Life as a teen with Tourette’s
Tourette syndrome struck Ryleigh Hawkins suddenly, and life has been a challenge.
The tics came on fast, and out of the blue. Ryleigh Hawkins, who was 15 at the time, didn’t know what to do when, in 2016, she started developing the symptoms which, a year later, would lead to her diagnosis of Tourette syndrome.
Now, two years later, the teenager from Pleasant Point, near Timaru, experiences random motor and vocal tics. It is difficult for her to get through a sentence without at least one expletive, and her body movements can change within seconds.
One minute she can be standing talking, the next her body forces itself to move, resulting in random lunges, clapping or tapping her fingers on a table.
Tourette’s is an incurable disorder causing uncontrollable verbal outbursts and physical tics. Ryleigh says the condition can be difficult for strangers to understand, but her friends and her school, Timaru Girls’ High School, where she is in year 13, have been supportive.
The exact cause of the life-changing condition is unknown.
It has been a huge struggle, Ryleigh says, but she is using her bright, positive attitude to help others struggling with the condition.
Lack of support and information when she was diagnosed prompted her to help others with Tourette’s through a YouTube channel, which already has more than 17,000 subscribers.
Her last video, uploaded on Tuesday, already had 14,000 views by the following day.
Of her nine videos, one called Swearing In Class has had more than 525,000 views. Through her social media following, Ryleigh has been contacted by fellow sufferers from throughout the world, thanking her for her openness.
‘‘I’ve always wanted to do a YouTube channel and I came online to find videos about young people with Tourette’s and couldn’t find anything,’’ she says.
The condition has gained more understanding and exposure in New Zealand recently, with several documentaries about it. The Prime documentary series Living With Tourette’s is now screening on Sunday evenings. Last year, TVNZ aired Camp
Twitch, a one-hour special about the annual camp run by the Tourette’s Association of New Zealand. Ryleigh and her mother, Shelley, attended the camp last year.
Ryleigh says publicity about Tourette’s has helped normalise a condition that arrived ‘‘out of the blue’’.
‘‘I got it in 2016, but you have to wait a year to be diagnosed. It was just before my 16th birthday that mine was triggered. It was really quick for me.’’
She still remembers the day vividly. ‘‘It was sports day and I was doing a walk around the block and my head went up for no reason. I couldn’t help it.’’
She woke up the next morning and her head continued to ‘‘keep going up’’ involuntarily.
‘‘I went to school for a few classes and my face was dropping.’’
Her concerned teachers sent her to Timaru Hospital. ‘‘I had a CT scan and that night I started making noises.
‘‘Then my face was shrugging and all the time it was so hard to explain, as I just couldn’t help the movements.’’
Her swearing tic started at the beginning of 2017 – something she says happens to only about 10 per cent of sufferers.
‘‘You have to have two or more vocal and motor tics [to be diagnosed] and you get Tourette’s before you’re 18.’’
Learning to live with the condition has been a constant learning curve, she says. She knows what her triggers are – anxiety brings it on and she is on anti-anxiety medication to treat that. She also takes other medication to treat the condition.
She has seen a range of medical professionals, including neurologists and a psychiatrist.
It also took a while to get her medication right, she says. In the beginning it made her tired and, despite having good sleeps, she would still wake up feeling tired.
For now, her medication seems to be working. She says being in situations where she knows it is particularly inappropriate to yell out obscenities makes the stress of trying to control her tics worse.
At first, her friends and classmates found her tics funny, but now it is just part of who she is, and they are used to it.
To add to a condition which can be challenging enough, she says her tics are constantly changing.
‘‘For a while I would collapse and couldn’t move. I had to be accompanied everywhere.
‘‘My symptoms are always changing and I think ‘Oh man’ when something new starts.’’
Sitting in class can be a struggle because trying to listen to her teachers, and suppress her tics, usually makes them more obvious. ‘‘It is really frustrating.’’
Her mother says the school has been very helpful, often allowing her more time to complete a task.
‘‘It will be tough next year when Ryleigh goes off to university. That will bring a new set of challenges.’’
For both mother and daughter, going to Camp Twitch was like discovering a new world, they say.
‘‘There’s nothing out there in the way of information, really,’’ Shelley says. ‘‘When we got to the camp, Ryleigh, who had just turned 17, was the oldest out of the teenagers there.’’
Ryleigh says the experience was a positive one, being with fellow sufferers and learning more about the condition.
It was also a chance to feel more normal. Being a teenager can be a tough enough time as it is, let alone dealing with a condition that draws unwanted attention, her mother says.
They agree it is Ryleigh’s sense of humour and positive nature that have helped her gain strength.
‘‘When she first got it, there were some tough, sad times obviously, and there still are,’’ Shelley says. ‘‘We have had our moments, that’s for sure.’’
Some of those ‘‘moments’’ have included the anxiety of unknown situations.
‘‘When I first got Tourette’s I would get invited to someone’s party and, if I didn’t know some of the
‘‘For a while I would collapse and couldn’t move. I had to be accompanied everywhere. My symptoms are always changing and I think ‘Oh man’ when something new starts.’’
people there, my anxiety would be huge,’’ Ryleigh says. ‘‘It began to stop me doing some things and it was holding me back.’’
Now she has adopted a ‘‘this is me now’’ approach to life. ‘‘I just think I’ve got it [Tourette’s], so why let it get you down.
‘‘I have a good sense of humour and my coping mechanism has always been laughing.’’
She says most members of the public are accepting of her outbursts and sudden movements and she usually explains she has Tourette’s when she’s out. ‘‘It doesn’t restrict me from doing anything.’’
She goes to the movies and does other normal teenage activities. She also drives to school most days, and says most people with Tourette’s don’t have tics when they’re behind the wheel.
‘‘They might blink or have the odd movement, but that’s it.’’
Her social media following has been a ‘‘huge surprise’’ and she is glad she can help others, and put a positive spin on something which can be negative.
‘‘It shocked me when I saw people were watching my videos on YouTube.
‘‘When I got to 100 viewers it was the most amazing thing in the world. It’s been a huge confidence boost and I’ve had so many positive comments as well.’’
She says she always answers messages from viewers.
‘‘A 14-year-old boy from Canada said he was starstruck to be talking to me. I like to offer people support, though.’’
Eventually she hopes to become an occupational therapist. ‘‘I’d like to help others.’’
Her YouTube profile is Tourettes Teen, and her videos can be found at https://bit.ly/2JVYjie.