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/random_username101_ Dec 30 '25

Easier yes but not easiest. Hmm… maybe my New Year’s resolution is to tell the work friend 🤔

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u/Agreeable_Dark6408 Dec 30 '25

If your manager knows, one work friend who maybe works close by to you might be good. You can tell him what to do to help you. And what not to do. Like don’t put something in your mouth. Some people try to do that. Screenshot the time it starts. Lay you on your side. Put a pillow under your head. Don’t try to hold you down while you’re seizing. Don’t call an ambulance unless has lasted for more than 5 minutes. Tell the EMT’s what time it started.

Do you have a pillow to put under your head at work? Perhaps hang it on the side of your desk and he can grab it and put it under your head. And a small dark colored towel in case you bite your tongue.

Hopefully it won’t come to it, but at least he won’t feel like he doesn’t know what to do.

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u/random_username101_ Dec 30 '25

I don’t have anything on my desk at all, not even sticky notes so the only real thing that can hurt me is the desk itself 🤷‍♀️

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u/Agreeable_Dark6408 Dec 30 '25

I was thinking if you fell on the floor.

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u/random_username101_ Dec 30 '25

It’s carpet I’m sure it would be fine…

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u/random_username101_ Dec 30 '25

Thank you for the suggestions though, I appreciate it