What exactly is Tourette’s? And what are tics?! WHY do we know so little about it? This Tourette’s Awareness Month, Capsule journalist Vivien Beduya spoke to 21-year-old Charlotte Shores who lives with Tourette’s Syndrome (TS) and generously shares her story with us. Her TS was once so disabling, to a point her tics would physically hurt her. Watch the interview on Youtube now.
Charlotte Shores was diagnosed with Tourette Syndrome at 16 and would have six-hour tic attacks where she’d punch herself – leaving bruises all around her body.
“When Tourette’s really kicked in, my life stopped… I couldn’t live life like that, like when you are punching yourself for hours and hours every single day,” says the now 21-year-old.
The severity of her tics back then meant that she couldn’t finish high school.
What EXACTLY is Tourette Syndrome?
We may have somewhat heard of Tourette Syndrome. But for most of us, when we really think about it, we may actually not know much about it at all, especially if we don’t have anyone close to us living with it.
Tourette Syndrome is a complex neurological disorder. It is defined by the presence of involuntary motor and vocal movements (or tics), says Tourette’s Association of New Zealand general manager Emma Henderson.
She says tics can sometimes be suppressed briefly, but it takes a lot of effort and often leads to exhaustion or distress.
Like Charlotte says in the video interview, think of tics like a sneeze. It just has to come out, and it hurts when you try to stop it.
“While many people have heard of Tourette’s, most understanding is still shaped by stereotypes or media portrayals that don’t reflect the lived reality of the condition,” says Emma.
Despite coprolalia or the swearing tic (when people with TS swear loudly in public) being the most well-known stereotype, Emma says only 10% of people with TS have it.
Emma notes that Tourette’s is on a spectrum, which means some can live with it and it’s annoying, but others can be really disabled by them. “They wax and wane, and can even subside for a few months at a time.”
How DISABLING Tourette Syndrome Can ACTUALLY Be
In Charlotte’s case, she says her TS was so disabling at first and believes it was triggered from being close to death after getting diagnosed with type 1 diabetes at 15.
Being needle-phobic, Charlotte says having to get regular insulin shots really triggered her tics. The combined stress of managing diabetes (with a needle phobia), leaving high school, plus navigating the pandemic, weighed heavily on her.
Having a severe tic attack, like punching herself on hours on end, was really difficult because she says trying to stop a tic hurts, but at the same time her tic was also hurting her.
She says her entire family, including two younger siblings, would help hold her down to give her some form of relief.
“It wasn’t only difficult for me, but for everyone around me.”
Most People with Tourette Syndrome have Other Co-exisiting Conditions
A majority (ranging from 80 to 90%!!!) of people with TS also have other conditions, according to a US study by the National Institutes of Health. The most frequently reported co-occurring conditions are ADHD, OCD and anxiety disorders.
Charlotte says there was a time she would go mute or couldn’t move and assumed it was an epileptic seizure or just a symptom of her TS.
But she and her mum eventually believed it could have been ADHD, but Charlotte says they really struggled to get a diagnosis.
She says after two years of her mum advocating for her, she was finally diagnosed with ADHD AND autism. And going mute, unresponsive or immobile were symptoms of her autism.
Getting her ADHD medication was life-changing, says Charlotte, because it stopped her brain from being so overwhelmed. Her severe tics and seizure-like overwhelm stopped and she hasn’t had them for more than two years now.
“My tics increased [with the medication] then it got better, but they were no longer harmful and I felt like I could live again.”
Her art has also helped her, like crocheting tops (the sweater she’s wearing is one of her own creations!) and whimsical prints and little sculptures. She says she gets to set up shop in events like Big Gay Out and Armageddon.
Raising Awareness about Tourette’s (AND All the Other Conditions She Has) to Help Others
After all she’s been through, Charlotte says she has a lot of knowledge about disabilities and has found “so much joy” in raising awareness and helping other people.
She says she runs a queer youth group and found that her knowledge about tics and other conditions have helped a lot of young people.
“I have a lot of people come to my group with tics and it’s just normalised.
“My hope for the future for now is to keep [helping people]… Just the joy of helping people and showing them that it is okay, it is normal and you can live a good life.”
