The ‘invisible disability’ that is Tourette’s: one family’s story

Last week, nearly 9,000 Twitter users came down with temporary Tourette syndrome.

As part of a campaign called Surrender Your Say, people opted to relinquish control of their Twitter accounts for 24 hours to raise awareness about the disorder. Participants could tweet as normal, but occasionally a bot – based on the real tics of a person with the disorder – would tweet out unexpected messages such as "Feet, don't feet" or "Ah! Ah! Ah! Ummmmmm."

Melissa Muskat, a lawyer with Goodmans in Toronto, was one of the people impacted by the disorder who watched the campaign by ad agency Saatchi & Saatchi Toronto for the Tourette Syndrome Foundation of Canada. As the mother of a son with Tourette syndrome, she was pleased to see the innovative use of social media to inform people that the disorder is more complex than the popular notion of a disease that causes people to swear uncontrollably (a condition that actually affects less than one in 10 people with TS).

In total, Saatchi & Saatchi estimates that nearly four million people saw tweets related to the campaign – and it received kudos from celebrities such as Rick Mercer and Howie Mandel.

But Muskat also believes there's more work to be done. Educating people to understand the range of very visible tics that affect many people is important, but for her family, the hardest thing has been the way that Tourette syndrome is an "invisible disability."

"He suffers silently," she said of her son, Ben Kettner, a handsome and athletic 17-year-old. For Ben, tics such as repeated sniffing, or kicking his leg or clearing his throat impulsively, are just one part of what he deals with. He has learned in many ways to redirect those tics or shift them so they are less noticeable. But as with many people who have Tourette syndrome, for Ben it goes hand in hand with obsessive-compulsive disorder and attention deficit hyperactivity disorder, the combination of which has been very difficult for him, especially in social situations.

"If my son was tic-ing, and that was the only problem, kids would let it go," she said. "They'd just say, it's Ben and he has Tourette's. … But the common thing I hear is that [kids with OCD as well as Tourette's] become very annoying. They ask incessant questions. The OCD makes it hard for them to let things go … it's almost like an extreme type-A personality. And they go into social situations with a lot of anxiety."

Because Tourette's varies this way from person to person, and because the disorders that go hand-in-hand with it are so complex, educating people to understand what it looks like should also be an ongoing, and complex, process: It's not just about understanding that Tourette's is not "the swearing disease." There is also a need to recognize its subtlety.

People with Tourette syndrome have significantly higher rates of unemployment, for example, than the general public. Studies have shown a large impact on quality of life, especially because the disorder can make interpersonal relationships so difficult.

Ben, however, exhibits a quintessentially teenage defiance when it comes to his Tourette's. At the end of a 20-minute conversation, he points out with pride that he didn't exhibit a single tic or OCD-related episode.

"I've worked hard, and learned to cope. From an early age, in Grade 4 and 5, I've seen the interactions of other people and I've become immersed in studying that," he said. "I don't think Tourette's is extremely significant, or even important. It's obviously impacted my life, but it's not the most important thing."

He does admit, however, that thinking about going to university in a couple of years is daunting. Home is a "safe zone," he says – an important thing for people with the disorder, since anxiety can make the tics worse. A dorm may not be that type of safe zone. But he is excited about the independence to come.

While things are improving, watching her son trying – and many times failing – to fit in has been "heartbreaking," Muskat says. But as she watches Ben on the verge of adulthood, partly she yearns for more education so that her son, and kids like him, continue to prove that the disorder does not have to limit him.

"They can be whatever they want to be. They don't just have to be employable, they can be doctors, or professors, or lawyers," she said, then laughing and referring to Ben's argumentative nature. "He'd be an incredible litigator."