A MAN from Reading is defying those who said he would be held back by a condition and advocating for better understanding.
Ryan Stevens has been living in Reading for around three years, having set up an animal sanctuary and worked hard to improve education around Tourette’s syndrome.
“Tourette’s is a neurological issue caused by a fault in the brain,” he explains, “though we’re not quite sure what exactly that fault is.
“It largely involves involuntary movements and sounds [known as tics], often words– people can often echo responses [echolalia], and of course the more well-known coprolalia: the involuntary use of swearing.
“It can also include something called copropaxia, which means involuntary rude gestures, like flipping someone the bird.”
Only around one in ten people with Tourette’s experience coprolalia–involuntary ‘obscenity’– despite its status as one of the more well known symptoms of the condition.
“Some say it’s genetic, some disagree, which separates it from other tic disorders, as a lot of those are mental health-related.
“That means that they are more treatable with therapy.”
He explains, however, that Tourrette’s is: “more than just that, a little bit harder.”
The condition is described as a more chronic form of tic disorder, making cure currently impossible, and treatments are more focused on tic mitigation.
For Ryan, he first started experiences of the condition from around the age of 11, when he began to almost faint as his legs would give out from underneath him.
“At the time,” he explains, “it was dismissed as trying to get out of school.
“It made me think at the time that I had been doing so–it made me doubt myself like that, and I felt like I’d been making it up.”
However, at around 14, a stint of bad headaches led to a medical visit.
“Then I started getting tics, jerky head motions– it helt like someone had their hands around my head and was trying to break my neck.
“I had the scans and test to make sure it wasn’t anything more nasty affecting the nerves–it was a really scary time.
“As it progressed through my teens, I started experiencing ‘pseudo-seizures’, which are now known as tic attacks.”
Tic attacks comprise of severe periods of uncontrollable movements, including both common and recurring tics as well as whole-body movements.
“It wasn’t until about 21 that I was formally diagnosed with Tourette’s.
“It gave me an answer–just one– to what was going on, and it did take a lot of weight off my shoulders.
“However almost as soon as that weight is lifted, a new one is added: now I had different questions.
“How do I navigate this, and even stupid questions–but those can weigh the heaviest.”
However this questioning, he says, is something that spurs him not only to speak out about his condition, but also to advocate for better education and representation around the condition.
“I don’t want kids to have that worry in their heads; they need to be able to go out and live their lives as they are.”
Among his most recent appearances include on Victoria Derbyshire’s Unbelievable Britain, where he explained how the condition has affected his life, as well as where he has been able to overcome it.
He has also appeared on BBC1, BBC2, ITV, and Channel 4 discussing life with the condition, and is currently writing a book.
He also posts to social media using the handle TourettesLadOfficial.
While Tourette’s Syndrome is well-known, its nuances and reality are not always well understood, not only by the public, but even by healthcare professionals, he says.
“People often mean well, they try their best to make you feel included, but often come up with the wrong thing to say.
“I was told by the Job Centre about 8 years ago that I would be good for nothing.”
However Ryan has defied those expectations, and now runs a turtle sanctuary here in Reading.
The sanctuary is government-licensed, and sees turtles who are discarded, unwanted, and abandoned given a new home and cared for rather than being left to suffer.
However, it also has considerable implications on his social life, he explains.
“Unless I’m out with people I trust, I don’t want to talk to people– I tune the world out.
“I feel hot with it, the thought that because I’m out by myself I’ll panic more, so it can limit you.
“It can be tiring and debilitating–I’ve fractured my ribs before now because of the strain.”
One of the things which would help alleviate this is better public understanding of the condition and life for those who have it.
“Having more awareness, better education–it just being better known about–would really improve things.
“It’s not even just the general public: medical staff, even, could benefit from better understanding.
“There are around 300,000 people living with Tourette’s just in the UK–not a small number at all– but medical understanding of it is not only lacking, but underfunded as well.
“The whole idea of it needs to change across the board, how it’s perceived to be. It needs to be the new norm rather than just seen as being a joke.
“There are those who don’t intend harm, but are ignorant about the realities of it, and then of course there are those who just don’t want to understand it at all.”
As for his advice for those looking to help those with the conditions: “Listen between the tics– ignore them as much as you can.
“Sometimes I will find my own tics funny, and those who laugh with you are welcome to go ahead.
“Your brain can produce words and sentences I’d never have put together myself–you have to find the funny side of that.
“But people also need to realise that if I’m struggling, it’s okay to ask if I need help; it can make my body feel like it’s being electrocuted– so do feel free to offer to help someone.
“For Tourette’s specifically, I feel representation is key: I live with one of the worst cases, if there’s representation for people like me, there will be a ripple effect, helping so many people.”
Despite shortfalls in how people with the condition are perceived, Ryan says he’s still happy to defy expectations.
“I’m very happy with how my life has turned out.”
More information about Ryan’s advocacy and animal shelter work is available via: linktr.ee/TourettesLadOfficial
