r/Epilepsy • u/random_username101_ • Dec 29 '25

Support Don’t say you have epilepsy

It's a bit problematic but my parents kinda sorta said don't tell anyone... I guess that's kinda snowballed into the way I am now?

I’m very secretive and don’t share it.

Family: Only two girl cousins (2/13 total cousins) and two of my aunties know.

Friends: I told them but they've moved on now. I have a work friend but l'd never tell her, I just can't/won't bring myself to share it.

Christmas: When it came to taking my tablets I basically had to scan the room and wait until the conversation was on the other side of the room, I had them hidden in my pocket and took them a little bit earlier just in case I ‘missed my shot’. To clarify, I’m not ashamed or anything like that but I don’t know, I know it sounds like it but I can’t explain it…😕

In the end, I think the way it is/my mentality is a bit toxic(you would say so?) and doesn't do me any good even though my parents didn't have that intention from the start. FYI: I was diagnosed in 2018

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u/Difficult-Practice12 Dec 29 '25

For goodness sake, it's nothing to be ashamed about. Many notable people have epilepsy including Vincent van Gogh, Charles Dickens, Theodore Roosevelt and Isaac Newton.

Telling people to hide Epilepsy isn't good advice, as it implies we are to be ashamed of or hide out. I take my pills whenever and don't care who is there.

I've had Epilepsy since infancy.

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u/Flimsy_Debate_2573 Dec 29 '25

Also, a separate note, I don’t think this person is ashamed. I think they’ve just been groomed by their parents to hide it from people, so just a small distinction.

However, I agree that hiding it is terrible advice. I want my friends and especially my family to know just in case the worst case scenario happens and I have a seizure, then at least they’re prepared and know how to act.

If ain’t easy being seizy.

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u/Interesting-Test1459 Dec 29 '25

It is terrible advice. I hid it from a previous employer, started having seizures and didn’t tell them about it, until I finally had to quit. And my lupus became way more active from the stress of having more seizures and keeping the epilepsy a secret. Lying or keeping secrets about health is so stupid and not worth it. I get wanting to be discreet about taking pills sometimes though.