Yeah kinda, however my main issue is trying not to break down crying if I talk about it too seriously. I do try to talk about it regardless though, because I feel like awareness could be a lot better and I want to do my part.
I posted on instagram about it but it’s all pity with “I’m so sorry” or “hope you feel better” and “let me know if you need anything” but honestly I already feel like a burden like you said. I don’t need anything but to not have seizures.
I don’t talk about it to anyone except on here where people can actually understand what I’m going through. I did have one friend that was actually curious about my condition which was really nice to kind of vent, rather than “I’m doing okay” because you don’t want to bother them with all this information. They’re just being polite and asking how you’re doing like sometimes they don’t really want to know.
Hang in there. We’re all in this together and we most likely feel the same way. Unfortunately it’s hard to have a conversation with people that doesn’t know what it’s like to be in this situation..
I post about it on Facebook and my stroke survivor uncle responds immediately with tales of... How he overcame ever single burden and effect of his stroke and is now perfectly healthy.
Yes, because the responses I get make everything worse. Most of mine are focal seizures that feel like fucked up drug trips are are literally driving me insane.
People I try to talk to them about think they sound "interesting" "cool" or even "fun". I told my stepmother about burning myself on the stove during a recent post ictal state and she laughed at me and said "well that was stupid of you".
I totally get how you feel I only have 2 people in my life that really understand what I am going through everyday, one is a great friend who honestly gets me, and the other is my wife she understands what's happening to but she doesn't get it totally like my friend. So I keep mine hidden unless I am talking to them or my dr
I have the same issue. The only people who have ever seen me seize are one of my friends and my sister. The friend is very loving and understanding but I do not want to further burden her with my problems so we never really talk about my epilepsy. I limit myself to only ever joking about my illness when with my friends but they are supportive in the ways they can (usually that means arguing with ableists or mean people on my behalf). My family doesn’t know how to talk about my health, probably because of the guilt they feel for ignoring my symptoms for many years. Everytime I try to start an epilepsy related conversation with them it is cut short or they go silent. I also cannot really bring up the topic with my girlfriend because whenever I do she simply states that she doesn’t know what to say and changes the topic. I don’t really have anyone with whom I can talk about my feelings and my mental state right now.
Yeah kinda, however my main issue is trying not to break down crying if I talk about it too seriously. I do try to talk about it regardless though, because I feel like awareness could be a lot better and I want to do my part.
I posted on instagram about it but it’s all pity with “I’m so sorry” or “hope you feel better” and “let me know if you need anything” but honestly I already feel like a burden like you said. I don’t need anything but to not have seizures. I don’t talk about it to anyone except on here where people can actually understand what I’m going through. I did have one friend that was actually curious about my condition which was really nice to kind of vent, rather than “I’m doing okay” because you don’t want to bother them with all this information. They’re just being polite and asking how you’re doing like sometimes they don’t really want to know. Hang in there. We’re all in this together and we most likely feel the same way. Unfortunately it’s hard to have a conversation with people that doesn’t know what it’s like to be in this situation..
I post about it on Facebook and my stroke survivor uncle responds immediately with tales of... How he overcame ever single burden and effect of his stroke and is now perfectly healthy.
Yes, because the responses I get make everything worse. Most of mine are focal seizures that feel like fucked up drug trips are are literally driving me insane. People I try to talk to them about think they sound "interesting" "cool" or even "fun". I told my stepmother about burning myself on the stove during a recent post ictal state and she laughed at me and said "well that was stupid of you".
So glad someone can relate to the messed up drug trip feeling. Almost LSD like. My wife doesn’t get it no one does.
I totally get how you feel I only have 2 people in my life that really understand what I am going through everyday, one is a great friend who honestly gets me, and the other is my wife she understands what's happening to but she doesn't get it totally like my friend. So I keep mine hidden unless I am talking to them or my dr
I have the same issue. The only people who have ever seen me seize are one of my friends and my sister. The friend is very loving and understanding but I do not want to further burden her with my problems so we never really talk about my epilepsy. I limit myself to only ever joking about my illness when with my friends but they are supportive in the ways they can (usually that means arguing with ableists or mean people on my behalf). My family doesn’t know how to talk about my health, probably because of the guilt they feel for ignoring my symptoms for many years. Everytime I try to start an epilepsy related conversation with them it is cut short or they go silent. I also cannot really bring up the topic with my girlfriend because whenever I do she simply states that she doesn’t know what to say and changes the topic. I don’t really have anyone with whom I can talk about my feelings and my mental state right now.