To Tell or Not to Tell

I was seven years old when I was diagnosed with Tourette Syndrome but ten years old when I found out. After noticing my tics, my parents brought me to a neurologist and got my Tourette diagnosis. Their decision at the time because I was so young was to explain to me that I had no control over my tics but not give me a specific name for what I was dealing with.

At ten years old, I remember driving with my mom and hearing something on the radio describing Tourette Syndrome. I started paying attention to what was being said over the radio because it sounded too familiar to me. As a curious child, I asked my mom about it and why I understood what was being said. Then, she explained to me that Tourette Syndrome was indeed what I had and I needed no further explanation.

That day, what I remember most was being ecstatic. I was so excited to have learned about my diagnosis which I attribute to a sense of comprehension. I finally understood that there was a real condition behind what I had been going through the past few years of my life. What I did not feel was anger or discomfort. I didn’t even mention the fact that my parents had kept the terminology from me because I didn’t care to. I was just happy to finally understand myself more.

While this is controversial and an issue that many parents deal with when their kids are diagnosed at a young age, my parents’ decision to not tell me exactly what it was had no lasting effect on me. Yes, I was grateful to understand myself through learning about Tourette Syndrome. But I didn’t blame them for not telling me sooner because it most likely would not have made any impact other than confusion. How do you get a 7-year-old to understand the concept of a neurological disorder? There is no right or wrong answer. It’s something that takes time and careful consideration. So, when deciding when to break the news to a younger child, there is no right or wrong answer. You just cannot leave them in the dark for too long. Since discovering I had Tourette Syndrome, I’ve developed a community of friends and family that I would have never met or had.