Not only is it Tourette Syndrome Awareness month, it's also Pride month. We caught up our friend, and Tourette Scotland member, Michael Dy, to talk about his Tourette's and find out what Pride means to him.
Can you tell us a little about yourself?
I am 45 years old. I was born in Glasgow; I have 3 older siblings although only one of them is still living. I currently live in West Lothian with my fiancé Jay and our two fur babies, or as others call them, dogs...Missy and Evie. I currently don’t work due to a number of health conditions of which TS is one.
What does Pride month mean to you?
Nowadays I see Pride month as a show of solidarity between all people who live within the umbrella term of LGBT+. There has been a long and still ongoing fight for people in our community to be fully accepted and to have the same legal rights as everyone else. Pride month is a chance to push that issue more to the front in the public eye, its not just about people living in this country and our rights, which a lot of people are still having to fight vigorously for, but also the people worldwide that live in much more repressive countries. It's a chance to show them we are here as allies, that they are not alone and people around the world continue to do all they can to make their lives better and them to be accepted.
The sad part of the month nowadays is the companies that suddenly want to appear as allies, when in fact they are cashing in on the chance to slap a rainbow on their product in the hope of snaring that extra few pounds or sales from our community. I’d rather the support and awareness were an all-year round thing, not just when its “awareness” month and its clearly a marketing gimmick.
How did your TS first present itself?
Looking back at my life now that I know I have TS, I can see that in my childhood I had tics of making sounds and facial movements all of which back in those days where seen as annoying habits that I had and was probably more than once chastised over. I don’t look at that as being a bad reflection on my parents, growing up in the 70’s and 80’s TS was not something you thought of your child having.
What age were you when you were diagnosed?
My official diagnosis was not made until I was around 40 years old. Although the noise and movement tics had been surfacing at various times throughout my life, the thought conditioning of them being a bad habit led to me not paying them much attention. After a number of stressful life events, the tics didn’t want to go away. I spent a couple of years discussing with my GP the reason for them and they just kept saying it was stress related due to my mental health condition. Eventually I started doing my own research online and one of the things that kept coming up was TS.
Now, I'll freely admit I didn’t think that was a possibility, I didn’t randomly swear (not yet anyway!), my knowledge of TS was just what mainstream media had portrayed. I still floated this idea to my GP and insisted I wanted to see someone else regarding the movements of my face especially. From there I was referred to one neurologist who tried Botox to see if it would calm the movements, which it didn’t. I then saw the neurologist's understudy who, after examining my multitude of facial tics, declared that Botox would definitely not work, unless it was used in every muscle in my face. She then referred me to a specialist in movement conditions (Dr Davenport) and it took him about 20 mins of questioning me about my life history and the current tics for him to declare that I had TS.
What, if any, coexisting conditions do you have?
The other conditions I have that go along with my TS are agitated depression, anxiety, chronic pain, a mild form of hyper mobility that affects my right knee at times and mild coprolalia (it finally surfaced I think to get me back for my former ignorance, lol).
What is the most challenging part of your Tourette’s?
Mainly the aches and pains that come along with the condition, I can be prone to having tic attacks that leave me in severe pain for days afterwards. There is also a lot to deal with mentally when you have this condition, nobody likes to stand out in public because they are doing something that others consider weird. So, there is a natural tendency to supress and try to hide tics, this impacts physically as well, but the mental strain of always checking your behaviour because you don’t want to be noticed or the centre of attention is very draining.
Have you experienced any additional challenges with having Tourette’s and being part of the LGBTQ+ community?
I wouldn’t really say I have encountered many challenges that having TS produces for me as part of the LGBT+ community, if there is one though its likely that I am not very inclined to mix with a lot of people. Sadly, the LGBT+ community in certain settings can still be very judgemental on how someone looks and acts. Someone like myself with noticeable facial and vocal tics could likely face a lot of judgment on the “scene” so it was never a place I really felt I fit in. Aside from that, I don’t do pop music and the stuff the gay scene is known for, I like my music loud, heavy, with a lot of drums and guitars….
Can you share any positives to having Tourette’s?
Can I say that we have one of the most caring and supportive communities all around the world? The one thing I have noticed coming into the TS community and living with the condition is that others who have TS and their families generally are very welcoming and always looking out for each other. We may have an as yet incurable condition, but that doesn’t stop us caring for others and showing empathy that is sadly missing in a lot of walks of life nowadays.
If you could tell your younger self anything, what would it be?
With regards the TS, that you’re not weird, eventually you will understand the things you do. With regards my sexuality, accept it a lot quicker, you won’t lose your friends and family and you will spare yourself a lot of lifelong problems.
What do you wish that everyone else knew about Tourette’s?
It’s very cliché in our community, but, that it’s not the swearing condition. I want the world to see what living with all types of tics is really like. The pain we learn to live with especially would shock a lot of people, I feel for our condition to be fully understood especially within the medical profession, we still need to raise the awareness levels of the chronic pain and fatigue that TS brings to us.
Thank you Michael!