Having Tourette’s is like I’m a puppet being operated by someone else


Paul is one of around 300,000 people in the UK living with Tourette’s Syndrome – a neurological condition that causes involuntary movements and sounds called ‘tics’. (Pic: Tourettes Action)

‘I’ve had tics all my life; but I’m a boomer and not much was known about neurodiversity when I was a child.

Growing up in Lancashire, I was eight when school suddenly became a nightmare. I was bullied and picked on and I didn’t understand why. I was told off a lot for not being able to sit still or for blurting things out. 

I don’t really remember what I did, I just remember the punishments and being hit. Once, when I forgot to take my PE kit in, a teacher took me into a storeroom and I got three whacks on each hand with a belt. I lost all faith in everything then and didn’t feel safe at school anymore. 

During my last few years at school I would fall to the floor and not know why. When I was 14, I went down carrying a full tray of hot food to the front room. I was like one of those wooden toys where you push the bottom and they collapse in on themselves.

I had six exploratory investigations for what I now know is a leg drop tic, but at the time I spent weeks in hospital, where they couldn’t find out what was wrong with me. They told me it was all in my head

In the end I left school without any education, having been told I would spend most of my adult life in prison. I managed to get a job in a scrapyard and later became a doorman. I was good at it because I can read body language and could stop problems before they started.

One night though, there was an incident at work. The people involved left, but later one of them was waited for my friend and colleague at his home. They shot him dead. That absolutely rocked me because I’d never known anybody to be killed before. I kept asking myself – was there anything I could have done? Could I have stopped it?

Paul has suffered from Tourette’s for most of his life and was badly bullied at school as a result of the condition. (Pic: Owner Supplied)

Then things kept happening; my body would move really fast or my hands would move. I didn’t know what was going on. I felt like I was having a nervous breakdown. I thought it was work and the trauma of losing my friend, so I changed jobs and moved up to Berwick-Upon-Tweed where it was quieter. 

I became a window cleaner, but I kept falling. When I came off my ladder from the first storey, I damaged my knees and my doctor told me I couldn’t do that job anymore. I got married in 1998 and we went on to have four children.

When my best friend Bill took his own life in 2009, after living with Parkinson’s for seven years, I was distraught.

At his funeral, I started making small noises and my shoulders would move like a shrug. Everyone thought it was grief. Within three weeks I went from that, to massive motor tics, complex vocal tics and shouting swear words and phrases like “hey” and “f*** the pope”. Or I would whistle and bark. My arms and legs would contort. I knew something wasn’t right.

My kids kept saying “Why are you doing that Daddy?”. I didn’t know what to tell them.

It came on so fast that the doctors didn’t know what was wrong with me. They thought I had a brain tumour and sent me for an MRI. It was so frightening.

I was finally diagnosed with Tourette’s at 46 years old. I was relieved to find out I didn’t have a brain tumour, but when they told me what was wrong with me, I was sent on my way without any information on how to manage it.

Paul has been left with a secondary disability because of the condition (Pic: Tourettes Action)

The condition leaves you with a lot of self doubt. I would ask: Why am I doing this? Am I just a bad person who says nasty things to people?  

When I go on a train, I might shout ‘bomb’. If I saw someone out in public who was overweight, I would shout ‘gastric band!’ If I met someone who is gay I may say a homosexual slur. I apologise and explain that it’s not my opinion. I tell them: ‘that must have come across as very hurtful, but it’s not me, it’s my Tourette’s Syndrome.’ I will apologise for the offence caused but not the condition. 

I’ve also hit myself over the head with pans, touched hot stoves, and I can’t use sharp knives because I’ll tic and stab myself with them. I feel like I’m a puppet being operated by someone else. 

I go through periods of time where I can’t walk and I wear leg braces and I’ve got a secondary disability because of this condition. I’ve also got orthopaedic issues that need surgery and I’m getting arthritis from dislocating my shoulder. I throw my arm so fast up in the air that my shoulder comes out of joint.

After I was diagnosed, I spent three weeks inside, because I thought, it’s not fair on my children going out with me when I’m like this. They get unwanted attention. People look at me, film me, laugh at me, follow me around supermarkets… But then I realised that I would probably have this condition for the rest of my life, so I decided to take action. 

Father-of-four Paul found it hard to find work after being diagnosed. (Pic: Tourettes Action)

I went to all the supermarkets, the library and the police station, and I put up an exhibition of photos and captions explaining that I live in this town, that people might not have noticed me before, but they will do now. I said: “Don’t be afraid, I’m not drunk, I’m not on drugs; I’ve got Tourette’s Syndrome.”

After I was diagnosed, I couldn’t get any work, so I turned a massive negative into a positive and worked voluntarily as an advocate for parents whose children have Tourette’s. 

I now work with the organisation, coaching people who struggle at work due to neurodiversity and educating employers about the benefits of working with people who are neurodivergent. I love this job. I’m passionate about it. I give talks and appear in panels across the world.

The tics are a lot less now, and that is down to my attitude. But they are always there. I don’t love Tourette’s but I embrace it. I am in a rare position where I can articulate to parents, teachers, employers, even doctors about how this condition manifests itself, and I feel fortunate to be able to do that. 

Tourette’s is hard to live with; I’m in a lot of pain. But I now look for the positives every day. 

People with Tourette’s are just like everybody else. There is no cure for this condition and no specific medication for it. But there is a cure for ignorance; and that is education, and from education comes acceptance. That’s all I want for the future and for children growing up with Tourette’s.’

As told to Sarah Ingram

For help and support, go to Tourette’s Action or see the #ItsWhatMakesMeTic campaign. 


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