Break the Stigma: Q&A on Anxiety-Induced Juvenile Myoclonic Epilepsy

The worst part was going back to school and everyone asking me if I was “the girl who had a seizure.”

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Nicolette Wescott, 22-year-old graduate student from Medford, New Jersey, has lived with anxiety-induced juvenile myoclonic epilepsy since she was 17-years-old. Read on to hear more about her journey with the illness, and be sure to check out her YouTube channel on epilepsy.

Explain one of your worst, most severe experiences with your illness.

I was so nervous for my first day of freshman year of high school that I didn’t eat or sleep for three days. I’m not sure what was making that anxious, but it was extreme torture.

The morning of my first day, everyone said I was out of it. But I remember absolutely nothing. I woke up in the hospital at 6 p.m. to several nurses around me. They told me that I had had a seizure in the middle of the hallway of Shawnee High School on the way to first period.

They kept me in the hospital for three days because that’s how long it took to fully regain my consciousness. I remember feeling confused and frustrated. The worst part was going back to school and everyone asking me if I was “the girl who had a seizure.”

What first made you believe something was wrong with how you were feeling?

I kept zoning out. When I would get really nervous for things, I would not eat or sleep; and the next morning, I would have something called “the shakes.” Later, we found out these were actually seizures.

How does your disorder affect your day-to-day life?

I worry a lot. I feel as though I don’t make as many friends as I could because I don’t let just anyone close to me. I always think, “what would this person do if I had a seizure in front of them?”

I recently cancelled a trip with my best friend because it was giving me anxiety that we weren’t going to be the only people on the trip. I’d be embarrassed to have a seizure in front of people I don’t know well, even though I haven’t had one in four years.

When you’re in the middle of an episode, how exactly do you feel, and what helps you break out of it?

My first instinct is to pinch or bite my skin so that I feel something. Before a seizure takes place, your entire body goes numb. It brings me comfort and reassurance knowing that I can still experience pain. That usually breaks me out of the dark mental place, and I can continue doing whatever I was doing.

What does your treatment look like?

In the beginning, it was a lot of therapy. It helped a ton. Also, I’ll be on a medication called Keppra for the rest of my life. That prevents my seizures and enables me to drive.

What are some everyday coping mechanisms you use?

A therapist taught me to name five things in a room that I can see and feel. This shows that my brain is working and aware, and I will not lose it to a seizure.

Do you think there is a specific stigma about anxiety-induced epilepsy? If so, what is it and why do you think it’s harmful to those in your shoes?

I think when people hear the word “seizure,” they automatically become alert. It’s a big deal and a scary thing. It’s harmful to people in my shoes because when a seizure breaks out, everyone’s initial reaction is to freak out, when in reality, they need to lay us on our side and make sure our head doesn’t hit the floor.

What is one thing you wish you could tell your loved ones about your illness?

Imagine how scary it is not knowing if you’re going to lose control of your mind out of nowhere.

What is one thing you wish you could tell society?

Be patient. Brain fog is real. Try to be understanding. We are not freaks because we have seizures. There is legitimately something wrong with our genetic makeup.

If you could offer advice to someone who was just diagnosed with the same illness as you, what would it be?

It’s going to be a pain not having your license, but with the support of your friends and family, I promise you will get through it. Let the doctors try different medication combinations on you because you never know what may work for you. Everyone is different!

Edited for brevity and clarity by Sammi Caramela.

Want to help #BreaktheStigma against mental illness? Contact me to share your story!

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