Ellie Grant, star of BBC2s Employable Me programme, developed Tourettes 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 Tourettes so suddenly, but thats 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 Id got Tourettes, 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 Tourettes, I didnt know much about it. I didnt realise that there were physical symptoms too. Ill have full leg spasms, and Ive lost count of the number of phones Ive 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 Ill 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. Id go and sit in the park and when I felt a tic coming on Id 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 couldnt 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 Id wait in the car park. She said unless I came in with her, Id 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 Tourettes. 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 Id ticced something quite rude, but he just said Dont worry about it I cant hear you anyway, Im deaf. We really hit it off. When Im ticcing and I dont 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 round 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 dont 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 its really important to me to be independent, too. I always was, before Tourettes. 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 Id 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 Tourettes and showed people that its 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 Ive gone on to set up my own dog-walking business. Now Ive got 22 dogs on my books and Im employing a couple of people to help me out. Ive made a special lead that goes round my waist in case I start ticcing while Im out with the dogs, but Im mostly tic-free when Im walking. It really relaxes me. Its brilliant. I love being my own boss. I dont have to explain myself, or answer to anyone else.
Looking back, before I developed Tourettes I was quite narrow in my thinking. Of course I didnt think I was at the time, but I can see it now. Ive got a unique perspective I can still remember my normal life, so Im very aware of how differently people with disabilities get treated.
Now I know that having a disability doesnt make you any different to anyone else.
Its definitely made me more open-minded, more receptive. Id say Im more of a people person now, and thats opening up lots of opportunities for me.