Coping with Seizure-Related Embarrassment

It was much more embarrassing to me when I didn’t know what was happening to me. I’m lucky (or maybe cursed) to have primarily myoclonic seizures, so I got the nickname Twitchy from my parents and my mom thought I was making up my seizures either as an excuse to get out of things or I was just being a spaz. I developed epilepsy in high school and I’d have random limb jerking that tosses things across the room and whatnot, freaking everyone out around me (in my attempt to seem “normal” I’d just shrug it off or give finger guns, which is now my auto response to anyone seeing me seize which is super embarrassing because I don’t realize I’ve pulled ye ol’ fingies out until they’re pointing). My first full body seizure wasn’t recognized as a seizure so I was just “the person who woke people up with an ambulance ride at 8am” in my dorms freshman year. Looking back I had massive auras for the twenty or so minutes leading up to it and I really should’ve just sat down but whoops. Second (known) gran mal is when I finally learned I had been suffering seizures for years. My doctor is…not great. Didn’t do anything for me other than write me a prescription and send me to a sleep clinic (which he only did because I suffer extreme tiredness all the time, been five years and he just doesn’t seem to care about figuring it out anymore). He called it random young adult female seizures to me out loud, but it wasn’t until I saw him reading a note to himself about me that read “epilepsy” that I finally got confirmation that I’m an epileptic. Could grow out of it, might not, point is my doctor isn’t very helpful. Nowadays my mom is in denial that I’m an epileptic and still seems to think I can control when my seizures happen (although at least she accepts that they are something real and not gaslighting them away). People still tiptoe around me and my partner gets noticeably anxious and doe-eyed when I’m having a bad spell, but at least I can say “it’s just a seizure, I’m good.” I’m not ashamed of the seizures themselves anymore, but I am ashamed of the things that I sometimes do during them. Accidentally jerked my hand repeatedly on some random guy’s stomach at a con (funny in one way, horrifying to have lived it), dropped half a bucket of popcorn on a stranger in an IMAX (my anxiety and my subconscious morbid sense of humor only let me say “a gift” to him before I fled the scene), and since they’re mostly in my arms I look like I’m DJing a turn table sometimes so I’ll do a real bad record scratch impression afterward to lighten the terror. I’m thankful that my friends and partner have always been there to help if I need them and quick to help me clean up.

I love the reputation I've established for myself growing up, being this very chilled out reliable and giving trusting guy. It's brought about a network of very caring and trustworthy friends that I can come to about anything, on top of my paternal family always being there for me. I can gladly say that I have never once felt embarrassed about telling anyone new in my life or strangers in my life about my epilepsy either, I always let them know immediately in fact as a safety precaution for myself, I've always felt that to be extremely important. At this point I feel as if I almost proudly announce my epilepsy (not to make it sound like I brag about it) but nobody should be embarrassed to tell anyone who doesn't know about their epilepsy about it especially if they're going to be around them for a while, that's one important thing I've always learned because if they're not aware they're just going to go about their own business as usual and suddenly be hit with a surprise seizure. So for the sake of your own safety, PLEASE don't be embarrassed to inform those around you about your epilepsy I promise you there are still good people in this world who will look out for you and do what they can when they see you having a seizure. I even have a rescue medication I was prescribed called Nayzilam which I always carry with me when I'm out and explain to anyone around me how to use in case a seizure does happen.