Struggles and Triumphs

Posted Fri 6th Mar 2020 at 15:24
by Sarah Wall

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Sarah writes about her past struggles in the workplace, and how developing multiple chronic illnesses helped her accept her TS

Growing up I didn’t realise that I had Tourettes because it was so ingrained in my day to day life; it was the norm. Sure I did quirky little bits here and there but couldn’t really see any problem with it. All of my tics bar one have been of a kinetic nature and in my movements, from facial grimacing to arm flying, leg kicking to head jolting, with one a little more vocal in the form of throat clearing. I couldn’t even tell you when or even if it started in childhood, but by my teens I started noticing the odd rituals of movements I would make and the sensation of necessity that came with them. 

Describing the sensations was difficult because they felt so normal to me that to get a non-ticcer to understand what I was feeling was such a challenge. So much so my doctor referred me to a Neurologist who was convinced my ‘episodes’ were actually fits and diagnosed me as epileptic. This was despite my protests that I was fully engaged when my episodes occurred and was not actually fitting. It took a second opinion to get my Tourettes diagnosis at around the age of 18, and for the first time I felt truly connected to what was going on in my body, almost like that Cinderella moment when the slipper fits because the diagnosis for the first time fit with what I was experiencing.  It finally made sense to me but now it was about getting it to make sense to everybody else.

All through my life I have suffered with anxiety and feelings of low self-esteem choosing to be in the background rather than upfront and centre. I hated being looked at and judged and so from a young age mastered a way of hiding my tics so people wouldn’t stare.  Of course they had to be released at some point usually once I was back home where I could pace for hours on end.

All through my education years I never had the confidence to confide in anyone about my Tourettes instead keeping them hidden until I got back to my safe release zone. Going into the working world I wanted it to be different I wanted to unburden myself and be honest about who I was and Tourettes was and still is a big part of that. Children can be cruel but not necessarily with intention surely adults would be more understanding. Unfortunately this was not the case when attending an interview with an employer who made out he had no shifts after hearing about my wayward legs and enthusiastic arms. This was an interview – how could he not have shifts? There was a big sign on the door saying vacancies; he was interviewing me for peats sake. He could have asked me questions about my tics if he wanted but by this stage I could tell he was no longer interested. I felt embarrassed, judged and plain stupid for saying anything in the first place and I decided at this point not to declare my condition to any future employers. Some people would advise against this but I felt this was the right choice for me as all I wanted was to be treated like everyone else.

It was during my time working in a professional corporate environment whereby I had worked my way up to an impressive position without anyone knowing  about my Tourettes that I decided to reveal all to someone I worked with who I considered a friend. Friend or not the response I got was of pure shock and horror and even after I had explained my ability to keep my tics at bay the response I got was ‘how uncomfortable it would be for everyone else in the office’ – never mind me and the body torturing agony I was putting myself through every day for the sake of others.  In this moment I found myself almost trying to play it down to comfort her rather than myself and swept it under the carpet like it was some dirty secret because once again when I tried to be honest I felt it was thrown back in my face like it was something to be ashamed about. Never mind my personality, my abilities, and my kind nature it was all about how my potential behaviour would make other people feel.

It was several years later when I had to leave that position after developing multiple chronic illnesses which meant I could no longer hold down a job and my world got turned upside down.

Developing multiple chronic illnesses believe it or not was the catalyst for me to start to embrace my Tourettes. Being ill most of the time I felt I was losing myself to a point whereby I didn’t know who I was anymore, but one of the only remaining parts of me that stayed consistent were my tics. Ticking has given me more of an understanding of my pent up emotions e.g. in times of stress, anxiety but in times of happiness and excitement too and when I need to release it lets me know something is going on psychologically with me as well as physically, enabling me to tackle my emotions head on. 

In this day and age conditions are slowly and surely becoming more understood and accepted in all aspects of life, (a big change to when I started out) and at the age of 31 I have finally accepted I have Tourettes and I am no longer ashamed to say that. I no longer fear what others think and if people ask I will talk about it openly and honestly but more importantly I will not apologise for it.

I have spent a big part of my life caring about what other people think to a point of hiding a part of my life away from the judging eye, but my tics are a part of my life and without  them I just wouldn’t be me.

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