More Than Meets the Eye

Jessica teaches first grade and spends her summers working at camp, where she gets to do what she loves most: work with children. When she isn’t teaching, she’s exploring new places (Cape Town, South Africa, is her favorite trip so far), reading mysteries, thrillers, and romance novels, or cheering on the Yankees and Knicks. Jessica spoke about living with Tourette syndrome, which you can read below.  

BTL: What would you want someone who knows very little about Tourette syndrome to understand about your experience?

J: The biggest thing is that my tics are completely outside my control. To someone watching, a tic might seem small or like something I could stop doing, but I can’t. Different situations can make them worse, too. Being somewhere very quiet, or even being hungry, tired, or hot, can affect my tics without me realizing it. Hormones can affect them as well.

BTL: Have your tics changed over time?

J: Yes, completely. I’ve had both physical and verbal tics, and they’ve changed throughout my life. They were much more noticeable when I was younger and have decreased as I’ve gotten older. I still have physical tics, like raising my eyes or opening my mouth, but they don’t really bother me. The verbal tics were harder. I used to blurt out words, repeat things or say names loudly. Sometimes inappropriate words would come out, even though I didn’t want to say them. I take medication, which has helped a lot with the verbal tics. They’re much more under control now. Many people wouldn’t know I have Tourette syndrome unless they spent a lot of time with me.

BTL: How has Tourette syndrome affected your daily life?

J: It has always been in the back of my mind. There were times, including in college and afterward, when I avoided restaurants or other public places because I worried that my verbal tics would interrupt things or draw attention. If I said something loudly on the street, people might stare and wonder why I was saying it. I’m doing pretty well now, but for a long time I felt like I had to think carefully about where I was going and be ready to explain myself. Growing up in New York City, though, I found that most people were accepting. People are used to hearing all kinds of sounds around them, and many didn’t judge me.

BTL: Have people ever misunderstood your tics or made assumptions about you?

J: Definitely. If someone hears me say something unexpected in public, they might think, “Why would she say that?” People also sometimes assume Tourette syndrome always looks like the extreme examples they’ve seen on social media. But it presents differently for different people, and those examples don’t reflect everyone’s experience. I’m pretty open about it. I’m comfortable saying, “I have Tourette syndrome, and I can’t help it.” Sharing that can help people understand what’s happening.

BTL: What kinds of support have helped you feel most comfortable being yourself?

J: My family and friends know about my Tourette syndrome, accept me, and support me. My doctor has also been a huge source of support. I’ve seen him since I was nine, so he knows my history really well.

It makes a difference to surround yourself with people who see you as a whole person. They know Tourette syndrome is part of my life, but they also see everything else I do.

BTL: Has having Tourette syndrome shaped the way you connect with your first-grade students?

J: I don’t think my students know I have it. They might notice a physical tic and ask about it, but my tics are controlled enough right now that they don’t affect my teaching. Because my students are so young, I haven’t felt that a bigger conversation about it is necessary.

BTL: Is there anything else you’d like people to take away from your story?

J: You can’t always tell what someone is experiencing just by looking at them. Someone you’d least expect may be dealing with something you know nothing about. I think experiences like mine can make a person more understanding and well rounded. It’s important to look beyond what you first see and embrace the whole person.