Everyone else finally sees my tics, but I’m not ready.

I am in my mid 30s and honestly, my Tourette’s has been very mild up until about age 27. After that, my tics started ramping up. I never had many vocal tics until recently. All kinds of things trigger my tics and it’s kind of unavoidable to get through the day without having them be a part of it.

But now people notice them and it’s still something I’m getting used to. My loved ones and friends that are confused by what’s going on and they’re like “Wait what was that, are you okay?” I also get. “ did you say something?” To which I always reply, “it’s a tic”.

It’s definitely taken a toll on my confidence. Being comfortable and becoming okay with having tics around other people instead of isolating at home has been difficult. I can’t even lovingly stare into my partner’s eyes without my head, contorting and twisting, like I’m possessed by a demon. Ultimately, it’s annoying and painful and I hate having Tourette’s. I’ve just been blindsided by how bad it’s gotten and it’s been really depressing. Now I’m to the point where I realize that I’m going to have tics no matter what I do so I may as well try my best to live a full life and just ignore them the best I can and hope everyone else gets used to them too.

The other part that’s hard is I also have a decent social media following and I’ve had to quit making the videos I enjoy making because trying to film me without tics feels impossible and editing now takes like eight times longer. The only reason I do this is because I’m really not comfortable sharing my tics with the world and honestly it’s really not anyone’s business if I’m disabled. I also don’t want to be defined by or remembered as “Oh, that’s the girl with Tourette’s” and negatively affect affecting my career that I promote on social media. And I don’t want my disability to become entertainment for other people. But at the same time, I feel like I am being dishonest and I really should be representing those of us with Tourette’s that don’t have coprolalia. At the end of the day I know it’s my choice to disclose whatever information I want to about myself and I don’t owe that to anyone.

I used to pass as normal and no one would’ve ever clocked me with Tourette’s, and I miss those days so much. I can remember a time not that long ago where I actually felt normal. It’s so wild how I used to be so much more in control of my body and my tics didn’t disrupt me so much. But now it’s obvious, I’m always frustrated and annoyed, and I can’t hide it. All of this just stresses me out, and I was kind of wondering if anyone else relates and struggles with weighing the pros and cons of visibly having Tourette’s on social media and the consequences it may have on your life? Because ultimately, I just hope that maybe if I don’t film myself and try to work on stress management, maybe they will go dormant again. But this has been going on for several years now and I’m kind of losing hope of that happening. So something has to give at some point.