13 Sep 2015

Tania Humphreys: A Tale of Tourette's

From One In Five, 7:06 pm on 13 September 2015


Tania Humphreys has been known to hit and kick, and she says, if she has a fork in her hand, it's best that people be out of hand's reach.

The Canterbury woman has Tourette's Syndrome and when she feels her "aura" or, as she puts it, a huge build-up of energy between her shoulders, she knows a tic is on its way. For her a tic can be anything from a verbal exclamation to a physical movement such as flicking her fingers, hitting or wrenching her neck.

Tania says Tourette's is a genetic neurological condition and the sounds and movements are involuntary.
She says the condition is greatly misunderstood and many people tend to associate it only with coprolalia (involuntary swearing) as this is the feature most often portrayed in films or other popular media.
 But she says only a small portion of the population who have Tourette's actually swear involuntarily.
"Because I have coprolalia, I can sort of see the funny side in it, but if anybody was making jokes at my expense I wouldn't be happy, and I do feel for all the children out there who are going through it."

She says despite having a range of tics, the way they present at different times is "completely random".
"I have no idea what tic is going to come." She says the physical tics mean she has, on occasion, hit her husband while other family members have "worn" glasses of water and lemonade.  And she says she will ask people to leave the kitchen if she is working with a knife to ensure she doesn't hurt them.

Tania says her older children ignore Tourette's while the younger ones sometimes adopt their own versions of her tics.  But she says, on the whole, her family find the tics entertaining.
"They know it's Mum - they just live with it"

Getting a Reaction

"People that know me love it." But Tania Humphreys says people in the street often stare at her.

"When I'm ticcing really badly people will look at me like, "Ok, that's just a bit random, a bit weird."

On an airplane she explains to people that she might hit them.  "When you tell people to move [because] you want to kick them, you get really strange looks."

On one occasion she was at a bottle store with friends and was initially refused alcohol because she was squatting and swearing and the attendant thought she was intoxicated. However she explained that she had a neurological condition and was subsequently served. But Tania says, generally, people are both understanding of, and fascinated by, the condition.

She says Camp Twitch, last year's national get together for people with Tourette's, was the first time she had met other adults with the condition. And she says, when she saw a woman sitting alone with no one else within hand or leg's reach, she knew she'd found someone with similar tics to her own. "We got along like a house on fire - it was awesome."

The Toll of the Tics

Tania says Tourette's is very much a part of her personality. "It definitely makes me who I am and how I take on the world" However she has little control over what comments will emerge. "I don't think there's any part of my brain that screens for appropriateness .. it just comes out when it comes out."

The condition does take its toll: the frequency of the tics increases with stress and Tania noticed hers were exacerbated by the earthquakes. "They affect your thinking and they affect your whole body."

She tries to reduce them when she's working but says she can't tame them completely. "I don't like to suppress them. I think suppressing them just makes them worse."

Tania has found that she doesn't tic when swimming and says the only day she didn't tic at all was her wedding day - to the chagrin of her brothers who, she says, were looking forward to it. “They were like, “Yes, she’s going to tic, this is going to be hilarious" - not a single tic !” But Tania says she would like to reduce the impact of the condition.
"If I could make the toll of the tics less on my body, then I wouldn't change them because they're fun."
But she wouldn’t want to be the source of anyone’s joke.  "It's alright to have a laugh with us but not at us."

Get the new RNZ app

for easy access to all your favourite programmes