I Have Involuntary Tics. This Is What It’s Like When You Can’t Control Your Body.

"I was 20 when I began to experience the rapid blinking, head tilting and flinching."
"I wear my green sunflower lanyard to represent my invisible disability."
"I wear my green sunflower lanyard to represent my invisible disability."
Photo Courtesy Of Lara Boyle

It started small. I was 20 when I began to experience the rapid blinking, head tilting and flinching, as if someone had just jumped around the corner to scare me.

Soon I couldn’t go five minutes without the paradoxical impulse to move while simultaneously praying to be still. Car rides meant constant flapping, banging my fist to my chest, involuntary shoulder shrugging, face grimacing. Meals were a separate battle altogether: The crunch of teeth chewing made me cringe, along with forks and knives against plates, my English bulldog snorting under the table, my Labrador retriever’s bark, their high-pitched squeaky toys, the dishes being loaded into the sink. I started to eat alone at home to avoid possibly offending friends or family members.

My senses felt elevated, like the noise of the world had been turned up to full volume and only I could hear it. Once, in a restaurant, a piece of silverware fell to the floor in the back of the kitchen in the crowded room. I jumped out of my seat at the clang, surprised no one else even noticed it, and received concerned glances in return.

Little sounds that used to be inaudible to my ears now became unbearably painful ― the crinkle of paper as you unwrap a straw, the soft buzz of fluorescent light, the drum of a finger on the tablecloth, the jingle of keys. It all hit me at once.

My therapist had diagnosed me with mild obsessive-compulsive disorder (along with my other neurological diagnoses of attention-deficit/hyperactivity disorder, dyscalculia and Asperger’s syndrome) more than once in our sessions, yet I always tried to find another explanation for my behavior.

Until I woke up from my MRI in the hospital.

“Patient suffers from severe tics,” A nurse’s voice said.

I required sedation to be still throughout the procedure, otherwise the rhythmic high-pitched beeping would have been torturous. Despite barely being conscious, I mumbled “not tics.”

I had resisted the idea for months, ever since a close family friend who specializes in autism suggested it over the phone during my original episode. We had been calling them “myoclonic seizures” instead, based on research and one neurologist’s estimate. It seemed easier to believe a diagnosis like epilepsy caused my distress than a mental health issue.

According to the U.K.’s National Health Service, “Tics are fast, repetitive muscle movements that result in sudden and difficult to control body jolts or sounds.” There is no singular cause for tics. They are most commonly associated with Tourette syndrome. However, OCD, ADHD and autism spectrum disorder are also known to cause them. They tend to be exacerbated by stress and a lack of sleep. My neurodiversity increased my chances of experiencing them, though I didn’t have tics as a child or teenager.

Before the severe motor tics, I had experienced sensitivities to sound and mild symptoms of OCD and general anxiety disorder, but never in public.

Yes, I needed to type the word “words” a thousand times or else my story wouldn’t be good. Yes, I compulsively tapped my finger in the car or else I feared it would crash. Yes, I obsessively reimagined basic interactions to analyze every detail and figure out how I could have messed up. Yes, I spent hours with my face pushed up to my bathroom mirror, picking my skin until it bled into scars. But my struggles with mental health remained private, and I was proud of that.

Until one day, they weren’t.

Now, at 21, I wear Bose noise-canceling headphones to cope with the sensory overload that triggers my tics. Even if I didn’t, it would be difficult to hide since I have no control over my own movements.

Tic attacks are like having an out-of-body experience, and the more frustrated you become, the worse they get. Your body rebels against itself, hijacked by a chaotic force determined to overpower you. In the middle of a tic attack, I am scared and frustrated at my sudden lack of bodily autonomy. It’s like whole-body hiccups.

When I returned to school recently to take my final exams after weeks of remote coursework, it was with new accommodations. I wore heavy, black headphones and tinted sunglasses. I also sometimes use fidget toys for tactile stimulation to help me calm down. I wear my green sunflower lanyard to represent my invisible disability.

In order for me to be my version of OK, I required tools that made me look visibly different, visibly othered, visibly disabled. During lectures, I dread the subtle drift of eyes in my direction at the sudden twist of a bottle cap, the tap of a pen against the table, the professor’s decision to pop a bag of Cheetos and crunch on the snacks in between the lesson.

I am often treated as if I lack intelligence by strangers who witness my tics. I once had tics during a doctor’s appointment, and the young nurse spoke to me the way she would talk to a small child about to get a shot, enunciating syllables slowly and asking my mother questions I could have answered.

At home, my family walks on eggshells to avoid any noise that could trigger my tics. The TV is lowered and dishes are put away with great caution. I often feel like a burden to others because of my disabilities. I hate how they have to change their lives to make mine easier.

But slowly I’ve made adjustments to my new symptoms. I’ve become more comfortable talking to friends about my tics after they inevitably witness them. I learned to keep the fluorescent lights off in my dorm and bought a dim lamp that didn’t irritate my central nervous system. I avoid crowded facilities, decline invitations to events I know might cause an outburst. I receive extensions on homework assignments in order to reduce stress, even though I hesitate to use these resources, afraid the professors might think it’s a cop-out.

I still sometimes apologize for my OCD, but I try not to.

Before the tics, I used to be able to hide my differences to make other people feel more comfortable. I taught myself how to look someone in the eyes and to speak at appropriate pauses in conversation. I mimicked neurotypical behavior to fit in with my peers at school and avoid repercussions (which still didn’t prevent relentless bullying from kindergarten through the 12th grade). I ignored my immense discomfort due to sensory overload. I disguised my self-stimulatory behavior the best I could. I performed my life to meet impossible standards.

For 19 years, this masking led to the belief that there was something deeply, unchangeably wrong with me.

Tics took away my invisible safety net. As a result, I’ve had to unlearn what I’ve been taught about disability and mental health. Normal isn’t the goal.

By being open about my mental health issues, I’m able to alleviate the internal shame I’ve carried because of them. I can acknowledge and heal the wounds I’ve ignored for so long.

Unmasking has allowed me to be free from the expectations I thought I had to meet to be happy and successful. I may not be able to control the disorders I have or my symptoms, but I do have the ability to rewrite the narrative I have been told about them, and each time I advocate for my needs instead of apologizing for them, I learn to begin accepting myself just the way I am.

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