Living With Tourette’s

Tourette's

Not a word you hear often, and when you do it’s usually an excuse for excessive swearing, although it’s not all about that. Coprolalia (swearing tics) affects around 1 in 10 people who have Tourette’s, and even though this is something I struggle with, this is not where it all began.
•
Tourette’s is not my name. I am not the girl that sits on the bus making these noises because I find them ‘funny’. I am Caitlin. I’m 18 years old and I LOVE CHOCOLATE (although being dairy free really doesn’t help with this). I love nature and I find pleasure in the little things in the world. I go to Church every week and I volunteer as much of my time as I can. I’m quite normal really. I’m more than what people judge me as. I’m me.
•
Life as an 18-year-old girl is tough, regardless of what’s going on inside my brain. I don’t want this to be a blog about how hard life is or to complain about my life, but in order to achieve an understanding you must first know the hardship of living with Tourette’s. So, if you’ve somehow found yourself here, take time to read my story and see the truth about living with Tourette’s. I can’t promise it to be an uplifting or inspirational journey, but it will definitely be A JOURNEY, that is for sure.
•
Now contrary to belief, Tourette’s IS NOT a mental health disorder. You could get it from an infection, genetically and a range of other ways. I bet that’s news to you. It was news to me too. Finding out I have Tourette’s was not something that I found hard to believe. I’ve had different tics all my life, so being told I have Tourette’s, didn’t really come as a shock to me. However, what I soon realised was that it is LIFE- CHANGING.
•
Looking back to when I was a child, it is clearly obvious that I had Tourette’s. After going to the doctors and being told my tics were just ‘habits’ that I would ‘grow out of’, I was made to believe that what I was doing was wrong. However, following the advice from the doctor, I learnt how to suppress the tics and although a lot of the tics remained, I was able to let them out discretely. However, if you are reading this and suffer from Tourette’s yourself, PLEASE DO NOT SURPRESS YOUR TICS. Don’t worry about what people around you think, don’t worry if you’re being too loud, the tics do not define who you are!!!
•
I am guilty of holding in my tics. Throughout, my whole days at college, I hold the vocal ones in. Holding them in is painful, it makes you lose your concentration and it is distracting. The only way I can describe the pain is that it feels like somebody is wrapping up a tight ball of wool in your chest. For me, the pain can only be relieved once ALL of my tics have been released. This usually means that after a period of holding them in, I go home and have what is called a ‘tic attack’. Yes, you read that correctly the tics release so fast, I have no room to speak. During an attack, I feel completely out of control. My sister also has tourette’s, so our tics bounce off each other. This means that as we trigger each other, we both cause eachother to tic more. This may sound very funny, but in reality, it is painful and very scary. That feeling of not being in control is frightening and you don’t know when the tic attack will end. However, when it does end, the tics don’t stop, for me, they just decrease, which means that you’re still having to go through your day whilst the involuntary tics try and take over. 
•
I hope you’ve been able to learn a bit more about Tourette’s and the reality of living with it. Throughout these blogs I hope to be able to educate more of society, about the reality of having Tourette’s syndrome. 

Comments

  1. LinnyJanuary 2, 2020 at 7:19 AM

    Thank you Caitlin for describing your day. My 11 year old grandson has Tourettes. It's good to find out how he might be feeling.

    ReplyDelete
  2. Lindy5010January 2, 2020 at 10:22 AM

    Thank you for writing this. My son has tic disorder / Tourette’s, Your description of what it feels like to suppress tics is very helpful.

    ReplyDelete
  3. nettyJanuary 2, 2020 at 11:23 AM

    hi my name is Jeanette netty for short and I have touretts. I am 63, been suffering with tics since I was 8 years old. started with tutting all the time which my dad hated then started throwing my head back then the noises I made like clearing my throat often. over the years I bang my teeth together, shake my arms and legs. I quint alot and pull faces. I take sulphide for it which doesn t seem to work very well I was taking haloperidol but without luck. I have terrible arthritis in various parts of my body through all the tics I have accumulated over the years. they say touretts gets better the older you get but I m yet to see that. I take 4 lots of painkillers a day because of the pain I m in. my back is the worst. this is all due to having touretts for 55 years.
    I wish there was a magic pill for all us sufferers. there may be one day you never know.
    thankyou so much sweetheart for writing your story. I know exactly what you are going through. Good luck my darling. I just hope they have a cure for you and your sister in your lifetime.
    Netty x

    ReplyDelete
  4. RJanuary 8, 2020 at 2:12 PM

    you should be really proud of yourself, it's not easy to talk so openly about things like this, keep it up ❤️

    ReplyDelete
  5. UnknownJanuary 29, 2020 at 9:52 AM

    So sorry to hear about your struggles Caitlin I had no idea about you both having this!! I think what you are doing with your blog is very brave and inspiring for others to find info on this as most people...including me......know very little about it!! Lots of love from me and good luck for your exams hope all goes really well for you!! <3

    ReplyDelete

Post a Comment

Popular posts from this blog

"Puppet on a String" - A poem about Tourette Syndrome by Caitlin Lord

"Puppet on a String" A poem about Tourette Syndrome by Caitlin Lord I have Tourette's , some may ask w hat that is,   it’s a complex condition and there’s so much more than just tics.   I don’t tic for fun, tics hurt and cause pain,   But I continue to fight it, every single day.   Fighting the pain and living with Tourette's , in the day and the night, never getting enough rest.   But the thing that annoys me most of all, is feeling like I’m never in control.   My tics are here just doing their own thing,     I don’t feel in control, just like a puppet on a string.     The stares, the sneers, the laughs and the talk,   Everywhere I go, people think it’s just a joke.   But what people don’t see is that behind the involuntary   Tics and movements I’m just trying to be me   I don’t like being in the spotlight, the centre of everything,     Just like a puppet on a string.     I don’t mean any harm, no...
Read more

College with Tourette's

Hi guys, it’s Caitlin again. As you are probably aware, I suffer from Tourette’s Syndrome. I doubt it’s a shock for you to hear that getting around my everyday life is a struggle. As a second year A level student, with the stress of my final exams just around the corner, studying is not easy. With the workload, revision and mocks thrown into it, the stress is definitely not minimal, especially with Tourette's added on top of all of this. . At first, going to college was one of my biggest struggles. As I only found out I had Tourette’s in August, going back to college in September felt impossible. However, after going into college the first day back after summer, the staff could not have been more supportive. We had already contacted college to make them aware of the situation, by doing this I was able to begin to get support with my A levels. . Going into lessons was not that easy. Suppressing my tics during lessons was hard as the pain made it hard to concentrate. My classes h...
Read more

Just Be You ❤

I realise I've been a bit silent on here lately. I'm still trying to get my head around what's going on in the world, but I'm back ready to share a little more about what it's like living with Tourette's. Firstly, if you read my last blog you will have read about my leg tics. My legs were constantly ticking and I was using crutches daily as I could not walk. However, I can now say that in April my legs stopped constantly ticking! I believe in a loving and powerful God who is the reason why I can walk properly again! I still have leg tics (but they are not as frequent and they usually only happen now if I have dairy) and I'm much more independent now when these leg tics do happen. I want you to know today that it's ok to struggle, and to help you to understand that, I'm going to share with you a little bit about how my Tourette's has affected me during this lockdown. So, let's start off by going way back to March when the world changed com...
Read more