I was nineteen the first time something felt wrong. Not wrong like medical emergency wrong—more like a weird glitch in the system, something I couldn’t put my finger on. I’d be alone in my room and suddenly blurt out a word, usually something crude, like my brain had fired a spark I didn’t authorize. It wasn’t loud back then. It felt like something I could hide from the world, something that would go away if I ignored it.
It didn’t.
By twenty-one, I was living with my parents while the tics started getting louder and showing up at the worst times. My mother didn’t believe it could be Tourette syndrome—not really. She Googled it, sure, but there’s a difference between reading a paragraph online and watching your adult kid yell “cunt” at the dinner table. She would scream at me sometimes, not because she hated me, but because she hated the word and what it represented. Watching her cry over a word my brain forced out of my mouth was one of the most surreal moments of my life. She was doing her best, but Tourette’s doesn’t give parents—especially of adults—a manual on how to emotionally cope.
I was diagnosed at twenty-three, officially, last August. I can’t tell you why it started so late. Doctors can’t either. It wasn’t like a switch flipped. It was more like a leak. First some drips only I could hear, then a trickle my family noticed, and eventually a full flood that spilled into my job, my commute, my friendships, and my daily routines. Now I’m here, four years into this thing, still trying to make sense of it.
What My Tics Are Actually Like
People think tics are just blinking or head jerks. Mine include all of that—head jerking, weird facial expressions, gasping, hiccuping—but also the “fun ones” society likes to joke about: coprolalia (saying obscene things), coprographia (typing obscene things), and coproxia (inappropriate gestures). In my case, the coproxia is just flipping people off, but for other people it can be far worse, far more life-ruining.
My vocal tics range from quick one-word outbursts to what I can only call profanity-poetry. For a while my go-to phrase was:
“Fuck my cunt till it fucking bleeds, you bitch-ass motherfucking pussy-fucking suck-my-dick motherfucker.”
I don’t think I could write a sentence like that if you gave me three hours and a thesaurus. But my Tourette’s? Oh, it’s Shakespearean. It even invented “cunt-headed whore,” which I guess I’m slightly proud of in a dark, weird way.
People always ask if it’s involuntary. The real answer is disvoluntary. It’s not completely outside my control, but stopping it feels like holding in a sneeze while your entire body fills with static. The pressure builds and builds, and eventually it explodes out of me whether I want it to or not. I can suppress it for maybe ten minutes if I absolutely have to—some people can go hours—but suppression hurts. Physically, mentally. Imagine needing to breathe but someone telling you to wait “just a bit longer.”
What It’s Like in Public
When I’m with friends, strangers don’t react as badly. People pick up on social cues—“Oh, his friends aren’t flinching, something must be going on.” But when I’m alone? Teenagers laugh at me, adults stare, people move seats on the bus like I’m contagious. I once yelled “cunt” near a guy on public transport and he called me a bitch. Another time someone actually shoved me and told me to stop.
That shove was the day I stopped taking the bus, unless absolutely necessary. I walked an hour to the bank once just to avoid the circus of human reactions.
I never know whether to warn people or just… let it happen. Sometimes I introduce myself with “Hey, I have Tourette’s,” and sometimes my friends do the explaining for me. But in a constantly changing environment like a bus, you can’t explain it to every single person who walks in. You’d be doing nothing but explaining.
Work, Survival, and Medication
TS definitely limits my job opportunities. I want to become an electrician. I’m starting a helper position soon and I’m praying my boss doesn’t fire me when he finds out, because it’s happened before. Employers worry about liability, about customers, about discomfort. They care less about understanding and more about profit loss.
As for medications—yes, there are options. The severe cases usually need antipsychotics, which help by flattening your emotions. And when your emotions flatten, your tics decrease. But the side effects? ED, exhaustion, depression. I’m 23 and I don’t want to chemically erase half my personality just to be tolerable in public.
I’m on a path to get medical marijuana, which my neurologist says won’t get me high, just reduce the tics. But since I work with power tools, I have zero room for “oops I’m stoned.” One wrong move and I lose a finger.
Living Inside a Body That Feels Like a Disruption
Stress makes everything worse, but Tourette’s is stressful, so it’s a nice little feedback loop from hell. I often feel like my very existence disturbs other people. It’s not my fault, but it’s still my problem to manage.
There are moments that anchor me—video games, loud concerts where no one hears my tics, nights with friends where I can be myself without worrying about the next outburst. But the reality is that I’m constantly managing other people’s discomfort while trying not to drown in my own.
I don’t sleep with medication. The tics fade when I’m tired, but now and then, right as I’m drifting off, my body will force out a scream and jolt me awake. Those nights are the worst.
Representation, Culture, and Misunderstandings
Media barely touches the real complexity of Tourette’s. Strangely, South Park did a better job than half the “serious” portrayals. It was the first thing that made me think, “Oh, this might be what I have.”
Most people in Israel—where I live—haven’t heard of Tourette’s at all. They understand the concept of a tic, but not that tics evolve over time, or show up inconsistently, or shift based on conversations. They think inconsistency equals faking.
If only.
I once ticced “I want to get my dick sucked,” and my friend asked if I meant it. Then I ticced again:
“I really want to get my dick sucked,”
but in the tone of someone offended he didn’t believe me the first time. This disorder has comedic timing, but no comedic mercy.
What I Wish People Knew
I wish people knew what Tourette’s is. That coprolalia affects only around 10% of us. That we’re not trying to be rude. That we’re not trying to shock you. That we’re not choosing our words. That suppressing a tic hurts. That it feels like drowning in pressure. That it’s unpredictable, inconsistent, and constantly changing.
I wish people understood that I’m trying. That living with this disorder isn’t as funny as the memes make it out to be. That the world is not built for people whose bodies make noise they didn’t sign off on.
But mostly I wish people understood that beneath all the tics, all the swears, all the strange looks—I’m just a person trying to function, trying to work, trying to sleep, trying to live.
And I’m doing the best I can.