How TICfest changed my life

Posted Wed 15th Nov 2023 at 09:41
by River-James Whybrow

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Read this wonderful blog from our brand new TS Champion, River

My name is River-James, I’m 16, and I went to TICfest at the end of September 2023.

I was diagnosed with Tourette syndrome when I was 13 years old, and to be honest, I hated it. I had previously been bullied because of my autism and I didn’t want to accept that Tourette’s made me different. This was in the middle of the Covid-19 pandemic, and my mental health was already suffering. Coping with my tics just made this worse.

I heard about Tourettes Action when I was 11, when my therapist sent me advice on coping with tics from their website. At this point, I was starting to wonder if I had Tourette’s, since first noticing my tics at the age of 4. I found the information on their website incredibly helpful, both before and after my diagnosis.

In the beginning of 2021, I saw on their website and social media about an event they do called TICfest, where lots of families of people with TS get together for a weekend. I instantly knew this was something I had to go to. I’d never met anyone with Tourette’s before, and I felt so alone. This sounded like something that could help me so much.

I told my mum about it, and watched a video about it on the TA YouTube account. She booked tickets and we were so excited to go, including my younger sister, who was unfortunately at the other end of a lot of my violent tics. However, this didn’t go ahead. My mental health had declined so much that I ended up being admitted to hospital to keep me safe. This exact same thing happened again in 2022; my mum booked the tickets but once again I landed in hospital for my mental health.

However, I was discharged from hospital in November 2022, and this time I was going to stay out. I worked, and am still working, very hard to be able to stay safe in the community. Not going to lie, my tics made this harder, but I kept going. This meant that in 2023, I was finally able to go to TICfest.

I was excited, but I didn’t quite know how much of an impact it would have on me and my thoughts about the future.

I arrived at TICfest and I met Emma, Zach, Ruby, and Grace. I remember the first thing Emma said to me was “you don’t need to apologise for your tics.” This in itself made me instantly feel comfortable. I was so used to saying sorry after every tic, whether vocal or motor, loud or quiet, harmful or not. But I didn’t need to here. Everyone just understood. I wasn’t stared at, laughed at or pointed at. I wasn’t seen as the boy with Tourette’s, I was just River, with no strings attached. The freedom this gave me was immense.

The weekend was packed with activities, and I pushed myself to face fears and limits I had brought upon myself. We did climbing, snow tubing, team building (which was insanely funny), crate stacking, and ziplining. The hardest thing for me was tunnelling. I hate the dark, small spaces, and spiders. I encountered all of these in this activity. I wasn’t going to do it, I really wasn’t. However somehow Ruby convinced me to give it a try, but I was only going to do it if she did. We gave it a good go, but after about 10 minutes I was done. I’m proud of myself for trying, because I honestly wasn’t going to. And I’m very thankful for Ruby doing it with me.

Sunday afternoon came and I was in tears. I was sobbing because I did not want to leave for any reason. It was the first place I’d been where I could be myself, where nobody judged me, and where my tics were embraced. I made friends who truly understood me, and met people who have proved to me that you can have a future with Tourette’s. It doesn’t have to hold you back.

I will be eternally grateful to Emma for being amazing all the time. She was kind, caring and funny. She made the whole weekend much better and she still helps me now, especially with me having just become a TS Champion for 2024.

I will also be eternally grateful to Zach, Ruby and Grace, who have showed me that Tourette’s doesn’t have to hold you back. Ruby and Grace made me laugh, they gave me some fantastic advice about living with Tourette’s and helped me face my fears. Zach was incredible. He was at the receiving end of a lot of my vocal tics, and a couple of motor ones, and he wasn’t bothered. He showed me you can be successful with Tourette’s and FND. I will never be able to thank them all enough.

TICfest changed my life for the better. Tourette’s is not going to rule my life. It won’t hold power over me. I will show it that I am in charge, not the other way round. I am proud to have Tourette’s.

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