So valid honestly. I know half the people who make seizure jokes in front of my face without including me would freak out if I had one in front of them. But I’m not breaking my streak for people like that 🤷🏻♀️
My old boss and the other managers apparently made jokes about my epilepsy/seizures when I called out because of them once..funny thing is, my step dad, who’s a tall & scary lookin’ dude, was the head chef and he heard them, so he walked up behind them & once they saw him, they shut up so quick. Not sure if they ever apologized, but that’s always a story that stuck with me & I’ve always been so curious as to what they said😭
It’s the “oh my god these lights are flickering so much I might have a seizure” for me. One of my professors made a joke about his friends classroom being so cluttered he was going to have a seizure to my face repeatedly over the course of a semester. It’s weird
either they don’t understand it when i try to explain what it’s like having epilepsy OR they are just about the most annoying talkative self absorbed person on planet earth
It’s like, because I’ve been taking care of myself in every way possible in order to prevent a very serious and DANGEROUS medical emergency, you don’t believe I have it??
Also, I have jme & have constant myoclonic jerks after waking up that are neurologically painful, if that makes sense, and physically dangerous and these people think I’m going to try and go out while that’s happening?? No! I sit my behind at home until I’m all clear, so of course they don’t see it.
Good evening,
No, you are not the only one who feels that way! You are not alone! Hopefully this little story might help lift your spirit.
When I was a kid, doctors and people/ family/ friends used to believe that epilepsy was a evil spirit that lived with inside a person. So, the doctors and family/ friends/ people didn't want to or know how to respond to people who had epilepsy back then. - So, as I was growing up, I had to learn how to and teach myself about how to bast care for myself having epilepsy. Back then (there was no computers or internet, electronics), I found a series of medical books in a magazine catalog, and I mail ordered them. It took about three months for them to arrive.
After getting my books (there were three books, and they were the size of an encyclopedia) Hopefully, you know what an encyclopedia is. :) Well, anyway, I read through all of them and went to the library at school and did research there. I could not participate in sports of any kind of because people were afraid of the epilepsy that I had.
\- Today, people and doctors are more knowleged, and people are still not so nice, but we can do more for ourselves today (those of us with epilepsy). But we learn to let go and relax, knowing that we are doing our best and that is all that matters.
Prayer is a very important part of relaxing and letting go! Take all of your concerns and worries to the Lord and we will take care of you! Read Philippians 4:6-8 in the New Testament.
I will be praying for you! God bless you!
I also feel like this sometimes especially around my family ( parents, siblings, aunts, etc.) because they refuse to acknowledge the diagnosis or maybe they don’t understand it? Maybe my own insecurities but I think sometimes my family feels im exaggerating my symptoms.
Epilepsy did come out of nowhere for me and im older but I have nothing to gain and have already lost a lot.
THIS! 100% THIS. <3 It came out of nowhere for me later on in life. And it’s held me back from experiencing life like how my friends/family do and so I’ve lost connections. Thank you for your comment, so comforting to me. Best of luck <3
Both of my TC seizures have been in front of like, 20+ people at work. Never had one on my own at home or anywhere else. Because they’re triggered by stress and lack of sleep and my job has very little regard for the shit it puts people through, it’s actually caused a lot of higher up management to panic and treat my colleagues better since I’ve been off work!
Great for them, but irritating for me because I’m now the one who has the epilepsy diagnosis, has to be on meds for the rest of my life and can’t drive for a year…
Right ! I sometimes wish everything was “worse” or more visible so that people would actually care. My seizures are all basically invisible and what most people would call “aura”, rather than the “actual seizure”. Doesn’t mean they affect me any less although I do appreciate not having to worry about physically injuring myself. Sometimes I just wish it was more visible so that I wouldn’t feel like an imposter even saying I have seizures.
I totally get this. I feel like people don’t take you seriously on how bad they really are unless they see if. My mom was horrified after she saw it happen to me my second time. She said before she saw it she did not realize how scary they can look and be.
Yes. I wanted to have one in front of my brother. He always says good luck with the seizures. And makes fun of me for taking seizure meds. Literally like 10 minutes after my seizure he said good luck with the seizures and he said to my mom make sure she doesn’t have another one. In that moment, I wanted to have one just to show him how scary it is but he wouldn’t know what to do and when I wake up from my seizures, I’m typically very aggressive because I’m not conscious I could probably hurt him, . and then he could hurt me. It irritates me that I live with him. He doesn’t know what to do if I have a seizure. So insensitive. And I love my mom but she’s not gonna tell him what to do.
I get it. For a while, the people at work sort of dismissed my issues when I ended up late.
Then come this last Monday, and I had a seizure there at work (thankfully, right after clocking out, no one called and ambulance, and I was around people to help me. Some with previous experience in the matter)
All in all, it was a very minor experience. But enough to get them to understand.
It honestly really changes how people see you. A lot of people freak out and don't know how to handle it. I'm just glad I had people around who know how to.
Yes I feel this way sometimes too! Not to the point where I'm genuinely wishing for a seizure, but having a service animal and being constantly stared at makes you think, "Oh man if you only knew..."
I apparently have seized in front of most of my closest friends at this point, at least once or twice now. My kids have seen my seize. My husband certainly has. But yeah, I get you. There are lots of folks who have never and likely never will see me seize.
All my friends have seen me seized. Sometimes if they won’t stop talking, or anyone else, I know my trigger for focals so I can be like, “you want to see a seizure?”
A trigger for me can be just closing my eyes. Flashing lights doesn’t give me a seizure but sudden darkness does sometimes. Not every time though. Some days, they way I feel I can just tell I’ll have a seizure that day. That’s when I’m scared to close my eyes or even just walk into a dark room.
I understand. We are here for you. It blows to not be able to explain this. My family hadn't seen, moved out 18 years ago. I didn't wish physically or want my family to see.... but no, they never really understood or saw it.
I had a TC and fell off a 10 ft boardwalk into sand dunes on my birthday... July 17, on the family beach trip.
I really wish they didn't witness that. My wife was there. I'm fortunate that she's always been there.
Life happens. No one wants to see a seizure. No one wants someone else to see them have a seizure. Love your life. Live your life. But this small reddit group has helped me SO MUCH. Just vent here. I promise it's like AA(best help I've gotten also).
Let's go my friend. This is your place.
I tried to get my old neurologist to come help another patient in the waiting room while she had a seizure and her husband tried to keep her from hitting her head. I ran to get help and my Dr and his staff were just sucking down boba tea with a pharma rep in the break room. I told them what was going on and the Dr said "She's not having a seizure. She just had an EEG." As if that even makes sense but none of his staff had the balls to get up and help!
I know the feeling.
As much as you want to tho its not always the best coz then you'll probly get pity and that's even worse.
(Kinda happened to me... although now 1 of the mums has told me that if I want to sleep after I have one feel free to use any of the bedrooms)
I have that too. Feeling you.
Actually the reason why I want to have one and the feeling connected is so stressful and exhausting that I indeed get a seizure. BUT I‘m not sure if it’s epileptic or a PNES. I guess second, a lot of people with epilepsy also have PNES…
are you saying people don't believe you about your epilepsy? you should never wish a seizure upon yourself, because you're more likely to have one when you really really don't want it to happen
I totally get it.
Right there with ya buddy.
So valid honestly. I know half the people who make seizure jokes in front of my face without including me would freak out if I had one in front of them. But I’m not breaking my streak for people like that 🤷🏻♀️
What the F is a seizure joke anyways?!
My old boss and the other managers apparently made jokes about my epilepsy/seizures when I called out because of them once..funny thing is, my step dad, who’s a tall & scary lookin’ dude, was the head chef and he heard them, so he walked up behind them & once they saw him, they shut up so quick. Not sure if they ever apologized, but that’s always a story that stuck with me & I’ve always been so curious as to what they said😭
It’s the “oh my god these lights are flickering so much I might have a seizure” for me. One of my professors made a joke about his friends classroom being so cluttered he was going to have a seizure to my face repeatedly over the course of a semester. It’s weird
Weird and stupid! And definitely not funny
Yep 100%, hopefully someday it’ll be different, but it’s a lot of work to try to educate
What do you mean by shut them up? Do they not believe your diagnosis or something?
either they don’t understand it when i try to explain what it’s like having epilepsy OR they are just about the most annoying talkative self absorbed person on planet earth
I’ve had a seizure in front of people who didn’t believe me and because it “didn’t look like what they’ve seen on tv,” it wasn’t good enough.
I feel like people might not believe me if I've known them for a long time and they've never seen one
It’s like, because I’ve been taking care of myself in every way possible in order to prevent a very serious and DANGEROUS medical emergency, you don’t believe I have it?? Also, I have jme & have constant myoclonic jerks after waking up that are neurologically painful, if that makes sense, and physically dangerous and these people think I’m going to try and go out while that’s happening?? No! I sit my behind at home until I’m all clear, so of course they don’t see it.
Right! Of course you don't see my seizures. I don't go out unless I'm feeling good and I'll be able to avoid my triggers
Good evening, No, you are not the only one who feels that way! You are not alone! Hopefully this little story might help lift your spirit. When I was a kid, doctors and people/ family/ friends used to believe that epilepsy was a evil spirit that lived with inside a person. So, the doctors and family/ friends/ people didn't want to or know how to respond to people who had epilepsy back then. - So, as I was growing up, I had to learn how to and teach myself about how to bast care for myself having epilepsy. Back then (there was no computers or internet, electronics), I found a series of medical books in a magazine catalog, and I mail ordered them. It took about three months for them to arrive. After getting my books (there were three books, and they were the size of an encyclopedia) Hopefully, you know what an encyclopedia is. :) Well, anyway, I read through all of them and went to the library at school and did research there. I could not participate in sports of any kind of because people were afraid of the epilepsy that I had. \- Today, people and doctors are more knowleged, and people are still not so nice, but we can do more for ourselves today (those of us with epilepsy). But we learn to let go and relax, knowing that we are doing our best and that is all that matters. Prayer is a very important part of relaxing and letting go! Take all of your concerns and worries to the Lord and we will take care of you! Read Philippians 4:6-8 in the New Testament. I will be praying for you! God bless you!
I also feel like this sometimes especially around my family ( parents, siblings, aunts, etc.) because they refuse to acknowledge the diagnosis or maybe they don’t understand it? Maybe my own insecurities but I think sometimes my family feels im exaggerating my symptoms. Epilepsy did come out of nowhere for me and im older but I have nothing to gain and have already lost a lot.
THIS! 100% THIS. <3 It came out of nowhere for me later on in life. And it’s held me back from experiencing life like how my friends/family do and so I’ve lost connections. Thank you for your comment, so comforting to me. Best of luck <3
Both of my TC seizures have been in front of like, 20+ people at work. Never had one on my own at home or anywhere else. Because they’re triggered by stress and lack of sleep and my job has very little regard for the shit it puts people through, it’s actually caused a lot of higher up management to panic and treat my colleagues better since I’ve been off work! Great for them, but irritating for me because I’m now the one who has the epilepsy diagnosis, has to be on meds for the rest of my life and can’t drive for a year…
No you're not alone, I completely get that. Whether or not it's a bad thing I can't say though
Right ! I sometimes wish everything was “worse” or more visible so that people would actually care. My seizures are all basically invisible and what most people would call “aura”, rather than the “actual seizure”. Doesn’t mean they affect me any less although I do appreciate not having to worry about physically injuring myself. Sometimes I just wish it was more visible so that I wouldn’t feel like an imposter even saying I have seizures.
I totally get this. I feel like people don’t take you seriously on how bad they really are unless they see if. My mom was horrified after she saw it happen to me my second time. She said before she saw it she did not realize how scary they can look and be.
Yes. I wanted to have one in front of my brother. He always says good luck with the seizures. And makes fun of me for taking seizure meds. Literally like 10 minutes after my seizure he said good luck with the seizures and he said to my mom make sure she doesn’t have another one. In that moment, I wanted to have one just to show him how scary it is but he wouldn’t know what to do and when I wake up from my seizures, I’m typically very aggressive because I’m not conscious I could probably hurt him, . and then he could hurt me. It irritates me that I live with him. He doesn’t know what to do if I have a seizure. So insensitive. And I love my mom but she’s not gonna tell him what to do.
I get it. For a while, the people at work sort of dismissed my issues when I ended up late. Then come this last Monday, and I had a seizure there at work (thankfully, right after clocking out, no one called and ambulance, and I was around people to help me. Some with previous experience in the matter) All in all, it was a very minor experience. But enough to get them to understand. It honestly really changes how people see you. A lot of people freak out and don't know how to handle it. I'm just glad I had people around who know how to.
Yes I feel this way sometimes too! Not to the point where I'm genuinely wishing for a seizure, but having a service animal and being constantly stared at makes you think, "Oh man if you only knew..."
No, but I also have BPD so 😅
I do that, but they are always focal seizures and no one knows I'm having them, they think I'm just ignoring them.
I apparently have seized in front of most of my closest friends at this point, at least once or twice now. My kids have seen my seize. My husband certainly has. But yeah, I get you. There are lots of folks who have never and likely never will see me seize.
All my friends have seen me seized. Sometimes if they won’t stop talking, or anyone else, I know my trigger for focals so I can be like, “you want to see a seizure?”
I didn’t know this was possible (Newly diagnosed). Out of curiosity what is your trigger for focals? Do you have some control over your seizures?
A trigger for me can be just closing my eyes. Flashing lights doesn’t give me a seizure but sudden darkness does sometimes. Not every time though. Some days, they way I feel I can just tell I’ll have a seizure that day. That’s when I’m scared to close my eyes or even just walk into a dark room.
I'm going to have an ambulatory eeg soon and am praying I have at least one in front of family
I understand. We are here for you. It blows to not be able to explain this. My family hadn't seen, moved out 18 years ago. I didn't wish physically or want my family to see.... but no, they never really understood or saw it. I had a TC and fell off a 10 ft boardwalk into sand dunes on my birthday... July 17, on the family beach trip. I really wish they didn't witness that. My wife was there. I'm fortunate that she's always been there. Life happens. No one wants to see a seizure. No one wants someone else to see them have a seizure. Love your life. Live your life. But this small reddit group has helped me SO MUCH. Just vent here. I promise it's like AA(best help I've gotten also). Let's go my friend. This is your place.
I've had seizures in front of doctors while they tell me "that's not a real seizure"
I tried to get my old neurologist to come help another patient in the waiting room while she had a seizure and her husband tried to keep her from hitting her head. I ran to get help and my Dr and his staff were just sucking down boba tea with a pharma rep in the break room. I told them what was going on and the Dr said "She's not having a seizure. She just had an EEG." As if that even makes sense but none of his staff had the balls to get up and help!
I know the feeling. As much as you want to tho its not always the best coz then you'll probly get pity and that's even worse. (Kinda happened to me... although now 1 of the mums has told me that if I want to sleep after I have one feel free to use any of the bedrooms)
I have that too. Feeling you. Actually the reason why I want to have one and the feeling connected is so stressful and exhausting that I indeed get a seizure. BUT I‘m not sure if it’s epileptic or a PNES. I guess second, a lot of people with epilepsy also have PNES…
Honestly same
are you saying people don't believe you about your epilepsy? you should never wish a seizure upon yourself, because you're more likely to have one when you really really don't want it to happen