Renee's story

Nelson woman Renee Harvey is constantly misjudged by people because of the way she speaks and acts in public. Unfortunately the Renee that most people see or meet for the first time isn’t the real Renee. Renee has extreme vocal and physical tics caused by Tourette Syndrome. She has no control over the outbursts or the way her body twitches.

In New Zealand there are a number of adults with tics so extreme that they are unable to work, socialise or even do every day chores like grocery shopping or hanging out washing.

In fact just trying to have a conversation is hard for Renee due to both the physical and vocal tics that she endures.

Renee is one of the worst affected by Tourette Syndrome in New Zealand.

She doesn’t like speaking face-to-face with people because she has an uncontrollable spitting tic – the tic that she hates the most.

But talking on the phone can be equally as frustrating for Renee. If she isn’t throwing her phone, she sometimes hangs up accidentally or bangs it down on whatever surface is nearby.

Because Renee is one of the 10 per cent of people with vocal tics that swears, her conversations are peppered throughout with “shut up bitch, sorry, I love you.”

Renee began having mild tics as a child. She was medicated with Ritalin for suspected ADHD at age 10 which resulted in an explosion of both vocal and motor tics. Eventually she was diagnosed with Tourette Syndrome.

Over the past 14 years Renee’s tics has become progressively worse. Everyday chores that we take for granted, like hanging up washing or making a cup of tea, are a drawn-out and at-times dangerous task.

Renee’s arms are scarred from constantly burning herself while cooking on the stove or from hitting the boiling jug. Most days her arms, legs and torso are heavily bruised from tics that causes her to thump herself or kick herself repeatedly.

She says the physical toll the tics take on her body make her feel much older than her 24 years.

“Sometimes I can hardly walk. My back and my hips ache constantly,” she says. “Some days it is as much a psychological struggle as it is a physical one.”

Due to the demands of her tics, and the isolation of having what others deem to be socially unacceptable behaviour, Renee spends most days stuck at home.

The only time she gets any relief from her tics is when she sings – and what a voice she has.

Renee sang to an audience of more than 100 people at Camp Twitch 2016 – one of just two times she has ever sung in public.

Everyone was stunned – not only by her voice but also at the absence of the severe physical and vocal tics that they are accustomed to seeing.

In late 2016 Renee was granted permission to trial the use of medicinal cannabis spray to try to manage her tics. Unfortunately, the spray was not as successful as Renee had hoped it would be and the cost, approximately $900 per month, was something that her grandparents could not afford to continue to spend.

“For a while my body tics did lessen but not for long,” explains Renee. “There’s not much else I can try now except maybe brain surgery*.”

Despite all that life throws at Renee she tries to remain upbeat and philosophical. When it comes to Camp Twitch she is the star of the event – not only because she is the loudest and most outrageous personality there, but because she charms everyone that she meets.

* Deep Brain Stimulation surgery (DBS), commonly used to help those with Parkinson’s Disorder manage their tremors, has been used in the USA and Australia to help manage tics but Tourette Syndrome does not qualify for the surgery in New Zealand.

 

Get an insight into how difficult life is living with Tourette Syndrome by watching “CAMP TWITCH”: The Documentary on TV2, June 26th at 8.30pm