Nobody Can Define My Tourette’s

I was recently asked by a close friend of mine what Tourette’s Syndrome was. I had become more open about my condition in recent years. While he knew of my diagnosis, he was still confused by it. Was it a disease? A disability? A mental disorder? It seemed like such a simple question, and yet I couldn’t bring myself to give a straightforward definition for such a complicated phenomenon. “Well,” I tried to explain, “it’s this thing where you have a bunch of physical and vocal movements ーor, uh, I mean ticsー that you can’t control.” And that was it. That was how I defined my Tourette’s not just to him, but to myself as well. Short, simple, no complicated boring details. But there was so much more I felt I should have put into that definition. There is so much more to Tourette’s than I can fit into one friendly explanation. At the same time, however, I was confused as to why I even needed a complete definition in the first place. Was it necessary for me to define my condition in order for others to respect me or for me to live a normal life?

According to the National Institute of Neurological Disorders and Stroke, Tourette’s Syndrome “is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.”1 So I suppose that that’s another definition. Yet even here, I can’t feel satisfied with its description. It doesn’t include the pain, the emotion, the life lived behind my condition, and so I can’t bring myself to accept this as the complete definition for Tourette’s. It informs, but doesn't emote. I’ve always sought a bigger, better definition that painted a picture of how much I’ve gone through my entire life (“Tourette Syndrome Fact Sheet.”).

I could go on and on about how to define Tourette’s, but perhaps it’s best if I illustrate why defining Tourette’s is a terribly convoluted and difficult feat in the first place. In fact, I started my journey of “definition-seeking” at only six years old. At this age, I gradually began noticing something... weird. In class, I would yank my neck back repeatedly until it made a “cracking” noise. I was left in pain each time I did it, but for some reason I couldn’t stop. No one pointed it out to me, or at least, not until my dad started noticing it. Repeatedly that year he’d pull me into another room with a look of concern a parent typically has when caring for their child, and every time he’d tell me the same thing: “Alec, if you keep cracking your neck back like that, you’re gonna grow up to have bad neck pain.” He had medical issues with his neck and back and was worried for my physical well-being. Despite being young, I understood this concern, but I still couldn’t communicate why I cracked my neck like I did. I honestly tried to stop doing it. I really did. But the urge to yank my neck back wouldn’t go away.

That was first grade for me. Okay, just a small neck-cracking problem. No big deal. Nothing for a doctor to check on. But then, second grade came. Something new happened that I still didn’t know how to explain. It was quiet reading time for our class, and I had my book out in front of me, trying my best to read silently. As I read the words on the page, I realized I was saying them out loud. Well, not exactly. I was overemphasizing the various consonant and vowel sounds in the words I read under my breath to satisfy an urge of some sort. In that silent room, it provided a perfectly annoying distraction for everyone around me to notice.

“Will you stop doing that?” a girl next to me whispered, glaring at me. I felt vulnerable and exposed as her piercing eyes demanded I stop making these intentional sounds immediately. I didn’t respond, not because I didn’t want to, but because I couldn’t explain to her why I was making these strange noises.

So, what did I know at this point? I had some odd urges to move in a certain way or make a certain sound, and I felt obligated to satisfy these urges repeatedly. Perhaps, then, I could modify my definition of Tourette’s:

Tourette’s Syndrome (Noun): something where you keep wanting to move or say things for no reason.

Neurological disorder? Stereotyped? Vocalizations? In second grade, I didn’t even know what these words from the professional definition meant, let alone that there was a name for my condition. All I knew is I had these urges that I couldn’t get to go away. Over the next few years, I began developing even stranger urges: blinking my eyes, scrunching my nose, bending my pinkies, rolling my neck, flexing my ankles, clapping, humming, bending my wrists, making kissing sounds, and more. Of course, people noticed. My classmates became angry with me for humming during tests. I received strange looks from people when I made an “angry face” at them while scrunching my nose. Every tic resulted in another’s confusion and frustration. But once again, I couldn’t explain any of it, and so I pushed it to the back of my mind. I was a human being who had unexplainable urges to perform various physical and vocal actions, and these did not define me as a person. But maybe I can try redefining Tourette’s itself?

Tourette’s Syndrome (Noun): a mysterious condition involving multiple unexplainable urges to act physically or vocally.

Or, something that pisses off anyone who is near me. I was fourteen and had still never understood what these urges were or where they were coming from. Actually, I had never even heard of the term “Tourette’s” until my family sat in the living room casually watching the comedian Drew Lynch on the tenth season of America’s Got Talent. In his quarter-final round, the comedian mentioned how funny it would be if he had a pet with Tourette’s. I was confused and asked my dad what Tourette’s was. “Well,” he told me, “it’s similar to having muscle spasms or randomly shouting things at different times.” My mom chimed in at that moment and said, “Also, people with Tourette’s swear a lot.” “Wait,” I asked innocently, “so is it a disability?”

“Well, yeah,” my dad answered, “they can’t control it.”

Muscle spasms, shouting, swearing, disability... these were the words my parents used to define Tourette’s. These were the words society had taught them to use to define Tourette’s. And so, I couldn’t possibly have had Tourette’s Syndrome. Sure, I might have had various urges to move or make noises, but I never swore or had severe muscle spasms. I was just a strange,occasionally “twitchy” teen. I mean, only about 1% of Americans have Tourette’s anyway, right? (“Tourette Syndrome Fact Sheet”). It was unlikely that I was part of that 1%. But this also brought up a good point: my parents helped me further define this strange phenomenon and even gave it a name for me:

Tourette’s Syndrome (Noun): a disability that bizarre people have involving excessive swearing and muscle spasms.

Or, something really, really weird that only weird people have.

Simple. The definition was complete. I needed no other explanation.

Ow! Goddamnit! I was sitting in my room when that all changed. In November 2017, I had been doing my homework at my desk, desperately trying to concentrate on my calculus worksheet. Unconsciously, however, I was repeatedly bending my pinky finger ever so slightly. It was hard for me to focus on my work, but I tried my best to ignore it. Then I bent it harder, and harder, and harder, until I finally heard something snap. I screamed for a moment, thinking I had just broken my finger, but I ended up more angry than scared since I couldn’t stop myself from almost breaking a bone. In fury, I threw my homework off the desk, whipped open my laptop and searched “bending pinky backwards constantly OCD” on Google. I had been diagnosed with OCD two years prior and wondered for a moment if it might have something to do with that. However, when I read through the first link Google gave me, I was shocked. The website gave a long list of symptoms that I could relate to perfectly: the blinking eyes, the pulsating humming, the neck rolling, the arm flexes, the blinking and face twitching and leg stretching and pinky bending and clapping and yelping... everything. I had never seen anything so accurately list out what I was going through. However, the top of the page said these weren’t symptoms of OCD, but of Tourette’s Syndrome. Tourette’s? I thought. I chuckled for a moment at this ridiculous possibility. This isn’t Tourette’s. I can’t possibly have that.

And yet, my mind wouldn’t stay still; I had to investigate more. Out of curiosity, I searched “Tourette’s Syndrome” on Youtube and found a link to a 12-minute interview with kids who had Tourette’s. After 5 minutes, I had to shut off my computer because I was having a panic attack. I sat back in my chair and stared at a blank wall as my face went completely pale with disbelief. I couldn’t believe it. I had never, ever seen something that perfectly described what I had been struggling with my whole life.

I might have Tourette’s... I thought. Oh my God... I might have Tourette’s. It was, in my mind, the final resolution to my ongoing life mystery. These definitions I had been formulating over the years, the ways in which I and my parents defined it, all the descriptions and stereotypes I had seen, they now pointed toward me. I wasn’t trying to define Tourette’s; I was trying to define myself.

Muscle spasms, shouting, swearing, disability... disability...

Tourette’s Syndrome (Noun): a disorder in which a person suffers for years on end with multiple, uncontrollable urges to snap and hit tables and roll eyes and repeat syllables and shake heads and wave arms and flex legs and scrunch noses and hum and yelp and put on a one-man theatrical show of movements and noises for everyone to see.

Or, a complete and utter disability.

Or, something... something to be ashamed of?

The more I tried to define Tourette’s, the worse I felt. These urges never stopped me from living my life, right? I wasn’t a disabled person. I was someone who just had random urges to do things I didn’t want to do. Or was I really... broken? Was I a disgusting creature that everyone defined as an annoying outcast? Maybe I was. All these definitions defined me. They had to. There was no better way to describe me than as disabled. I was disabled.

Though I could tell I was falling into some sort of depressive state, I denied to my psychiatrist that I should get any medications for it, let alone any therapeutic treatment. “It’s really minor,” I told her, “so I can control it in public.” And in reality, I was partly right. I improved my mental health by finding better definitions for what Tourette’s really was. I countered all the stereotypical and false definitions I had heard before by doing my research.

Only 10% of people who have Tourette’s Syndrome actually swear, a condition known as coprolalia (Wolchover). These urges I had been feeling for years were called “tics,” and they varied in intensity and style (“Tourette Syndrome Fact Sheet”). And most of all, I didn’t have to be ashamed of it. All the definitions I had heard and made before were never entirely accurate. People who had Tourette’s weren’t improper or disobedient; they were simply human beings who happened to have this condition. Surely, I had finalized my journey of definition seeking. And so, I felt no need to satisfy myself further with professional treatment like medications or therapy.

“I’ll be fine,” I kept on telling her. “It’s minor, really.”

In April 2018, however, I knew I’d made a mistake not seeking treatment sooner. I hadn’t eaten for an entire day. I felt hungry, yes, but everything I ate, I threw up. I had developed a new tic overnight which caused me to clench my stomach repeatedly, leading to vomiting. I skipped school and lay in my room with a bucket near me because I couldn’t stop throwing up. The tic wouldn’t go away. I was in so much pain. And in this dark moment, as dramatic as it sounds, I thought my life was completely over. What if I would never be able to leave my house? What will my friends think of me, bedridden and shut out from the world? I would be pitied or ignored, perhaps even despised. It was deserved, I thought. It only made sense that I should be the “disabled kid.” I was annoying. I was broken. I was disabled. I am disabled. I am nothing. I am nothing. I am...

This was a problem that needed treatment, not just physically, but emotionally. I couldn’t keep living my life controlled by my tics. I couldn’t let myself be confined within a cage of definitions and expectations. And with that, I finally started taking my disability seriously.

Tourette’s Syndrome (Noun): a neurological disorder which should be taken seriously and treated professionally. Now.

I began medication, however it didn’t do much to suppress my tics. Instead, my therapist and I practiced ways of calming down my physical and vocal tics through breathing exercises and consciously monitoring my motions. And more importantly, we worked on getting my definition of Tourette’s straight. My definitions kept evolving with each new piece of information, each new discovery, each new stereotype thrown at me, each new self-realization. To get better at managing my tics, I had to tell myself that I am not defined by Tourette’s, and I shouldn’t focus on seeking new definitions of Tourette’s to figure out who I am.

It’s still very difficult to avoid these labels when I hear people talk about my Tourette’s, claiming they’ve never seen me tic or that I can’t have Tourette’s if I don’t swear. With each new way people try to define me and my Tourette’s Syndrome, I feel trapped as I once was, falling under labels like “disobedient” and “annoying” and “weird.” I slip back into my spiral of shame. It darkens my mental health and lowers my self-esteem. Then, I remember to break free from all these terms, and I remind myself that nobody can define my Tourette’s, and nobody can define me as a person. The more stereotypes, misrepresentation, and lack of knowledge of Tourette’s society has, the more we perpetuate the idea that we should all be confined to the labels we are assigned to. But it wasn’t until I stopped desperately trying to redefine Tourette’s that I learned to stop being defined by Tourette’s itself.

I am not Tourette’s. I am a human being with Tourette’s Syndrome, and nobody can tell me otherwise. Nobody can define my Tourette’s.

Tourette’s Syndrome: Perhaps it should just be left at its clinical definition.

Works Cited

“Tourette Syndrome Fact Sheet.” National Institute of Neurological Disorders and Stroke, U.S. Department of Health and Human Services, 6 July 2018, 15:52, www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Tourette-Syndro me-Fact-Sheet.

Wolchover, Natalie. “Why Does Tourette's Make People Curse Uncontrollably?” LiveScience, Purch, 8 July 2011, 15:13, www.livescience.com/33384-tourette-syndrome-people-curse-uncontrollably.html.

About the Author

Alec Korotney (he/him)

Michigan Engineering Graduate

Image description: Alec is a 23-year-old white man with short brown hair. He is smiling at the camera.