Growing up, I was one of the lucky few with a cousin my age who went to the same school, same tuition classes and spent most our free time together.
She was a regular girl with a great sense of humour. But, she was “different”… in a sense that she has Tourette Syndrome.
Growing up in the 80s with Tourette’s (even today) was tough. For the longest time I can remember, Ivon would jerk her leg in kicking motions and emphasise certain words (louder) repeatedly when talking. She also has upper body twitches.
Tourette’s is a neurological disorder accompanied by involuntary movements or tics, which are frequent and repetitive. These tics vary from one person to another.
“I knew there was something ‘ugly’ about me at an early age of six or seven as I got bullied and teased because of my tics. I tried to control it many times but the urges just got worse. I thought it was just an ugly habit which was difficult to break,” said Ivon.
“My parents were also very concerned and did everything, from nagging me to stop and taking me to see a doctor. But none of it worked.”
Hence, growing up, Ivon found ways to somewhat hide her tics by making it look like she was dropping something, or falling, making her look clumsy.
“It was tough. Because of the tics, I was embarrassed of my behaviour. People didn’t understand and thought of it as a bad habit.”
“I often felt ugly and that stripped me off my self-esteem and confidence when I got teased in school (by her classmates and teachers) and in public. I was ostracised and preferred staying at home,” she said.
Even at home, she said she was constantly talked about in family gatherings which made her feel uncomfortable and hurt. It was only until she was in her mid-20s when she was watching a TV segment on Oprah about Tourette’s did she learn of the syndrome.
“I had mixed feelings because I finally realised that there was a name to this but no cure. I started to do my own research about Tourette’s and learnt more about my symptoms,” she said.
As an adult, the bullying did not go away. In fact, she said, it got worse.
“When I started working, my colleagues and strangers would stare and approach me asking me about my twitches; and they do it even today. It was just so hard trying to fit in. Finding work has proven to be a challenge on its own as my interviewers would also ask me about it, making the situation uncomfortable. I faced countless job rejections and at times, got my work position changed because a colleague or a client would feel uncomfortable working with me,” she said.
Tourette’s is not only emotionally difficult but also physically tiring to cope with. Despite finding out she has Tourette’s, Ivon’s problems did not go away. However, it gave her some form of relief that she was able to handle people and situations better knowing about her condition.
“At least now, I have stopped blaming myself and am able to explain to people who ask me about it,” she said.
“I don’t have a problem with my Tourette’s, but it is society who seems to have a problem with it.”
I couldn’t agree more. Tourette’s has taught and moulded my cousin into the person she is today. I believe it is both a struggle and a blessing at the same time.
Ivon has a great sense of humour – learnt from trying to cover her tics while growing up. She is stronger emotionally and empathetic because she has been a subject of whispers and stares.
Today is Tourette’s Awareness Day. Let’s all be kinder and sympathetic to those who seem a little different.