About My Tourette Syndrome

Posted Wed 13th Jul 2022 at 10:23
by Ben Lynch-Wilson

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10 year old Ben wrote a piece about his TS for a school assignment during TS Awareness Month - his teacher was impressed and so were we!

By Ben Lynch-Wilson

Tourette Syndrome is a neurological condition. This means that it is a 'brain condition' which cannot be seen unless I am having involuntary movements. These movements are called 'Tics'. They can have many different effects on a person, and each person with Tourette Syndrome may present differently. Tics can prevent me learning at the same speed as someone else of the same age, due to what the Tics are.

My Tics vary and sometimes I don’t have any.

Some of my most common tics are an eye roll, repetitive blinking or closing my eyes tight for a few seconds at a time. So, if I am reading, sometimes, I must re-read, over and over again, as I can lose my place quite easily and I can struggle to take in what I have read, as the tics interrupt me. This is because I am trying to concentrate on not ticcing but this can be really difficult. I also struggle sleeping as my tics keep me awake, they can be so annoying even for me.

I have been told before, the way to describe a tic could be as simple as this,

Imagine needing to blink, but you are trying your best not to, eventually you must. whether this be within seconds or a minute or so, this is a similar experience with the tics for me, but over and over again.

I also have a tic where I make a squeaking noise, and this bothers me more than the eyes, as you can hear it and you might just think I am being annoying, but I promise you I am not.

I ended up at the hospital a few times last summer because I kept punching myself over and over, and I would also stop dead when walking and start stamping the ground or punching the walls. My Mum got really worried in case I hurt myself as this happened when crossing the road also, which could have made me get run over. I could have also injured myself quite badly but punching objects that really shouldn’t be punched.

When I don’t have Tics, Tourette Syndrome can show in other ways, for example I get really, really angry and frustrated. I shout at everyone, and I can be really mean, I don’t mean what I say but I just have no control.

There is another part of Tourette syndrome, which thankfully, I don’t have. This is called 'coprolalia'. This is what everyone thinks that Tourette Syndrome is, which it isn't. It is swearing repeatedly or shouting out obscene words. There is also another one called 'echolalia' which is when you repeat what others are saying - I do get this quote a lot, my mum says it's like having a parrot. We always try and laugh about my Tourette's, as there are some people in a worse position than me, with other conditions, but sometimes it can be really hard.

I try really hard when I am at school as I don’t want to get into any trouble, but when I get home, I take it all out on my family, and it is usually my little brother I upset the most, because he doesn’t really understand. My Mum, Dad and Gramp used to get upset too, they still do sometimes, but they understand why I am being that way, and we make space between us. I will often get sent to my room to calm down, which really helps, or if I am shouting at my mum, she will tell me 'We are no longer having this conversation' and she will walk away. She has a way of ignoring me even when I am mean to her.

I find it hard to 'take a joke' as I don’t see the world the same way you do maybe. But what makes that more difficult is when I am picked on or called names, because 'I just don’t get it'. What you find funny I might not and what you understand I might not. This can be normal for everyone, it doesn’t make me stupid or weird, it just means I don’t find it funny. My world is different to yours, and so is my brain, but do you know what........

I REALLY LIKE IT! And to me that is what matters. There is not a cure for Tourette's and currently no help from the doctors we just have to manage it the best we can. To be honest, I don’t want a cure as I like having it. It makes me different to you, and it is good to be different, if we were all the same wouldn’t life be boring? I am not good at team sports, but I like to join in and try, but I am good at gaming, you might not be, but do you still try? Do you like it when someone says 'oh you are so rubbish' no matter what you say I bet you don’t, and this is how I feel. I do not need a cure; I do not want one. But what I would like...... or even love! Is acceptance. I am me, I am Ben, I cannot change what I have, like you can dye your hair or choose your clothes, and I do not want to.

We say at home “You might not like me, but I do, and if you don’t like that’s not my problem, that’s yours.” I am not Tourette Syndrome, I am a 10-year-old who has had this since at least 2016, that’s 6 years, and in 6 years

it has been hard, and it may get harder, but I have learnt things and experienced things that you may never get to do. That makes me Lucky ????

1st May to the 31st May is Mental Health Awareness Month.

May 15th-June 15th is Tourette’s Awareness Month.

This is why I thought it would be good to share this with you as with Tourette Syndrome sometimes we have bad days which can affect our thoughts and feelings, which can affect our mental health. So, before you judge someone, just think to yourself, can they help what they are doing and if you are not sure just ask. We would rather you asked us than just assumed we were being annoying and then tell us to be quiet or shut up, as this can make us sad and angry at the same time. I can mean to people quite a lot, but only when I have had enough of people picking on me, or being mean, and then I get so angry I cannot help it.

Just be kind, and if you cannot be kind say nothing. You never know how the person you are being mean to feels when they go home, and you never know, one day you might be like them.

Tourette Syndrome is a disability, but instead of it being physical it is neurological. It does stop me doing some things as I get extremely nervous or worried, but I don’t think of it as a disability, I think of it as a different ability, and if everyone thought the same about disabilities, adults too, I think everyone would be happier.

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