Updated: Jul 5
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My name is Luke, I was diagnosed with Tourettes syndrome when I was 17 years old. My Tourette’s came out While at the end of secondary school while undergoing my GCSE’s. I believe my Tourette’s started due to extreme stress levels. I was undertaking my GCSE’s which I was stressing about, with a broken wrist and ruptured ACL (knee) which needed surgery. plus I was playing for hull fc academy (u16s) and was waiting to see if I was going to get offered a professional contract for hull fc u19s.
As a child I was diagnosed with ADHD, auditory processing difficulties, and various learning disabilities such as, Dyslexia, dyspaxia, merl erling syndrome.
The start of my Tourette’s started off as a shiver/shoulder moment. within a weeks, I then started with a vocal grunt and my shoulder movements had progressed to full arm movements etc. As I started college I was given the official diagnosis when seeing a neurologist. Within weeks I then had full onset of Tourette’s syndrome. My tics were very sever and was suffering from motor tics, verbal tics, tic attacks (Tourette seizures) etc. While at college I was playing rugby league professionalally for Hull FC academy. I was playing rugby full time while doing a level 3 BTEC sport course.
I stuggled as concentration levels for theory work was near enough non existent due to the amount of stimuli at college. I was only able to complete college work from home. while at college I was having Tic attacks (Tourette seizures) which lead to ambulance being called to the college very frequently. However my Tourette’s never effected my rugby or sport/exercise in general. I would tic before training started and as soon as I got started my Tourette’s would become non existent due to concentration levels.
I was having monthly meetings with my neurologist. I was given various antipsychotics for medication to help my tics, I struggle on any form of medication as I have always been anti medication. I began CBT (cognitive behaviours therapy. This was unsuccessful due to the compexity of my Tourette’s. I was suffering from sever OCD traits and the therapy was making my tics worth and ended up a vicious cycle.
I then started psychotherapy and with my obsession for exercise/routine. I was able to suppress my tics for periods. This allowed me to manage my Tourette’s, however any stress/anxiety or change in routine would set my Tourette’s off big style.
Two years on I was released from Hull Fc due to my injuries. I started university in sports science, like college I struggled. Due to the severity of my tics I ended up partaking my uni course in a room on my or from home as I was unable to attend lectures. While at uni I was having weekly ambiances due to the amount it stimuli setting off my Tourette’s and was having seizures midway through lectures etc. However I was able to complete my course and have a degree in sport science! I ended up passing my driving test first time, which was a big achievement for me. Same as Exercise I was able to focus when driving and due to concentration levels/low stimuli, I was able to experience no tics!
Soon after I was approached to go on Channel 4’s hit tv Programme ‘The Undateables‘ I appeared in two episodes (series 8 and 9). I went on the show for awareness of Tourette’s and to show you can do anything whether it’s getting a job, going to college/uni to playing for a professional sports club!
From there I began to raise money for Tourette’s action by partaking on various sponsored activities (Triathlons and Tough mudders and pint challenges abroad). I raised a total of around £2000 from all my sponsorships!
I became a Trustee for T.I.C - Hull and Yorkshire charity (Tourette’s inclusion in the community). My aim as a trustee is to be able to spread as much awareness on Tourette’s as I can and to eliminate all the stigmas on Tourette’s. especially the fact that NOT EVERYBODY SWEARS!!! Only a small percentage on people have vocal tics with intrusive/inappropriate language! This is coprolalia... only around 10% of people stuffer with this! I’m just one of the lucky ones with it!
I still feel that I get judged, I have coprolalia, and am a young adult and covered in tattoos, which doesn’t help as people think i’m just some ’idiot’ that has bad behaviour... on a daily basis I have to deal with Mucky looks off people and people starring and approaching me for ‘this behaviou’ They expect an explinaction for my behaviour, then when explained they just laugh it off and dont take it seriously! The amount of people that still think Tourette’s is just swearing is huge! In my opinion, This is due to poor media coverage of the over all aspects of Tourette’s syndrome! On TV they prefer to put on the aspects of Tourette’s which will get ‘good views/makes good tv’... For example the swearing and Dynamic involuntary movement elements. The majority of the public are unaware that people with tourettes can have mild tics And everything that comes with Tourette’s like OCD traits, anxiety, depression, physical injuries etc.
I strive to get as much awareness out there for everyone that suffers from Tourettes!
I am currently working at a Psychiatrist Assessment ward for the NHS as a support worker and a physical intervention trainer. I have worked there for 2 years. I love my job and have a passion for helping anyone that struggles with there mental health! My job also helps myself by increasing my knowledge of the psychological/psychiatric elements of Tourette’s and how it all links in with each other! I have a lot to give as I have been through a dark stage when things have been tough With my tics and want to help as many people as I can whether it’s Tourette’s related or mental health related!
Thanks for reading!