I’m still me - now what?

If you expected to be a different Tourette-free person, figuring out your identity as a young adult with Tourette Syndrome can be confusing.

You may have a few questions.

Namely:

What are taxes, and how do I pay them? How do I do this “dating” thing? What is renter’s insurance and why do I need it? Shouldn’t I be different by now?

Shouldn’t I be different by now?

Shouldn’t I?

Being a young adult is difficult for almost everyone. According to basically everyone who's ever been young, it’s a confusing time when half your friends are settled down with kids, the other half are snorting horse tranquilizer at music festivals, and meanwhile you’re supposed to somehow have found the job of your dreams, the love of your life, and a stable living situation when secretly you still need to google how to make grilled cheese.

Yikes.

When you add Tourette Syndrome into the mix, things get even more confusing.

You see, many people with TS were led to believe that it is a self-limiting childhood disorder which, as difficult as it might make navigating playground social dynamics, would not follow them into their twenties. But (as I highlighted in my last post) this is fundamentally untrue; despite ample misinformation to the contrary, Tourette Syndrome is a life-long disorder.

This misunderstanding has led to an entire generation of young people with Tourette Syndrome growing up with false hope only to be disappointed by unmet expectations of an epic proportion. Many of these people never learned to accept their TS, nor to cope with it, because they were expecting it to fade away on its own. Now that it hasn’t, many feel lost and at odds with themselves.

And even if you weren’t banking on your TS disappearing, it’s still difficult when facing high school awkwardness not to internalize the message that things might get easier for you in just a few years. This is where I’ve found myself. I was lucky to have parents who believed that it was important for me to learn how to deal with my TS when it was present, regardless of what may or may not happen in the future. As a result, I learned to accept it and deal with it as a part of myself and my life. That being said, I’d be lying if I told you I wasn’t secretly hoping I’d be one of the fabled individuals to see a remission in adulthood. I wasn’t crushed when my tics got worse in my twenties than they'd been in my late teens, but I was sorely disappointed.

So if you find yourself in this position, what do you do? It’s a weighty thing to wrap your mind around, if all your life you’ve looked forward to being a tic-free, symptom-free version of yourself that you’re now realizing just isn’t going to exist. You’re still you. So now what?

I’m a firm believer in acceptance as the first step to most things. The key difference, anyway, between those of us who hoped to change and those who didn’t is whether or not we went through that step when we were younger. You’re still you, tics or no. With or without them you’re a complex individual with all sorts of good and bad qualities.

I’m a young woman who has great friends, who loves her family, is a good musician, and would rather be on a hike in the mountains than anywhere else. I’m also a terrible cook, kind of scatterbrained, short-tempered, and have a hard time giving up in an argument. And I have Tourette Syndrome.

I love all of these parts of myself. To be clear, I may not like all of them. But I accept that, short of work to better manage the negative aspects of my personality, this is who I am. I could be angry about certain things - honestly I wish I were a better cook, and that I could learn to be more easygoing. But it doesn’t do any good to sit in self-hatred because of these things. I accept myself as a flawed human who, despite being flawed, is worthy of love. I start by allowing myself to be who I am, and doing my best to love that person.

But that’s easier said than done.

This endeavor is a journey, not a destination. It doesn’t come in a day, or a month, or even a year. But it’s a process that’s worth beginning because I can tell you honestly that while I’m far from perfect, I’m a much happier person now at twenty-three than I was at nineteen when I first started to realize that I needed to be kinder to myself.

So, this is what you do.

Rest assured, you don’t have to do it alone. There’s a whole community of people like you and me who are all here figuring it out together. Join a support group. Make some friends. Lean on each other.

Or stick around here.

I’ll be answering all sorts of questions and sharing my stories about figuring out life with TS. I have lots to share.

I can’t answer your questions about taxes or renter’s insurance, though...I’m still figuring these things out too. But hey, that just makes me human.