Embracing My Tourettes Syndrome
by Sara Gee
I want to share my story with the world to help raise awareness of a particular condition that honestly the media makes fun of and people find it funny when it's actually so misunderstood!
When I was 7 years old, I started doing weird things like nodding/shaking my head, blinking and winking all the time, crunching my nose up and making weird little noises. Being a kid is tough enough as it is, without having extra things for people to make fun of you for! My parents thought it was a habit so they used to tell me to stop, but I couldn't. I couldn't control these little movements and noises no matter how hard I tried.
This continued into my teenage years, however it did get a little bit better in high school. I was always aware of the little things I did, eye rolling, head jerking, winking, and humming. As soon as I was old enough to get on the internet and research I did. I remember typing in "Why do I do weird movements I can't control?" And "Why do I wink all the time but can't control it?"
That's when I figured it out. I saw it there right on the screen. It explained everything so much. I had Tourette’s. The movements and sounds I couldn't control were called 'tics'.
I remember one day when I was about 13 running in from school crying, saying I think I have Tourette’s. I was so nervous because I thought no one would believe me. I didn’t swear or hit or do really bad things like most people think, so it was kind of cast aside.
When I was 17, I decided to take myself to the doctors. I explained everything and the doctor kind of said "Well, you could be low on the spectrum, but I haven't seen you do any tics while you’ve been here." This made me feel so bad, like my tics weren't noticeable enough to be valid. Even though they're all I ever think about every day, I get headaches and eye aches from the movements and my nose hurts from a nose tic I have, and I feel so low about myself because of them.
But of course, since the doctor couldn't see them, they weren't a big deal (to him).
I sort of accepted I had Tourette’s but I hid it from everyone, since my tics were subtle and not always noticed. I was so embarrassed about them. Throughout my teenage years and into my adult life my tics were always on my mind. It took a toll on my mental health and my self-confidence went to an all-time low. Yet I was hiding all this and keeping it to myself because I didn't want anyone to know. None of my friends had any idea I had Tourette’s. They just thought I had a little eye twitch. I was good at hiding my tics. But this meant I kept all the feelings to myself. I never met anyone else with Tourette’s to talk to. I had no one to relate to.
My tics have gotten even worse in University, probably due to stress. I ended up referring myself to a therapist. The sessions seemed to help my feelings towards my tics but something still wasn’t right. I just needed to accept them as a part of myself. I had hidden them for so long and it ate away at me inside. So I decided to put myself out there and tell the world this is me.
I uploaded this status to my Facebook page: "Having been attending therapy sessions for the past 4 weeks now, I have been encouraged to try and accept a certain part of myself that I have hated for the majority of my life. I feel I would like to educate people about this, as I am currently trying to accept this as a part of who I am, instead of hating it. This is not something I openly talk about or tell people, because quite frankly I am embarrassed and self-conscious, even though it is ‘not that noticeable’. I have undiagnosed ‘Tourette’s Syndrome’.”
I know most people think there is no way I have Tourette’s. I don’t swear or shout profanity or make huge movements with my limbs. That’s okay, many people think this is what Tourette’s consists of solely. But it’s not. This is a misconception, only 10% of people with Tourette’s experience this type of tic. It’s called Coprolalia. The media makes Tourette’s into something people find hilarious, unfortunately.
Tourette’s syndrome is a neurological disorder where people exhibit involuntary movements or sounds they cannot control. These are called tics. This disorder can be viewed on a behavioural spectrum. The tics range from simple tics (small movements and sounds such as blinking, head jerking, muscle tensing, sniffing, throat clearing, humming, etc.), to complex tics (shouting, swearing, hitting, saying random phrases, repeating people, hitting self, big limb movements, etc.).
I am lucky enough to only have simple tics (that could change in the future, who knows), however I have dealt with various forms of tics from the age of around 7 years old. Although these tics are sometimes barely noticeable by others, they are something that has taken up a huge portion of my thoughts and life for the past 15 or more years.
As a child, my symptoms were mainly passed off as habit, and they fluctuated between bad and good. I never got diagnosed, it was seen as just a habit, and I would “grow out of it eventually,” right?
I feel that I wasn’t diagnosed because it was seen as a habit, and I think this is because of the lack of education about Tourette’s syndrome, just like there is a lack of education when it comes to many other conditions too.
Personally, I only experience persistent, ongoing tics when I am in my own world, relaxed, or when I’m anxious or stressed, over thinking about something. I can sometimes have a few minutes where I blink and sniff non-stop, and it’s VERY noticeable. However, when I am out and about, doing activities, and my mind is occupied, I do not exhibit tics very frequently. I did do a few in the doctor’s office, but they were so un-noticeable they were cast aside. They are un-noticeable to the doctor, to people, but for me they are real and they are always there.
I meet every single criteria for the diagnosis of Tourette’s. But have I been diagnosed? No. Is it even worth being diagnosed? I’m really not sure. However, diagnosed or not, I am currently going to some really great therapy sessions and getting cognitive behavioural therapy to help me manage my tics and learn to accept them as a part of my personality. I also have to accept that there is not a cure, and there is no telling if my tics will get better or worse throughout my life.
This will probably be a long journey for me, as I have spent my whole life hating this part of me. This is something almost no-one knows about me, so this is pretty scary for me to post on here. I suppose this is another lesson, just because someone seems happy and loving life, doesn’t mean they don’t struggle with their own inner demons and mental health issues.
Well this post is my way of beginning to accept my tics as a part of who I am. It is me, and I can’t change. I post literally everything about me on Facebook, I’m a sharer! So, why not this?
I was so nervous and a bit terrified at this now being out in the open. Would people judge me or dislike me?
Instead I was met with nothing but support, people I don't even talk to were messaging me to say that it's amazing that I’m putting myself out there and spreading awareness. Some people said they hope that this goes viral.
This made me want to take it one step further...
I decided to make my Instagram totally open about my Tourette’s and I also made a YouTube channel where I plan on V-logging and also posting educational Tourette’s videos to help raise awareness. I recorded myself watching YouTube for 10mins and counted how many tics I did. There was 51! I made this into a YouTube video and uploaded it to my new channel, and shared it with my Facebook. It was terrifying knowing people would see me at my worst, however I wanted to raise awareness. And I won't stop there!
There could be SO many other people in the world who went through life with tics affecting them physically and mentally, but being cast aside because they don't swear or go crazy with their tics like the media portrays.
So this is why I am sharing this story with you, because I want to raise awareness of Tourette’s syndrome. It's not all swearing and saying rude words. It’s not something to laugh about.
I want people with Tourette’s to see my Instagram and YouTube videos and not feel so alone. I want people without Tourette’s to see my videos and posts and gain some knowledge so that maybe next time they see someone with Tourette’s, they'll have that little bit more understanding.
Thank you for your time.