A Letter to You: You’ve Got This

Hi Friend,

My name is Madison and I am 18 years old. I heard that you were recently diagnosed with epilepsy and I wanted to share my story with you in hopes that it might give you a little bit of reassurance.

I was diagnosed with epilepsy when I was 12 years old. This was a hard hit for me, as I was just about to enter my teenage years and it happened during the pandemic. I was really scared, especially because my younger brother had also been diagnosed when he was little. I was somewhat familiar with epilepsy because of what he had gone through and I was worried that I would also have to spend a lot of time in the hospital.

I was diagnosed with severe refractory generalized tonic-clonic epilepsy. The doctor informed me that I would not “grow out of it” which was, honestly, very hard to hear. I was scared and uncertain about what this would mean for my life going forward.

The first couple of years were really difficult. I had to learn what strategies worked for me and identify my triggers. It took some time, but we realized that missing my medication—even by just an hour—or being exposed to flashing lights could trigger my seizures. Stress is also a big trigger for me. Over the years, I have tried many different medications, and it took a long time for the doctors to find the combination that works best for my body.

Last March, I had a vagal nerve stimulator (VNS) implanted. My doctor says it can take about two years to feel the full effects of how it might help my epilepsy.

I understand that you might be feeling scared and wondering how epilepsy could affect your friendships or school life. For me, I have been very blessed. My friends still treat me the same way they always have and they have been my biggest support system over the years—especially my best friend! Sometimes my seizures affect my schooling and, if I have a seizure, I might be out for a couple of days. However, my teachers and the people around me have been very supportive and help me stay on track. Sometimes my friends even take notes for me, just in case I miss something!

A few years ago, I received a service dog named Tyson, who has become my best friend. He alerts me to my seizures which is especially helpful for the adults around me, as he will notify them if I am having a seizure.

I want you to know that you are not alone. You have friends, family, and a whole support system around you who care about you. Yes, there may be scary days, but remember that you are loved and supported. If you ever need someone to talk to, I am always here. Sometimes it really helps to have a friend who is going through the same experience as you.

Your friend,

Madison