the Olympic Stadium, including the running of the Sport Relief Mile on March 23.
Before Tourettes hero, Jess did not know how to explain her condition and could not talk about her tics without crying. But writing a blog every day forced her to confront her Tourette’s Syndrome and she has become a role model for people across the country struggling to come to terms with the condition. By talking openly about Tourette’s Syndrome — and sometimes dressing as a superhero to discuss it — she is busting the myths around it and radically improving the lives of everyone affected by it.
She said: “While the physical impact (biscuit) of Tourette’s Syndrome is something not many people can do something about, (biscuit) the social impact can be overwhelming and that’s something everybody has the power (biscuit) to change (biscuit).”
She continued (with her tics removed): “The most important thing is to ask questions. People are often frightened about asking questions but I can’t think of any question that has been sincerely asked about my tics that I have ever been offended or upset by.”
Jess first noticed signs of Tourette’s at the age of six when she started squeaking and running into doors, but was not diagnosed until she was in her twenties.
She describes each of her tics as having a different sensation, ranging from a feeling of pressure building up like a sneeze, to the feeling that all her insides are itching and cannot be scratched. Trying to hold them in can be uncomfortable, like trying not to blink.
“My tics change, but I do have some very regular ones. I have become known for saying ‘biscuit’.
“It is a very frequent tic for the last three or four years. Before that is was ‘squirrel’, ‘crisps’ — anything I have ever known or experienced has the potential to become a tic.”
Although Tourette’s is associated with swearing, just 10 per cent of those with the condition actually swear — a condition known as coprolalia. Jess is one of the 10 per cent. The condition can leave people isolated and cut off from the world because they prefer to stay at home to avoid stares and confrontation.
But Jess refuses to let Tourette’s stop her going out. She travels on public transport and ignores the stares of other passengers as she shouts out random words.
She said: “There is an element of Tourette’s that is about saying the worst thing in any given situation. I was on the bus with some police recently and a policeman was standing very close to my wheelchair. He had his back to me and was doing a brilliant job of ignoring me but he was standing so close all I was worrying about doing was touching his bum.
“I had to sit on my hands to stop it from happening.”
It is these comedic moments that Jess wants to celebrate on her website. She set up Touretteshero after prompting from her friend Matthew Pountney, who inspired her to use her condition positively. Jess, who has a degree in drawing and studied photography at the Royal College of Art, said: “One of the key turning points in how I feel about my Tourette’s was when Matthew described my tics as a ‘crazy language generating machine’.
“He said not doing something creative would be wasteful.”
Matthew, who works with Jess at Oasis Children’s Venture in Stockwell, said: “Through Touretteshero Jess has found a creative means to deal with, share and celebrate a mystifying and often misunderstood condition. The public response has been amazingly encouraging for her. Her optimism and positivity shine through and her determination to manage what most people would find distressing circumstances are an example to us all.”
Jess added: “It is not about being relentlessly positive about everything, because Tourette’s can be very difficult. But there are things about Tourette’s that are like a superpower that other people can’t do.
“It adds a lot of challenge to some aspects of my day but it also brings a great deal of laughter and strangeness. It has made me a more empathetic and thoughtful person as a result. It is about finding ways to manage difficult situations and finding things that you can feel positive about.”
As well as running the website, Jess regularly gives talks about her condition and her book, Welcome To Biscuit Land, has become an invaluable resource for families coping with Tourette’s Syndrome.
In April she is staging an event at Tate Britain for children with Tourette’s called We Forgot The Lot, and she created the Tourette’s superhero alter ego as a way of talking to children about the condition.
She hopes her work will also inspire the medical profession to do new research into the debilitating and painful parts of Tourette’s Syndrome — illustrated by the fact that after our interview Jess lost the use of her hands.
But she remains upbeat. Writing on her blog after the muscles in her hands mysteriously went into spasm and seized up, she said: “However the rest of the year pans out I’m confident that creativity, friendship and writing this blog will continue to play an important part in helping me manage and make sense of the ups and downs ahead.”
What Tourettes hero does
What they do? Founded by Jess Thom in 2010, Touretteshero seeks to raise awareness about Tourette’s with a website, daily blogpost, talks and creative events.
Amount received from Sport Relief and Dispossessed Fund: £9,476
Where: The website helps people all over the world. A special Tourette’s awareness day will be held at Tate Britain in April.
How the grant was used: It will be spent on two London-based creative events for children with Tourette’s and associated conditions. It will also help maintain the website and give training to London-based schools and public services.
To donate or apply for grants go to: standard.co.uk/dispossessed