Tourette’s is often and wrongly known as the ‘swearing’ disease probably because it’s the most bizarre and shocking aspect of the condition. The first thing people say when I tell them I have TS is “Why don’t you swear?” which is pretty frustrating. The truth is that only around 10% of sufferers are affected by Coprolalia (use of bad language).
So what is TS then? I spoke to Judith Kidd, Chief Executive of the Tourette’s Syndrome Association, to find out. She explained that what you see in sufferers is “Movements and sounds which people simply have to make and can’t control.” These quick, repetitive, and involuntary actions are referred to as tics and can be compared to the urge to sneeze or itch. The most common tics are from the shoulders upwards and can include blinking, twitching and grunting.
To some extent this is true but by holding tics in, say to avoid people’s stares or annoying them, a sufferer will become more stressed. And as Judith put it “Stress makes tics worse and tics make stress worse”. When I’m worrying about exams or the usual things young people worry about, my tics get worse. A number of people do have mild control over their tics and they can sometimes be suppressed for hours at a time but, consequently, when they can’t be ignored any longer, tics are experienced with much worse severity. When I hold my tics in at school, I find that when I’m alone later or trying to relax, they all seem to come at once. In contrast sufferers are normally much calmer when relaxed or absorbed in activity.
There’s no denying that TS creates a surreal spectacle, and there is an element of humour in the fact that the tics are out of the social norm. However, Tourette’s is also a very serious condition and for some is a true disability. As Judith told me, severe Tourette’s can be isolating and embarrassing, affecting aspects of life such as school, work and relationships. Even things like unwanted facial expressions can have a big impact on how a person interacts. There is also the problem that when sufferers repeat movements it can cause serious physical damage. A grinding teeth tic I used to have resulted in fillings. Even now some of my teeth have jagged ends.
The worst things about TS are the aspects that are hidden. Judith explained “What you don’t see are things like Attention Deficit Disorder (ADHD), Obsessive-Compulsive Disorder (OCD), anxiety, low self esteem and sleep problems.” Not everyone who has Tourette’s has all or any of these things, but it’s not uncommon in the more serious cases.
TS is definitely not rare. 1 in 100 children develop TS which means there’s a good chance we know someone who may have a diagnosable case. What many of us don’t realise is that a lot of us have little habits that are related to Tourette’s or OCB, such as feeling the need to constantly wash our hands, avoid pavement cracks or perform some physical habit we just can’t shake. Some of us may even have mild TS without knowing as Judith believes the majority of sufferers aren’t aware they have it.
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I asked why not many people realise this. “The fact that doctors have been taught that it is rare means that they aren’t looking out for it. Therefore it doesn’t get diagnosed, so everyone’s awareness remains low“. As TS varies in severity at different times for an individual, it is sometimes perceived as a temporary illness. Although many young people do grow out of it before they reach adulthood, some will have it severely for life.
Judith explained that little is known about the causes of Tourette’s “Scientists know it’s inherited but haven’t identified the gene. It seems to be a problem with brain chemicals, dopamine in particular.” There are a few treatments for TS but none work for everyone. These range from alternative therapies to prescribed medication which often has serious side effects. I tried one such drug which I soon gave up on as it left me falling asleep in class. Others drugs can cause depression and sleep problems.
I’ve heard people say “Poor Pete, going on BB, he was there to be laughed at and we really should feel for him”. I’ve also heard that medical professionals have said he shouldn’t have gone on BB because Channel Four just wanted to use his condition for entertainment. I see the point in the second comment but both give the wrong impression. They suggest that TS sufferers are not able to make up their own mind about what they want to do. Are not intelligent enough to make informed decisions and that we-are-stupid and need to be talked about as if we haven’t got our own opinions. TS is not a mental illness and as Judith told me of Pete, he is of above average intelligence. In fact he won big brother because of his intelligence. He wasn’t bitchy, didn’t play a game and was generally a likable, average, non-fame-obsessed guy.
And as for pity many TS sufferers actually believe they get something from their condition such as extra creativity or talents for music or art. I asked for Judith if she had any experience of this. “It’s not the sort of thing you could actually prove but one of our speakers at a conference recently said he thought that he wouldn’t be as talented without Tourette’s as he is with it”.
I hope that by writing this article for young people, I will have made a small difference to what the media and medicine profession really should be doing. Fortunately my Tourette’s is mild, but for some it can be very crippling. So for anyone who witnesses any behaviour like I have described of TS, think twice about laughing or staring because what is still a problem for all sufferers is how TS is received by the outside world.
Martha Snow
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For more info go to www.tsa.org.uk
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