How did you get diagnosed and when did the tics start?
Diagnosed August last year. I’m 23 tics started when I was 19 probably, I lived with my parents when things were getting out of hand, and yes I got in trouble. My mother didn’t seem to believe it could possibly be TS, despite doing research, until I got diagnosed. She screamed at me plenty, and even cried cause she hates the word cunt so much. Honestly, I think she was doing her best, but its just tough to adjust too, for a parent of an adult.
Do you think there’s a reason why this disorder started when you were 19? Was it a sudden outbreak or did you feel it incoming for years but you could control it?
I don’t know why it started, my doctors are all confused on that question too. It started extremely slow. Used to just happen when i thought no one was around, then they got louder at home, then they started leaking slowly into work, and now here I am.
What are your tics?
Coprolalia, coprographia, coproxia, echolalia, head jerking, weird faces, staring, shuckling, gasping, hiccuping, barking, howling, many more. They however don’t all happen at the same time.
What is coproxia?
Doing inappropiate things with my hands. In my case just flipping people off, but in others not being able to stop from touching people inappropiately, which is no doubt impossible to live with.
Do you have a favorite word or phrase when you tic?
I haven’t said it in a while, but “fuck my cunt till it fucking bleeds you bitch ass mother fucking pussy fucking suck my dick mother fucker” I’m also kind of proud my TS invented the insult “cunt headed whore” I really am not creative enough to come up with either of those phrases on my own.
Can you joke about it?
Sometimes. Sometimes my tics surprise me, and make me laugh. Sometimes the reactions are pretty golden. Personally I don’t remember ever laughing when I was away from people who knew me, because the reactions of strangers towards me is a lot different when they see people next to me acting totally normal. When I’m with friends strangers act less afraid of me, and they don’t make fun of me. I get made fun of by teens a lot when I’m alone, and sometimes even adults!
Is tourettes involuntary?
Kind of, its disvoluntary, meaning I don’t choose to tic, however I SOMETIMES can stop it. Controlling tics causes TS patients either pain or discomfort, and eventually does need a release, there’s a build up of pressure similar to holding in gas. Some people with TS can control it all day, some people with TS get breaks from their employer to tic for 5 minutes away from customers, and come back to work, I can only safely control it for less than 10 minutes
What is the physical sensation you feel when attempting to stop / control your tics?
When holding a tic in that part of the body physically becomes really tense and generally uncomfortable, and mentally the feeling of having to do something, or having to move that part of the body. A pretty decent analogy is like having to breathe – you can control it to an extent but you start getting the physical sensation of having to in your chest, and just like with tics it happens automatically if you’re not thinking about it
Are there any medications that can help you control it?
Yes, there are tons of medications. For anyone with severe TS, in order to function we generally need anti psychotics. Side effects include ED, extreme exhaustion, severe and crippling depression, and many more! Intended effect, to reduce our ability to feel emotions, this causes a reduction in tics. I’m in middle of trying to get medicinal marijuana, which my neurologist says won’t get me high, and will only stop tics. Considering I work with power tools, I just can’t afford to get high at work, I’d lose a finger.
Do all people with tourettes swear?
No the disorder for swearing and saying inappropriate things is called Coprolalia. Only 10% of people with TS have coprolalia, I am one of those 10%
Have tourette ever get you in trouble with strangers? Like a fight or calling the police?
I’ve never been in a fight, but there have definitely been people who thought I was talking to them when ticcing. I remember one time someone called be a bitch after I tic’ed cunt in his direction. Recently someone on the bus shoved me with moderate strength and told me to stop. Nothing too crazy.
Why do people with tourettes never involuntarily shout nice things?
Sorry there’s no real answer to that question that I know of.
To what degree do your tics interfere with activities you’re already concentrating on doing?
Generally zero. Sometimes I spit out food and mumble stuff in a tic, thats about the worst of it.
Do you feel like you need to warn people ahead of time, or do you just like to go with the flow and let them figure it out?
I’m trying to find the right approach. I stopped taking the bus when I don’t have to, walked an hour to the bank each way yesterday instead. I used to just stare intently at my phone, and pretend I didn’t notice all the people changing seats. Its kind of a tough call when to explain, I’m known to start conversations in large groups with “Hey I’m me, I have tourette syndrome” but when it came to the bus I just couldn’t tell every person getting on and off, it would be non stop.
My friends normally warn people, so like I came home a few days ago and my roommates were studying with some randoms, they didn’t react at all to me so I have to assume they knew. I do my best to give out a general warning when meeting a new group of strangers, I went to a music festival with a group on the internet, and posted in the fb group once. I can only assume there’s probably always at least one person who doesn’t read my post/message in these situations. Some don’t seem to notice under their own noses when its only mildly bad, something I’ve heard more than once “I thought you just swear a lot”
Do you tourette-write? Do you have the urge to write out tics (that you can correct afterwards) or is it just spoken language?
Yes I have coprograpia, which means I type out swear words. Its not a severe tic usually, so if I’m on discord I usually don’t and its very rare I hit enter. Some people can’t stop themselves from hitting enter. When singing I tend to tic less. I’m in middle of learning hebrew just tic’ed out zayin be’ayin yesterday, which means a dick in the eye, this was my first tic in hebrew. I imagine as I get more fluent I’ll tic more and more in hebrew.
How do you sleep? Do ticks just naturally slow down come the nigh time or do you have to take medication to put you to sleep?
Sometimes tics get in the way of sleep, but they do die down as I get more tired. Sometimes I’ll be almost asleep and scream suddenly, then be wide awake. No I don’t take sleeping medication.
How do you deal with your stress daily?
I don’t, TS just isn’t something I can get used to. I feel like my existence here disturbs others, and although not my fault, it is my problem. There are things I enjoy though, like video games, music events (so loud no one can hear me) and hanging out talking to friends. If marijuana doesn’t work, I’ll start on anti depressants next.
Do exercises help or does your TS interfere with those activities as well?
I can do any normal activity, my motor tics aren’t particularly severe though. I started going to the gym years ago, I remember thinking it helped a little when I started. I’ve gone to the gym on and off since then, I don’t really remember it helping at all last time I tried.
Have you ever taken psychedelics before?
Yes. They don’t affect my tics.
What do you hope to do with your life?? And do you think you tourettes limits your opportunities or have people been pretty understanding?
I want to go to school to be an electrician. I start a new job as an electricians helper soon, fingers crossed my boss doesn’t fire me the second he finds out I have TS, which has happened to me before. Worst case scenario I should be able to find an employer who does solely new construction work, where it won’t matter if I swear. TS definitely limits employment opportunities.
People in general are more understanding than employers who stand to lose money. I used to have coworkers that actively mocked me for having tics in the meanest ways they could think of, but most have had some level of understanding.
How do you feel about people with tourettes in shows/movies? Or any representation in media?
I’ve watched the South Park episode which did a decent job of explaining TS in the time slot allotted. I’m very happy it exists since I started ticcing after watching it, and that was my only hint as to what was going on with me. I’ve also watched Front Of The Class) I think they did a shitty job of it, and could’ve given a lot more explanation into living with it, however at least two people I’ve met only heard of TS through that movie, so all in all glad it exists.
What do you wish more people knew about Tourettes?
I wish more people would know what TS is as a starter. In Israel where I live, most people seem to have never heard of it, but they do understand the concept of tics. I also wish people would understand tics like to make themselves seem voluntary. Tics come and go, so a lot of people think since its not 24/7 that means I’m faking. Tics change over time, so I may be hiccuping one week, swearing the next, and week after that doing both, people seem to believe that since tics change they are voluntary. Tics can change based on how the conversation is going
me ticcing “I want to get my dick sucked”
friend: “You meant to say that?”
me: “no” then ticcing “I really want to get my dick sucked” the tic in a tone that asks why doesn’t he believe me already