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Babs
September 22nd, 2017, 01:00 AM
this is sorta a rant/can anyone relate kinda thread

so starting around age 7 i started having complex partial seizures (not a medical emergency like grand mal seizures, but still interferes with daily life) and for various reasons i went untreated until july of this year, after having to just deal with having them for 11-ish years. during those years, my being epileptic was kind of a touchy subject and a source of minor embarrassment for me because people didn't understand, they just thought i was a weirdo. like, someone would be talking to me and i would have a seizure and when i would snap out of it they'd just be looking at me like i'm stupid because from their perspective it seemed like i wasn't paying attention or maybe i did something weird like started humming (which is typical with my kind of seizure) and i'd have no idea what they said or what i did because i can't remember what happens during a seizure. in some instances, other kids would laugh or hit me or something because they genuinely didn't understand what was going on. it wasn't often that people had that kind of reaction but because it did occasionally i never really acknowledged when i would have a seizure, i would downplay it and try to start the conversation where it left off.

so now i'm medicated for my seizures and have been 100% seizure-free since i began. and i've been feeling retroactive frustration over how nobody understood how hard it was to go through that everyday for so many years. like, i've almost been hit by cars, i caught an ovenmitt on fire while wearing it, sliced my fingers up cutting onions or some shit, because there was no way of knowing when i was going to have a seizure and well the show must go on. even people, family members, who know that i'm epileptic and that i can't help it don't understand how debilitating it was. i was spending time with my sister last week and she keeps bringing up a situation in which i was kind of a burden and unhelpful because i kept having seizures and i just needed to stay sat down in order to protect myself (there was a camp fire and i've had incidents with fires before as previously explained) i've apologized profusely for it and explained that it was because i was having back to back seizures and she has acknowledged that, but she still throws it in my face.

it's really really hard to be totally at the mercy of your own brain. i can't believe that i'm still not over the way some people treated me for it or the lack of understanding but i'm still salty. i'm realizing now that its all over that none of it was fair.

Just JT
September 22nd, 2017, 08:30 PM
Sorry this is like this for you.

What I'd do is in some kinda tactful way is say something to people, family, close friends, how your feeling about this. They may see you now and perceive you as "healed" or "cured" and aren't aware of any other symptoms or feelings about how you feel about this.

Maybe I'm wrong....correct me if I am... but they may see you as a new and different person now. Almost in an insensitive way, assuming you see The same progress you've made as that do.

They've see you from a different light than you've lived. You may seem "changed" to them, and become insensitive to the problem at hand.

Idk...never knew someone with epilepsy before. I'm just taking a stab at that is all. If I'm. Waaaay off go ahead and slap me. Just not in my temple ok? Still get headaches easy lol!!

Babs
September 22nd, 2017, 11:08 PM
Sorry this is like this for you.

What I'd do is in some kinda tactful way is say something to people, family, close friends, how your feeling about this. They may see you now and perceive you as "healed" or "cured" and aren't aware of any other symptoms or feelings about how you feel about this.

Maybe I'm wrong....correct me if I am... but they may see you as a new and different person now. Almost in an insensitive way, assuming you see The same progress you've made as that do.

They've see you from a different light than you've lived. You may seem "changed" to them, and become insensitive to the problem at hand.

Idk...never knew someone with epilepsy before. I'm just taking a stab at that is all. If I'm. Waaaay off go ahead and slap me. Just not in my temple ok? Still get headaches easy lol!!

i would almost say that it's the reverse. i feel so incredibly healed and cured, it's liberating not having to worry anymore and i don't know how i ever lived with it. i guess my complaint would be that they never respected (for lack of a better word) how much i was affected by it. for example being left untreated for so many years partly because my parents' didn't take it seriously until i finally laid down the law, or being resented by family because they saw me as being lazy or spacey rather than seeing that i was being affected by an illness, despite actually having that knowledge. like even when they knew, they didn't really know if that makes sense?

Just JT
September 23rd, 2017, 05:06 PM
i would almost say that it's the reverse. i feel so incredibly healed and cured, it's liberating not having to worry anymore and i don't know how i ever lived with it. i guess my complaint would be that they never respected (for lack of a better word) how much i was affected by it. for example being left untreated for so many years partly because my parents' didn't take it seriously until i finally laid down the law, or being resented by family because they saw me as being lazy or spacey rather than seeing that i was being affected by an illness, despite actually having that knowledge. like even when they knew, they didn't really know if that makes sense?

It does. And if you feel resentment I don't think I'd hold back tbh
It's how you feel, and they should be aware of it. I'm

And I'm sure together you guys can work it out somehow right?