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An insider's guide to Tourette's syndrome (October 2012)

Article from the Guardian online, Sunday 14 October 2012. "Jessica Thom squeaks, swears, beats her chest and laughs. Here she describes living with her complex and mystifying condition."

Learning the way I tic

No one really knows what causes Tourette's syndrome, but it's believed to be an inherited genetic condition involving an imbalance in the function of the brain's neurotransmitters. It's thought that between 200,000 and 300,000 people in the UK have Tourette's to one degree or another. When I say people, it's mainly men – about four times more men than women, in fact. So that means I really stand out. All my tics are involuntary and I tic hundreds of times a day, so I'm rarely still or quiet.

For the last five years I've kept track of my regular tics, the ones I say or do over and over again (for months or even years on end). Until now, though, I've never paid much attention to the tics I don't repeat all the time. These occur every day, and I might only say them once or a handful of times. Some can be linked to or triggered by specific situations or sounds, but the majority are random. Recently I've started to record these one-off tics. Below is today's selection: "Careless whisper costs £1"; "Long division killed your soul"; "Jim Davidson killed your soul"; "Les Dennis or Margaret Thatcher? Choose".

As you can see, it's fairly random stuff. I can state with confidence that I wasn't consciously thinking about any of these things when I said them. Some people describe Tourette's as saying what you're thinking, but for me this doesn't ring true, and it oversimplifies something I've always found complex and mystifying.

This doesn't mean my tics are never triggered by things I've seen, thought or heard, because sometimes they are – but I still wouldn't describe it as saying what I'm thinking. The vast majority of my tics tend not to be triggered by events or my surroundings at all, and a lot of them are completely inoffensive. Some of my tics can be pretty complex: "Alexa Chung died. She stubbed her toe on the edge of the world"; "Take a picture of your mum's best friend wintering in Lebanon, naked in a bath".

What I struggle to get my head around is that while my tics aren't a reflection of what I'm thinking, they clearly draw on things I know, or that I'm aware of, or have thought about at some point in my life. All these unconnected things get jumbled around and spat out again. They're often random but they're rarely incoherent.

An unusual occupation

Some people are surprised when they find out I have a job. My tics are very noticeable, so people sometimes assume I'm not able to work or that I'm not employable.

I work for an organisation in south London that runs play projects for children and young people. I've worked with children for years.

You might wonder how anyone who swears involuntarily can possibly work with children. The key issue with all swearing is the intention behind it, but my swearing is completely involuntary and when I tic "fuck" it has no more meaning than when I tic "biscuit". I reckon children who are old enough to recognise a swear word or ask what it means are also old enough to understand that I've not chosen to swear, and that it isn't OK for them to do it, particularly if it's aimed at someone else.

There are people who would argue that exposing children to bad language is not acceptable because it might confuse them or encourage them to repeat what they hear. I completely disagree and argue that it's entirely appropriate for children to be in environments where difference is accepted, understood and supported, even if that means putting up with the odd expletive.

It's true that my tics have increased in intensity since I started working with children, and had they been as noticeable when I started I think it would've been much harder for me to develop the confidence and skills needed to do this work. I've been incredibly well supported, and my colleagues have always shared the humour Tourette's can bring.

"Her brain makes her do it"

I'm going to share 30 minutes of my day through the reactions I've encountered along the way.

3pm I popped to the shops during my lunch break to pick up some plasters to protect my knuckles from the wear and tear they're currently suffering from all my chest banging. While I was browsing in the chemist, I squawked loudly. There were two young women next to me and one asked the other: "Was that you?" I looked round at her and said: "No, it was me – I have Tourette's." She smiled and said: "So has she", nodding in the direction of her friend. This wasn't the response I was expecting. We chatted for a minute before getting on with our shopping.

3.15pm When I was walking back to work I saw a middle-aged man coming towards me. I squeaked once as I got near him and when we drew level he shouted a similar noise to the one I'd just made, quite threateningly. I turned and asked: "Why did you do that?" He responded aggressively: "I was copying you." I told him I had Tourette's and that the noise wasn't directed at him. "I don't care; you can fuck off," he said. He walked off shouting offensive things at me all the way down the street. I got back to work feeling shaken and angry.

3.30pm After I'd had a chat with my colleagues about what had happened, I spent some time with the children I work with who were playing on the computer and dashing in and out of the building. While I was putting the plasters on my knuckles a few of the younger boys asked me what I was doing. I said I was protecting the skin on my hand because it was getting sore from where I banged my chest. One of the boys asked: "Why do you bang your chest?" The youngest, whom I'd met for the first time a couple of days before, answered for me: "Her brain makes her do it – it controls her arm." He paused briefly, and added: "And her mouth."

Keeping secrets is tough

King Russell's been going out with my sister since they were both teenagers. "King Russell" is one of many Russell-related tics. He fully embraces his tic-name and encourages its use at every opportunity.

It's two weeks until King Russell's birthday. I bought his present – an expensive but brilliant Star Wars cap – about two months ago. He loves Star Wars and has lots of clothing featuring characters from the films. A particular favourite of his is a stormtrooper T-shirt he wears all the time. Every time he's worn it recently I've ticced: "I've bought you a…" Up until now I've been able to stop myself saying anything more. Today I completed the sentence with : "…hat". I'm not sure how I'm going to maintain the surprise until his birthday. Fortunately I also ticced: "I've bought you a helicopter"; "I've bought you a standing ovation for Christmas." And: "I've bought you an ovarian cyst."

Hopefully he'll have no idea which one's the real gift.

This is a hold-up

I went to the post office this morning and as I approached the counter I shouted: "Hands up!" Fortunately I'm a regular customer, so this didn't result in any panic buttons being pressed.

Getting to know people in shops and cafés I visit regularly is very important to me. It makes me feel safe in the knowledge that they know who I am, and why I'm talking and moving in the way I do.

I reckon that, for a lot of people with Tourette's, how happy and secure they feel where they live extends beyond immediate friends and family into the wider local community.

So this morning I was able to post my letter without fear of arrest, and that feels very good indeed.

Don't get mad, get kebabs

Leftwing Idiot's a close friend and neighbour I've known for 10 long years. "Leftwing idiot" is something I used to say as a tic that seemed to be triggered by him. Although he's not usually an idiot, he is prone to the occasional leftwing rant.

It's been a bad day, not specifically because of Tourette's but just one of those days that doesn't feel like it's going right. Because I felt moody I was particularly unpleasant to Leftwing Idiot, and this led to a row. Our argument, like others we've had, was complicated by my need for help with my tics. I felt furious, but at the same time I needed him to hold my hands to stop me thumping myself.

Later we headed to the kebab shop to get something to eat. There was a police car outside and we could see two officers ordering dinner. Leftwing Idiot took a deep breath as he opened the door and said: "This is going to be interesting." Police always make my tics worse.

I ordered our food and we sat down to wait. It only took a minute for my tics to catch their attention. The cops looked shocked and stared disapprovingly. In addition to my normal repertoire, their presence had triggered a whole farmyard full of pig noises that I was trying desperately to stifle.

After 10 uncomfortable minutes they left with their food. I'd like to have heard what they said on the way back to the car.

Can I see your ID?

Tonight I was out in town with Ruth and Catherine, who both have Tourette's. As soon as we got to the pub we were ID'd – not, sadly, to prove our ages, but to prove we had Tourette's. The bar manager approached us while we were waiting to be served and stood in front of us, staring. Eventually he managed to say: "I need to ask…" but stumbled over his words, giggling nervously before finally getting it out: "I have to ask, have you got a real condition or are you taking the piss?"

We explained we have Tourette's and he replied: "I'm sorry, but I have to think of my other customers. Do you have proof?" Fortunately we do all have ID cards that confirm we have Tourette's. He agreed to serve us but said: "You need to keep it down." We explained that it doesn't really work like that, but he just repeated: "You're going to offend my customers." We pointed out that we were his customers and that he was offending us.

My glittering CV

The radio was on in the cab on the way to work this morning. It's GCSE results day and young people were being interviewed about how well they'd done. As usual the presenter was going on about how much easier the exams are these days. People were phoning in and offering much the same opinions. Several hours later I ticced my own results:

"I have a GCSE in lungs."

"I have 14 GCSEs in crime."

"I have a GCSE in addiction to crisps."

"I have an A* in botulism."

"I have a GCSE in mums."

"I don't have a GCSE in Christmas."

We'll just have to see how far I get with these credentials.

Extracted from Welcome to Biscuit Land by Jessica Thom (Souvenir Press, £12). To order a copy for £9.60 with free UK p&p go to or call 0330 333 6846

"People need to know that TS is involuntary. We don't need pity, but some will always need help, support and understanding"