Growing up with Tourette Syndrome (TS) has certainly made my life interesting. Not knowing exactly what was causing me to have all these uncontrollable actions during my childhood was probably the most difficult part.
As a child I had many of the common tics (i.e. grunting, head bobbing/shaking, neck jerking). Some of these caused me to have pains in my neck and a lot of headaches. I was at times made fun of for my quick and random movements. In elementary school the older kids used to call me “Wild Thing” every time I would bob my head or jerk my neck. I didn’t want to explain my disorder to them for fear of further ridicule, so I used my creativity to my advantage. I began bringing a Walkman to school and listening to 80s rock, bobbing my head to the tune. This achieved two things: it tricked my peers into thinking I was just rocking out to the music (which in fact I was), and instilled my love for the awesome genre.
It wasn‘t always easy to manipulate things to my advantage. I remember once in elementary school we were lining up to go outside for recess and I had a grunting fit. My teacher asked us if we were ready and I kept muttering. She became very frustrated with me as I kept making sounds under my breath. She thought I was saying no to her and she pulled me aside and got upset. She didn’t know I had TS. It didn’t seem to be a very well-known disorder at the time. I ended up doing a talk on it for that year’s individual speech and from that point, few people in my class made fun of me as they had gained a better understanding of my experience.
Growing up with TS Plus was further challenging because in addition to Tourette, I also have a mild case of obsessive compulsive disorder (OCD)—so add that into the mix and my parents had their hands full. As I grew up it was easier to control my tics around friends and when I got to high school few of my new friends believed I even had it. The hardest part was being at home with my family. They were always supportive and helpful, but both my father and younger brother live with both TS and OCD as well. This caused a lot of issues because each of us had different tics which would often clash with each other. To this day it still causes issues between the three of us. It makes family gatherings very difficult, especially for my sister and mother as they are the “normal” ones and it really hurts to feel unable to control myself and always feel the need to argue.
One thing I will say is that in adulthood, it has become easier. My family has noticed a momentous change in me and I owe much of that to my girlfriend. She is always supportive of me and is a mother herself. With her, I have a gained an understanding that I cannot act certain ways with children around. Not to say I cannot express tics, but I have the recognition that there are some things that I am able to work on to find a balance. This has helped me to control my outbursts, for example. I do still tic, but the kids find my tics cute, and they tell me it is something that makes me special. I understand that it may not be this way for everyone, but I’ve learned that talking about your lived experience and being open with those around you about TS is one of the best things you can do.
Throughout these experiences, among others, it’s clear that TS isn’t always the easiest thing to live with. My advice would be to live with it. It won’t keep you from anything you really want to achieve, and it will let you know who your friends and loved ones truly are. With the growing knowledge of TS it is becoming an easier thing to live with, and people are becoming more accepting of it. One piece of advice I can give is to enjoy it. It may seem counterintuitive, and it is often the butt of many jokes in the media but I’ve learned to laugh with it and not let it bother me. I’ve learned that TS is something you can live with, and my advice is to tell yourself every day that you control how you live with it. It doesn’t have to control your life.
by Anthony Sulpizio, 32