Sarah Biren
Sarah Biren
July 6, 2024 ·  4 min read

Man Tells Story Of What It’s Like Living With Tourette Syndrome

K.E. Semmel grew up in a small town in the 1980s, where most people had never heard of Tourette syndrome. So he had no idea his struggle had a name. His tics included head jerks, snorts, grunts, throat clearing, and other small movements and noises. He spent his childhood trying to mask them, and this secrecy and shame carried into his adulthood. But when his tics worsened on a stressful day, he accidentally rear-ended a car. That’s when he visited a neurologist and received the diagnosis of Tourette, to his shock and relief. 

What is Tourette syndrome?

Diagnosis of Tourette syndrome. On psychiatrist or psychologist table is paper with inscription Tourette syndrome (disease) near psychiatric report, hourglass and stethoscope
Source: Shutterstock

Tourette syndrome is a neurological disorder that can cause motor and/or vocal tics. As an adolescent, Semmel’s only exposure to the condition came from an episode on TV. “It featured a young man who shouted obscenities in some large American city,” wrote Semmel on HuffPost. “By that time I’d been ticcing for years — in fact, I’d already been hiding my tics for years. But I didn’t recognize myself in this program, because never, not once, did I swear or shout in public.”

Despite what people might assume, there are different types of tics. There are “simple” tics that involve a brief movement or noise such as throat clearing, snorting, blinking, or shrugging. Then there are “complex” tics that involve a combination of simple tics. Coprolalia, the type of complex tic that involves saying socially inappropriate words, is rare. 

Read More: Teenager’s Near-Death Experience with Stevens Johnson Syndrome from Lamictal Prescription

Growing up with Tourette syndrome

Semmel is pictured in elementary school, around the age he was singled out by a teacher for his tics
Credit: K.E. Semmel

Semmel experienced much embarrassment and shame because of his tics. Once, a teacher reproached him for making noise and “doing that thing you’re doing with your head.” She even demonstrated his actions in front of the class. “Every head turned my way, and I put mine down, humiliated. I could not tell her that I couldn’t help myself.”

This moment drew his attention to his tics, and made them realize he wasn’t “normal”. But more than that, it made it determined to hide them. He describes ticcing as “ a near-constant urge to do things with my body. ‘Urge’ may not be the right word for these head jerks, blinks, snorts, grunts, throat clearings, tongue clicks, etc., but it’s the best I’ve got.” He explains that his body  “seems to have a will of its own.” But during times of intense stress he feels like “my tics are like a parasitic fungus that assumes total control over my body.”

Hiding tics

Semmel reads stories to kids at a bookstore in 2016.
Credit: K.E. Semmel

According to the National Institute of Neurological Disorders and Stroke, some people can suppress their tics but this often leads to an intense build-up until they involuntarily express the tic. Tics may worsen with excitement or anxiety, as in the case of Semmel.

Although he couldn’t stop his tics, he worked to make them less noticeable so he could better blend in with his peers. “I developed an arsenal of tic-hiding strategies,” he wrote. “Instead of jerking my head, I would put my hand underneath the table and waggle my fingers or ball my fists repeatedly. Instead of snorting or chuffing — obvious and strange sounds — I’d click my tongue softly, like an irregular metronome.”

Read More: I Almost Died From Toxic Shock Syndrome and It Had Nothing to Do With a Tampon

Managing Tourette syndrome

Semmel gives a talk at a college on the importance of persistence in 2018.
Credit: K.E. Semmel

As of now, there is no cure for Tourette syndrome. In mild cases that don’t interfere with daily life, no treatment is typically required. Otherwise, treatment can include medication to help reduce tics, behavioral therapy, and psychotherapy. Currently, researchers are investigating a type of behavioral therapy called Cognitive Behavioral Intervention for Tics that involves using voluntary movements to appease the urge to tic, similar to how Semmel learned to cope.

Semmel added that he believes he wasn’t bullied in school because of his technique, which he still uses. “When I’m out in public today, I’m keenly aware of my internal pressure to tic, but I’ve become adept at suppressing it, bottling it up and capping it tight. At home, where I’m free to be myself, it’s a very different story. My tics come and go.”

People like me, we’re all around you”

instagram picture of couple
Credit: Instagram

Today, Semmel is married with a child, works as a writer and translator, and lives a “normal” life. He is set to publish his debut novel, “The Book of Losman,” which was inspired by his experiences as a translator and having Tourette’s syndrome. But even after writing openly about his condition, he admits, “I will continue to hide my tics in public. Why? The stigma is a great burden.

Although there is much more awareness around Tourette syndrome compared to when Semmel was growing up, the stigma is still pervasive and it greatly contributes to emotional and social difficulties.

“I truly admire those in the younger generation, who can go on TikTok or YouTube and put themselves out there for the world to see.” Still, in writing about his experiences, Semmel hopes to normalize tic disorders. “People like me, we’re all around you,” he concluded. “All that we ask for is what every human being deserves: to live a judgment-free life.”

Read More: How Jono Lancaster Embraced Treacher Collins Syndrome and Is Inspiring Others

Sources

  1. “I Always Knew I Was Different. Still, I Was Shocked To Hear My Doctor Say These 4 Words To Me.” HuffPost. K.E. Semmel. April 29, 2024
  2. Tourette Syndrome.NIH. November 28, 2023
  3. “Tic Disorders and Tourette Syndrome in Children and Adolescents.Merck Manual. M. Cristina Victorio, MD. March 2023
  4. Tourette Syndrome.Kids Health. Shirin Hasan, MD. “ June 2020
  5. Tourette Syndrome.Cincinnati Children’s. Donald L. Gilbert, MD, MS. October 2023