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'They were screaming swear words at me.' What life with Tourette syndrome is really like.

It was just an ordinary morning in the Elford household.

Hayley, then-17, was just two weeks away from starting her HSC exams.

But when she woke up on that spring morning, her parents “freaked out”.

“I was squawking, hitting myself in the head and kicking my foot quite loudly every six or so seconds,” Hayley, now-20, told Mamamia. “They thought I was on some sort of drugs.”

Immediately, Hayley’s parents took her to the local hospital. It would be months until she was officially diagnosed with Tourette syndrome.

The Project speaks to the Maysey family about their experience with Tourette syndrome. Post continues after video.

While juggling visits to multiple neurologists as well as a psychiatrist to rule out any other conditions, Hayley completed her year 12 exams. It was a time she simply describes as “interesting”.

“I was very lucky because teachers somewhat understood, to an extent, or at least could empathise. They suddenly saw this massive change [in me] and I had put them in a situation where they had four days notice to provide me with a separate room to do my HSC exams,” Hayley recalled.

“I think I was one of the few students that was allowed to take a cushion into the exam because I kept slamming my head on the table.”

Although Hayley’s teachers were largely supportive and accommodating, she didn’t always receive the same treatment from her peers.

“I had a couple of people [at school] who immediately assumed it was Tourette syndrome and they started swearing at me to see if I would end up swearing,” Hayley said.

“They soon realised that I mimic things – I have a symptom called echolalia, which means I mimic noises, especially if they’re repeated over and over again. They would sit there screaming swear words until I would mimic them. Yelling the C-word at me and the F-word at me, over and over again.”

Hayley’s experience with Tourette syndrome.

After completing her last year of high school, Hayley was officially diagnosed with late onset moderate-to-severe Tourette syndrome at age 18.

The neurological condition, which lasts throughout life, affects approximately 45,000 children in Australia and results in involuntary muscle movements and vocalisations.

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For Hayley, her tics began as a head jerk to the side, which was initially ruled out as the result of stress and sleep deprivation.

Now, they include vocal and motor tics, as well as a jumping tic and a running tic.

“My tics vary from everything from barking to whistling to occasionally saying words or sentences that are very horrific. Sometimes I get myself into a situation where I think, ‘What did I just say? Why did I just say that? That was horrible,'” Hayley explained.

“There are sometimes words – like banana – or yelling ‘Charizard’ really loudly. Sometimes it’s randomly screaming, which I think works well as a university student,” she joked.

what is tourette syndrome
Hayley, 20, has both vocal and motor tics. Image: Supplied.

"But there's also motor tics – I have a tic where I have to hit myself in the chest. At it's worst, I have tics that present similarly to a seizure. It looks like a seizure, except I'm fully conscious.

"I've got tics where I'll be making something, and they will interrupt what I'm doing. I'll be making a tea, [the tic] will interrupt me and I will end up burning myself with hot water or I'll have to pour the cup of tea over my head.

"I've run onto roads. I've currently fractured my elbow because of a running tic that led to me attacking a hedge. There's... unique problems. It's hard to explain to people."

Hayley's boyfriend, who she's been with for two and a half years, has had to physically hold Hayley back due to her jumping and running tics.

"I do often have to have my partner grab me by the hand or physically pick me up and move me so that I'm out of danger," she explained.

In another incident, Hayley's friends had to grab and stop her when she attempted to jump over a stair bannister in the upper levels of the university library.

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What does Tourette syndrome really feel like?

For those who have never lived with or experienced the tics associated with Tourette syndrome, it can be impossible to imagine what they feel like.

For some, it starts as a niggling feeling of tightening in the stomach. Like a growing balloon that's about to burst under pressure.

For others, it's best described as a mosquito bite that desperately needs to be scratched.

In Hayley's case, it's a feeling she likes to describe as an "electric sneeze".

"For me, it's like electricity running down my spine. But it's also the feeling of needing to sneeze in my spine – it builds up and up and up in the same way that you would suppress a sneeze," Hayley said.

"You can feel the sneeze coming up and eventually, you're going to have to do it."

Side note – We speak to expert Katrina Kavanagh about the key to stopping bullying in our schools. Post continues after podcast.

Socially, however, it's a completely different feeling.

"The impact socially is like having a really offensive hat glued to your head and then asking people to ignore it," she explained.

"It's there, it's present and you're going to get the same reactions as you would if you walked out of the house with a hat that had a swear word on the front of it. People are going to notice that straight away and then make assumptions."

Hayley's goals for the future.

After finishing her HSC exams, Hayley began studying at university. It's her dream to be a primary school or special education teacher.

Since she commenced her studies, university has been a mix of positives and negatives.

"I've been encountering systematic problems when it comes to my education because a lot of people just don't know how to deal with me or don't know what to expect," Hayley said, of her experience with lecturers and tutors.

"They immediately assume what you are capable of or immediately assume that you don't have the communication skills," she added.

"[Some students] can be quite irritating as well. I had somebody make an anonymous rant about me screaming like a child. I was the first to comment. I said: 'This is a condition I have – Tourette syndrome. The screaming is far more irritating and painful for me than it is for you to hear.'"

The now 20-year-old has also received comments from acquaintances, who don't believe she should be able to continue her studies.

"I've had family friends come up to me and say that if I was their daughter's teacher or if I were the teacher of one of their kids, they would pull their child out of school," Hayley recalled.

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"And I'm just sitting there like, 'You know me. You knew me before my tics. You know I'm capable. I was tutoring your daughter beforehand.'"

what is tourette syndrome
Hayley is currently studying to become a teacher. Image: Supplied.

Although Hayley has some concerns over whether Tourette syndrome could affect her future goals, she's got a lot of people on her side.

"I've had a lot of tutors that might have been negative about my tics and really concerned about me being in their class – and now they're my biggest advocates," she said.

And she's not giving up on her goals, either.

"I was just starting university when my tics were really new and I wasn't diagnosed," she recalled.

"I was being told that it would go away in the next couple of months – and it never did. If it disappears tomorrow, if it does go away, I'm going to hate myself for not participating in the things I want to do."

When it comes to Tourette's, there's a lot of misinformation and misunderstanding about what the condition entails.

For Hayley, there's just one thing she wants people to understand.

"It doesn't impact intelligence. I am just as capable and I'm just as intelligent as anybody else," Hayley shared.

"It's not a choice. I might be saying some of the weirdest things on the planet or some of the stupidest things on the planets, but it's not who I am."

You can find out more about Tourette syndrome and donate to the Tourette Syndrome Association of Australia here.


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