Living with Tourette’s Syndrome

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Tourette’s Syndrome is an obscure and misunderstood disease in Malaysia. It’s a neurological condition which affects about 1% of school-age children and adolescents, but it does affect adults as well.

A couple of years back, a famous radio announcer and theater practitioner received a lot of flak online for suggesting that a member of the audience with vocal tics should “…gag herself, or at least bring a pillow to bark into,” while at a particular stage performance.

This audience member had Tourette’s syndrome, and it ignited a heated debate. The public was split on whether she was disrupting the performance, or whether everyone should just accommodate her.

While the performing arts scene were split, the whole episode reminded me of my friend David. He has Tourette ’s syndrome too, which comes out as physical and sometimes vocal tics. I realized we’ve never discussed it, so I sat down with him recently to talk about his life. This is his story.

Growing Up Pretty Normal

My name’s David and I am a regular guy (or at least I consider myself pretty regular) who grew up in  Petaling Jaya. It was me, my mum, and older brother. We lived upstairs in a double storey house. We shared a house with my aunt and her kids, so there were about 6 of us in the house.

I lived there until I was 18, which was when I moved out to another house with my mum and brother. So that makes me a true blue PJ-ian, born and bred. I went to school there and everything.

When I was young, my aunt used to babysit me until my Mom came home from work. She was a babysitter so she took me and my brother on too.

You may wonder why I didn’t mention my Dad. Well, he and my Mum separated so I’ve lived apart from him ever since I was eight.

Image source: Pxhere

“I Remember When it Started”

I remember quite clearly when my symptoms started. I was eight and in standard 2. It started pretty mild and gradually progressed. At first it was just rapid eye movements and blinking.

Nobody around me knew what it was. My mum and my aunt used to think that it was all due to bad habits, so they would cane me or nag me and try to get me to discipline myself.

The kids at school were generally nice, except for a few who called me names like ‘Piggy’ because of the snorting. Apart from that, I had my own group of close friends, even in secondary school. They didn’t seem to notice so I was treated the same as everyone else.

From that time until I was 18, I didn’t see a doctor. I myself didn’t really know what was going on so I used to just practice lots of self control. I would just suppress my tics to the best of my ability.

Being Officially Diagnosed

By the time I was 18 the symptoms couldn’t be ignored so I went with my Mum to see a neurologist. She has done some research so this was the first time I got an official diagnosis of Tourette’s. That was about 10-12 years ago.

I’ve been seeing the same Doctor since and have tried three types of drugs. The first two were terrible. They made me groggy all the time and I had the feeling that my tics weren’t acting up because I was in a constant haze. Now I’m trying another type of medication (it’s my third drug) and it seems to be the best since I don’t get that groggy side effect.

The symptoms come and go. Sometimes they disappear altogether and sometimes they get quite bad. I have no control over that.

Adulting

The first time I left home was for University, and since I’ve graduated with a degree in Mechanical Engineering, I’ve never really looked back. My first job was at an Engineering consultancy and now I’m attached to the Ministry of Health.

So far, I’ve been fortunate that the people who interviewed me have not discriminated against me. I actually think that they have been impressed with my confidence! Colleagues and superiors have been largely supportive.

I’ve only had two incidences where I felt discriminated against. The first was when I was in a team meeting with a client. Although he didn’t say it to my face, he mentioned it later to my colleague that he felt annoyed with my tics and that it disrupted the meeting.

The second time was when this superior of mine made me sit out a meeting. This one was particularly annoying because I had driven 2 hours to be at the meeting, and I ended up waiting at the cafeteria until he was done.

I’m Going to be a Dad!

I’m quite happy now though. Most people love and accept me, and I’m even happily married. I met my wife in Uni and at first, her Mum had some reservations about our relationship. But over the years she came to love me too, despite my condition.

Image credit: David

Now we’re expecting, and I’m going to be a Dad soon. The nurses at the clinic where my wife gets her monthly check-ups are so nice to me, they push me ahead of the line. I sometimes get perks like that, but of course I don’t misuse it (haha!). I don’t even park at the disabled parking so I try to stay honest like that.

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