After a long, long pause, I am excited to be back here with a new blog entry! The end of 2020 was not kind to my mental health, and it took a lot of patience and help that lead me to addressing the situation as needed. Anyway, this post isn’t about me; it’s about the Tourette’s community. Without further ado, lets dig in!
As a member and viewer of many TS related social media groups, I find that a lot of people ask the question if it is worth going through the hoops to get a proper diagnoses.
And I totally get it.
Medical bills are daunting. Medical professionals can be thick-headed and getting a referral to a proper specialist can be like trying to explain physics to a cow. And then, if you are lucky enough to get to the end of the road and get a proper diagnosis, the doctor then tells you there is no cure for TS. In fact, there aren’t even on label medications for it!
So then why are people like myself touting that it’s worth it? Well, let me lay out a few points.
- Peace of mind – When I was first diagnosed at the age of 12, it was like a huge weight lifted off my shoulders. People in my family and school could no longer look at me and tell me I was just faking it for attention. Or that it was just habits. It had a name, and at least I knew it wasn’t just something I had control over.
- Treatment has come a long way – When I was first diagnosed, there were only a few off-label medications used to treat TS, and they often carried grave side effects. While many medications used to treat TS today still have disruptive side effects, there is a much wider range to try. And if you decided (like myself) not to go with any of them, then that’s totally ok! At least the options are there if needed.
- Community – Being able to go to a page where other people are dealing with something as unpredictable and infuriating as TS can be is a great source of decompression. Even if it’s just going on to make a post saying how much TS just plain sucks some days, you will find sympathizers. You will find others who will offer tips and tricks they learned along the way to not only help cope with tics themselves, but the shame and other feelings involved.
So to summarize, do I think getting diagnosed with something that has no cure is still worth it?
I do hope if you are struggling to find the proper diagnosis for your tic disorder, that you are granted the strength and patience to carry forward. There is some light at the end of this tunnel!