Tourette’s exists only in the eye of the beholder
The Beast Beneath the Surface
We are all children of the same ‘beast’. Everything we have been told, taught or taken for granted is part of that beast that many people with Tourette’s carry within them every day. It’s not just about tics, outbursts or comorbid conditions; that’s merely the tip of the iceberg. Beneath the surface, the toughest and most invisible battles are fought: isolation, misunderstanding, the guilt of not being good enough, and the chronic stress of always having to rise to the occasion so as not to disappoint others’ expectations.
Often, we grow up sheltered in an idyllic world of care and affection, far from the harshness of life. It is done out of love, but outside that shell, the world constantly labels you. The real suffering does not stem from the biology of the tics, but from the way the social environment distorts, judges and forces you to live with this syndrome.
When Tourette’s Really Exists
We must not feel different just because they have labelled us that way. We mustn’t feel accepted just because they tell us everything is fine. Because more often than not, everything isn’t fine. Because sooner or later you discover that Tourette’s really does exist, and it isn’t the one they made you believe you have. It exists when you feel guilty about how you make your parents feel. After a day of screaming and outbursts, and you hear them arguing or crying in the corridor outside your bedroom.
When you realise that the friends you’ve always had aren’t actually real friends; they walk away. They team up with others and you become their favourite pastime. When Mum is no longer there to message the group chat to get you invited to birthday parties, and you’re the only one left out; the odd one out.
Tourette’s exists when they comfort you after you’ve had a rubbish day and you’re feeling awful. But they come to comfort you by reminding you just how ‘special’ you are. Like when at school they have to find a way to integrate you, because you seem more like a problem to manage than a lad to get to know.
Tourette’s exists when, out of boundless love, those around you cradle you far away from the way the world really is. Under a splendid glass dome, sheltered from everything and everyone, unaware of when that thin glass will shatter. Then, there, you’ll have to face a world on your own that they’ve never shown you.
Living Under a Glass Dome
Tourette’s exists when they don’t trust you because you’re the odd one out in the group, and so they’ll always ask someone else to do something or only give you tasks without responsibility to avoid unpleasant consequences.
It exists when they convince you that your only safety lies in revealing your problem first. Because that would be the only way to be accepted and feel at ease with people.
The Invisible Labels
There are countless forms of Tourette’s Syndrome, if we choose to look at it this way. Many of you are experiencing them, or have experienced them; others are being experienced by your children. We could go on writing page after page; you could share your own experiences, so that by reading them, people might be spared from making the same mistakes.
This 7 June, to mark International Tourette Syndrome Day. Don’t let others decide what kind of life you deserve to live. Don’t let them make you feel wrong, judged or inferior. And if anyone keeps judging you by your tics rather than by the person you are… screw them. You just keep tik different!
