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Living with Tourette syndrome
Posted Mon 2nd Jun 2025 at 09:44
by Mark Freeman-Ferguson
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Challenging Misconceptions and Improving Understanding
I was around 10 years of age when I started flicking the hair from my face. This progressed to other unusual movements and sounds, each growing in complexity as time went on. I always felt that this was something I should be able to control and even stop and was a failure for not being able to do so, which really affected my self-esteem. Tourette syndrome (TS) was not something I’d ever heard of and all of this happened before the invention of the Internet (yes, I am that old!) ????.
Many years later, after I was diagnosed with TS at age 40 years, my mum told me she often suspected that I had TS, but each time she went to my GP he said it wasn’t TS and was just a habit that I would grow out of. When an adult, my own experiences of asking various GPs for help left me facing the same ignorance. On my final visit before being diagnosed, I refused to leave the surgery until my GP agreed to refer me to the local Neurology Department for assessment. At that appointment, the neurologist let me read the referral letter he had received. He was concerned that the GP had stated I had “health anxieties” and was sure I did not have TS as he had never seen me tic, nor had another GP in the practice. The neurologist said he had already diagnosed me within the first 5 minutes of our appointment after hearing my history. I made a formal complaint to my GP practice and during a meeting with them, the GP apologised for his lack of knowledge and advised that he had read an article about TS to increase his understanding of the condition.
As a children’s nurse, this started me thinking about nurses’ knowledge of TS when caring for children and young people. This reminded me of an instance when I was working on ward a few days before I left for a new job in a different hospital. There was a young lad admitted who had various tics and I was speaking with a colleague about him and telling her that my tics were really bad and I wish I could control them. Bearing in mind, this was a nurse with over 20 years of experience. She said “why don’t you just stop doing it?!” I remember feeling angry that an experienced nurse would say this and sarcastically thought “of course, that’s what I should do… just stop ticcing!! Why didn’t I think of that?? ????”. If she was saying this to a colleague, what was she and other nurses saying to children with various tics? I heard some of the comments staff were saying about this young lad and most were not complimentary. It saddened me.
When I moved into education and began teaching student nurses, I felt it was the prime opportunity to ensure that TS and other Neurodivergent conditions were included in the curriculum. I wanted to ensure all children’s nurses were aware of differences and were able to support children and young people with those differences with compassion, understanding and free from judgement. As time progressed, I realised that my education of student nurses only provided education for the nurses of the future, not the current nurse population already in practice. Consequently, I decided to write an educational article on the condition. I wanted to explain what TS was, not from a purely medical perspective, but what it can be like to live with it, using examples that hopefully make it easier for nurses to understand and empathise with children and young people living with the condition. I contacted the editor for the RCN journal “Nursing Children and Young People” who advised that she would be delighted to receive an article on TS as she wasn’t aware of a similar article being previously published in the journal. Given this is the main nursing journal for nursing children and young people in the UK, I felt it essential to publish there. So, I set to work.
It took a few months to write and be reviewed by peers before being ready to publish. The article gives a brief explanation of TS, the diagnoses, signs and symptoms and other co-existing conditions. It talks about the various impacts of the condition- bullying, mental health, pain, whilst outlining some management options. I used the iceberg example to show the complexity of the condition and that it’s not just about tics. I also used Time Out sections so the nurses (and anyone else reading it) can have a more practical understanding of the condition. I used an example of having an itch in the middle of your back and trying to scratch it only for it to return almost immediately and other people noticing your unusual movements. I wanted to talk about what happens when we try to control the tics, which personally causes me lots of tension in my shoulders and neck resulting in significant pain and discomfort.
My negative experiences of others’ lack of knowledge happened 20-40 years ago and I’m pleased to say that paediatric nurse education has evolved and should be including TS as part of the curriculum, meaning my experiences should be less common. The general public know more widely about TS now than when I was a teenager and I hope people are more understanding and accepting of our differences. That said, there is still significant public and healthcare professional misunderstanding of the condition. I hope my article goes some way to educating nurses, other healthcare staff and the general public about TS and it’s impact, thereby ensuring those of us who live with it can do so with no added stressors, judgment or criticism. I also hope that we, as a community, have the strength and knowledge to educate others about the condition, hence TS Awareness month being run by Tourettes Action and Tourette’s Scotland.
If you are interested in reading the article, it is available at the links below. The first is free to access, the second is the professional journal article. Please share widely as the more people who know about the condition, the better care and support we will all receive.
ResearchGate
Tourette's Syndrome- Challenging Misconceptions and Improving Understanding
RCN Nursing Children and Young People
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