What Am I Supposed to Look Like


That’s how I used to respond when someone told me I don’t look like I have epilepsy. Well, that with a look that was probably saying something completely different.

There is a huge misconception that an epileptic looks a certain way. There is a physical appearance that indicates I have it. However, this is wrong. Unless I tell you or you see me have a seizure, you wouldn’t know. I used to get angry but now I don’t. I try to see it from their point of view. Why? Because, their perception of epilepsy and my pre-diagnosis perception of it are the same.

Yes, prior to being diagnosed in 2013, I thought some of the same stigma’s I am trying to fight were true. I was certain I could spot someone with epilepsy a mile away because they looked a certain way. A wheelchair, a deformity, something that would tell me for certain they were epileptic. And, I was afraid of them if I thought they were. The thoughts of seeing someone have a seizure scared me. I was never mean or derogatory but I was without a doubt scared. If I knew for sure someone did have it then I did my best to avoid them.

After being diagnosed the tables quickly turned. I was on the receiving end of the stigma, the fear, intolerance, etc… but, I couldn’t understand why. I didn’t find myself scary and I expected others not to as well. Then I remembered how I felt about people with epilepsy prior to my diagnosis and it hit me like a ton of bricks. I realized I was being treated the way I had treated others. Looking back I could say that in essence I was afraid of myself but didn’t know it at the time. Wow, talk about a slap in the face from karma.

I am not proud of the way I viewed epilepsy, in fact, I’m ashamed. I was the same as the people I stand up to every day. But, I do believe everything happens for a reason and everything is a learning opportunity. I believe my previous mindset helps in advocating. I know how those who aren’t affected by epilepsy think. I know how to approach them and how to talk to them. I can say, “hey, I used to think exactly like you until I was diagnosed.” It tends to relax them quite a and we can comfortably continue the conversation.

I write, advocate and educate for all of My Purple Friends because we are one big family and I love all of you. But, I also do the same for people who have my old mindset. I know there are some people who are just mean and no matter what we do we aren’t going to reach them. But, I’m not one of them and if I felt this way prior to my diagnosis then I know for sure we have a lot of work to do. There are people we can reach because they aren’t mean or scared for the sake of being scared, they are just misinformed and not educated about epilepsy.

We have to stay strong, support each other and work together to raise awareness and educate. Never be ashamed of epilepsy; speak up and speak loud. We are in this fight together and together WE ARE STRONG!!!

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