How my Tourette Syndrome influenced my decision to work with Tourettes Action

Posted Thu 23rd Jan 2014 at 21:00
by Robin Paxton

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As a boy in the 1960s I always had tics, - a bit of head shaking, rapid blinking, throat clearing and the like. My mum and brother were aware of it but we never talked about it.

 We certainly never went to see anybody about it or tried to find out why it happened. I think I must always have been able to suppress or conceal the tics when I needed to. I have no memory of anybody commenting on them at school, - and that wasn’t a place where kids were backward about coming forward if someone had an oddity! In adulthood the tics declined, though to this day they recur from time to time, - and not as far as I can make out for any discernible reason, such as worry or stress. But I can deal with them in private, - except for a tendency to cough. But is that a tic, or do I just have a sensitive throat? I’ve stopped asking.

Anyway it wasn’t until much later, when another family member started with tics in childhood, that I thought about it again.

By now it’s the 1990s and of course the mood has changed. You don’t just ignore things in children, you try to find out what’s going on; and we found out about TS. That’s what brought me into contact with Tourettes Action, then called TSA. They were enormously helpful in explaining something about this strange, unspoken, compulsive condition. And so when I retired from full-time working and had some free time, and when the charity needed a new trustee, I offered myself, and in due course became chairman.

What does having Tourettes really mean?

Clinicians and other experts tell us that around one per cent of the population has diagnosable TS. But I’m not sure how helpful that is. People with TS experience symptoms from the essentially minor, such as mine, to the very severe. Fortunately the majority experience symptoms that are basically manageable in the sense that they can be suppressed until moments of privacy. Not that this is without cost; even suppressed tics take a toll of the person with them, - plainly a child returning exhausted from school after a day of suppressing suffers an educational disadvantage compared to the children who are undistracted.

But life is very different for those whose tics are non-suppressible, and who, like it or not, have to announce themselves to the world, and who draw the eye, and can attract comment, laughter, bullying and discrimination. We’d probably all agree that tolerance and kindness towards difference has improved over the last generation or so. The kind of language and ‘comedy’ directed towards minorities of many kinds when I was growing up would cause outrage today.

Physical, neurological and mental health conditions that were fair game for nasty jokes in the past have been successfully de-stigmatised, and not a moment too soon. Yet it somehow Tourettes is still fair game both for third-rate comedians and people on the street. That angers me on behalf of everyone who has to live with that kind of treatment. And because of that we need to work not only assertively in the language of rights, - in schools, in the workplace, in the justice system, in health services; but we also need to build empathy and understanding.

Let's talk about Tourettes

The many people with TS who’ve recently been on a range of TV shows, going right back to Pete Bennett on Big Brother, with their talents, humour, charm, articulacy, musicianship and other skills, have gone a long way towards making the lives of people with TS real to the rest of the population. But then we hear another story of someone with acute TS who will never venture out of the house; and we see how far we still have to go.

One of the frustrations for a Tourettes charity is that it might seem we can’t offer enough hope, in the sense that there doesn’t seem to be a cure just round the corner. This can mean that some members find us when TS comes into their lives, and can get useful information and support from us, but perhaps find after that that there’s no particular reason to stay close to us.

I really hope that everyone who has been in touch with us and joined the charity will stay in touch. There’s a mass of exciting stuff happening at TA from our advocacy in schools and with government, to our local support groups and their events, to our continuous encouragement of new clinical research, our campaigning for talking therapies that have had measureable success with TS, to our workshops and conferences. We will be more effective the more people that are engaged; everyone is a potential advocate – at their school, with their MP or local authority; everyone is a potential fundraiser for the cause.

Everyone, by being part of a huge conversation, on this blog and elsewhere, is a potential source of the new ideas and energy that will get us to our goals, - of reaching everyone that could possibly need us, getting to everyone who should hear us, and of making sure that, until TS is eliminated as a condition, everyone with TS can live a life that is not limited by their condition or by the attitudes of others towards it.

Robin Paxton

Tourettes Action Chair

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