Most common questions you get about your epilepsy?

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I'm a bit curious. I have seen a YouTube video with people saying about all these crazy questions they get. I have kept my seizures hidden for many years so I don't think I've heard of a lot of people's crazy questions. I'm quite surprised of some questions out there like, "Is epilepsy contagious?" or something...

What about you all? Have you ever gotten any crazy questions about your epilepsy?
 
Usually it’s if I have tonic clonics or how long have I had it
Sometimes if my epilepsy is the reason I don’t drive (partly it is but also I don’t want to)

Those are the main ones I can think of
 
Why didn't the surgery stop your seizures is the main question I get from people.
 
People would often ask what my seizures felt like (when I only had simple partials)--now they can't believe what I have done/can do to myself during complex partials. I'm also asked about the side effects of the drugs I take/took.
 
You mentioned crazy questions. I’ll never forget. It was 1990 and someone asked me why I wasn’t institutionalized or in a group home when I told him I had epilepsy. I was shocked. I hope you are all aware how lucky we are to live in modern times. About a hundred years ago we were institutionalized in asylums and a few hundred years ago would’ve been thought to be witches and executed.
 
You mentioned crazy questions. I’ll never forget. It was 1990 and someone asked me why I wasn’t institutionalized or in a group home when I told him I had epilepsy. I was shocked. I hope you are all aware how lucky we are to live in modern times. About a hundred years ago we were institutionalized in asylums and a few hundred years ago would’ve been thought to be witches and executed.
I was 1st diagosed in the late 1970s when I was a baby and had tonic clonics back then.

My Mum said one day she was out with me and she saw someone my parents knew and the lady asked how I was, Mum said they found out I have epilepsy. The lady seemed shocked and pulled her 2 kids back.
Mum said to the lady ' its okyou cant catch it'
 
When it comes to children, it is good for them to be exposed to people with disabilities. It helps to normalize it and prevent discrimination. But, it makes all the difference in the world how their parents and role models act/react.
 
I also educate people when I can. The most common thing that surprises people is that there are so many different types of seizures. Usually they hear "seizure" & think of tonic-clonic seizures. I tell about the ones I have--simple & complex partial.
 
I don't really get questions. Mostly I get asked "What should I do?" I know it's meant well, but it always makes me mad because they seem to assume that they are responsible for me, and they seem to think I'm incompetent. I don't tell them I think that, of course. In a sense everyone is responsible when someone else is in trouble, but the way they ask seems to take away my personal agency.

I wish they would ask something like,

"Is there something I can do for you?"
"Is there anything you would like me to do?"
"Is there anything you need?"
"How can I help?"

That would be easier for me to answer because it would make me feel more like a person than a problem. It would also respect my choices and give me some dignity, allowing me to be "in control" even when I'm not in control of my body. Mostly I would just like someone to sit with me, rather than run around all worked up. I suppose I should begin by saying "What I would LIKE you to do is..." or something like that.

They also ask what my seizures are like, and I REALLY hate that (although I know it's meant well). I know they are just curious, but it's humiliating for me to say it. I'm sure everyone feels different, but that's how I feel. It's a very personal question for me. I tend to give them general information about epilepsy so they can help anyone (including me).
 
Thanks for the answers. Some questions are crazy for sure, some are more valid, and some are flat out annoying, but can we well-intentioned.

I think the only one I've really got is, "What should I do if you have one?" or something....

I remember this family I knew, their son was dating this gal for a while and one day she had a seizure in the living room. He totally broke down telling the story at church the following Sunday and was crying and saying how she was "dying in his arms" and he felt so helpless. It's like, "Dude, chill - she had a seizure." I dunno...from then on, I think she felt weird even going to church there. I can't blame her at all because people were all cautious around her and if she bent down to pick something up, people are all like, "Are you okay?!" and stuff. And she's like, "Yeah...I'm fine..." Kind of wished I went up to talk to her and encourage her, but I also didn't want her to feel like I was overstepping, calling her out, or putting her on the spot somehow or have other people find out about my medical issues. Yet, I've had many seizures in those church pews (mostly complex-partial) and no one had noticed that is what was going on...I just looked like a moron that couldn't stay awake to hear the sermon. I remember getting in trouble from my parents every Sunday because I must not be "getting enough sleep" the night before. Sometimes I was, and I still couldn't help it...it was the worst.
 
I went to seminary (Greek Orthodox), so we used to stand in church. I fell asleep every day standing up. When I was a kid my family went to a Presbyterian church, so I was sitting and I used to get in trouble for falling asleep all the time. I now know it wasn't my fault.

Kind of wished I went up to talk to her and encourage her, but I also didn't want her to feel like I was overstepping, calling her out, or putting her on the spot somehow or have other people find out about my medical issues.

I'm sure she wouldn't mind knowing that she's not alone.
 
Strange for me in that while many people know I have epilepsy, no one ever has a question on how things are going with seizures, nor how has my health been. I suppose it is due to the fact that I never bring up a statement on how I am, good or bad. Not even my wife! I suppose it works the best for me though as I really do not want to talk about it… they probably know.
 
I went to seminary (Greek Orthodox), so we used to stand in church. I fell asleep every day standing up. When I was a kid my family went to a Presbyterian church, so I was sitting and I used to get in trouble for falling asleep all the time. I now know it wasn't my fault.



I'm sure she wouldn't mind knowing that she's not alone.

She never came back after that day. Can't say I blame her...

Sorry to hear you had a similar experience about falling asleep in church. Something about seizures and those early Sunday mornings, I guess? -shrugs-
 
i have been accused several times of telling a lie because i appear to be in good shape for many reasons. and have needed to remind people it is a symptom not a disease
 
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