By Nathalie Bonney @nathaliebonney
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Videographer / director: Adam Gray, Marcus Cooper
Producer: Nathalie Bonney, Ruby Coote
Editor: Marcus Cooper
The 21-year-old, from Wickford, Essex, has suffered from Tourette’s syndrome since she was a little girl. Although Tourette’s is fairly common – approximately one in 100 people have it – it’s much more unusual to be diagnosed with the neurological disorder before puberty.
In Emilly’s case, she was diagnosed with Tourette’s when she was just four-years-old.
As a young teenager, her tics were so extreme she suffered fits and was even hospitalized.
Bullied because of her tics, Emilly was a shy and unconfident child and, until she was age 15, Emilly would get her mum to talk on her behalf. But singing and performing gave her an outlet to express herself.
Emilly told Barcroft TV: “When I sing I don’t tic so that’s really cool and that’s why I started singing – that’s why I still sing - because I enjoy it a lot.
“It's like a way to escape as well.
“When I’m on the stage and singing it's like the best feeling ever.
“I become a totally different person on stage and I become really confident.”
There are different types of Tourette’s – and coprolalia, the swearing tic is only present in 10% of Tourette’s sufferers.
For Emilly her most common tics are motor: frequently touching her nose, and vocal: meowing, making a clicking sound with her mouth, and repeating words and phrases, including different accents with no control over what she says.
She said: “Sometimes they can be just like about bunnies and fairy princesses and ice kingdoms. And then they will be like backstreet abortions and prostitutes. So, it can be either really light hearted or really quite dark.”
Over the years Emilly learnt to suppress her tics – a skill that she describes as ‘self-preservation’.
She said: “If I am out and about in the street or somewhere I don’t know, I don’t always want to let my tics out because it can sometimes draw unwanted attention and not everyone is necessarily nice about it.
“If you are just walking on the street and you start doing all the movements and stuff people do kind of look like, ‘ What are you doing?’”
Much like attempting to talk with hiccups, suppressing tics requires enormous concentration and causes Emilly to go into tic overdrive when she stops.
She said: “The tics were at their worst around age 13. I get tic fits every now and then where you can’t stop tic-ing and I was taken to hospital. it was really stressful – they couldn’t do very much, it was just sedating me.”
Doctors believe Emilly’s difficult birth could have been the cause of her Tourette’s.
Mum Brigette Carter said: “Emilly’s birth was quite traumatic.
“She was very poorly for the first couple of days. She had her stomach pumped, she had to be forced fed. And she used to wake herself up in the middle of the night, and I’m not exaggerating when I say 52 times a night was normal.
“She would just twitch and wake herself up all the time.
“Because she was so tic-y, from a few weeks old, the paediatrician thinks that it could have been from as young as 8 weeks.”
Emilly’s parents didn’t receive a diagnosis for their daughter until she was four however.
Brigette said: “When the paediatrician first said, ‘Your daughter has Tourette’s syndrome,’ I was a bit freaked out because I didn’t know anything about it.”
The family learnt to laugh and joke about some of the more amusing scenarios Emilly found herself in: a 10-year-old-Emilly repeatedly saying ‘chicken strippers’ and, during a supermarket visit, shouting out ‘Kate Moss is dead’ much to the confusion of the other shoppers.
By embracing Emilly’s Tourette’s, Brigette and husband Peter hoped their daughter would never feel ashamed or embarrassed of her condition but in spite of their efforts, growing up with Tourette’s crushed Emilly's confidence and made her an incredibly shy child.
Emilly said: “The whole situation 100% affected my confidence. Like I wouldn’t talk to people. I used to be very shy.
“I talked to people through my mum. So, if we were out meeting new people, I wouldn’t speak to them. I sort of would tell my mom what I wanted to say and she had to speak. My social skills were awful.”
Tourette’s in children is frequently accompanied by other related disorders and Emilly suffered from Obsessive Compulsive Disorder and anxiety throughout her early teen years.
Emilly said: “Some of my rituals would involve like, if I walked past a door I had to touch in the middle or either side and sort of touch in the corner of either side all the way around.”
Passing light switches, she would have to turn them on and off multiple times, ending up, “blowing fuses all the time.”
At school she was teased and mimicked for her differences.
She said: “There were 6 girls in my year and they were really nasty. And they sort of imitated me and threw my medication about and hid my stuff.
"My lab coat would end up in the bin and I will be searching around for it and my PE kit would end up in random places, hidden under stairwells. You would catch them walking past laughing and stuff.”
In spite of the trials she faced, Emilly was encouraged by her parents to take drama classes and singing lessons. Astonishingly Emilly thrived on stage, proving herself to be a born performer.
Emilly recalls: “My mom would make me go to drama school on Saturday and go to dancing and go to singing in various clubs and stuff to make me make friends. And just sort of put me in to situations that I didn’t want to be in. But it worked because I was then able to form friendships.
And slowly that kind of helped me become more confident.”
Brigette couldn’t be prouder of her daughter’s transformation.
She said: “When I watch Emilly perform it’s quite amazing because she has always been a very shy person.
“There could be hundreds and hundreds of people sitting in front of her and it didn’t faze her at all. She would act, sing, dance and do whatever. It didn’t matter.”
Now studying production management at Edgehill University, Emilly sings for enjoyment rather than as a future career.
In the long term, she would like to see a greater understanding and tolerance of Tourette’s - and admits she needs to stop suppressing herself as part of this.
Emilly said: “I don’t let [tics] out in public because I am worried but then if people never see [Tourette’s] out in public, are they necessarily going to sort of, you know, going to be able to be okay with it?”
“I think the biggest challenge of living with tics was just becoming a confident person, learning to live with it, and just accepting that's who I am.
“This is gonna be part of my life and I can still be a normal person and live normally. “