The hardest thing for me about having epilepsy is talking about it and making it sound casual. In my experience, no one in history has ever been super chill about seizures — except other people who have seizures. I’m pretty relaxed about my condition; after nine years, you get comfortable. If I know someone really well, I even joke about my seizures. But the problem always lies in getting someone else to feel comfortable with the idea that at any moment I could have a seizure in front of them.
The second those words come out of my mouth, people tense up. I understand, I really do, because if someone else suddenly became completely nonverbal and began staring into space, I would be concerned. If someone suddenly fell to the ground and began convulsing, I would be scared too. Maybe not as much as the next person, but still, I’d be scared. It’s the most natural reaction. No one is calmed by seeing a loved one have a seizure.
As someone with epilepsy, I struggle to find a way to ease people into the idea that I’m not a total weirdo and I probably won’t have a seizure in front of them. I just have to let them know in a chill way, without scaring away someone who goes from thinking they’re meeting a fun new friend to thinking they’re meeting someone who could need their care at a moment’s notice. I don’t need them to be experts on epilepsy; even some of my closest friends have only a basic understanding. I just need them to see beyond the scary words “epileptic,” “seizure disorder” and “call 911”. It’s scary to see someone have a seizure, but I’m just another person who wants to meet new people and go fun places, be carefree and enjoy life to its fullest.
If I had to give advice to someone with a new friend with epilepsy, I’d say this:
One, don’t freak out. Ask them what you need to know. Your friend has likely answered this question before and has some simple go-tos.
Two, if you don’t understand their directions, ask again. Ask what kind of seizures they have. Go home and Google it. Your friend is not the encyclopedia of epilepsy and may not want to talk about it all day.
Three, check in on them from time to time, but otherwise treat them just like any other friend. All people with disabilities want is to be treated like humans.
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