Adult TICfest 2024

Posted Mon 9th Sep 2024 at 12:52
by Saskia Muller

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"Being in a place full of people like me was truly remarkable and felt like coming home. It was a life-altering experience that I hope everyone who tics gets to experience some day".

Despite having tics since I was about 7, it wasn’t until 2023 that I was first introduced to the possibility that I might have Tourette Syndrome and realised there was an entire community centred around the condition. This discovery was a pivotal moment for me, as I had spent years feeling isolated, with no one to relate to and no understanding of what I was going through.

Before coming to adult TICfest 2024, I struggled alone, never having met another person with tics, let alone someone with Tourette's. This loneliness took a toll on my mental health, leaving me in a constant battle with myself. My understanding of the condition was limited to stereotypes and misconceptions, which only deepened my confusion and frustration.

Everything changed when I came across a post on Tourettes Action's Instagram page announcing the opening of an adult TICfest in 2024. The thought of being part of something larger, of connecting with others who understood what I was going through, filled me with a sense of hope and excitement. I knew this was something I had to be part of, but my excitement was tempered by anxiety. I had so many questions like "Will I make friends?" "Will participating make my tics worse?" "I have autism and seizures, as well as stomach issues. Will I be too much?" Without anyone to turn to for answers, these concerns began to weigh on me. I was very anxious about the whole food situation too. It was all catered by staff at the venue and I knew I wouldn't enjoy any of it. Thankfully, Tourette's Action was incredibly supportive, addressing all my worries and ensuring that the weekend was carefully planned to make everyone feel comfortable. My seizures weren't too much, I could bring my own food, and the majority of the people who attended also had autism and seizures.

Looking back now, I can say without hesitation that the weekend was truly life-altering. It was one of the most remarkable experiences I have ever had. Being in a place surrounded by people just like me—people who understood the challenges of living with Tourette's—was nothing short of incredible. For the first time, I felt like I was truly at home. The sense of belonging was overwhelming, and it was a feeling I had never experienced before.

The weekend was filled with activities that were both exciting and new to me. We had the chance to try kayaking, canoeing, climbing, archery, ziplining, abseiling, a leap of faith, and more. I tried to do as much as I could, but it's always difficult trying to balance pushing yourself out of your comfort zone and pushing your body further than it can. While the activities themselves were thrilling, what made them even more special was sharing them with others who understood me on a level that few others could. We weren't just participating in activities; we were building connections and the free time we had allowed us to bond even more deeply with one another. Everybody supported and encouraged one another, and the instructors were all supportive and patient.

Beyond the activities, what stood out the most was how welcoming and friendly everyone was. I arrived at the event feeling nervous and unsure, but that quickly changed.

As I entered the building, I was welcomed by the lovely volunteers and the event organiser, Emma. They introduced themselves and made me feel instantly at ease. Their kindness gave me the confidence I needed to open up in this new environment. Emma spoke to me with a warmth that made me feel truly seen. She introduced me to others my age, including my roommates for the weekend, which helped me feel even more comfortable.

As I reflect on that weekend, I am filled with a deep sense of gratitude and a new perspective of myself and my tics. The experience gave me not only a greater understanding of the condition but also a profound sense of personal growth. I left feeling so much more confident and proud. I have never felt so liberated and I hate to say it, 'normal.' This event had a transformative impact on my life—mentally, emotionally, and physically.

I owe an enormous debt of gratitude to Tourette's Action for everything they have done and continue to do for the community. The difference these events make is beyond words, and I cannot express enough how thankful I am for the staff and volunteers who worked tirelessly to create such a supportive and nurturing environment. Being in a place full of people like me was truly remarkable and felt like coming home. It was a life-altering experience that I hope everyone who tics gets to experience some day.

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