But a 19-year-old in Wales hopes to dispel some of the myths about Tourette’s via a series of YouTube videos.
Katy Gough has Tourette’s, which results in coprolalia, “the swearing symptoms.” Only a fraction of people with Tourette’s have that particular symptom.
In fact, Tourette’s involves tics that present themselves in various ways and intervals, further described by the National Institute of Neurological Disorders and Stroke as “repetitive, stereotyped, involuntary movements and vocalizations.”
These symptoms tend to present themselves most often in the early teenage years, easing somewhat over time.
December marked the second anniversary of Gough’s diagnosis. Since early 2014, she has been telling her more than 10,000 subscribers about her condition and how she deals with it.
“It was the most spontaneous decision I have ever made in my entire life,” she said about that first episode. “I decided to do a small video about my tics soon after being diagnosed.”
Gough kept the camera rolling as she gave viewers a raw look at how her day goes when she has her tics.
“I thought this would be a good way of reaching out to people and showing support for others. I uploaded to YouTube to see what kind of response I got and carry it from that,” she said.
Her coprolalia is not a constant issue.
“Tourette’s is a condition that waxes and wanes,” Gough said in another video when her symptoms were not presenting themselves as often.
Many of the videos she posts have her speaking to her viewers casually about what’s going on in her life and the struggles and triumphs she experiences while living with the disorder.
Gough’s anxiety is something she deals with daily, and she took her subscribers along, as she braved boarding a train, something that had caused her great anxiety.
“I have a lot of anxiety around being in a certain place at a certain time as I’m a bit of a control freak and prefer to do things at my own pace and because of this, taking public transport makes me incredibly anxious,” she said. “You have no control over what time you travel, how busy it’s going to be and you don’t have the ability to say ‘no’ and turn around and go back home once you get on. I had previously had a massive panic attack on a train journey to London and now, a large part of me associates trains and public transport with anxiety and panic attacks.”
She said that giving control of her travels over to someone else also made her decision to get on a train a big leap.
“The struggles I cope with on a daily basis are small,” she said. “I decided to set myself a goal of taking the train regularly and decided to take the YouTube channel with me.”
Since Gough has been telling the YouTube audience about her journey, her longtime friends have noticed some changes for the better.
“I think vlogging her experiences has made Katy much more confident about expressing herself and talking about her feelings,” said Ishani Sinha, who has known her since age 11.
“Katy has also been able to put into practice her love for helping people by spreading awareness of Tourette’s and other mental health issues and erasing stigma,” added Emily Davies, a friend of Gough’s since high school. “I had never met anyone with Tourette’s before and Katy has made me feel comfortable with being able to support and understand people with a similar condition, as she explained different aspects to me.”
Davies also pointed out that Gough encouraged her friends to not be uncomfortable laughing about her condition, as she often finds it funny herself.
“Katy’s Tourette’s has become less prominent now, but I honestly don’t think she would be the confident, inspirational woman she is now without her conditions,” Davies said.
Gough said that the YouTube commenters’ often positive comments are what keep her going.
Reading these comments, she said she sees that many people have been able to relate to her experiences and feel comforted that they’re not alone in their disabilities.
“I’m amazed at how I’ve been able to inspire people of all ages, races and disabilities to have confidence in their individuality and to challenge the stereotypes attached to the term disabled,” she said. “I feel like I am one person talking to a camera and one person talking to people out there, a niche in the world that needed to be spoken about and addressed.”