Why I started my series 'Tourette’s Tuesday'

Posted Mon 5th Jun 2023 at 14:29
by James MacInerney

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A short back story to my experience living with Tourette’s

At 29 years of age, my experience living with Tourette’s spans close to 25 years.

At 4 years old, my parents recollect early nail biting, grunting sounds, and shaking my head. This developed into blinking, head shaking, grunting, leg skipping & jumping in my early teens. I received my diagnosis in my final school year at 18, ahead of university.

Grunting and breathing irregularities happened more often in my early twenties, to the current time frame - all the above with emphasis on neck turning, jumping, and teeth grinding.

I’m a London - Irish makeup artist living with Tourette’s, disclaiming my condition on many jobs and shoots, to clients, designers, and management teams within the industry. I’ve shared aspects of my Tourette’s on TV, magazines, and radio interviews - notably appearing on BBC/Netflix’s Glow up Series 2.

May 2020

Early pandemic, it was episode 2 of Glow Up, the start of the creative brief is my moment that went viral - what everyone sees is an ideal media package. I delivered an ideal storyline on television, yet it was sincere, true to the questions I got asked, however, I knew I was holding back.

My inbox was flooded with messages as I realised the thousands that live with stims, tics, coprolalia and body tremors was far more and different to how I’ve known Tourette’s to be.

The media stories and moments are refined because I’m prepared, often underselling the real truth as I wasn’t ready to go the full mile. Post pandemic my tics have multiplied, I have fallen victim to my own body and at times felt defeated.

December 2022

I was exhausted after a Christmas event following a busy period. My stims & tics fired up, I lost sense of direction and my footing. I fell, grazed my head against the wall outside my house. The shock, embarrassment, somewhat shame, frustration, and exhaustion became too much. I broke down to my family during the holiday period thinking am I losing all my abilities, and will this affect my career? I’ve promised it never would.

So why is this taking control? Am I surrendering? Are these tics and stims and grunting patterns taking over? What about the fact it’s simply growing up and trying to manage life’s responsibilities. I’ve wanted to help myself, but I hadn’t figured out exactly how.

My image and message weren’t maintainable, and the internal pressures had done their job, which is ironically a form of OCD - trying to maintain obsessive perfection, strongly connected to Tourette’s. 

The last 6 months have been a journey on figuring out how to break the cycle.

May 2023

I’ve taken my power back with social media, the platform that was presented to me mid pandemic with worldwide exposure. I feel I’ve needed to give time, simply time to learn for myself how I want to address my feelings and situation. The battle between not wanting to be this way, rather than finding how to care for myself and heal what’s been hurting has been a journey.

Knowing now, I can speak out to discover I’ve an immense amount of community support that’s readily available, which I denied myself for far too long.

There are so many terms for my form of Tourette’s and reasoning for a lot of habits I have, things make a lot more sense as of lately (alongside accepting some things I’ve denied for years).

Part of #TourettesAwarenessMonth alongside Tourettes Action has helped me create my own series on Instagram - Tourette’s Tuesdays. 

A weekly segment where I address an issue about Tourette’s, and share advice, treatments to help, understand my own condition more in an honest way, accessible to everyone - someone needs to hear, and I know I now have the voice to share what matters.

I can address misconceptions, stamp out stigma and better celebrate a stronger sense of acceptance for everyone whether you live with Tourette’s, or are a parent, family member, friend, or ally towards someone living with the condition regularly. All whilst creating a makeup look!

I’ve been heavily influenced and have educated myself a lot by re-listening to a BBC sounds & Radio 4 interview documentary I was lucky to be a part of, presented by Aidy Smyth, a fellow creative and presenter, living with Tourette’s.

Another valuable resource has been joining in webinar studies with Tourettes Action and Nottingham University, on the development of a future stimulant device that could help suppress and control Tourette’s.

Watching Lewis Capaldi’s Netflix documentary really made me feel this is also my time to share the real story. This blog is also an important checkpoint, getting to write down how it really feels and know the story for myself, to share on to another person that will need it, like my younger self would have been searching for.

You can follow James on socials:

@jmac_mua instagram

TikTok and website/contact hello@jmacmua.com 

Www.jmacmua.com 

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