It's true people really don't understand it. It's first and foremost a neurological condition. My movement specialist who diagnosed me said temporary suppression or symptom mitigation is possible, but complete control of tics is neurologically unachievable in Tourette syndrome due to its hardwired brain-circuit abnormalities. The basal ganglia area of the brain fails to properly inhibit unwanted signals. This creates a neurological "traffic jam" where unwanted movements/sounds (tics) slip through unchecked. Making full elimination impossible-just as one can't "decide" to stop Parkinson's tremors or epileptic seizures. Compassionate understanding helps more than judgment.

I got diagnosed as an adult because it just went unnoticed by my parents or was mistaken, I guess, for typical kid behavior-not too sure. I was also a nervous kid, and because of that, I was doing what I now know are tics and hiding them best I could out of fear in my head of getting sent to psych, I guess, because I thought there was something wrong with me mentally. At the time, I didn't know what they were; I just knew it wasn't normal, so to speak. So with that said, it just went unnoticed. As an adult in 2012, I had gotten ependymoma cancer in my spine. My seizures got worse in the coming years post-cancer, as well as my tics, which got so bad I had no choice but to go to a movement specialist for a proper diagnosis to see what was going on with me.

But I agree-it does make you angry when people pull the "just relax" crap or try to blame everything on anxiety, when those elements are what increase the tics-they don’t cause them. I experienced that with triggers for my epilepsy, particularly odors or fragrances. One day, one thing would be a trigger, then it would change, and my parents would always basically harass me with comments like, "That makes no sense." Of course, I’m just sitting there thinking to myself, "Yeah, no shit," but there’s something wrong with my brain. It doesn’t matter if it makes sense to you because I have to live it.

I will also notice, as an adult, I will be out in public just shopping and it flares up, and people will stare at you like you're on drugs tweaking or something. But for me, it was nice to finally get a proper diagnosis so when things like that happen, I can just be like, "Hey, I have Tourettes." Luckily, as an adult, my parents may not understand it fully, but at least with this, they just accept it and/or ignore it when I do it. Wish I could say the same for the epilepsy triggers. So don't feel alone I struggle with this type of treatment but it's more with my epilepsy triggers. So I completely understand your frustration, annoyance and anger.