The stigma and fear surrounding seizure disorders makes talking about epilepsy difficult. Telling someone about a very private part of your life that you might not quite fully understand yourself is nerve-racking. You can never know how a person might react and worry that you’ll be seen and treated differently.
And how do you even go about bringing it up? Is there such a thing as a good conversation starter, or do you just throw it out there and hope for the best?
“By the way, I wasn’t ignoring you the other day. I have epilepsy so I was having this absence seizure. It’s the type of seizure where I’m just staring off and have a lapse in awareness.”
I’m certain you won’t get the response you’re hoping for in that scenario, but, then again, I’ve never tried it. If you do give it a try, please let me know how it goes.
Talking about epilepsy is no small feat, but it’s important to discuss it with your family and friends. Helping them get the seizure first aid knowledge they need to help you, can help eliminate dangers and provide you with the life saving aid when you have a seizure.
When you do start talking about it, you might feel like there isn’t anyone who truly gets what you are going through. Someone who doesn’t have or doesn’t know anyone living with epilepsy can’t really understand it, but that doesn’t mean there isn’t anyone out there you can talk to who does.
Check out TalkAboutIt.org, an awareness campaign that encourages people to have conversations about epilepsy.
Created by “Star Wars” actor Greg Grunberg, the website brings together celebrities and medical experts to raise awareness about seizures, provide first aid information and tackle misconceptions regarding epilepsy.
Dialogue is what Talk About It! is all about, and there isn’t a better way to talk about it than with talented celebs like Grunberg, Kristen Bell, J.J. Abrams and Milo Ventimiglia to name a few.
The Epilepsy Foundation is also a well of knowledge. Check out their Talking with Friends and Family article for information on how you can get started talking about your epilepsy and join the community so you can speak with people who have gone or are going through the same things.
If we have an open dialogue, we can raise epilepsy awareness and understanding together. After all, they say talking is the best medicine!