It started small. I was 20 when I started feeling rapid blinks, head tilts, and twitches, like someone had just jumped around the corner to scare me.
Soon I couldn’t last five minutes without the paradoxical impulse to move while simultaneously praying to be still. Car rides meant constant thumping, thumping against my chest, involuntary shrugs, grimacing faces. Mealtimes were a separate battle: the cracking of teeth made me cringe, as well as the forks and knives against the plates, my English bulldog sniffling under the table, the barking of my Labrador retriever, their squeaky toys acute, the dishes being charged in the flow. I started eating alone at home to avoid offending friends or family members.
My senses felt heightened, as if 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 on the floor at the back of the kitchen in the crowded room. I jumped out of my seat at the noise, surprised no one else had even noticed, and received worried looks in return.
Little sounds that were previously inaudible to my ears have become unbearably painful ― the rustle of paper as you unwrap a straw, the soft hum of fluorescent light, the drum of a finger on the tablecloth, the clink 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 during our sessions, but I was always trying to find another explanation for my behavior.
Until I woke up from my MRI in the hospital.
“The patient has severe tics,” said a nurse’s voice.
I needed a sedative to stay still throughout the procedure, otherwise the rhythmic high pitched beep would have been torture. Although I was barely conscious, I mumbled “no 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 initial episode. We called them “myoclonic seizures” instead, based on research and a neurologist’s assessment. It seemed easier to believe that a diagnosis like epilepsy had caused my distress than a mental health issue.
According to the UK’s National Health Service, “tics are rapid, repetitive muscle movements that result in sudden, hard-to-control twitches or body sounds.” There is no single cause for tics. They are most often associated with Tourette’s syndrome. However, OCD, ADHD, and Autism Spectrum Disorders are also known to cause it. They tend to be exacerbated by stress and lack of sleep. My neurodiversity increased my chances of experiencing it, even though I didn’t have tics as a child or teenager.
Prior to the severe motor tics, I had experienced sound sensitivities 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 my story wouldn’t be good. Yes, I compulsively tapped the car, otherwise I was afraid it would crash. Yes, I obsessively reinvented the basic interactions to analyze every detail and figure out how I could have gone wrong. Yes, I spent hours with my face pushed against my bathroom mirror, picking at my skin until it bled in scars. But my struggles with mental health remained private, and I was proud of it.
Until the day they weren’t.
Now, at 21, I wear Bose noise canceling headphones to deal with the sensory overload that triggers my tics. Even if I didn’t, it would be hard to hide because 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 subdue you. In the midst of a tic crisis, I am frightened and frustrated by my sudden lack of bodily autonomy. It’s like the hiccups of the whole body.
When I returned to school recently to take my final exams after weeks of distance learning, 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 sunflower green choker to represent my invisible disability.
For me to be my version of OK, I needed tools that made me look visibly different, visibly different, visibly disabled. During class, I dread the subtle drift of eyes in my direction at the sudden twist of a bottle cap, the tapping of a pen against the table, the teacher’s decision to pop a bag of Cheetos and crunch the snacks between classes.
I am often treated as if I lacked intelligence by strangers witnessing my tics. I once had tics during a doctor’s appointment and the young nurse talked to me like she would talk to a small child about to be vaccinated, slowly saying syllables and posing at my mother of the questions I could have answered.
At home, my family walks on eggshells to avoid any noise that might trigger my tics. The TV is turned down and the dishes are put away very carefully. I often feel like a burden to others because of my disability. I hate how they have to change their lives to make mine easier.
But slowly I made adjustments to my new symptoms. I became more comfortable telling my friends about my tics after they inevitably witnessed them. I learned how to turn off the fluorescent lights in my dorm and bought a dim lamp that didn’t irritate my central nervous system. I avoid overcrowded facilities, I refuse invitations to events that I know could cause an explosion. I get homework extensions to reduce stress, though I’m hesitant to use these resources for fear teachers think it’s a cop-out.
I still sometimes apologize for my OCD, but I try not to.
Before tics, I could hide my differences to make others feel more comfortable. I taught myself to look someone in the eye and speak at appropriate pauses in conversation. I imitated neurotypical behavior to fit in with my peers at school and avoid repercussions (which still hasn’t stopped the relentless bullying from K-12). I ignored my immense discomfort from sensory overload. I disguised my self-stimulating behavior as best I could. I have run my life to meet impossible standards.
For 19 years, this masking led to the belief that there was something deeply, immutably wrong with me.
The tics took away my invisible safety net. As a result, I had to unlearn what I had been taught about disability and mental health. Normalcy is not the goal.
By being open about my mental health issues, I am able to lessen the inner shame I have felt because of them. I can recognize and heal the wounds that I have ignored for so long.
Unmasking freed me from the expectations I thought I had to meet to be happy and successful. I may not be able to control the disorder I have or my symptoms, but I have the ability to rewrite the narrative that was given to me, and each time I advocate for my needs instead to apologize, I’m learning to start accepting myself as I am.
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