Living with Tourette syndrome: “I always say sorry because it gives me a chance to explain myself better”

After 10 years of living with Tourette syndrome (TS), 19-year-old RADLYN NAIDOO, born in Durban and studying at the University of Pretoria, has been sharing his experience of living with Tourette syndrome on social media.  He spoke to Lizeka Maduna about his quest to educate people and eliminate the stigma against those living with it.

The most common symptom of Tourette syndrome – tics – which was triggered by my parents’ divorce, surfaced at the age of nine but I was only diagnosed at the age of 13.

Tourette syndrome is a neurological disorder that affects multiple parts of the body, especially the brain due to dopamine receptors working in an inefficient way. It can be amplified by stress, anxiety and other feelings of emotions that are exaggerated.

Growing up and living with Tourette syndrome was a challenge. In primary school I was often teased and called different names; some educators even had to chase me out of class at times and I was often isolated.

My family didn’t believe me at first, for three years they used to call me “disturbia” which made it difficult for me to talk even when I needed to. This aggravated my tics and often made me feel helpless.

A typical day dealing with TS is a bit frustrating. I basically do what most people do – wake up in the morning and go to campus which is a challenge sometimes as I can’t concentrate in class because of my twitches and restlessness. I normally sing whenever my tics worsen because it helps calm my nerves and the tics.

Although some people understand my condition, there are those that don’t understand and make derogatory comments whenever they come across me or witness my twitches. Sometime last year on campus, I had an encounter where I had to deal with someone who had seen me twitch and was very rude to me.

Having people staring and making different remarks about me is not easy but I have accepted that Tourette syndrome is only a part of me, not the whole of me.

Having to apologise for something that you have no control over has become my approach to getting people to listen to me, but dealing with ignorance and arrogance from people is the hardest part of it. I am usually told not to apologise about it but I feel that I have to be sincere about it and apologise. I always try to approach it in a very sincere and humble manner because it somehow initiates a person to want to listen. I always say sorry because it gives me a chance to explain myself better.

Last year I decided to start a blog. It was the beginning of my initiative to raise awareness and educate people about Tourette syndrome around the globe.

For those who don’t have Tourette and aren’t well informed about it, if they come across someone who has it, they shouldn’t stare or judge them because what they see isn’t what they like to see. Living with Tourette doesn’t make one less of a human being and those living with it should embrace it because they are not abnormal – they are just different.

To learn more about Tourette syndrome, visit Radlyn’s Facebook page, My Life with Tourette Syndrome.

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