'I’ve had more questions than a TV gameshow about my condition!'

Posted Mon 13th Feb 2023 at 09:31
by Lewis Hanson

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23 year old NHS Health and Fitness practitioner, Lewis, shares his personal story.

Hello everyone, my name is Lewis Hanson, I am 23 from Stafford, West Midlands and I work in the NHS Midlands Partnership Trust in a Forensic unit as a Health and Fitness practitioner. Sounds interesting right? Basically I work in a mental health unit amongst patients that are usually sectioned, and it is my duty to provide physical activity on the wards to help maintain a baseline level of fitness while undergoing treatment.

Okay, so as far as an introduction goes, I guess I’ll start way back to early childhood. In my early years around age 8/9, I began to start feeling these urges to make body movements/facial twitches, which I was unaware of at the time, and just thought it was what was addressed as a “habit”. Soon after followed grunting noises, clearing the throat and vocal tics started to become a regular thing. My siblings and teachers thought this was deliberate, and because I was unaware at the time what was going on, I found it incredibly difficult to try and resist the urge to do this. I can recall a time when a teacher appeared quite annoyed and told me to stop in front of everybody to which my response at the time (which wasn’t wise) was to tell her to shut up and left the room upset. I always struggled through school as I was constantly fixated on suppressing my tics, rather than the task at hand.

Coincidentally after this, I watched a program where a child on the show had the same condition, and subconsciously it gave me some understanding as to what I was doing, and something I could relate to. I then tried to relay this information back to my parents, which they seemed to struggle to understand so sought help from a professional to get some answers. 2011 was the year my TS diagnosis was confirmed.

From that moment on, I encountered a whirlwind of stuff that I could never imagine and was in no way ready for what I was about to encounter with this condition. It varied from involuntary movements, swearing and shouting. The list goes on, but you get the picture that things were happening out of my control.

In my years of battling TS, I am yet to encounter anyone with the same issue. I’ve been in a lot of difficult situations which the word ‘uncomfortable’ would be an understatement and could not even begin to describe how I felt and somewhat still feel in the situations today. Thankfully, through numerous attempts of medications which had awful side-effects, I have found medication that works and has reduced the severity by about 60%. You can still notice tics happen these days but thank god the majority of the time it isn’t as bad so it can seem barely noticeable.

I also help to self-manage with a healthy diet, exercise, hobbies such as football and generally just keeping my mind stimulated and busy before getting a good night’s sleep. I’m obsessed with exercise as you can tell as I do this day-to-day as a full-time job as well as incorporate extra physical activity. This includes the gym, running, football, boxing etc. Focusing on my health is by far my biggest passion as I feel this works hand in hand alongside my condition and can help. I often like to put myself in uncomfortable situations and environments as I feel this allows me to adapt better with my condition and to push myself a little beyond my capabilities and place myself outside the comfort zone. I am currently training for a half marathon and have signed up to an Ultra White Collar boxing event as examples of challenging myself amongst other events I have participated in over the past year.

I’ve come to understand that my symptoms vary depending on my emotional state and levels of stress I’m under, therefore as well as pushing myself, I am aware of my boundaries internally and how my body feels and know how to find solutions if I feel it’s getting too much. So the bottom line is some days can be very bad and other days it may not be noticeable at all.

I’ve had more questions than a TV gameshow about my condition! How come you keep doing that? Are you alright? Have you ever sworn at anybody? How do you get a haircut? How do you sleep? Can you drive? You get the picture! However, for most of the public, this is no fault of their own as they are just curious and I guess struggling to comprehend what is going on and even may be concerned for me, which I appreciate.

The people that are close to me can always tell the good days and bad days. I do get severe headaches and a lot of muscle aches in places where the aggressive jerks/involuntary movements occur but given my personality and that I tend to take things in my stride, I just get on with it like a lot of us. Some days I’m so worn out from ticcing and feel depressed to the point where I don’t want to get out of bed or go anywhere. I would sit and say why me? What have I done? Nobody should have to go through hard times. But the only thing I can take from it is that it moulds us into who we are and makes us stronger as a person.

I understand there are people that suffer with TS a lot worse than I probably do. My biggest respect goes out to you and how you deal with it. Thankfully, my condition is better than it used to be, and I’ve come a long way.

My biggest advice to anyone reading is if you have something you want to talk about but you are worried then find a safe space and comfortable person to talk to. Believe me, you will feel a lot better for it afterwards and to know that it is okay to not be okay. We live in a world where we are too worried about what people think, afraid to admit how we feel and what’s really on our mind. Please please find someone or somewhere you can express how you feel and not feel degraded by it.

Thank you for all those taking the time to read this, I hope for some this gives you something to relate to, and to others it helps you understand it better.

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