Tourettes - A Parent and Teen Perspective

Posted 6hrs ago
by Lee and Caoimhe

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What began as a delayed write‑up of a muddy challenge became an unexpected journey into what true resilience really looks like.

Lee

I am extremely late in doing this, there's no two ways about it. I did Total Warrior back in 2024, raised some money and wrote a piece to go alongside my experience. My own baggage prevented me from getting to a place where I could write this. I've fought with my suspected undiagnosed AuDHD, physical ailments beyond my control and my own mental health which, not matter how many positive steps I take, always seems to want to fight me. This isn't about me though, this is about someone very special to me.

I put myself through Total Warrior in support of my stepchild who has Tourette's. They're their own kind of Warrior. They're not a Warrior that jumps over fire, carries big logs or sprints to the finish, those things are over when I go over the finish line. My Warrior, Caoimhe, fights everyday with Tourette's, that fight doesn't have a finish line, it's perpetual difficulty, every day, some worse than others. It takes strength that most people don't even know exists. 

My hope as a parent is that more awareness is raised of Tourette's, and the perfect opportunity has just gone by with the event of John Davidson's tics at the BAFTAs. It was a perfect case to raise awareness of the condition, but also a failure of safeguards around someone which caused unnecessary suffering to all involved. 

I've heard so many voices on the matter since then, some supportive and educational, some blatantly ignorant. The voice that matters most to me, is a young person experiencing this every day, a talented artist and writer, with a recently published story in Stranger Sagas - Enter If You Dare. As part of this blog, I could do not better than to hand over to them to give an account of their experiences with Tourette's, and how it affects their life.

Caoimhe

Hey there, it's now been handed over to Caoimhe! As you've read from my stepdad's side, I have Tourette syndrome. I have been showing small symptoms from the very beginning — when I was a small child. However, I suppressed them until I was around twelve or thirteen. 

I had a friend with undiagnosed tics which ultimately set my Tourette's off (it was undiagnosed at the time); from that moment forward, things got quite difficult. CAMHS told me to stop supressing my tics. This lead to my mainstream secondary school to keep sending me home for around three days straight. 

I was bullied a lot even before I stopped suppressing but it only got worse after. Needless to say, I only managed to survive that school until very late year 9, when they asked me to leave due to my undiagnosed co-morbitities and my Tourette's throwing objects like pens and pencils. 

Despite being diagnosed in late 2021 and being placed on medication to help, this still happened all in late 2022. 

From that day forward, I was out of education fully until the school placed me on home and hospital education almost half a year later. 

My Tourette's did settle down during this time as the dose of my medication was gradually being upped, and I wasn't under as much pressure as before. 

I did struggle a lot with my mental health during 2023 due to how isolated I was. However, my life only got better over the years. 

In early 2024, I got accepted into an independent school specialised in disabilities. They helped me accept myself for who I truly am — disabilities and all. 

Fast forward to now — I'm in a mainstream college and I'm healing from all of the bullying; regardless of my Tourette's causing challenges, I get through.

My Tourette's does affect my daily life still. It affects simple things like writing and speaking. Some days it affects more than others and as my stepdad said in the beginning, it takes a lot of strength (mentally and physically) that many people doesn't know that it exists. 

There's no room to give up with having Tourette syndrome. It's something I've learnt. Another thing I've learnt is 'no matter what, stay resilient and adapt to what happens that day'. The reason I say that is because having Tourette's  is like the ocean. Sometimes the waves crash into each other; other times it's quiet. You never know what the next day or month is going to hold with having Tourette's. 

It is difficult every single day but what matters is how I live and accept it. Despite everything my Tourette's has given me (e.g bruises, sore and tight muscles), the most important thing to remember is to accept it and adapt accordingly. 

Over the years there have been some times where I wanted to give up but I didn't. I know that takes incredible strength. 

Before I stop typing, I have a message to those who are reading this:

No matter what you do or who you are, don’t give up. I know how hard it is living and having someone you care with Tourette's. It's difficult, I know, but times do get better! Look up and start living. It's a difficult thing to do, but I know whoever you are, you can do it! I believe in you.

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