“Despite my tics, I’ve learnt to love myself”

Josiah Ong, who has suffered from involuntary tics since age 5, shares his experience living with Tourette’s syndrome.

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“Facial grimaces, shoulder shrugging, arm swinging, neck jerking, excessive blinking and vocalisations such as making squeaky noises ― these are tics that I’ve been familiar with since I was 5 years old.

I’m now 24 years old and studying business at the National University of Singapore.

Though I was diagnosed with Tourette’s syndrome when I was 14 years old, I’ve had it since I was about 5. Tourette’s syndrome is a neurological disorder characterised by repetitive, involuntary movements and vocalisations called tics.

My tics were more frequent and severe before my diagnosis, that is, before I started medication. I would twitch every few seconds and parts of my body, especially my neck, would even get sore from it.

The tics worsened when I was 13 and started to affect my breathing. I started taking in sudden deep breaths, like I was gasping and short of breath all the time, and people would ask me if I was okay.

Self-esteem and self-image issues surfaced because I was constantly twitching and constantly viewed as abnormal or a weirdo.

Some people would say that I have these very bad habits, and that it was within my ability to control them. I think they saw me as this delinquent or a boy with a lack of self-control as a result. That’s ironic ― because anyone who really knows me would know that I have decent self-control, or at least, I hope I do!

Indeed, it had quite a negative effect on my self-image and self-confidence growing up, and I was constantly filled with self-reproach.

It was my own demons I had to constantly battle. Self-esteem and self-image issues surfaced because I was constantly twitching and constantly viewed as abnormal or a weirdo.

 

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In school, most teachers didn’t give me a hard time as they tried their best to look past my tics. But I think, sometimes, during an exam, they’d look at me suspiciously like I was trying to cheat because I kept turning my head to the side when I twitched. But then they'd realise it wasn’t something I was doing for the fun or thrill of, so they’d look past it.

The worst experiences was when I had to do drills in Secondary school and I obviously could not ‘stop fidgeting’. It was like that in the army, too.

One incident stands out in my memory. We were playing soccer during a PE lesson and I couldn’t concentrate on the ball because I was blinking and twitching the whole time. Then, the ball suddenly hit me in my stomach, which hurt a lot. But what hurt even more was the knowledge that I was ‘incapable’ of doing a simple sport like the rest of my classmates.

What hurt even more was the knowledge that I was ‘incapable’ of doing a simple sport like the rest of my classmates.”

Back then, my mum reacted in the way any loving mother would have ― she did not really react and definitely didn’t make a big deal out of it. Of course, she tried to seek out solutions or ‘cures’. She tried to take me to acupuncture sessions and to introduce me to yoga and meditation to help me relax and breathe calmly.

My parents have always been there for me to talk to and they never stopped providing emotional support and love. They’re never embarrassed of me. My brother, too, has always been my guide and my pillar. I've always looked up to him, and he's usually the first person I confide in. Nowadays, it's my boyfriend. He's my main pillar and the first person I run to when I’m burdened or sad.

 

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Receiving my diagnosis was actually kind of therapeutic and cathartic. It felt like a weight had been lifted off my shoulders because there was a medical reason to why I had been doing all these tics.

It was as if the doctor was saying, ‘All these years, all those people who blamed you for not controlling yourself and breaking these bad habits, including yourself (I’d been programmed into thinking maybe it really was my fault that I had Tourette's), well, they've been wrong. It's never been your fault’.

On top of that, my tics were reduced drastically when I started taking medication daily ― I’ve never felt so relieved. Nowadays, I mostly just blink or twitch my neck a little. My breathing is still a little irregular though and I get breathless from time to time.

I'd been programmed into thinking maybe it really was my fault that I had Tourette's.”

To anyone else who is suffering from Tourette’s syndrome, or for parents who have kids with it, do look into finding that comfortable dose of medication. Different people may react to the side effects differently. I’ve also heard that certain diets (like a gluten-free one) can help. It's about finding whatever works for you or your child.

Always be supportive and never embarrassed, because the last thing I’d have wanted to know is that my own parents were ashamed of me for doing something that wasn’t my fault.

Believing in and learning to love myself were some of the hardest things I had to learn late in life, and I'm still working on it. The teenage years are already hard ― what with social pressure to conform, appear cool or even ‘normal’ ― so, you can imagine how much harder it was for me to find comfort in who I was and presenting that self to others.

In a way, I kind of regret that I didn’t let these inhibitions go. You’re only an adolescent once, and I wish I'd learnt sooner in life not to give two hoots about what people thought of me.

In the grand scheme of things, it's my version of my life that counts.”

Josiah Ong, 24, lives in Singapore.

Photos: Josiah Ong

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