By Luana Nogueira
It took me long enough to find out I have Tourette's, that by the time I did, it was more a relief than a burden.
There's just something about getting your answers late, after not knowing what's up for what feels like a lifetime. Instead of thinking, "Well, here's this awkward thing I'll have to live with for the rest of my life", you get to look at all the odd stuff you've already been through, and realize that, hey, you're not infected with an alien virus!!! (Don't worry. I never actually thought I was).
When I said finding out was a huge relief, I meant it was enough to pull me out of a painful ticcing crisis that made me want to sleep on the floor for most of the day. It took a big bunch of anxiety, and threw it out the window. I felt happy, even! Things made sense!
But, of course, not everything about this was fun and rainbows. If there's one bad thing you get from not understanding your tics, and your mood swings, and your compulsions, for over 11 years, it's the nagging feeling ... that somehow ... it is all your fault.
And oh, is it hard to get rid of that crazy idea.
Now, this starts with the very common issue most of us have with our tics from the very start: people asking us to stop.
It's a tricky thing, because, besides those exceptions where the person asking is an annoying jerk with zero social skills, this kind of request often comes from people who care about us. A teacher. An aunt. In my case, my parents.
And when someone asks us to stop ticcing, even if that person is ourselves, we just ... well, deep down, we just know we *can't*. Even if we don't know why we can't. Which makes things a little bit hard when, to do what is asked of us, to avoid trouble, to stop bothering someone, or potentially hurting ourselves, or being weird, or any other number of things ... we actually try to stop.
So yeah, I tried to stop my tics until I was 20. You can probably guess how that went.
Every new tic and compulsion had its own set of reasons for why it needed to be stopped in its tracks. Nodding my head was pretty noticeable at school. Biting my nails was bad. Blinking too much was annoying and (apparently?) could lead to needing eye surgery. Coughing woke people up when they were trying to sleep, and put me at risk of throat issues, and led to a thousand talks about taking me to a doctor. Picking my skin made me bleed, and gave me ugly scars, and made me feel like a mess. Full body tics ... were pretty painful.
And I tried!! To stop!! Each of them!!
And I couldn't.
And I beat myself up for it.
Why are you like this? Why can't you just stop? Why don't these things ever go away?
But let's fast forward a little bit to when everything finally made sense ... because, pretty much overnight, as if by magic, I was fine with everything, with not a single worry in the world, fully aware that my tics were not my fault, and that it was completely fine that I couldn't stop them.
Um ... does that sound a little weird? Yeah? Okay, because that's not what happened.
It turns out, knowing for a fact that tics can't be controlled is not enough to cancel out a whole life of feeling otherwise. Sure, it was a relief to understand things, and rationally I knew that Tourette's was out of my control, but I still had these moments of doubt ... because, wHaT iF tHiS iSN't TOurReTte'S??? What if I'm making this up, what if these other people have Tourette's, and I'm just messed up and supposed to control what I'm doing, what if I'm not trying hard enough, WHAT IF IT'S STILL ... MY FAULT?
Don't judge me too hard, these weren't my brightest moments. I blame Brian, my sleep deprived brain. And it took a few months, but eventually, these crazy doubts went away, and I got more comfortable with the fact that, yeah, this really is not my fault at all, and all of it is okay.
Or... or did I?
I thought I had. But, here is where we come to a more subtle version of the guilt trips that any Touretter might face. And maybe it has a little less to do with "Why do I do this?" than with ... "Am I handling this the right way?"
You probably know those moments, when you're supposed to be quiet and still, but can't manage it. When tics get a bit worse, and make you uncomfortable, or rather worried. When you're depressed for no apparent reason, and feel bad for feeling down. When anxiety kicks in and you think you must be doing something wrong. When a compulsion gets a bit out of control. When your mind is chaos and you can't get things done. When you can't fall asleep no matter how hard you try. And you think ... maybe if I made more of an effort ... maybe if I were smarter about this ... if I stressed less ... if I had the right mindset ... if I tried hard enough ... maybe then things would be better.
And it all goes back to the same question. Am I to blame for this?
These things always hit me when I'm at my worst. There isn't much use in trying to reason with yourself when everything you're feeling doesn't come from reason at all, and all the flaws pop up against the background, and everything seems bad. I just try to push the thoughts aside.
Because, wanting to do better is usually a good thing, but this is different. This is unhelpful. This is too much.
And I wish I knew how to keep it from happening but, really, I know I'll fall into that trap again. And maybe it'll happen because I can't help it. Or maybe there'll be a chance I can actually do better. And maybe, either way, it won't help to beat myself up. And maybe I'll do it anyway.
But I guess it helps to at least have a notion that, whatever it is I'm doing and feeling? It is pretty dang fine.
Reason may not always speak too loud, but it can at least whisper. So if you're going through one of those rough patches, where it seems that nothing you do is good enough, remember that both brains and Brians get clumsy sometimes. And whatever it is you feel is your fault... is probably not.
Luana Nogueira is a blogger and designer from Spain. You can read more of her writing at https://bookstormgirl.wordpress.com.