Throughout my 20’s I decided not to disclose my Tourette’s syndrome to anyone in the workplace, for fear that it would negatively impact my career and change the way people interacted with me/ perceived me. My worst fear was to be seen as weak or vulnerable and I rejected the label ‘disability’. My career and personal brand have been built on my ability to communicate clearly and calmly (traits not often associated with Tourette’s).
My Tourette’s syndrome manifests itself through approximately 30 motor and 10 vocal tics. No, I do not swear or shout words aloud *rolls eyes* (it seems the nation’s awareness of Tourette’s stems almost exclusively from a few extreme channel 4 documentaries). In actual fact, the majority of people with Tourette’s syndrome do not swear or shout (not due to Tourette’s, anyhow). I have spent 30 years learning to hide, control and disguise my tics, such that (I believe) the majority of people would not have a clue. Tourette Syndrome is an inherited, neurological condition.
Occasionally my Tourette’s syndrome makes me appear distanced, because I am focussing so much energy on controlling my facial tics that people perceive this as being stand-offish. I have had to work at this. It’s tricky to think about what you’re saying, and how you’re saying it, as well as using appropriate/ welcoming facial expressions – all whilst trying to control the urge to blink 300 times or raise your eyebrows repeatedly. Personally, I do not find that ‘letting them out’ helps. This actually makes it worse for me. There are days (for example when I’m delivering an emotionally intense training course) where I need to spend 10 minutes during my lunch break sitting down, alone, with my eyes closed, in order to calm my motor tics before the afternoon session commences. Controlling tics is exhausting and I have to practice a lot of self-care in order to manage the associated fatigue.
Despite the challenges, in many ways it has enhanced my skill set, enabling me to develop and refine advanced mindfulness, breathing and emotion management techniques. My own experience enables me to better empathise with anyone going through a daily, invisible, struggle (often alone), such as anxiety or depression, which I believe makes me a better coach and trainer. I am also able to understand those with strong control tendencies and preferences. Finally, I connect well with those who find large groups overwhelming, tiring and over-stimulating (often, but not always, introverts). I spent time on Haloperidol (a strong anti-psychotic drug) when I was a teenager, in the hope that this would help. It did, a bit, but the side effects were so extreme that I certainly wouldn’t recommend it.
When I mentioned to some of my family that I was going to write a blog post about my Tourette’s syndrome a few of them said, ’are you sure that’s a good idea, people might not understand it and then decide they don’t want to work with you’. To be honest, I have reached a point in my life now where I think, fine, if you don’t want to work with me because I have Tourette’s syndrome, then you are probably not the kind of client I want to work with; I suspect we don’t share similar values. I know I am good at what I do.
I think it’s time that I start practicing what I preach and encourage people to be open and honest (where possible and appropriate) to help educate, break down barriers and remove stigma.
If you would like to learn more about the condition, or if you have it yourself and would like to share your story with me or ask any questions, please feel free to message.