Check out the conversation I had with Sarah Waddington from Plymouth Herald about life with TS... The good, the bad and the funnies!
It was so lovely to share my story and to help spread more awareness of the condition. See article below.
Five years ago Clair Beckett's eyelids started twitching. Then her head started to jerk. Not long after her arms began to move, and her elbows started to shake.But it was the night before her Nan's funeral that Clair experienced an overwhelming rush in her body. Her mum walked her outside of the pub they were sat drinking in, and she completely lost control of her limbs. The symptoms lasted all night and into the following day, before she collapsed with exhaustion. Paramedics strapped her down in the back of an ambulance, but her body would not stop jolting. Four years after this attack, Clair was finally diagnosed with Tourette's.
It was in this difficult interim period that Clair, now 30, lost confidence in her doctors who continually told her it was simply down to stress.
Now the dance and theatre instructor, who lives in St Judes, has opened up about the condition, its highs and low, and the common misconceptions associated with Tourette's syndrome. She thinks there is a lack of knowledge and understanding surrounding Tourette's and more needs to be done to help and support those living with it.
Clair was officially diagnosed in May 2017, and since then has been going through “a process of acceptance,” which has manifested itself in many different forms.
"I just got on as normal as first,” said Clair, who co-runs an integrated dance theatre company, “but I've definitely been going through a process of acceptance.
“I felt like a pain because I kept going back to the doctors, then not listening to them, and not taking the medication they were telling me to take. I just didn't believe I was depressed or having a nervous breakdown.
"Everybody was very supportive, but a lot of people told me to take the advice of the doctors and accept I had anxiety and depression. I knew inside it wasn't that. I just had to keep ploughing on.” Although Clair's condition came on suddenly and powerfully in her mid-20s, she had experienced 'tics' both as a young child and as a teenager.
But now she experiences what are known as 'tic attacks'. Recalling the evening before her Nan’s funeral, she said: "It was a particularly stressful time and I noticed my arms started to move, my elbow started to move, and it started to build up.
"We were all sat around at the pub and I got this overwhelming sense, like a rush in my body. Then I stood up and my head started to nod up and down, and then my shoulder started to go.
"My mum came outside with me and my body just completely lost control. I was dipping up and down from the floor. Initially I was just super panicked because it was like something had taken control of my body, and then it went on all night and into the next day. I collapsed because my body was so exhausted.
"We went into the ambulance and they strapped me down, but I just couldn’t stop moving. The paramedic said he thought it might be Tourette's, but after, when I was in hospital, they thought it might be stress-related and said I was having a nervous breakdown.
"Four years went by after that, going back and forth from the doctors, and I think because I didn't have the real strong verbal ticks, like swearing, they thought it was a stress response.
"Then it peaked again and I had another bad episode. My mum sent me a TED Talk and [the speaker] talked about how there's a real misconception around Tourette’s and swearing, and how only 10 per cent of people with Tourette’s swear.
"This was an eye opener really. I started doing some research with my best friend and I started to film my episodes and writing a diary of my tics, to almost form a case to take to the doctors, because they wouldn't listen."
"Finally after a really bad episode we went to the doctors, and this was at the point where I was really struggling to walk. They managed to get me on the waiting list for a specialist neurologist, but the waiting list was 21 weeks.
"At this stage I was at my wits' end and decided to go private, and instantly got my diagnosis of Tourette’s syndrome. It was a four-year wait to get to that point and it was quite tough to be honest. It was a journey."
Clair was recently approached by BBC Three to feature on the channel's 'Things not to say' series. The set of interviews, titled 'Things not to say to people with Tourette's', filmed four sets of couples picking questions out of a hat and answering them – as honestly as possible. Because the programme takes a humorous approach, Clair worries a lot of media attention surrounding Tourette's misses the "darker side".
She said: "There’s obviously the really fun and light-hearted side of it, but there’s also the side people don’t see, like when you can’t get out the house. There are times when I can’t function, I can’t speak, I can’t walk.
"Swearing is the biggest stereotype. There's this conception that, 'You’ve got Tourette’s, you swear, you’re really funny and this out there person who says whatever they want'. It’s really the opposite and people have no control over what they say and do.
"People with Tourette’s can have off times, so sometimes it’s really on and all-consuming and other times it’s really off. I sometimes find that people are waiting for it [tics] to happen. There are definitely certain people I catch starting at me sometimes, almost waiting for me to do something.
"It’s caused waxing and waning, so you go through – particular as an adult – times when it’s happening and times when it’s not happening.
"I keep that darker side quite private. In the media, Tourette’s is either represented as doom and gloom or the complete polar opposite. That middle part of it, where you don’t know if you’re coming and going, is actually really difficult."
Although medication is prescribed for people living with Tourette's, Clair has decided to manage her syndrome in other, creative, ways. Having always promoted equality in the arts and in integrated dance, she feels she has almost carved herself a pathway and believes her diagnosis is a "calling".
She explained: "Opportunities have suddenly come up that I never would have engaged with if I hadn’t have had the condition.
"My advice for people with Tourette’s is to get to know it and feel empowered by it. Make something, or speak to people and get together. We have a group of people with Tourette’s who meet every month and try and do what everybody else does – get together, and laugh a lot.
"I want people to know that there’s opportunities out there for people with Tourette’s. I think some people feel a bit ashamed of their condition, so I guess the message from me is we have every right to function in our society and it doesn’t matter if you’re seen to be a little bit different.
"I think it’s saying to people they should get out there, and connect with other people with Tourette’s."
Clair is helping deal with her Tourette's symptoms through yoga, dance and other forms of exercise, to manage her day-to-day levels of stress. Although she can suppress her tics and hold them in, they need to come out eventually. She said: "The general day-to-day tics aren’t the problem, it’s when I have a long period of tics where it’s just non-stop, which can turn into what is called a 'tic attack'. It’s almost like a fit and sometimes it floors me.
"It’s strange because you’re fully aware of what’s going on, so it’s different to epilepsy. I can communicate, but sometimes I lose my ability to function in that sense.
"It doesn’t happen very often, but when it does I’m usually around very supportive people who know what to do. Previously we have just gone to hospital because nobody really knows what to do with it, as it’s not very common." She added: "I’m learning a lot and meeting lots of amazing people and doing lots of amazing things, which I never would have done before, so it is really positive.
"There absolutely is the negative side, but at the moment if someone was to ask me if I would change it, I don’t think I would, I’m quite happy.
"It does affect my life from time-to-time, but as someone with a disability, I want to feel empowered and live my life without feeling like I have to be saved or healed. I’m quite happy to be a little bit different."
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