THE TRUTH ABOUT TOURETTE’S

BY SARAH WALL

Sarah Wall offers a personal insight of living with Tourette syndrome and dispels the myths surrounding this misunderstood condition

Shock, humour and disgust are normally the top three reactions I get when I first tell people I have Tourette’s. Shock because I look like any other person in the street, humour because people automatically assume I am going to come out with a barrage of profanities, or disgust because whilst people like to harp on about accepting differences, the reality is a very different scenario.

Nevertheless, I cannot blame people’s reactions because the majority of their preconceived ideas are formed solely from what they see in the media. On one hand it is great the condition is getting much needed coverage, but on the other it isn’t ideal when the main media portrayal is surrounding the notion that Tourette’s is all about swearing and profanities. I am not sure why the media likes to do this, maybe because it is such a unique symptom that is a shock for most people, or maybe to increase the humour, or maybe just for the ratings, but today I would like to share with you the real world of Tourette’s by busting the myths and presenting the much-needed truths.

SO, WHAT IS TOURETTE SYNDROME?

Tourette syndrome (TS) is a neurological condition that affects over 300,000 children and adults in the UK. The main characteristics of TS are tics – which are repetitive involuntary sounds and/or movements. Vocal tics (sound) range from simple tics such as grunting to more complex tics including repetition. Motor tics (movements) range from simple tics like grimacing to more complex tics such as jumping. Tourette’s was actually the first of my five chronic conditions I ever had diagnosed at the age of 18. Prior to this diagnosis I was wrongly diagnosed as being epileptic with my specialist believing the ‘episodes’ I was experiencing were seizures, when in truth they were tics. My tics have evolved over time and now consist of pacing back and forth, facial grimaces, body stiffening and hand twisting and shaking. I would describe the sensation of needing to tic as an urge, a bit like an alien in my chest fighting to get out which, once I tic, dissolves. I have the ability to control my tics in public, but doing this puts enormous pressure on my body which is not ideal as it increases the symptoms of my other chronic illnesses.

MY TOP 5 TOURETTE SYNDROME MISCONCEPTIONS

MISCONCEPTION – All people with Tourette’s swear

TRUTH – Right let’s get down to the nitty gritty straight away because thanks to the media this is the biggest myth of all. I can categorically tell you that this is false and no, not all people with TS swear. In fact, coprolalia, (the term for involuntary swearing), only affects around 15-20% of the TS community indicating the media is zoning in on the symptom that affects people the least.

MISCONCEPTION – Tics are a childhood thing

TRUTH – It is true some people only experience tics in their childhood and essentially grow out of it, some people will find it comes and goes throughout their lives, but others will continue to have it consistently into their adult lives. I am 32 and tics are still very much part of my life.

MISCONCEPTION – TS is a mental health disorder

TRUTH – Whilst the cause is not fully known, TS is in fact a neurological disorder. TS can however have co-occurring conditions such as ADHD, OCD and anxiety alongside it. Of course, people living with TS can develop mental health disorders separately in the same way anyone else can, but not because of the condition itself. MISCONCEPTION – ‘You can’t be that bad, I’ve never seen you tic’

TRUTH – People with TS cannot tic on demand. In fact, some people have the ability to suppress their tics in order to go about their day-to-day life and avoid discrimination. Whilst there may be a temporary interruption or suppression, the majority of people will still feel the need internally and therefore will need to let it out at some point. Depending on the individual not everyone can suppress their tics or feel the need to, yet that doesn’t mean the people who do are any less affected.

MISCONCEPTION – Having Tourette’s stops you having a typical life

TRUTH – Absolutely not! Tourette’s is a challenging condition there is no doubt about it, but it has no reflection on talent, intelligence or just pure determination. In fact, living with Tourette’s teaches you to be resilient, handle criticism and to be an individual - all of which are great skills to carry with you on whatever path you take. If you need further proof there are many celebrities who have achieved their dreams whilst experiencing Tourette’s at some point in their lives, for example, actor Dash Mihok, jazz musician Michael Wolff and even Mozart was suspected of being a fellow ticker – pretty impressive right?

For more information on TS visit the charity Tourettes Action at tourettes-action.org.uk.

You can read more form Sarah on her Me, Myself and Chronic Illness blog at memysefandchronicillness.home.blog or you can follow her on Twitter @me_illness.

...coprolalia, (the term for involuntary swearing), only affects around 15-20% of the TS community