Philip Charlebois first noticed mild tics when he was 17, but the 24-year-old from London, Ont., was only diagnosed with Tourette syndrome last year.
That’s when things started getting worse.
“A couple of months after the pandemic started locking things down, I noticed my Tourette’s, which had been fairly mild up until then, had gotten much more disruptive,” said Charlebois, a product technician.
People with Tourette, a nervous system condition, may experience spasm-like movements of particular muscles that are known as tics or twitches. According to Tourette Canada, studies indicate Tourette affects between one and nearly four per cent of the population.
Charlebois says his tics are affected by stress.
“My arms and legs twitch. I can’t always control the movements. And then the vocal tics, most of the time it’s the chirping and whistling.”
Charlebois said he also struggles with uncontrollable profanities and is working with four different doctors, including a neurologist and a psychiatrist, and experimenting with different drugs and treatments.
Multiple surveys and studies have investigated how the pandemic has affected people with Tourette syndrome. The Tourette Association of America surveyed individuals and families, and 82 per cent of 900 respondents said their tics had worsened over the last year.
“I describe it almost like a sneeze,” said Charlebois, who has two roommates after leaving the family home in Penetanguishene, Ont., nearly four years ago. “You can kind of feel it coming on sometimes, and sometimes you can work very hard and suppress it.”
His roommates have been lifesavers, he said.
“Tourette’s can get very loud and and they’ve just been fantastic dealing with it.
“Sometimes when my arms start acting up, I need to ask one of them to cut my food for me so that I don’t have to handle a steak knife.”
Keeping a positive attitude
Charlebois figures he’ll continue working from home even when his workplace opens back up to employees. His tics would be too disruptive, he said.
“It’s no longer an invisible disability,” said Charlebois, who wears a special sweatshirt when he goes to the grocery that reads, “I’m not possessed. I have Tourette Syndrome.”
“It’s something that when people see me in public, they also see the tics. But honestly, I’m so fortunate to live in this era because people are much more accepting.”
Charlebois is hopeful his tics will improve once the pandemic is over.
“So it might get better. It might not. We’re not sure, but it is very heavily correlated to stress.
“And I think the most important thing with Tourette’s is just the positive attitude. Sometimes you almost just have to laugh.”