Why I Started Speaking Up About My Epilepsy

Epilepsy stigmas are tough barriers to break through. There are people who might turn the other way when they witness someone having a seizure, people who might cringe at the sight of convulsing or losing control of bodily functions. But those people might not realize the person having a seizure is perhaps fighting for their life in the midst of it.

I believe there’s a serious lack of empathy in the world we live in, a lack of willingness to find the root of the situation or the concern to ask the why. But then you have us, the rare percentage who will stand up and say there’s more to this story.

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What is a stigma exactly? Merriam-Webster defines a stigma as “a set of negative and often unfair beliefs that a society or group of people have about something.” I think that describes it perfectly. The stigmas placed on those living with epilepsy have been horrible over a number of decades. A public seizure has sometimes been enough to label someone an outcast, put into a box and stigmatized. This is why it took so long for me to share that I have been living with epilepsy my entire life.

If you were not in my immediate family or a close family friend, you had no clue. I went public with my condition in 2013, when my seizures decided to make a grand re-entrance after I was seizure-free for 17 years. There’s a fear in sharing with others “I have epilepsy.” You see on television the jokes being made, you see movies of people having seizures and being treated badly. Even worse, you have those living with epilepsy who lose family, friends, loved ones because they cannot handle it or are embarrassed. There is fear about being denied jobs because of your condition. It makes you think twice about sharing. It’s exhausting!

When the decision was made to speak out about my epilepsy, I also decided I wanted to live beyond the stigmas. I wanted the world to know I am not “possessed,” epilepsy is not “contagious” and I am functioning just like anyone else. I don’t like the term “normal” because everybody has something going on with them. I wanted anyone who is living with any illness, including an invisible illness, to know it’s OK to share. Their story matters. Understand that not all seizures involve convulsions. I can stand right in front of you and have a seizure and you might never know it. If you feel you are too afraid to speak up, then I will speak up. No one should live in fear of being reduced by what society thinks is “OK.” Speaking up for yourself can ultimately save your life.

I did not ask for my epilepsy diagnosis at 3 weeks old. It’s just the way the cookie crumbled. Not one time did it stop me from being me. It did not stop me from achieving everything I have achieved in life. It motivated me to join the community and help others reach their full potential with epilepsy. It pushed me to educate others outside the community on what epilepsy is and what it is not. I will not stop until everyone around the world is living beyond the stigmas.

Follow this journey on Changing Focus: Epilepsy Edition.

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