Epilepsy and the Internet


This post is part of the Epilepsy Blog Relay which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

Thanks to the internet, I have a group of people I call my Epi Friends.  These are people all over the world who are living with epilepsy and talking about it.  It’s been a life-line.  I used to feel isolated at home, unable to drive and without access to other people like me. When I was first diagnosed, in the last century, I only knew one person with epilepsy.  Hers was caused by a brain injury, mine had no known cause. We didn’t talk about it. For years I was alone with my disability. I didn’t understand it and neither did anyone else. Then Facebook and Twitter exploded and suddenly I had access to millions of people living with the same daily struggles with epilepsy.  We are united.

The internet offers us a unique way to share information and grow community support for epilepsy.  Every epilepsy awareness post can help educate the world and reduce the stigma.  People from all over the globe can get together and share their experiences.  My friend Matty is in the UK, Dave is in Canada. We wouldn’t have met otherwise. We touch base weekly, offering each other “Have a seizure-free day!” It’s a small thing, but it can make a world of difference.  I have a loving and supportive family, but they can’t know what it’s like to forget your middle name or wake up in a strange place not knowing how you got there or what year it is. That understanding comes from people who share the same sorts of experiences.

Some days I answer questions, some days I ask.  My new favorite facebook group is “Seizures with a sense of humor.”  We laugh at the peculiars of our everyday life.  Some jokes are mild, some are raucous. “What’s an epileptic’s favorite dinner?  Little Caesars. Shake and Bake.  Caesar Salad.” 

You have to laugh about it sometimes. Laughing about it lessens the load. The community can share a laugh and normalize our situation.  Recently I read a post about “Where is the weirdest place you ever had a seizure?” Once I woke up sleeping in the empty tub, fully clothed and covered in a blanket.  Someone else shared that they took a shower fully clothed.  It is great to share our weird experiences and feel a little less alone in the world of fully conscious people.

NEXT UP: Be sure to check out the next post tomorrow by Maureen Knorr at https://livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.
And don’t miss your chance to connect with bloggers on the #LivingWellChat on December 6 at Noon ET.

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