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5 Things I'd Like to Tell New Acquaintances About Epilepsy

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Here are five things I wish I could tell people I meet about my epilepsy:

1. I can’t swallow my tongue.

Don’t feel bad — even I grew up believing I could swallow my own tongue and that was why you were suppose to gently smack me on the side of my face. Wrong. People with epilepsy can bite our lips and tongues while having a seizure, but no we can’t swallow them.

Other relevant stories:
Medications for Epilepsy
Things You Can’t Do with Epilepsy
Is Epilepsy an Autoimmune Disease 

2. Don’t be afraid.

There is nothing to be afraid of. Having epilepsy is a challenge, but it only makes me stronger as an individual. Instead of avoiding me, learn what to do if I happen to have a seizure when we’re together. Catch me, time the seizure, put me on my side, to name a few. And most important, comfort me and talk me through it. In my case, if the seizure happens to last more than a minute or two, call 911.

3. I’m just like you.

Having epilepsy doesn’t make me any different from a person sitting next to you who doesn’t have it. If you think about it, we all have something — just because mine is epilepsy doesn’t make me any more or less different, unique, strong, etc., from the kid next to me fighting cancer. Or the girl across the street who has cystic fibrosis. We’re all strong, unique and beautiful in our own ways — just fighting a different battle. Epilepsy is a brain disease; some people know the cause of theirs and some don’t. I’m 22, and doctors still haven’t found a cause for my epilepsy. But in my case, it doesn’t keep me from living a normal, everyday life. I’m just like you.

4. Learn my warning signs.

Some people who live with epilepsy say they can sense when they’re getting ready to have a seizure. Their arm will start to shake or they get a headache, become dizzy, etc. I can never sense when I feel one coming on. Sometimes, heat is a big trigger for my epilepsy, and I let people know this. The best thing to do when you’re brand new in the life of someone with epilepsy is pay attention. If you see them acting strange, getting dizzy, etc., stay close by and be prepared.

5. Just be my friend and love me through it.

Living with epilepsy is hard enough. Having to fight for what we want is hard enough. Having to worry about medication, insurance and for some people more than that… is hard enough. You may not see it, but we feel pain. The main thing people living with epilepsy want from anyone in their lives — not just new people coming in it — is to just be our friend and love us through it. Support us and tell us it’s gonna be OK. We just want to know you’re going to be there through the good seizure-free days and the bad days too.

Bonus: If the new person in your life is an employer, here’s my advice:

Starting a new job can overwhelming, exciting, scary all at the same time — for anyone. But living with epilepsy and getting a job can be frightening because we wonder, “What happens if they find out I have epilepsy? Will they hire me? Will they fire me if I don’t tell them? Will they know what to do if I have a seizure? Will they still keep me if I have a seizure?” I suggest letting your employer know you have epilepsy. Ask questions and make sure you get answers.

Do you have a story about your experience with epilepsy? Please send it to and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Originally published: September 9, 2015
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