In my eyes, Tourette’s syndrome isn’t just a disorder, and it isn’t torture, even though some days it truly feels like it tries to tear me apart. To me, Tourette’s is like a strange, unpredictable friend who never leaves my side. It’s there through every high and every low. Sometimes it quiets down and steps back, like it’s giving me a break. And in those moments I almost forget it exists. But eventually, it comes back, reminding me that it has always been there and always will be.
Tourette’s can be cruel. It can make me hurt, embarrass me, make me feel like I’m being watched and judged every second. But just because it can be harsh doesn’t mean it’s evil. It feels more like a best friend who doesn’t know how to communicate nicely, who pushes too hard, gets too loud, and forgets how delicate life can be. And like any longtime friend, it changes as I grow. Sometimes it moves further away. Sometimes it steps closer than I would like. But no matter what, it never leaves.
So here is my story about this complicated friend of mine, Tourette’s Syndrome.
I was around 12 years old when the tics began. No one understood what was happening, not even me. People looked at me like I was losing my mind. Why was a twelve-year-old suddenly jerking, blinking, twitching, making sounds she couldn’t control? Tourette’s usually begins younger, so people didn’t believe me. My body became something I didn’t recognize. At an age where all I wanted was to blend in and fit, I became the opposite. I couldn’t hide anything. I felt exposed all the time.
I tried medication that made things even worse. I hallucinated. I forgot my own grandmother. I remember sitting there, terrified, thinking, If this is what it takes to be “normal,” then maybe I don’t want normal. That was the moment I realized how misunderstood Tourette’s is. How little this world really knows about something that is both so common and yet treated as so “strange.”
At 13, I started 8th grade, a year that tested every part of my heart. I started CBIT therapy, which was supposed to help, but I was told I was “too comfortable” with my Tourette’s to make the therapy effective. That frustrated me. How could I not be comfortable? This was my body. I didn’t get to leave it. I didn’t get breaks.
School became a battleground. The bullying was constant and brutal.
“There’s a demon in you.”
“Can you just shut up?”
“She’s so annoying.”
They said it like they were commenting on something I chose. But I didn’t choose any of this. The guilt I carried for something I couldn’t control was unbearable. I didn’t want to disturb class. I didn’t want to draw attention. I didn’t want to be seen as loud, weird, or disruptive. But my body would not listen to me.
I even got detention for my tics…punished for existing. That was when I realized something important:
I could not let shame raise its voice louder than mine.
I had to accept that Tourette’s was not something to hide because hiding would only make me disappear. And I refuse to disappear.
Freshman year of high school brought new challenges such as medical complications, emotional exhaustion, and physical pain when my tics injured me. It was another reminder: I was fighting a daily battle no one could see.
Now, I am 15 years old. A sophomore.
And I am still here.
Still fighting.
Still living.
I am a youth advocate for NJCTS. I’m on the NJCTS Youth Council. I found my people. I found my community. I found my voice.
I may struggle in school. I may have days where my body feels like it’s working against me. But I also work on a farm where my heart feels quieter and my mind can breathe. I have discovered that healing sometimes looks like dirt on your shoes and sun on your face.
I have learned that Tourette’s does not stop me from having a full life, it just means my life looks different. And different is not bad. Different is human.
I am Emily.
And Tourette’s Syndrome did not break me. It shaped me.
It taught me resilience, compassion, strength, and how to keep going even when the world doesn’t understand.
I am not giving up on myself.
Not now.
Not ever.
Emily Muldowney is a member of the NJCTS Youth Council, a TS Advocate and mentor and a participant at the Tim Howard Leadership Academy.
