Tourette’s Syndrome by Ellie Grant
Star of BBC2’s,
Employable Me

Ellie Grant, star of BBC2’s Employable Me programme, developed Tourette’s syndrome overnight. She explains how she put her life back together and found a new sense of purpose.

It might sound unbelievable that you could develop Tourette’s so suddenly, but that’s exactly what happened to me. I felt a bit poorly at work one day, then suddenly these words started popping out of my mouth. I had no idea what was going on. The doctor said it could be a blood clot or a tumour. I was in and out of hospital for a couple of weeks while they tried to figure out what was going on. I really thought I might die. So when I finally found out I’d got Tourette’s, it was almost a relief.

At the time I was working in care, but even though a lot of the clients had neurological conditions, including Tourette’s, I didn’t know much about it. I didn’t realise that there were physical symptoms too. I’ll have full leg spasms, and I’ve lost count of the number of phones I’ve smashed by flinging them at the wall or on the ground. I even cracked my own collarbone by smashing it with my fist. Sometimes the tics will keep me awake all night. I had a bad reaction to some medication too, and now I have OCD as well.

I ended up quitting my job. It was a hard decision to make because I loved my work. But I needed to concentrate on my own health, and on working out how I was going to cope. My verbal tics were causing problems too. Sometimes I’ll come out with things that are quite offensive and one of the clients started repeating the things I was saying. I was worried that he might end up in trouble because of it.

It was a really difficult time. I felt very isolated.

I remember trying all sorts of things to suppress the tics. I’d go and sit in the park and when I felt a tic coming on I’d hold my breath and keep swallowing to physically try to keep it down. I tried chewing gum, those things babies use for teething ‘ I even sucked a dummy. But nothing worked. Eventually, I realised I couldn’t stop it, so I was just going to have to learn to live with it.

One evening my Aunty picked me up and told me we were going to the pub. I flat out refused and said I’d wait in the car park. She said unless I came in with her, I’d have to walk home. So I went. It was a really pleasant surprise. People were so nice. No one was mocking me, and they were genuinely interested in knowing more about Tourette’s. They were reacting to the stuff I was ticcing, and we were having a laugh. It made me realize that there could be a lighter side to it; and how important it is to get out there and do what I can to help people understand the condition a bit better.

I met my boyfriend Jordan in the pub too. I was really embarrassed because I’d ticced something quite rude, but he just said: “Don’t worry about it – I can’t hear you anyway, I’m deaf.” We really hit it off. When I’m ticcing and I don’t want him to hear, I just ask him to take his hearing aid out.

Now we live together, which is great. My mum is just around the corner and my stepdad pops in all the time. I do need a lot of help, to cope with the motor tics and make sure I don’t hurt anyone, including myself. One of the things I do is throw my head back really violently. If I did that in the bath, I could drown – so Jordan always sits with me.

But it’s really important to me to be independent, too. I always was, before Tourette’s. So I try to cope on my own as much as I can.

Image credit: BBC / Optomen TV

Finding work was a big part of regaining my independence and feeling like I’d got my life back.

When the producers approached me about appearing on Employable Me I was reluctant. But it really did help me, and I liked that the programmes gave a rounded picture of Tourette’s and showed people that it’s not all verbal tics and swearing. The adviser I spoke to, Nancy, gave me some useful insights into my strengths. She helped me realize I could do something with my love of animals and actually turn that into a career.

I started volunteering at a local dog rescue centre, and I’ve gone on to set up my own dog-walking business. Now I’ve got 22 dogs on my books and I’m employing a couple of people to help me out. I’ve made a special lead that goes around my waist in case I start ticcing while I’m out with the dogs, but I’m mostly tic-free when I’m walking. It really relaxes me. It’s brilliant. I love being my own boss. I don’t have to explain myself or answer to anyone else.

Looking back, before I developed Tourette’s I was quite narrow in my thinking. Of course, I didn’t think I was at the time, but I can see it now. I’ve got a unique perspective – I can still remember my ‘normal’ life, so I’m very aware of how differently people with disabilities get treated.

Now I know that having a disability doesn’t make you any different to anyone else.

It’s definitely made me more open-minded, more receptive. I’d say I’m more of a people person now, and that’s opening up lots of opportunities for me.