Usually I have a very wide audience in mind when I write posts – parents, carers, colleagues, and anyone who’s curious about Tourettes, whether they have experience of tics or not. Today, though, I’m writing for a specific group of people – anyone with Tourettes who’s just been made to feel worthless for ticcing by a stranger.

I felt moved to write this by a Facebook post from the mum of a young person with Tourettes describing how he’d just come home after being kicked out of a McDonald’s for ticcing. She described the effect incidents like this have had on his confidence.

My reaction was visceral. I felt furious and protective. I also felt the need to tell him about all the things that have helped keep me going in the face of cruel comments like the ones he’s just experienced. So here’s my letter to this young person and anyone else with Tourettes who’s ever felt the weight of someone else’s ignorance:

Dear fellow Touretteshero,

Firstly, I’m so sorry that you’ve had such a horrible experience. You shouldn’t have to suffer because of other people’s ignorance and intolerance.

You are not the problem. Your tics are not the problem. It’s the other person’s attitude that’s the problem, and it’s their problem, not yours.

Even so, it’s completely understandable that you’re upset by what happened. But don’t feel that you have to deal with it alone, reach out to someone – a family member, a friend, a Facebook group, or to me. There’s a big community of people with Tourettes ready to stand behind you.

Whatever someone else makes you feel, you don’t need to apologise for your tics. Learning how to explain them to other people can help a great deal – when I’ve done this I’ve often seen people’s attitude transform in front of my eyes. Of course, you can’t always have a funny comeback to every hurtful comment, but it feels good to be confident enough to tell someone you have Tourettes which is why you tic and why you’ll go on ticcing.

I know how easy it is for upsetting and negative experiences like this to sit in your mind, and until I started writing this blog that’s what always happened to me. But I’ve come to appreciate that these horrible experiences are balanced by all the spontaneous support I get from my friends and family, and from people I don’t know at all. Can you think of positive experiences like this, or of tics that made you laugh? If you can, please try and remember them now, because it might help you feel a bit better, and protect your confidence.

Dealing with negative experiences can be so exhausting it can feel easier to avoid certain situations altogether. But please don’t let your life be restricted by other people’s attitudes. You have a right to access and enjoy everything that someone without tics does. And when it comes to public services, that right is backed up by the law.

The Equality Act 2010 means that anyone delivering a public service – a restaurant, cinema, shop or school (to name but a few) has a duty to make sure you’re not discriminated against or victimised. It can be really useful to mention this Act to anyone in a position of authority who’s treating you adversely because of your tics.

You might not feel ready to challenge someone immediately, and sending a letter or email of complaint can also be a very good way of dealing with what’s happened. It means you’re doing something positive to make it’s less likely that other people will be treated in the same way, and it gives you the feeling that you’ve stood up for yourself.

Tourettes gives you a unique perspective on the world. It may be very hard to appreciate right now, but the view you’ve been given is a powerful one. You’ll see acts of spontaneous kindness and generosity, and you’ll feel the painful impact of misjudgements and assumptions. Let these experiences help shape the mark you choose to make on the world.

Feelings of sadness pass and I truly hope you’ll feel happy and settled soon.

With love, respect and best wishes,

Touretteshero

Please share your experiences and messages to others in the comments section below.

Together we can stay strong, resilient and make a positive difference in our communities.