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ABC News
ABC News
Health
By Lexy Hamilton-Smith

'I don't want to be randomly licking things': The neurological disorder heightened by coronavirus fears

Remi Seminara says his tics, anxiety and OCD have worsened during the coronavirus lockdown.

Remi Seminara has been washing his hands obsessively since COVID-19 struck.

He also can no longer walk in his Hawthorne home in Brisbane's east.

Instead, he gets around by hopping and jumping from room to room, but not because he chooses to.

In addition to obsessive-compulsive disorder [OCD] and anxiety, the 13-year-old has the neurological disorder Tourette syndrome, which typically causes people to cough, sneeze or clear their throat involuntarily.

Since the coronavirus pandemic set in, Remi's anxieties have worsened, causing his tics to increase and his condition to deteriorate.

"I started to stress out so much more — the tics, anxiety, it all just built up," Remi said, yanking the side of his head, sneezing and hitting the arm of his chair.

The syndrome, which is exacerbated by anxiety, is estimated to affect one in 100 people and while medication can be used to treat the symptoms, the condition cannot be cured.

Remi said his tics were hard to cope with, and he feared people had little understanding of what he and other people with the condition were going through.

"It is so overwhelming — if someone says 'don't touch that,' I would have to touch it," he said.

"You have to let it out and once you let it out — it's like satisfaction, you have to keep on doing it and it doesn't stop."

As police crack down on socially taboo behaviour to limit the risk of infections, Remi feared he could be fined for involuntarily coughing or sneezing on someone in public.

'It's not something he can help'

Remi's mum, Leesa Seminara, said her son's conditions soon had become out of control midway through the coronavirus crisis.

"It got a lot worse for his OCD symptoms with panicking and worrying about getting coronavirus and getting sick," Ms Seminara said.

"[He's had] a huge increase in the volume of tics, so instead of just simple vocal sounds, it's gone into jumping, spinning … wanting hand sanitiser all the time.

"Lots of things [have] heightened with his anxiety [by] knowing there was this scary virus out there."

To try and calm her son's anxieties, Ms Seminara was forced to turn the TV news off, as Remi became hyperaware of the number of coronavirus fatalities recorded around the world.

She said if her son happened to accidentally sneeze or cough on a stranger during the pandemic, she hoped they would show him compassion.

"I would hope the person that it happened to would be able to understand that it's an involuntary symptom of Remi's condition and not something he can help," she said.

'I don't want to be randomly licking things'

Sydney woman Hayley Elford, who also has Tourette Syndrome, said her involuntary tics had also worsened during the pandemic.

Sometimes the 21-year-old is only able to get halfway through a sentence before the tics cause her to meow, refer to herself as "a cheesecake" or state her love for bananas and chickens.

She also exhibits a swearing tic, which is a condition known as coprolalia.

But dropping offensive expletives were the least of Ms Elford's concerns — she also has a licking tic that causes her to lick buses, poles, windows and even herself.

"I don't want to be randomly licking things — individuals with coughing tics don't want to have those coughing tics," she said.

"They can see you. They know you are judging them. They can understand where the judgment is coming from but they do not want to be on the end of that.

"Sniffing ticks are the same. Everyone's understanding of Tourette's is swearing, but if I got on a bus and screamed the 'F word', no-one's going to really care.

"But if I cough or snort, that is going to be more of a problem right now."

Ms Elford said during the coronavirus pandemic it was important to understand that the actions of people with Tourette syndrome were still involuntary.

"I know it might seem a little bit crazy and might seem impulsive — and to an extent it is — but it's not in our control," Ms Elford said.

Like Remi, Ms Elford was "very afraid" of involuntarily coughing or touching a frontline worker and being fined thousands of dollars.

'Invisible' condition triggered by pandemic panic

Dr Shannon Morton, a child and adolescent psychiatrist, said the avalanche of public messaging warning Australians to avoid coughing or touching had paradoxically increased tics, rather than inhibited them.

She said the "invisible" conditions were triggered by the panic surrounding the pandemic, loss of routine, and an inability to release physical energy while in home isolation.

"Even those who have no pre-existing mental health conditions are really finding their mental health is affected," she said.

"So for those who were already struggling, this particular chapter in their lives is pushing people beyond what they are capable of dealing with."

She said many with Tourette syndrome lived in fear because people could mistake their tics for sickness or a viral illness.

"It does not mean they have COVID-19 and it does not mean they are contagious," she said.

Dr Morton said it was unclear if people with Tourette syndrome would be exempt from $13,000 fines for Queenslanders who coughed or spat on frontline workers.

"This is not the first time people with Tourette syndrome have perhaps had issues with the law," Dr Morton said.

"If they have compulsive swearing, sometimes that gets them into quite a bit of trouble with authorities."

She said the Tourette Syndrome Association of Australia had prepared cards to be issued to sufferers that outline symptoms of their condition, ahead of Tourette Syndrome Awareness Week this week.

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