Dear You, From Someone Who's Been There

Posted 10hrs ago
by Saskia Muller

Share

When I was diagnosed with Tourette syndrome, I remember desperately searching for reassurance. I wanted someone to tell me what my future might look like. I wanted someone to understand the fear, the uncertainty and the questions racing through my mind. More than anything, I wanted a letter like this, something honest enough not to pretend everything would be easy, but hopeful enough to remind me that life wasn't over. I never found that letter, so years later, I decided to write it myself.

If you've found yourself reading this, there's a good chance your world has changed recently. Perhaps you've just been diagnosed with Tourette syndrome, or perhaps someone you love has. Maybe you've suspected it for years and finally have a name for the thing that has followed you around for so long. However you've arrived here, I want to start by saying something that I hope you'll believe one day, even if you can't believe it today: you are going to be okay.

Right now, your mind is probably full of questions. You might be wondering what your future looks like, whether your tics will get worse, whether people will stare, whether you'll ever feel "normal" again. You might already be mourning a version of yourself that you thought you were supposed to become, or perhaps you're simply overwhelmed by finally having words to describe something you've lived with for years. Receiving a diagnosis can be incredibly emotional. For some people, it brings relief. For others, fear. Often, it's both at the same time. There is no right or wrong way to feel about it.

I wish someone had told me that a diagnosis doesn't suddenly change who you are. It doesn't create Tourette's overnight; it simply gives a name to something that has already been part of your life. You are still the same person you were yesterday. The things you love haven't changed. Your personality hasn't changed. Your dreams haven't changed. What has changed is that you now have language. Language to explain your experiences. Language to ask for support. Language to understand yourself with a little more kindness than you perhaps could before.

You are also about to discover that there are a lot of misconceptions about Tourette syndrome. Unfortunately, many people only know what they've seen in films or on television. They may think Tourette's is simply swearing, when in reality only a minority of people experience coprolalia. They may think every tic is loud or dramatic, when some are so subtle that nobody notices them at all. They may assume tics are voluntary because they sometimes appear to stop for short periods, without realising the immense physical and mental effort that suppression requires. You will probably spend more time educating other people than you ever expected to. While that can be exhausting, please remember that it is not your responsibility to justify your existence or prove your diagnosis to anyone.

There will be days when your body doesn't feel like it belongs to you. That might sound frightening, but I want to be honest with you because I think honesty is kinder than false reassurance. Some days your tics may barely bother you, and other days they may leave you physically sore, emotionally drained and desperate for rest. There may be moments where every muscle aches from repetitive movements or every word feels like a battle against sounds you never intended to make. There may be times when people laugh, stare or ask uncomfortable questions. On those days, it's okay to be frustrated. It's okay to grieve. Living with Tourette's doesn't mean you have to be endlessly positive. You are allowed to acknowledge that something is difficult without giving up hope altogether.

One of the hardest things about Tourette's is that so much of the struggle is invisible. People often see the tic itself, but they don't see the urge beforehand that builds until it feels impossible to ignore. They don't see the concentration it takes to suppress a tic during an interview, an exam or a quiet room. They don't see the rebound afterwards when your body finally lets go. They don't see the anxiety of entering silent spaces and wondering whether today will be the day your tics decide to make themselves known. They don't see the exhaustion that comes from constantly monitoring yourself in environments that weren't designed with neurological differences in mind. If people don't understand those things, it doesn't mean your experiences aren't real. It simply means they haven't lived them.

Please don't spend your life apologising for existing.

This might be the sentence I wish someone had written to me years ago. You will probably find yourself saying "sorry" more times than you can count. Sorry for making a noise. Sorry for knocking something over. Sorry for blinking too much. Sorry for repeating a word. Sorry for disrupting the silence. Sorry for being noticed. Somewhere along the way, many of us begin to believe that our existence is an inconvenience to everyone around us. It takes time to unlearn that belief, but I hope you do. You deserve to occupy space just as much as anyone else. Your disability is not something you need to apologise for.

You may also discover that Tourette's doesn't arrive on its own. Many people with Tourette syndrome also experience OCD, ADHD, anxiety, autism or other co-occurring conditions. If that becomes part of your story too, please know that you aren't somehow "too complicated." Your brain simply works differently, and that's okay. You are not a collection of diagnoses. You are a whole person whose experiences deserve to be understood in their entirety, not reduced to a checklist of medical terms.

I hope you find your people. Whether that's through support groups, online communities or a single friend who simply listens without trying to fix you, I hope you experience what it feels like to be accepted exactly as you are. There is something incredibly healing about sitting with someone who doesn't flinch when you tic, who doesn't interrupt you to ask if you're okay every few minutes, who carries on the conversation because they recognise that your tics are simply one part of who you are rather than the whole story. Those people exist. Sometimes it takes a little while to find them, but they are out there.

There will come a day when Tourette's isn't the first thing you think about every morning. It may always be part of your life, but it won't always occupy so much of your mind. You'll learn what helps and what doesn't. You'll begin to recognise your own triggers. You'll develop little routines that make difficult days more manageable. You'll realise that although Tourette's shapes parts of your life, it doesn't have to define all of it. Slowly, almost without noticing, you'll spend less time wondering whether you're capable of living a full life and more time getting on with living it.

If I could leave you with one final thought, it would be this: be gentle with yourself. You're learning to navigate a world that often misunderstands neurological differences, and that isn't easy. Celebrate the small victories. Rest when you need to. Ask for help when it's offered. Laugh when you can. Cry when you need to. None of those things make you weak; they make you human.

One day, you'll look back at this moment and realise that what feels like the end of certainty is actually the beginning of understanding. A diagnosis isn't the closing chapter of your story. If anything, it's the point where you finally stop blaming yourself for things that were never your fault. It gives you permission to replace shame with compassion, confusion with knowledge and isolation with community.

So, if you're reading this shortly after hearing the words "You have Tourette syndrome," I want you to know that someone who has walked a similar path is quietly rooting for you. Your future is still yours. It may look different from the one you imagined, but different does not mean less. There is still joy ahead of you. There is still laughter, friendship, achievement, love and belonging. There is still a life that is wonderfully, beautifully your own.

And one day, I hope you'll write a letter like this to someone else.

Love always, Saskia Müller

Return to blog