This month is Tourettes Syndrome awareness month. Tourettes effects everyone very differently. Tourettes is not just swearing. Many people have simple tics which can be suppressed well, while others have more complex or severe TS which can affect daily life.
The following few posts will be with a variety of people who have tics, a diagnosis of Tourettes syndrome or a Tic disorder. I have decided to conduct a variety of short interviews asking the same questions to show just how tics can affect life. No one knows better than a ticcer themselves to offer the best advice and words of wisdom.
An interview by LAUREN PERRY with DANIEL JONES
Your Tourettes stories.
NAME: Daniel P Jones
TICCING SINCE: In school- 2009
WHEN WERE YOU DIAGNOSED?
I was diagnosed 11 years ago this May, way back in 2009. I remember going back into school after the diagnosis appointment and sitting in my class again, not really understanding what had just happened or what any of the diagnosis actually meant!
HOW WOULD YOU EXPLAIN TOURETTES TO OTHER PEOPLE?
It’s such a hard thing to explain to somebody, but generally I would say that Tourettes Syndrome is a neurological disorder characterised by involuntary movements or vocalisations called tics. However, it’s obviously a lot more than just that – I think the most important thing to do when explaining it is to highlight just how individualised TS is. Tourettes looks different in everybody, and sadly a lot of people don’t realise!
DO YOU HAVE ANY FUNNY TICS OR ONE THAT GETS YOU INTO TROUBLE?
One tic that I have that can be funny is that, occasionally I echo words or gestures that people say or make. I remember once I was watching a performance of ‘the Crucible’ and I couldn’t help myself but say (rather loudly) “she’s a witch”! Me and my friend spent the entire rest of the performance trying not to laugh about it!
A tic that has gotten me into trouble is, what I like to call ‘the stank face’. It’s basically that really disapproving look you give something that you think is disgusting, or when somebody outright lies to your face… you know the kind? That’s definitely gotten me into trouble before!
*I find sitting in big rooms like cinemas, lectures and theatres really bring on my tics too!*
WHAT’S THE BEST TREATMENT EITHER CLINICAL OR EMOTIONAL – THAT HAS HELPED WITH YOUR TICS?
I’ve tried various emotional / behavioural treatments without any luck really. I’m quite hesitant to try any medications for multiple reasons. Therefore currently I am not receiving any treatment as I haven’t found any that work, or that I’d be comfortable trying due to the possible side effects.
*Side effects of medication is something that is rarely spoken about*
DO YOU HAVE ANY TIPS FOR FAMILY MEMBERS OR FRIENDS OF TICCERS?
My main tip would be to never tell somebody with Tourettes to stop or ‘shh’ if they are ticcing! For everybody I know who I’ve spoken to, including myself, this actually triggers us to tic a lot more. Don’t tell people off for the tics they have, as I can guarantee you it’s more frustrating for the person with tourettes than it is for you!
*I totally agree with you here- if I get ‘shhed’ or someone says ‘i can’t hear be quiet’, I find my tics become obnoxiously loud! It’s pretty funny to me;)
Thank you for taking the time to answer these questions for Tourettes Syndrome awareness month.
As always there will be a donation to Tourettes Action as the chosen charity for these series of blog posts. My Grandma has been a little star and helped raise money for the 2.6 challenge- more information to come soon:)