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Why I Speak Up About Living With Epilepsy

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By: Lia Turner. Lia Turner is a 17 year old youth and passionate advocate for epilepsy awareness

March is Epilepsy Awareness Month, a time when many people with epilepsy share their story to teach people about it and reach out to others with seizures. I'm glad to be telling my story, but this hasn't always been the case. This time last year, I did not want to talk about having epilepsy. I was filled with anger, frustration, and pain. I had no intention of diving deeper into those emotions, even if it would help others going through the same thing. I was afraid of what the future held, afraid of the unknown. It isn't easy having zero control over your body, which is what happens during a seizure. Even when you aren't having a seizure and seem to have control, you don't really because you never know when you'll have another seizure.

I used to put on a front and say that I was open and honest about having epilepsy, but the reality was I only discussed my condition with those who needed to know about it. I was tired of people telling me that epilepsy is not a big deal, that I'm exaggerating because my experience was unlike that of someone else they know with epilepsy, that they just don't want to know, or that they don't want my seizures to affect them.

I have a wonderful neurologist, but I didn't even want to talk to her about my condition. It seemed that every time I did, she had bad news. She would tell me there was another activity I couldn't do or my health was getting worse. I felt timid and sometimes even nauseous when I discussed my disability. That's the thing about a disability; it has the power to call out the deepest and most intense fear that one could ever imagine.

My perspective has completely changed over the past 12 months. It was an incredibly difficult year. I had Tonic Clonic seizures a couple times a month and Absence seizures several times a day. Even though the Absence seizures lasted only a few seconds and were less disruptive than the Tonic Clonic seizures, I couldn't get away from my epilepsy. The Absence seizures were like someone tapping me on my shoulder saying "remember this"? Sometimes the seizures gave me headaches and made it hard to concentrate on my class work, so I had difficulty in school. I changed medications, which triggered painful side effects.

While I struggled with my epilepsy, it was also a year of joy and self-discovery. After a tough year at school, a trip to historical sites in Greece and Italy reignited my passion for learning. I discovered the joy of young love and I also realized that I have something unique to share: my love for horses and equestrianism.

When Epilepsy Ontario asked me to share my story in their newsletter, telling me that my journey was worthy of an article, they sent me down a path of introspection and growth. I might not be able to control when I have a seizure, but telling my story is something I can control.

I found that when I share my story, it encourages others to do the same; to open up and be more comfortable with their disability. I realized that everyone with epilepsy has a unique skill to share, whether it's playing the violin, gourmet cooking, yoga, or writing. No one can tell we have epilepsy by looking at us, unless of course, we're having a seizure or taking our medication. These other talents and interests are more visible. These skills, not just our epilepsy, make us unique and special.

Over the last year, I discovered I love being an epilepsy advocate. I hope to build awareness and understanding about the effects of this disability both for the people who have epilepsy and for those who do not. I work towards epilepsy awareness for everyone who has ever encountered any type of ignorance that separates and divides them from other people. My goal for the future is to share my epilepsy story, to inspire others to do the same, and to make a difference.

The highlight of Epilepsy Awareness Month is Purple Day on March 26, an international grassroots effort dedicated to increasing awareness about epilepsy. I'll be helping other people share their stories to celebrate Purple Day. What about you?