A teenager living with Tourette’s syndrome has shared what her tics can be like, including the most upsetting thing she has ever blurted out.
Tourette’s syndrome is a neurological condition that usually begins in childhood, with signs most often appearing between the ages of five and 10, according to the Centers for Disease Control and Prevention (CDC). It affects the nervous system and can cause sudden, repeated movements or sounds known as tics.
There isn’t a cure, but treatment and support can help people manage symptoms. Tics can look different from person to person and can change over time. Some are physical, such as twitching, shoulder shrugging, or a quick arm jerk, while others are vocal and may involve involuntarily saying words or phrases.
Public discussion about Tourette’s has intensified after John Davidson’s tics were broadcast during BAFTAs coverage on February 22. Many viewers reacted with shock when a racial slur was heard while Michael B. Jordan and Delroy Lindo were on stage.
In an interview about her day-to-day experience, 19-year-old Grace Cope spoke about common misconceptions, what living with tics can involve, and the impact Tourette’s can have on routines and relationships.
One of the questions she says she gets asked most often is about the worst thing she has ever said while ticcing. “The worst thing that I have said is the N-word,” she said. “And I hate it, I hate that I’ve said it the first time that it came out of my mouth. I sobbed uncontrollably for ages and it’s, it still really upsets me now.”
She continued: “Anyone who’s heard that word is allowed to feel offended. They are allowed to feel uncomfortable. We’re not saying that you are not allowed to feel the way you do about it because you are entitled to feel any way you do about it.
“But you just need to understand that it was not meant in a malicious way. It was not said to hurt anyone.
“And for people with Tourette’s, anything can become a tic. Any word, phrase, movement, whatever. You could do the splits. And this has brought up a lot of hate for John.”
Addressing the backlash and racist abuse that followed the BAFTAs moment, Grace added: “Our tics are involuntary. Your abuse isn’t.”
She also said she had seen posts and messages from some viewers suggesting people with Tourette’s should have “muzzles,” “shouldn’t be leaving the house,” and “should be put down.”
“It’s disgusting,” she said. “It makes me so angry.”
She continued: “The things I tic are involuntary. The comments that you leave and may well lave are voluntary. You can choose whether to post that or not.