I don't think it changed much. My family had no idea what epilepsy was, why I had it and what effects they would see. I would grab their leg or ask to be held and they thought I was just looking for attention. A few years later the seizures got stronger but by then a lot of them were married and away from home so they once again didn't see the serious action. They didn't like the way mom cried about it and that was the only time they'd ask me what happened, what did I do that scared mom.

They definitely changed their ideas about me when I had surgery. Once again you could tell they didn't know much about epilepsy. I felt confident everything would be OK. They felt I would never be the same. Some of the early comments were "Are you nuts?" and "We were afraid we'd lose you.". Then I started writing poems to explain how I was getting what I wanted - a second chance at life. When I reached five years seizure-free and I told them this was all I wanted, they eased up and started kidding me about it...and that was what I wanted. Now my one brother will occasionally tell people that I have only part of my brain and I love it because I'm proud of it.

@A MyEpilepsyTeam Member
Thank you for the feelings. My seizures started when I was 10 years old due to a tragic birth. I continue to have seizures in my 40’s.

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A MyEpile...

It scares me reading about people who started epilepsy as a child and I did not start until I was 52

I have had epilepsy since the age of 1.

In addition to what I said. My niece from Ottawa Ontario, Canada is married to a emergency service worker. I took a seizure during my mother's funeral and he looked after me, where this was the first time some of our relatives have ever seen me take a seizure and the wonderful looking after me that he did.