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Inside the misunderstood world of Tourette's
7:00am Saturday 20th October 2012 in Health
Jess Thom says 'biscuit' up to 16 times a minute and swears involuntarily because she has Tourette's Syndrome. She tells Lisa Salmon how she refuses to let it get her down, and how writing a book about her Tourette's has helped her celebrate the creativity and humour of her condition, and explain the challenges it brings to those who don't understand it.
By Lisa Salmon
Jess Thom says "biscuit" 16 times a minute all day, every day, apart from when she's asleep.
She also constantly thumps herself hard in the chest, squeals and moves uncontrollably.
Underneath all this chaotic behaviour, Thom, 32, is an articulate, intelligent woman, who thinks just like anybody else. But Thom also happens to have Tourette's Syndrome, which often overshadows her normal thoughts and behaviour.
Talking as a support worker holds her arms, so she doesn't repeatedly hit herself, and with her legs constantly moving, she explains: "I'm never really still or quiet.
"My tics are initially very shocking and there are a lot of them, but I'm dealing with them practically so they have less impact on my life."
The hugely misunderstood neurological condition affects more than 300,000 people in the UK, including one in every 100 schoolchildren, and is commonly associated with involuntary swearing (coprolalia).
However, the reality is that only 10% of people with Tourette's actually swear uncontrollably. Thom is one of them, but she certainly doesn't swear most of the time.
Her new book, Welcome To Biscuit Land, is about a year of her life, and Thom hopes it will make people more aware of her condition.
"There are lots of myths about Tourette's," she says. "The first is that it's all about swearing, yet 90% of people with Tourette's don't swear.
"The other myth is that it's people saying what they're thinking, and that's far too simplistic."
As if often the case, Thom's condition first became evident at around the age of six, when she sometimes squeaked uncontrollably.
The condition can run in families - her uncle had suffered motor and vocal tics as a child.
Tourette's is highly unpredictable, and the number and intensity of Thom's tics have increased over time. The motor (physical) tics now affect her movement so badly - for instance, she sometimes throws herself on the floor, and kicks her legs out - that she uses a wheelchair and wears special padded gloves to prevent her injuring herself.
Some of her verbal tics are full sentences, and she happily admits they're sometimes funny and, for the most part, extremely bizarre.
She has no idea why she says them, but they can be anything from "God said: I'd never have invented Spam" to "Sexually frustrated dog food".
While some of her tics can be linked to or triggered by specific situations, like shouting out her pin number at a cashpoint, the majority are random.
Despite all this, Thom works as a co-ordinator for a children's play project in south London, and makes a huge effort to live as normal a life as possible with the help of support workers and an "amazing" network of family and friends.
"It would be unfair to paint a picture of myself as being relentlessly upbeat and positive all the time, because it can be really challenging," she says.
"There are times when I feel really upset or frustrated and a bit desperate, especially if tics change and create a whole new load of challenges.
"But on the whole I feel really happy and have a really good quality of life. Tourette's gives me a view of the world that other people don't have."
However, some people have a very different view of Tourette's, and in the book, which was condensed from Thom's blog (www.touretteshero.com), she recounts numerous incidents where she's been subjected to nasty comments.
Many of these encounters have occurred on public transport. One man copied the sounds she was making, began banging his chest to mimic what she did, and then even banged her chest with his own hand.
Others have laughed at her, told her she's possessed and demanded that she stop the tics, even when she's told them she has Tourette's.
"I understand that it can look funny if you've not seen it before, but people who don't listen when I try to explain and still choose to take a negative view or respond with hostility are incredibly frustrating," she says.
"That's the bit that gets me annoyed. I don't mind if people seeing it for the first time are curious or fearful - I can understand that - but not listening to an explanation is unacceptable and inhumane."
Although some of the cruel comments have even made her cry, Thom is determined not to let it get her down.
She tries not to feel sorry for herself, although she admits: "It's natural that you would sometimes feel like that.
"But I don't think it's helpful and I don't think it would be useful to me or anybody else. I'm much more interested in trying to look for the positive things and find practical solutions to my problems.
"And if there are things that are standing in the way, like people's attitudes, I'll try to work to change them."
She desperately wants people to understand what it's like living with Tourette's, believing that giving an insight into her life will create greater empathy, and help people engage with the humour within the condition.
"There's lots of things that use Tourette's as a cheap joke, particularly because of its link to swearing," she says.
"But what they're missing is that there can be lots of really funny things that are said, and funny experiences as a result of living with Tourette's, and I want to use humour as a way of getting people to think about it.
"There's a big difference to laughing at someone and laughing with someone."
Suzanne Dobson, chief executive of the charity Tourette's Action, explains that Thom is at the severe end of the condition's spectrum, but says her experiences aren't uncommon for people with milder forms.
She believes some people struggle in their response to Tourette's sufferers because they wrongly believe the verbal tics are directed at them.
"People can be unhelpful, difficult and downright unpleasant to those with moderate to severe Tourette's," she says.
"It can sometimes leave other people feeling vulnerable, because they don't understand that the words that come out aren't directed at them.
"They take it personally, and I think that makes them less sympathetic."
:: The exact cause of Tourette's isn't known, but it appears to involve an imbalance in the brain chemicals dopamine and serotonin.
:: The condition often runs in families, and it's believed that there's around a 50% chance that people will pass it on to their children. However, no single gene has been convincingly identified.
:: Tourette's is three to four times more common in boys than girls.
:: It causes long-term involuntary repeated movements and sounds (tics), ranging from blinking and sniffing to touching, jumping or shouting loudly.
:: For around half of all children with Tourette's, the tics will disappear in late adolescence.
:: More than 85% of people with Tourette's have more than just tics - the syndrome is often linked to other conditions including attention deficit hyperactivity disorder (ADHD) and obsessive compulsive disorder (OCD).
:: Welcome to Biscuitland is published by Souvenir Press, priced £12. Available now :: For more information about Tourette's, visit www.tourettes-action.org.uk
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