Simon Pitcher from Dublin talks to MICHELLE MCDONAGHabout lving with Tourette's Syndrome
I WAS in first class in school when I first started having tics, which are a symptom of Tourette’s syndrome. I had quite a hard time for the two years before I was diagnosed when the tics were at their peak. I would have had quite strong facial expressions, jerks and a lot of vocal tics as well, so it was quite an upsetting time for me and my parents who didn’t know what was going on.
I remember feeling different from the other kids in school and embarrassed. The harder I tried to control my tics in the classroom, the worse they got. Once I was diagnosed by a neurologist and was started on medication, I started to really improve and was able to have a more normal life. My mam had a word with the teachers and they were brilliant.
I did get the odd nasty comment here and there or was mimicked a bit, but overall my classmates were very understanding. They were told by my teachers not to ignore me as a person, but to turn a blind eye to my behaviour.
There are always bad eggs in any school, but I had a really good group of friends. I used to make up excuses, I’d say I had pulled a muscle in my neck and that was causing me to twitch.
I can’t stress enough how a weight lifted off my shoulders once I got the diagnosis. I knew I was not the only one with Tourette’s, that it was a common enough condition and there was a medical reason behind my behaviour.
Secondary school had its ups and downs. Tourette’s gets worse under stress and Junior Cert was probably the hardest year for me because the stress of the exams made me very “ticky”.
They had to get a room for me to sit in alone for my exams with an external examiner, so that I could walk around if I needed to without feeling that everybody was looking at me.
I was on medication up to fourth year, so was able to control the tics better. I’m proud to say I’ve been medication-free for the last six years, I’ve been coping with it myself.
I did have a normal childhood. Tourette’s has not made me who I am and I was very lucky to have a great group of friends who tried their best to understand.
I have been involved in sport and music all my life, and I find kickboxing and playing the piano are a great way to distract myself from Tourette’s and to relax. When I’m busy or doing something I enjoy, I don’t have to think about controlling the tics. I also find when I’m in the company of my friends, my Tourette’s doesn’t affect me at all.
I was lucky my Tourette’s was not as bad growing up as others. I know of people who have a terrible time with it and are afraid to leave the house because their tics are so bad.
I still to this day wish I did not have Tourette’s. I find it hard to sit still and relax sometimes, and to focus on certain things. In school, I found it quite hard to concentrate on homework and assignments and to study.
I also have borderline Attention Deficit Disorder (ADD). Tourette’s is linked with a lot of other co-occurring conditions like ADD and Obsessive Compulsive Disorder (OCD).
I did quite a good Leaving Cert although I would have done better if I studied harder. I did a PLC in European language because I didn’t have enough points for arts. I did a year’s Fetac course in sports and leisure which I loved.
I’m working full-time in Next at the moment, but I think I’ve found my calling in the leisure industry and hope to go down that route in the future.
The biggest awareness raiser about Tourette’s was when Pete Bennett went on Big Brother which obviously got massive media attention. That was both a help and a hindrance.
It did raise public awareness about Tourette’s, but it also strengthened the misconception that everybody with Tourette’s curses uncontrollably. Bennett has really bad Tourette’s and coprolalia, which is uncontrollable cursing, but he helped to raise awareness of what it is.
I wish more people with Tourette’s in Ireland were willing to go public with their stories. In the UK and the US, the Tourette’s groups are so organised, they have their own websites and even social networking sites. The UK has a Tourette’s action plan which is something my mam is trying to get here.
I have never let my Tourette’s stop me or blamed anything on it. To any young person out there who has Tourette’s and might be struggling, I would say get in touch with Tourette Syndrome Association of Ireland (TSAI), keep your head up and stay as positive and as busy as you can.
In no way, shape or form should you let Tourette’s make you who you are. I am Simon Pitcher, not Tourette’s.
Most people with Tourette's don not swear uncontrollably:
Tourette’s syndrome (TS) is a neurological condition that affects one schoolchild in every hundred and more than 300,000 children and adults in the UK. There are no accurate statistics available for Ireland.
The key feature of TS is tics, involuntary
and uncontrollable sounds and movements. In many cases, TS is also linked to other behaviours, most often obsessive compulsive disorder (OCD) and attention deficit disorder (ADD). Ninety per cent of people with TS do not swear uncontrollably.
TS starts in childhood and, for many children, the condition continues into adulthood. However, in approximately half of TS patients, most symptoms disappear by the age of 18.
The annual conference of the Tourette Syndrome Association of Ireland (TSAI) is taking place at the Ashling Hotel in Dublin on Saturday, November 28th. The topic of this year's event is Tourette's is Not Just Tics. Speakers will include Dr Tom Moran, consultant child and adult psychiatrist, Linn Dara Child and Adolescent Mental Health Services (CAMHS) and the National Children's Hospital Tallaght, Dr Tara Murphy, clinical psychologist, Great Ormond Street Hospital, London, and Prof James Lucey, psychiatrist, St Patrick's University Hospital. Actor, teacher and childrens author, Dairíne Ní Dhonnchú, will speak about her experience with Tourette's syndrome.
Chairwoman of TSAI and conference organiser, Carol Pitcher, says the aim of the conference is to heighten awareness of Tourette’s and to give parents of children with the syndrome hope for the future.
- For further information on the conference, contact TSAI at 087-2982356 or log on to www.tsai.ie
- If you have had a health experience – good or bad – which you would like to share, contact health supplement@irishtimes.com
