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What it feels like to have Tourette Syndrome

Posted Mon 19th Jun 2017 at 12:52 by Romy Worthington


11 year old Romy talks about living with TS

My name is Romy Worthington and I recently spoke on my local radio about Tourette syndrome to raise awareness for the condition. I wanted to raise awareness as it is Tourette syndrome awareness month (May 15th- June 15th) . Society often thinks Tourette's is just swearing or they think it's a behavioural problem when it is neither. It is a neurological condition causing involuntary movements and sounds called tics.


I am going to tell you about what it feels like to have Tourette syndrome. When you first get diagnosed you may feel relief that you finally have an answer or you may be in disbelief that you have a lifelong condition with no cure. Either reaction is natural and you will get through it. When you are out in public your tics may increase due to anxiety and you can feel the stares from strangers and you wish they knew what Tourette syndrome is but you don't have time to explain.You may have thoughts running through your head such as "why me?" Or "why can't I just stop?" Or "Am I faking it?" I have had all of these thoughts and they are a natural part of having Tourette's and you can overcome it. The "Am I faking it ?" Thought can be the most damaging as you start to blame yourself for something you can't control and I want to tell everyone who has this thought that you are not faking it and it's really not your fault. 


When someone discriminates against you or bullies you , you feel angry but at the same time you feel pride as you want to raise more awareness so more people understand and so nobody else with the condition has to go through that. 


Even though Tourette syndrome may come with many negative emotions, it can be a blessing. You can learn to embrace your condition and use it in ways you never thought you could. I have noticed that when I play the drums , my tics decrease so I am going to start drumming lessons . I believe if you find something you are passionate in doing you can use it to help you.


So overall Tourette's is both a blessing and a curse. But I know that it has given me amazing friends in the Tourette syndrome community and made me unique.


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