Rose tells of the curse of Tourette’s syndrome

'Rose', an Emirati, talks about what it is like to live with Tourette’s syndrome (TS) – a condition that causes sufferers to make involuntary sounds and movements such as tics.

The US football team’s goalkeeper, Tim Howard, is just one of many celebrities who lives with Tourette’s syndrome. Kevin C Cox / Getty Images
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ABU DHABI // Meet Rose.

The Emirati spontaneously curses in several languages. She grunts, barks, hits herself involuntarily and greets strangers with a one-fingered gesture.

Her speech is peppered with random words and phrases that she repeats, and while at the airport she announced she was a terrorist.

The 20-year-old has Tourette’s syndrome (TS) – a condition that causes sufferers to make involuntary sounds and movements such as tics.

It can make life difficult in a society which has little education and awareness of the neurological disorder, she says.

“They think a demon is inside me,” says Rose, about reactions to her involuntary muscle spasms and vocal tics. “They think I am possessed.”

This is not helped by one of her tics that cause her eyes to roll involuntarily back in her head, she says with a wry smile.

When she speaks, her eyes flicker. Her hands, crossed in the lap of her flowered dress, twitch constantly.

She began to exhibit symptoms when she was eight years old.

“I started doing actions like touching the floor, washing my hands all the time and stuff like that.

“When I started getting older I started doing barking and weird voices and doing stuff with my face. Everyone thought it was a phase I was going though.”

It was during a stay in the US when she was 16 that Rose sought medical advice.

“Why am I swearing? Why am I saying bad words? Why am I putting the middle finger up to people?” she asked.

“I don’t know why this is happening. Every time I am in an airport I am saying I am a terrorist. I am saying stuff people are not supposed to say.”

Eventually, Rose had Tourette’s syndrome diagnosed.

It came as a huge relief to know there were others like her.

“I saw pictures of people doing what I do and I started crying. I was relieved. I thought something was wrong with me, that I was abnormal.”

Rose says her parents thought she was overreacting when she told them.

“My family are not convinced — they do not know what this is,” she says. “They think I am doing this to grab attention.”

As a youngster, some of her facial and vocal tics could have been written off as the quirks of childhood.

As an adult, Rose is becoming increasingly aware of her condition and the unwanted attention her involuntarily actions, such as swearing, can draw from the public.

“I swear in Arabic, in English. In every single language I know how to swear. If I see a French person I am going to swear in French. If I see a German person I am going to swear in German.

“I do lots of stuff I do not want to do. I scream. People stare and it makes me tic more.”

Rose took medication for tic suppression but found it dulled her senses and made her feel emotionally blank, she says.

Many individuals with TS experience additional neurobehavioural problems that often cause more impairment than the tics themselves, such as an obsessive compulsive disorder (OCD), which Rose has also been diagnosed with.

For Rose, this causes symptoms such as habitually washing her hands and checking light switches but also intrusive thoughts, worries and repetitive behaviours, which lead to ritualistic behaviour patterns such as hitting herself.

“It is like my dad will die in two days if I do not hit my head,” she says.

The Emirati is sharing her story to raise awareness about the condition but is using ‘Rose’ as an alias so as not to upset her family by speaking out.

She has chosen to tell some of her closest friends about her Tourette’s after they queried about some of her tics.

Some are understanding while other friends and acquaintances can be more judgmental, she says.

The prevalence of TS in the UAE is not known but it is estimated that it affects one in every 100 schoolchildren.

According to the British charity Tourette’s Action, more than 300,000 children and adults in the UK live with the condition.

Rose would like to see more awareness and education about the disorder, and more support groups.

“People ask ‘why do you blink a hundred times a minute? Why do you nod your head? Why do you twitch?’” she says.

“There is a lack of education. We just need support groups. Better awareness. Better doctors.”

jbell@thenational.ae