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Posted 19 May 2023

Tourette Syndrome Awareness Month: Reflections with Paul Stevenson

Being 60 years old and having Tourette Syndrome is quite a journey. It is remarkable how age can make me reflect on my experiences and realise how long I’ve been living with this condition. Tourette Syndrome has been a constant companion throughout my life, but it took me a while to even realise I had it. #MyTourettes co-occurs with ADHD, OCD, and sensory processing issues, adding layers of complexity to my daily challenges.

As a young person, a teenager, a young adult, and even into my adult years, I had to navigate these conditions without fully understanding them. It was not until I reached the age of 46, after experiencing some trauma, that I finally received a diagnosis. It was like a light switch had been turned on, providing me with a newfound understanding and explanation for my experiences. It marked the beginning of a new chapter in my life.

However, this onset brought forth an explosion of tics, making me feel ridiculed by the condition. I retreated and locked myself away for weeks on end, too embarrassed to face the outside world. Unfortunately, the severity of my motor tics  led to numerous injuries, which have now become secondary disabilities. I struggled to find a way to manage the condition effectively.

When you receive a diagnosis, the doctor often leaves you with the understanding that you have Tourette Syndrome and then sends you on your way to navigate life on your own. But I believe it would be more beneficial if they provided a comprehensive approach.

They should offer resources like pamphlets with contact information for Tourette’s associations, recommending reaching out for support from others who live with the condition. Additionally, they should encourage studying Tourette’s, understanding how it personally manifests and finding ways to work alongside it.

Photo of Paul Stevenson

At some point, I reached a breaking point. I wanted to go out into the world, refusing to let my condition define me. My wife bought me a camera since I enjoyed doing artwork, but my tics and essential tremors made it impossible to paint or draw. However, I discovered that being creative with a camera provided respite from my tics. In those moments, the tics faded into the background, and I found solace in the creative process. It was a brilliant discovery that inspired me to seek ways to exist in society and find positives despite my challenges.

One of the positives I found as an adult living with Tourette Syndrome was the ability to articulate my experiences to parents, teachers, and others in the workplace. It bothered me greatly that I could not find employment after having worked throughout my life. Nevertheless, I realised that I was still a valuable member of society, and I refused to be written off. I decided to share my story and raise awareness. For seven years, I volunteered extensively, self-funding talks in universities and schools, with the aim of making a difference. I did not want anyone else to endure the prejudice and punishment I faced as a young person.

I became involved with organizations like Tourette Scotland and Tourette’s Action. I forged alliances with Tourette associations abroad, such as Tourette Italia and Tourette Roma Onlus. I had the privilege of being part of a documentary called “Taboo,” with John Davidson and Stuart Colquhoun (Chopa). Unfortunately, Stuart is no longer with us. The documentary, titled “Three Men with Tourettes Go on Holiday,” went viral. While some viewed it as comedic, it contained valuable information and required significant effort to create. However, important details often end up on the cutting room floor, as documentaries are edited to appear exciting and sensationalised. We strive to spread positive awareness, but it can be challenging at times.

The viral nature of the documentary led to an influx of messages, particularly from Italy after it was translated. Initially, people laughed due to translation issues, but despite the initial laughter, we managed to turn things around and deliver a positive message to those who watched the documentary. We explained that while humour could be found in certain aspects, the reality of living with Tourette Syndrome is much deeper and more complex. Encouraged by this response, I continued my efforts to raise awareness, volunteering and becoming a trustee for Tourette Scotland and later Tourette’s Action.

My journey took another significant turn with the making of the documentary “Employable Me.” It was during this process that I received a positive assessment that highlighted my neurodivergent strengths. It was a revelation. While I was well aware of my challenges, this assessment allowed me to fully grasp the potential that lay within me. Nancy Doyle, a wonderful individual I had the pleasure of working with in the employable me documentary and who is the founder of Genius Within, guided me towards realising my potential as a public speaker rather than solely focusing on photography.

The irony of a public speaker with Tourette Syndrome did cross my mind, but I soon discovered that it worked remarkably well. Embracing this new direction, I became a Tourette’s Ambassador for Genius Within, engaging in various activities such as research work at Nottingham University and collaborating with Tourette’s Action on creating animations. I even have the incredible opportunity to be on a panel TTag discussing Tourette Syndrome at the EESTS conference in Brussels.

Never in my wildest dreams did I imagine I could be involved in such impactful work. But carrying the weight of negative labels from my childhood had limited my belief in my own potential. As part of my role at Genius Within, I also became an advisor for Tourette’s Action, joining a panel of individuals who, like me, live with Tourette Syndrome. This user-friendly advisor panel ensures that our voices and experiences are heard, with the hope of making a positive difference in the world.

Reflecting on my journey, I am grateful for the opportunity to share my story and advocate for awareness and understanding of Tourette Syndrome. It has been a long road, filled with challenges and triumphs, but I am determined to continue making a difference. Age has given me the perspective to appreciate how far I have come, and I am dedicated to helping others avoid the hardships I faced as a young person.

Thank you for taking the time to listen to my journey. It is my hope that by sharing my experiences, I can inspire others to embrace their strengths, find their voice, and make the world a more inclusive and accepting place. Take care, and goodbye.