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Epilepsy Blog Relay: Time for a little compassion in epilepsy

This post is part of the Epilepsy Blog Relay™.

Kenny’s Story

One thing that you should never say to someone with epilepsy is, “You’ll be okay, I’m sure!” Only recently, has this been getting on my nerves.

I have to go in to get another EEG. I have aged out of pediatrics and they want to do a check-up before prescribing my medication. Since this has come up so suddenly, I have tried to talk to my friends about it because I’m nervous and stressed. What if something goes wrong and I am forced into regular hospital visits? I’m almost halfway through my college career and the last thing I need is to be flooded with treatment again.

When I have texted my friends the overall answer for me being stressed and nervous is this one sentence: you will be fine. What hurts me the most about this is the underlying feeling that they do not care enough to listen. This is something that I was only diagnosed with four years ago when I was a teenager.


»Related: Epilepsy Blog Relay: Life with epilepsy in high school


Anxiety and fear

Maybe someone can explain to me why I find this answer so annoying? Maybe I am overreacting, and the nerves of my upcoming appointment are taking over? All I can think when I hear this is, are you a doctor? Are you 100% confident that I will be okay? Do you know what this means for my day to day life if something is wrong? What if I have had a few seizures and because they aren’t as often as they used to be, I don’t notice them? I don’t want to make it seem like my issues are more important than others, but I don’t think people get that epilepsy is a disease.  Just because they cannot see it, they don’t think it is a big deal.

Epilepsy is a physical issue, isn’t it? There are millions of us living with epilepsy all over the world and for once I just want someone to say, “I know you’re nervous and I cannot understand it myself, but do you want to talk about it?” I’m not expecting people to understand what we go through because they don’t have our condition, but what I hope is that someone will take the time to understand that I do have this disease and it does interrupt my life.

The importance of compassion

Seizures made my life hell for two years. When my friends were all getting their licenses, I was told that I had about 20 seizures a day. I went to New York about once a month to have someone attach electrodes to my head. I was going to the grocery with my EEG on children approached me asking what was wrong with me. So, I hope that people who don’t experience the life we do, start understanding that being there and listening is all we want.

I don’t want someone telling me I will be okay all of the time. I want someone saying, “I know you’re scared and I’m here for you.”


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

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