Briefly tell us about yourself!
It’s all been about the tics! My name is George and I’m 26 years old. I have a condition called Tourette’s syndrome—misunderstood by many—which gets people talking, heads jerking and eyebrows lifting. Many people think it’s all about the swearing. It’s so much more than that, but the stigma remains.
I currently work as a Visitor Assistant at Kingston Maurward Animal Park and Gardens—a bustling visitor attraction in the heart of Dorset (and Thomas Hardy country to boot). I thoroughly enjoy my job and I try not to let my Tourette’s beat me at work.
How would you described Tourette’s syndrome to someone who’d never heard of it?
Tourette’s syndrome is a neurological condition which causes people to make involuntary sounds and movements called tics. These tics can present themselves in many guises, from a mild eye blink to full-on uncontrollable swearing, and almost everything in between.
When people hear of Tourette’s, many assume you are going to swear. However, this is uncommon: only 10-15% of people have the coprolalia (the clinical term for involuntary swearing and offensive language) aspect of the condition, yet a lot of people think this is the primary symptom of Tourette’s. This is very stigmatising to most people with Tourette’s and this narrow label just makes it even more of a taboo subject.
The misconception people have about Tourette’s is bewildering, and I wonder why the media mainly focuses on the swearing aspect as it's just a tiny percentage of the plethora of tics that one can suffer with. I would like to share my experiences and how I live with the condition daily. I feel that by explaining my Tourette’s in its true form is the best way to help destigmatise the condition.
Do you take medication for your Tourette’s?
I take medication to help control the suppression of the tics. One medication is a dopamine blocker called aripiprazole which is primarily used to treat schizophrenia but also can be effective in treating Tourette’s syndrome. Its aim is to change the levels of chemicals in the brain, thus helping to reduce the tics. The other medication is clonidine, a blood pressure medication which also changes a chemical in the brain which is found to help reduce tics in some people.
In my opinion, the medication that I am taking works very well. While I still have the tics, their frequency has been reduced.
How long have you had Tourette’s?
I was found to have Tourette’s syndrome very late in my life. I was diagnosed when I was 24, which is seen as a very late onset of the condition. Tourette’s syndrome (TS) normally begins in childhood, yet unusually I developed it in my early 20s. It was a very big shock to me, and my family too, as they all knew me before I had any symptoms.
What are the main symptoms of Tourette’s?
The main symptom is vocal tics (including multiple swearing tics—a related condition known as coprolalia) and alongside this, I also have motor tics. It began when I started saying “sex on the beach”—a cocktail name, sure, but it’s not a good idea to shout this out on a cold winter’s day in the UK. It certainly made heads turn! Once this tic appeared, it then became quite frequent and I was not sure what it was or what was going on. Because it was completely isolated and new to me, I didn’t realise it was Tourette’s.
The fact that I was saying it seemed a bit unusual and I thought it would just fade away, but unfortunately it did not. It manifested itself as an overpowering urge to say it out loud and so I tried to ignore it. The best way I can describe it is that it felt like pressure boiling up inside me uncontrollably as I felt another tic approaching. There was an amazing yet bizarre sense of relief when I opened my mouth and shouted out. The ironic fact remained, however, that expressing this tic also made me feel embarrassed and ashamed.
It soon escalated into other tics (at this point I was still unaware it was Tourette’s), developing into multiple swearing tics. “F**k off” was a new one in my growing portfolio of tics. This started at work without any warning: I was walking down a path outside my office and out of nowhere I repeatedly kept saying “f**k off”, accompanied by a strong head jerk to the left. It was very powerful and intense. This really made me wonder what was happening and I kept questioning myself. It carried on in the car driving home from work.
And then came Donald…
Nope, not Donald Duck, much worse than that! My tics developed into the “Donald Trump” tic which I think is quite a rare one and it’s stuck with me for a long time now. This came about when Donald Trump was elected as US President, and the UK media was all over the US political coverage of his election campaign and first 100 days in office. I started off by saying involuntarily ‘Donald Trump is a lovely lady’. I repeated, repeated, and repeated this phrase, sometimes 30 or 40 times a day and without any control. The feeling was powerful and it just came out like a firework exploding. It was mentally exhausting.
This then led to a catalogue of Trump linked tics, including “Donald F**ing Trump”, “www.donaldtrump.com”, and even ‘trumpetydump.com’—all said multiple times per day. For some reason, this American figurehead’s name has stuck like glue, and the sheer variations of the Trump tic feel like some sort of mutating vocal virus strain that can’t be cured. It’s really strange even to me, let alone bystanders. It comes so naturally and automatically. Why it’s “Donald Trump” I’ll never know!
Not a day goes by without “Donald Trump” coming out, probably more frequently than he tweets. It makes me feel embarrassed, but you can see a comical side to it too. I push forward to try and cope with the Trump tics, but every day it’s a struggle. It’s embarrassing when blurting it out, and it makes me feel guilty and ashamed, even if some people find it funny. When I see him on the TV or in a news article it’s an instant trigger and then “Donald” appears. Frankly, I try and avoid him at all costs but it’s difficult as he is in the media all the time. At least I can choose not to follow him on Twitter. If he knew, I’d tell him it’s nothing personal!
How did you get diagnosed?
I went to my GP who advised me that these were involuntary movements or tics. I was then referred to my local hospital to be seen by a neurologist who confirmed it was Tourette’s syndrome. I was gutted, embarrassed and ashamed.
I was born with mild cerebral palsy and have a weak left leg and a left arm that doesn’t work so well, but for the first 24 years of my life I had managed well despite having a noticeable limp. But now I looked really odd and sounded even more peculiar! The GP put me on medication to try and calm the tics, but I knew it was going to be a long road ahead and I’d have to deal with it myself for a long time.
The tics then continued intensely, but despite the guilt I had after everyone was staring, it didn’t stop there! More and more bizarre tics came out in full force. Knowing I had a diagnosis of Tourette’s made me feel more at ease because it was a medical condition which I had no control over, but it was still really hard.
The feeling of letting the tics out with overwhelming passion made me feel ashamed. All I wanted to do was get rid of them, but the more I resisted the more they developed and the stronger they became. I continued swearing uncontrollably, which I hated, and I wanted it to disappear but it wasn’t going away anytime soon. My vocal tics were appalling—swearing almost every other word. It was like my brain was forcing the phrases out of my mouth with haste.
Ironically, I’m not normally the sort of person that swears—I’m very polite and well mannered. It felt like I had done something wrong and was being punished. I became dependent on the tics because they were my release valve to let off the immense pressure inside my head. They were part of me, but it was not my personality. They hijacked my confidence and self-esteem. I felt guilty, ashamed and anxious.
As the “shouting swear words” are quite rare yet very stereotypical, I would like to help develop people’s understanding of the condition. In most cases, Tourette’s takes the form of motor movements and sometimes takes the form of vocal tics, but living with both aspects can be a challenge. I find talking about my condition helps me to feel more comfortable about accepting it. It makes me feel more at ease and helps build up my self-belief. It’s okay to talk; talking helps to clear the mind and helps to develop your ability to feel better about yourself. In my experience, talking to someone you know really does make the difference.
How has your employer helped support you with your condition in the workplace?
Everybody around me has been very supportive. I started as an apprentice working with chainsaws and tractors—not bad for someone with a dodgy left arm and left leg. I was a bit concerned disclosing my new condition to my employer. I now work as a Visitor Assistant at an Animal Park and Gardens. So, dealing with the public was a bit daunting with my vocal tics coming out. I think I have managed it very well and have tried not to let my Tourette’s beat me at work. There is no limit to what I can manage and stop the tics getting in the way. This was a relatively new position, so disclosing that I have Tourette’s was scary. At first, I did not disclose it to the rest of my team but thought it was appropriate to tell my manager about the condition.
He took the time to listen and made me feel at ease. It was hard because I was worried what he might think but thankfully he was very understanding. It took a while to let my team know but I knew that I would have to. It took a couple of months into the job before I disclosed my condition to the rest of the team. We all gathered in a meeting because I was about to disclose this very sensitive subject to my team. I decided that I wanted my boss to explain to everyone and it was all done in a sensitive way. It was the right thing to do and now that everyone knows this has helped a great deal.
Being alongside an amazing, supportive manager who’s been fantastic in helping me deal with the condition in the workplace and a great, open-minded team has been really wonderful. It’s allowed me to develop and build up the confidence to overcome my Tourette’s.
I have a coping strategy in place if my tics appear when dealing with the public, which is 70% of my job. My work colleagues and I have agreed to use code phrases. So, if things are going wrong and I feel I’m about to shout out, I say to them “I spilt the milk”! This means that I could move into the kitchen quickly and they will take over with my existing customers. Then I can go into the staffroom and let the tics all out, loud and clear, and in private. The problem is that if I suppress them all day long, I’m much worse in the evening.
Further to the employment side, I wanted to create a video for the charity Tourettes Action about feeling supported in the workplace. This was to show people that there is no limit on what you can achieve. You can see the video here on the blog.
How has using Echo helped you to manage your Tourette’s?
The Echo app has been a great asset. It allows me to manage my medication with ease. The app is very easy to set up and is very clear. It gives you reminders of when to take your medication and easy to refill and order for postal delivery. I would recommend to anyone who has repeat prescriptions to try Echo. You will not be disappointed.
More information on Tourette's syndrome
Tourette's syndrome is estimated to affect more than 300,000 children and adults in the UK. If you'd like to learn more about the condition, Tourettes Action is a research and support charity that offers is a great resource that provides a wealth of useful information for people with TS. Their services also include a help desk and befriender network.
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