I was one of the lucky ones. My mum knew about Tourette. My dad had tics on his side of the family so my behaviours weren’t exactly alien to the family.
Sadly, the same can’t be said for everyone. It’s the 21st Century and children are still struggling to find support from the ones they need support from the most. Family. When parents don’t understand your tics, what chance do you have of living a normal life?
I was nine years old when I was diagnosed. I’m now in my thirties.
Don’t get me wrong, it is still a struggle. But the diagnosis provided me with some clarity. Although I am still putting the pieces together, it’s good to know there was a puzzle at all.
Kids are taking to the internet to have a voice. To find a community. I see it all the time in Reddit forums, YouTube comments and on social media pages. It really is heartbreaking.
Why do they need to go online? Where are their parents?
They are there. They just don’t care.
Care is probably the wrong word. It’s not that they don’t care. It’s more that they don’t care outside the bubble of ‘important things to care about’.
Because there is so much misinformation about Tourette Syndrome, people around us don’t know why we behave the way we do. And when they think of Tourette, it’s ‘that swearing disease‘. ‘That’s not what you have‘.
We are told we can’t have Tourette because we don’t swear. And when we open up about being stressed from Tourette we are told to stop complaining.
And when we get angry, we are punished.
It is an endless cycle of toxicity and abandonment for some children with the condition.
For those children with Coprolalia (the swearing aspect of Tourette), even they can become a victim of punishment. ‘Behave!’ ‘Stop swearing!’
No level of shouting or being grounded will take away the motor and vocal tics. If anything, it will make matters worse.
We desperately need to raise awareness for Tourette Syndrome. To help us understand ourselves, and to help those around us understand too.
I do strongly believe that most people, regardless of ignorance, want the best for us. The problem is many people (including family members) form this universal viewpoint based around their own experiences.
The more we let people know that our experiences are different from theirs, the sooner we will heal. As people, as family, as a world.