National Inclusion Week is a time to celebrate diversity, foster inclusion, and raise awareness about various conditions that affect people from all walks of life. One such condition is Tourette’s Syndrome, a neurological disorder characterised by repetitive, involuntary movements and vocalizations known as tics. And a condition that I have. Living with Tourette’s has it’s challenges but it has also been a great teacher in the importance of acceptance and understanding.
Understanding Tourette’s Syndrome
Tourette’s Syndrome is often portrayed in the media as a condition that causes people to involuntarily shout obscenities. However, this is a misrepresentation of the disorder. While some individuals with Tourette’s do have vocal tics that may involve inappropriate language (known as coprolalia), it’s far from the norm. In fact, only a minority of people with Tourette’s experience coprolalia.
Tics come in various forms, including motor tics (involuntary physical movements) and vocal tics (involuntary sounds or words). These tics can range from subtle gestures like blinking or throat clearing to more noticeable actions such as head jerking or humming. Tics often emerge during childhood and may change in frequency and severity over time.
My Personal Journey
My journey differs from the typical story of developing tics in childhood, I was twenty-three when my tics came on. One night I suddenly started making an uncontrollable clicking noise with my mouth. I went to sleep that night hoping it would stop, but when I woke up the next day, I was still making the clicking noise. Throughout that next day I developed more tics including involuntary physical movements and vocal tics, including swearing. I would jerk my head, whistle, roll my eyes, twitch my shoulder repeatedly. It was confusing and overwhelming, I was full of questions, I’d heard of Tourette’s but I didn’t know you could suddenly develop it.
I was off work for the next three months as my tics were too significant for me to work, as time passed, they subsided a little. On occasion these tics sometimes drew curious glances which made me feel self-conscious and isolated, and some peers had a hard time believing that I could suddenly develop tics. Now (six years later) they have become much more manageable, some days I don’t even tic. I have learnt there are specific things that trigger my tics such as loud noises, bright fluorescent lighting, stress, large crowds and I have developed coping strategies to deal with these situations which can help in reducing the amount that I tic.
Developing Tourette’s has taught me some invaluable life lessons. It taught me resilience, empathy, and the importance of self-acceptance. Here are some key takeaways from my journey:
- Self-Acceptance: Embracing my Tourette’s was the first step toward self-acceptance. I learned that I shouldn’t define myself solely by my condition. Tourette’s is just one aspect of who I am, and it doesn’t define my potential.
- Educating Others: I discovered that education was a powerful tool in combating stereotypes and misconceptions about Tourette’s. When I shared information about my condition with friends and family, they became more understanding and supportive.
- Supportive Network: Surrounding myself with a support network of family and friends who accepted me for who I am was crucial. Their encouragement and patience helped me navigate the challenges of living with Tourette’s.
Living with Tourette’s Syndrome has been a journey of self-discovery it has taught me the importance of self-acceptance and the transformative power of inclusion. As we celebrate National Inclusion Week, let’s remember that true inclusivity means embracing people of all abilities, backgrounds, and experiences. When we create an inclusive environment, we foster empathy, build stronger communities, and harness the full potential of diversity.
Please note: my personal story of Tourette’s is not an accurate representation of how Tourette’s affects everyone with the condition. My tics subsided after a period, but this is not the case for everybody with the condition.