Pamachu

446d

what is your experience with coping with embarrassment from seizures or does it not bother you? I'd love to hear from you :)!

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Top reply
    • strugglebus

      408d

      @Schiele your story sounds very similar to mine. I'm sorry that your doctor isn't of great help. I was once carrying a cup of chocolate milk, with both hands to the coffee table so that I can sit down and drink it, but just as I was basically setting it down on the table my seizure jerks said "nah" and I basically threw the whole cup. I was sad

    • rainbowofanxiety

      445d

      At first it did bother me, I'll be honest. I felt as if I was a burden to those that had to take care of me after I had one. But, after 10+ years of having them, I've had to use humor to get past the feeling of embarrassment and shame. Those who take care of me after I have one usually know me personally and if I was a genuine issue to them, they would tell me. When it comes to having them in public, I know I'm never going to see whoever saw me have one again, so I don't stress about it.

    • Pamachu

      445d

      That's a great way to look at it. I've always had such bad social anxiety.its good to know I may get used to it. I'm still trying to adjust to them. It's really difficult cus my support system isn't the best. :/ thank you for replying I'm definitely gonna try to keep that in mind next time I feel embarrassed.

    • BrandonSay

      444d

      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.

      • Pamachu

        442d

        @BrandonSay In my case I haven't been so blessed. My family isn't supportive let alone safe. My father is felon. My mom is a narcissist. My father turned on flashing light videos and then I had a seizure stopped breathing and he was laughing over me thinking I was unconscious. He joked about how I needed an exorcism. Mocking my tears while I felt like I was dying. I meant more so in public the looks and judgement. I have never been blessed with a good support system. I don't have friends as I'm still healing from trauma over the years I've been alive. I dont feel proud about my epilepsy. I feel like a burden on those I love. I feel like a zoo animal my family literally has grabbed chips and watched me like some side show.

        • BrandonSay

          442d

          @Pamachu please tell me you've at least developed good friendships throughout your life

    • QueenBee21

      442d

      I had a hard time with embarrassment from seizures for a while. When I was younger I had a few seizures in my choir which caused me to collapse onto this boy next to me. Really embarrassed at the time but he didn't mind at all and now we just celebrated our first wedding anniversary. :) Surrounding oneself with people who support you definitely helps the embarrassment.

    • Snowflake_trish

      435d

      I do have embarrassment over it I have social anxiety due to the fear of it happening around people, sadly to the end of this school year I had one during class thankfully there were only 5 kids that day but I started crying when I came back to because I knew no one and they had to bring my friend back in.

    • strugglebus

      428d

      I think my 5th seizure? was at a university camp thingy before my junior year of highschool and it happened while I was in the community bathroom stall. I do not know who saw me, who helped me or what happened. Lol I forgot to ask. But someone had to put my pants on and it was the first day🤷‍♀️ so it was around strangers. So I feel like after that I can kinda accept my fate since it's already happened and I can already get over it. I met up with one of the friends I made there 3 years later and she said it was weird seeing me without a black eye (from hitting the floor) lol

    • stormsurge

      425d

      My very first seizure was at a friend's house and we were playing D&D funny enough. At first I wasn't embarrassed I was really dazed and had no clue what happened but after a while I felt really bad. Kind of a immersion killer I must say. Even had a friend come and stay with me for a week to keep an eye on me because I didn't have medication at the time. It was very difficult to express gratitude and embarrassment especially to my friend who was helping me during the seizure (her family has a history of seizures) where I was flopping around all over her. It's become more of a joke among my friends now and I wouldn't have it any other way!

    • Schiele

      408d

      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.

      • strugglebus

        408d

        @Schiele your story sounds very similar to mine. I'm sorry that your doctor isn't of great help. I was once carrying a cup of chocolate milk, with both hands to the coffee table so that I can sit down and drink it, but just as I was basically setting it down on the table my seizure jerks said "nah" and I basically threw the whole cup. I was sad

    • BrandonSay

      408d

      I don't know what it is about me but it's extremely difficult to get me down in any way even facing my seizures and the difficulties I'm currently having trying to get from my home to a WADA test 3 hours out from me before I take the next step and get an RNS implant. Lucky for me I have a wonderful network of family and friends, I just need to find someone who isn't busy the day of

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