On February 9th, I had the honor of speaking at the Epilepsy Foundation of Western/Central Pennsylvania‘s (EFWCP) annual Mardi Gras Gala. It was a beautiful night with over 600 people in attendance. Green, purple, and gold balloons overtook the ceiling, live music rang throughout the room, and we all danced throughout the night. Most importantly, we all worked together to support the epilepsy community and the EFWCP, and fight stigma.
Speaking about stigma
My part in this was simple but important: share my story with the hundreds of people in the crowd…easy, right?! It was daunting, but I did it! I spoke from the heart and left the room in silence until the end. I received so many genuinely kind comments afterwards; I really feel like I made a difference. A number of people wondered whether I was nervous or not. I was a tiny bit, but I realized that if I didn’t share my struggles and triumphs, no one would hear them. These guests wouldn’t know what living with epilepsy really felt like. It can be difficult to explain a seizure, medication side effects, and the psychological effects epilepsy has on those who have it.
Not as easy as it seems
No matter how easy or difficult this speech was to make, it was important. Sometimes, in my fight to eliminate stigma and live a “normal” life, I create the perception that my life is easy and free from struggle. Even though my epilepsy is well controlled, I still face challenges. My migraines still bombard me and disrupt my life. I have an incredibly poor memory (the other day, I asked the same question 3 times in only a couple of hours). My medications leave me exhausted, regardless of the amount of sleep I get; due to this, I sometimes can’t do all of the activities my friends do. To the untrained eye, people wouldn’t know these problems; my epilepsy does not appear to interfere with my life.
I don’t want people to attach stigma to me, or anyone else with seizures. We need to be treated as individuals. Just as we all have different likes and abilities, epilepsy impacts our lives in different ways. Speaking to all those people helped them realize the life people with epilepsy lead–the good and the bad parts. It helped me realize something too: it’s okay to admit where I have trouble. It doesn’t take away from me as a person.
What are the ways epilepsy impacts your life? What do you wish you could tell people about your experiences? Let me know in the comments below!
Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.