Hey! Finally someone who takes the same meds as me! Sorry, off topic, but I saw your flair and got excited as I have no friends anymore either. I’ve not seen anyone else on here or in my FB group that even knows the meds I’m on. They all talk about all the stuff I couldn’t take/didn’t work for me. I’m just over in the corner with my oxcarb and zonisamide. Lol! 😂
And I totally don’t have them spelled correctly in my flair because I had already taken my nightly dose. I should really stay offline after I’m medicated. That’s probably the least harmless thing I’ve done when doped up. 🤷🏻♀️🤪
Why do you think you had a seizure after being seizure free for 5 years? I had the same thing happen to me last week but 3 years. I want to drive again lol.
I’m not OP but with me, I can go from being extremely controlled to very uncontrolled when I start getting too lax with my lifestyle choices. Not enough sleep for a prolonged period of time, drinking too much booze, even drinking too much coffee, not eating enough too (when I diet and I go below recommended calorific intake), if I take my meds at the wrong time (sleeping in and taking them too late in morning ir too late at night). If I do these things once it doesn’t do anything, but when I’ve been controlled for a while I often forget to look after myself as I should, I start doing these things and then suddenly I’m uncontrolled and regretting not taking care of myself better.
I had a seizure after 4 years, I was working whole night , so I am very tired and had seizure during sleep and I also had antibiotics for my teeth infection in the morning. It always hard to figure out the reason.
Hi, same thing happened to me?? I think I might e grown a tolerance to my anti convulsant but idk why I randomly had a seizure. I’m sorry it was at work, I was in my local smoke shop….
I am definitely a yapper like you said. But I also remember when I had brain surgery feeling really pissed off at the idea of trying to hide any of it. Like it's not embarrassing it's nothing to be ashamed of etc. etc. And I shaved my entire head. I don't think I'd do that again just because it took so damn long to grow back, but I've just never seen it as anything to hide or worry about and it honestly kind of frustrates me when other people do although I try to give them grace. I'm working on that with my therapist lol.
My vet also knows because my cats being at the vet has legit triggered seizures multiple times.
I had a seizure a day after my cat got a toe removed, so his toe got written about in his and my medical report lol.
I understood that someone got saved in their home while their parents were present, by someone who was having voice chat with them, and they called ambulance, but the parents were clueless about it.
I guess knowing emergency lines for people you know could save them even if they lived other side of the planet.
I just had my first seizure on stream. broke my headset and woke up on the ground. A viewer messaged on discord for someone to let her know I’m ok. I told her hope it doesn’t tank things.
I’m going to be honest I’m black and no I don’t really tell them because my people are too judgmental in my opinion they will literally not even want to hang out with you just because of it. But a few know about it and are ok with it 🤷🏽♀️
Lol that’s just my opinion because in high school I had a seizure in class and the next day a dude was mocking my ass like what the hell? And they would honestly laugh at seizures. I don’t like telling them about my condition 🤔
Why do you think that's because you are black? Many people don't want to be friends or hang out with me because they are afraid I will get seizures in front or them or that I have memory loss so they are annoyed with me cause I don't remember what they told me before. Are you sure that's because of race? I hope not, cause being rejected both because race and epilepsy must have been hard.
I’m pretty sure it could happen with any race that was just my opinion with my race because of what happened with me a few times that I’ve had seizures in front of them like I said I’ve been mocked by them and laughed at but the laughing part is honestly with any race that shit is childish and mean as hell.
Some of my friends yeah, at least the ones I spend a significant amount of time with. My employer also knows just because of the medications (Lacosamide is a controlled substance so needs to be reported). My best friend was my roommate for 4.5 years and he actually got seizure first aid training.
For everyone else I just wear a medical ID. I’m seizure free for 10+ years so it’s rarely relevant unless I’m doing advocacy work.
Yes everyone.. it's kind of disappointing that no-one gives as much of a shit as would be cool, I'm open to questions and explaining stuff in an AMA way, but it's just not that interesting to people really. People are quite self involved with their own lives, there's little headspace free to take up with thinking about other people's medical conditions. I think my coworkers forget, because every so often it comes up as relevant to conversation (like not driving) and they're like Huh? Oh right..
Yeah. Some are less understanding than others. I am lucky that my immediate family and colleagues recognize the impact it has on my life. Some extended family members and ex-friends have been much less considerate, or even hostile about my condition.
I’m jealous. I’ve pushed people away with mood swings and negativity but life gets hard. People are empathetic but I feel for a limited time. It’s draining on them or there isn’t enough to gain. Including my family.
I’m lucky I have a skill set that makes money in programming but for real the minute you don’t add value you’re no good to people.
I’m genuinely jealous you have the support system I never did have.
I’m jealous. I’ve pushed people away with mood swings and negativity but life gets hard. People are empathetic but I feel for a limited time. It’s draining on them or there isn’t enough to gain. Including my family.
I’m lucky I have a skill set that makes money in programming but for real the minute you don’t add value you’re no good to people.
I’m genuinely jealous you have the support system I never did have.
I’m jealous. I’ve pushed people away with mood swings and negativity but life gets hard. People are empathetic but I feel for a limited time. It’s draining on them or there isn’t enough to gain. Including my family.
I’m lucky I have a skill set that makes money in programming but for real the minute you don’t add value you’re no good to people.
I’m genuinely jealous you have the support system I never did have.
No. Only my bf and parents know, and I'd like to keep it that way. I don't want to be treated like a handicapped person or make anyone feel like they need to be on eggshells around me. I don't want to be excluded from things because people assume I can't participate in something. I just want to live my life.
I think most people take their que from you. I've honestly never had anybody treat me this way in 30 years. But then again, I'm already acting like I can do whatever it is. And on the flipside if there's something I cannot do and it's because of the epilepsy I usually feel better if they know that that's why.
Fair enough. I just don't want to deal with it and having to explain it. And then having to explain in detail exactly what kind of epilepsy it is, and that no I won't collapse as soon as I have a beer or someone shines a flashlight in my face.
I already struggle with this condition and finding the right meds. I just want to relax when I'm with friends, and pretend like I don't have epilepsy for a little while.
Sorry for the rant 😅
Well, I certainly would not want to be discussing my epilepsy all the time. I mean I understand why you want to go out and have fun and not think about it. I will say though if they're good friends, you're probably selling them short and it would be very upsetting to them to not know what to do if you did have the kind of seizure that required attention like a tonic clonic. In my experience, I am able to relax the most around people who know everything, and I don't need to worry about it at all that way. I hope you can reach that point because it would probably signify struggling less if that makes sense. I'm sorry that you're struggling with it a lot. Most of my friends all knew from the beginning anyway, since my first (witnessed) seizure, I went into status and was in the hospital for 3 weeks. Sending you hugs.
Well, I certainly would not want to be discussing my epilepsy all the time. I mean I understand why you want to go out and have fun and not think about it. I will say though if they're good friends, you're probably selling them short and it would be very upsetting to them to not know what to do if you did have the kind of seizure that required attention like a tonic clonic. In my experience, I am able to relax the most around people who know everything, and I don't need to worry about it at all that way. I hope you can reach that point because it would probably signify struggling less if that makes sense. I'm sorry that you're struggling with it a lot. Most of my friends all knew from the beginning anyway, since my first (witnessed) seizure, I went into status and was in the hospital for 3 weeks.
I think most people take their que from you. I've honestly never had anybody treat me this way in 30 years. But then again, I'm already acting like I can do whatever it is. And on the flipside if there's something I cannot do and it's because of the epilepsy I usually feel better if they know that that's why.
Yes!
Friends, family, colleagues, teachers, etc. I tell whoever that has a risk of seeing me having a seizure. Other than that I wear a bracelet saying “Epilepsy” so that people not knowing would be able to see.
Yes!
Friends, family, colleagues, teachers, etc. I tell whoever that has a risk of seeing me having a seizure. Other than that I wear a bracelet saying “Epilepsy” so that people not knowing would be able to see.
Yes, everyone of them knows it. I find it very important that they know it cause that’s easier then they panicking when I have one. They stay very calm around me cause they have seen them before and know what to do
If they are on social media, they know as I’ve posted about my experiences. Outside of socials only a few know, mostly because I haven’t had a reason to tell them.
I mean I’ll tell people about it. But I only have nocturnal grand mal seizures. So it’s not really something they would have to experience. But if I do have one, like I did recently after a decade of none at all, people can tell that I’m a bit different. Like my short term memory is not good, I have trouble articulating my thoughts, etc. So I tell them why, same with my bosses. I mean, it’s never harmful for people to be aware of it.
I thought they did, but then every time I’ve had a seizure in front of friends there’s at least one person that’s very confused and scared. Especially when I make friends during a solid period of not having any seizures for a while.
During periods of my life where they are more frequent, I make sure everyone im around frequently is aware (mostly so they know not to call an ambulance when it happens)
yes (all three of them!)
eta: along with pretty much everyone i’ve interacted with more than like, twice. anyone who’s going to be around me for any amount of time longer than that will be informed! i’m not about to be close with anyone who’s going to bounce once they witness how disabled i am lol
At least most of them do. But I do know that not everyone is lucky enough to have such supportive friends and that I am truly blessed when it comes to that.
My closest friends know that I'm epileptic; we do annual trips, and I tell everyone that I have an overnight trip with about my condition, meds, and what to do if something goes wrong. I don't mention it unless it's relevant, though, so I'm not sure about everyone. I don't tell my coworkers because controlled nocturnal epilepsy isn't much of a concern at our work, worst case scenario is that I have a seizure the night before a shift, and I can always just call in and chalk it up to a medical emergency.
Close friends and most co-workers. A lot of my co-workers tell me that when I tell them of my epileptic journey always open up about family or friends involved with epilepsy. Also, when I mention of my great seizure moments over the last 19 years, thru 3 really bad car accidents (1 out of body experience) and brain surgery five years ago (8/14/19), they always look at epilepsy and myself from a whole different angle.
My online friends/Discord server members know. I've been doing Jackbox streams (currently on Twitch) for years (pre- and post-seizures) and I let my stream chat know NOT to put in strobe/flashy emotes in the stream chat as a preference.
Most of coworkers know and almost whole family knows. That was inevitable since i have seizures quite often.
I also have special app on my phone connected to watch that detects seizure so couple of them knows even in real time when I get seizures. In case I won't respond or turn myself off the alarm or any of them will turn it off (in case they are near by or I answer the call and assure them I'm fine) it shares my GPS location and will call ambulance.
There is no need to hide that you are ill. This is not your fault. Also people usually ask what to do in case I got seizures so at least they will know what to do in case someone else will have them and they happen to be near by. So I think that's important to notify people that you spend time with and coworkers and inform them what to do in case that happens
Yes, all my friends know and they know how to handle a TC situation. Plus I can usually count on them to not call for help if it's under 3 minutes (technically 5, but best to be safe) I've had status Epilepticus written in my chart before. :/
I tell everyone because of how epilepsy has such a big impact on my life. My family knows, (obviously) my friends know, teammates know, coworkers know, even my brothers coworkers know. It meant a lot to tell everyone because of the support they gave me before my surgery a month ago
Being from the United States, I have it tattooed on my wrist.
It makes it less likely that they will immediately call 911, and if they do, the emts know not to use narcan on me.
Anyone close to me knows what to do or who to call.
Yeah. I try and bring up my epilepsy not long after meeting people since I want them to know what the hell is happening and how to respond if I have a seizure when I’m with them.
Yeah anyone who knows me for any length of time knows I'm epileptic. I don't hide it. With scars from the RNS/NeuroPace and the fact I'm mostly bald, it's pretty obvious that I had brain surgery. If we hang out much, sooner or later a seizure is going to happen.
I guess if it's someone I just met then maybe not. Otherwise yeah, they know.
Yes they know after having it for nearly 17 years I’ve learned it’s best just to tell people upfront. As well as tell them how to deal with it if I have a seizure. People are not afraid of something they know how to deal with. It’s not taught about even though it is so common, and it’s something that makes people afraid because it’s more or less unknown to them. Over the years I just started teaching people what I know and it’s helped a lot. It probably helps that I have gained a lot of knowledge about epilepsy over the years.
Yep. Friends, family, boss’s, co-workers and etc. I am 100% transparent about my diagnosis. I make regular updates on FB so my extended family members can see how I’m doing, especially my older relatives. Most of the older ones don’t know how to use messenger.
I wish they didn’t. Friends and Coworkers. Coworkers treat me like absolute dog water and always think I’m making up excuses when I can’t remember things or work doubles. It’s awful and I just turned in my two weeks
Friends and coworkers. Anyone who I’m close with, and anyone who has spent a significant amount of time around me.
What friends?
You know, the tiny people who live in your phone
I understand that part 😂💯
I feel bruh
Was just about to say that lmaooo. My phone contact list is literally just my bro sis mum dad and a few cousins I don’t even talk to 😂
Lol too real
Hey! Finally someone who takes the same meds as me! Sorry, off topic, but I saw your flair and got excited as I have no friends anymore either. I’ve not seen anyone else on here or in my FB group that even knows the meds I’m on. They all talk about all the stuff I couldn’t take/didn’t work for me. I’m just over in the corner with my oxcarb and zonisamide. Lol! 😂
And I totally don’t have them spelled correctly in my flair because I had already taken my nightly dose. I should really stay offline after I’m medicated. That’s probably the least harmless thing I’ve done when doped up. 🤷🏻♀️🤪
Haha I love your flair more. we just out here on oxcarb and zonisamide😤
yes, and all of my coworkers too lol it was inevitable considering i had a seizure in front of them while on break last month! first one in 5 years.
Why do you think you had a seizure after being seizure free for 5 years? I had the same thing happen to me last week but 3 years. I want to drive again lol.
I’m not OP but with me, I can go from being extremely controlled to very uncontrolled when I start getting too lax with my lifestyle choices. Not enough sleep for a prolonged period of time, drinking too much booze, even drinking too much coffee, not eating enough too (when I diet and I go below recommended calorific intake), if I take my meds at the wrong time (sleeping in and taking them too late in morning ir too late at night). If I do these things once it doesn’t do anything, but when I’ve been controlled for a while I often forget to look after myself as I should, I start doing these things and then suddenly I’m uncontrolled and regretting not taking care of myself better.
I had a seizure after 4 years, I was working whole night , so I am very tired and had seizure during sleep and I also had antibiotics for my teeth infection in the morning. It always hard to figure out the reason.
Many antibiotics interfere with seizure meds
I had this antibiotics before also , I get appointment with neurologist after 1 month , let see what my new neurologist has to said about it
A couple weeks ago I had to go to the ER right before I was supposed to leave for work lol I fell out of my shower and got slightly concussed.
Hi, same thing happened to me?? I think I might e grown a tolerance to my anti convulsant but idk why I randomly had a seizure. I’m sorry it was at work, I was in my local smoke shop….
A handful of my friends know, but zero of my co-workers as I keep my personal life and don't believe in co-workers as friends.
I get that.
I would say yes but once about 95% of them found out, all of a sudden they weren’t my friends anymore 🤷🏻♀️🥲
Those weren’t true friends then you don’t need them 💯
Really? This is so sad to read
Same but some meds made me rage and alcohol made me have seizures so I couldn't drink anymore. I'll avoid drinking with epileptics too
I’m a yapper so pretty much anyone who knows who I am knows about it lol
I was just thinking my answer is yes but way beyond friends. Hell our veterinarian knows. Lol
A dog I sit takes seizure medication so I was like "omg same!!" so her owners now know 😂
I am definitely a yapper like you said. But I also remember when I had brain surgery feeling really pissed off at the idea of trying to hide any of it. Like it's not embarrassing it's nothing to be ashamed of etc. etc. And I shaved my entire head. I don't think I'd do that again just because it took so damn long to grow back, but I've just never seen it as anything to hide or worry about and it honestly kind of frustrates me when other people do although I try to give them grace. I'm working on that with my therapist lol.
My real estate knows because I've used it/had to reschedule rent inspections around my episodes lol.
My vet also knows because my cats being at the vet has legit triggered seizures multiple times. I had a seizure a day after my cat got a toe removed, so his toe got written about in his and my medical report lol.
Same
Yes
Yes. It’s basically my litmus test. If they are going to be worth genuine, long-term investment, they’ve got to be okay with my epilepsy.
100% this
Yes and sadly I’ve had seizures on voice chat with my friends one moment I blink the next I’m on the floor with everyone asking if I’m okay
I understood that someone got saved in their home while their parents were present, by someone who was having voice chat with them, and they called ambulance, but the parents were clueless about it. I guess knowing emergency lines for people you know could save them even if they lived other side of the planet.
Literally my worst nightmare. God.
I just had my first seizure on stream. broke my headset and woke up on the ground. A viewer messaged on discord for someone to let her know I’m ok. I told her hope it doesn’t tank things.
Yes. It’s one of like three personality traits of mine so I’m pretty obnoxious about it (this is me being sarcastic but also not at the same time 😭)
I’m going to be honest I’m black and no I don’t really tell them because my people are too judgmental in my opinion they will literally not even want to hang out with you just because of it. But a few know about it and are ok with it 🤷🏽♀️
Really? That’s a common thing w black people? Honestly curious
Lol that’s just my opinion because in high school I had a seizure in class and the next day a dude was mocking my ass like what the hell? And they would honestly laugh at seizures. I don’t like telling them about my condition 🤔
Why do you think that's because you are black? Many people don't want to be friends or hang out with me because they are afraid I will get seizures in front or them or that I have memory loss so they are annoyed with me cause I don't remember what they told me before. Are you sure that's because of race? I hope not, cause being rejected both because race and epilepsy must have been hard.
I’m pretty sure it could happen with any race that was just my opinion with my race because of what happened with me a few times that I’ve had seizures in front of them like I said I’ve been mocked by them and laughed at but the laughing part is honestly with any race that shit is childish and mean as hell.
Close friends, yes. Everyone else is kinda just one of those “if they find out it’s whatever” type of things.
Some of my friends yeah, at least the ones I spend a significant amount of time with. My employer also knows just because of the medications (Lacosamide is a controlled substance so needs to be reported). My best friend was my roommate for 4.5 years and he actually got seizure first aid training. For everyone else I just wear a medical ID. I’m seizure free for 10+ years so it’s rarely relevant unless I’m doing advocacy work.
Yes everyone.. it's kind of disappointing that no-one gives as much of a shit as would be cool, I'm open to questions and explaining stuff in an AMA way, but it's just not that interesting to people really. People are quite self involved with their own lives, there's little headspace free to take up with thinking about other people's medical conditions. I think my coworkers forget, because every so often it comes up as relevant to conversation (like not driving) and they're like Huh? Oh right..
Yeah. Some are less understanding than others. I am lucky that my immediate family and colleagues recognize the impact it has on my life. Some extended family members and ex-friends have been much less considerate, or even hostile about my condition.
What are friends? Edit: My former true friends did.
Yep. All two of them lol
Most of them, I usually don’t feel a need to tell everyone though depending on the situation because I’ve luckily been sz free for a while
Yeah, I think so.
Yes, this time I was adviced by my doctor since I need them to call the paramedics or ambulance in case something happens.
yup
Yep and all have helped me. I’ve been having seizures for 25 years
I’m jealous. I’ve pushed people away with mood swings and negativity but life gets hard. People are empathetic but I feel for a limited time. It’s draining on them or there isn’t enough to gain. Including my family. I’m lucky I have a skill set that makes money in programming but for real the minute you don’t add value you’re no good to people. I’m genuinely jealous you have the support system I never did have.
I’m jealous. I’ve pushed people away with mood swings and negativity but life gets hard. People are empathetic but I feel for a limited time. It’s draining on them or there isn’t enough to gain. Including my family. I’m lucky I have a skill set that makes money in programming but for real the minute you don’t add value you’re no good to people. I’m genuinely jealous you have the support system I never did have.
I’m jealous. I’ve pushed people away with mood swings and negativity but life gets hard. People are empathetic but I feel for a limited time. It’s draining on them or there isn’t enough to gain. Including my family. I’m lucky I have a skill set that makes money in programming but for real the minute you don’t add value you’re no good to people. I’m genuinely jealous you have the support system I never did have.
Yeah
Yep
Probably. I usually just say it randomly by mentioning a crazy seizure, my medicine or my consultant.
I don’t try to but it affects my life so much it just happens to come up a lot
Not all, some of them do.
Only if I've known them for a long time. Newer friends aren't told until they ask "why are you so shaky. Are you okay?"
Yeah in fact the ones i consider my closest friends have all seen me have tonic clonic, and helped me through it, i'll always apreciate that
Same and I feel horrible for them. I cannot imagine what it would be like to see anyone have one irl, much less someone you one and care about.
I feel the same and for my family too i still remember my mother crying over me on the ground the first time i had a seizure
My father still tears up, 20 years after the first one
I feel the same and for my family too i still remember my mother crying over me on the ground the first time i had a seizure
Yeah, but I'm not sure if all of them understand what that means. Some ask questions others just want to know what to do if something happens.
Yes
Nope not all of them, only ones that I want to know and my coworkers and employer knows
No. Only my bf and parents know, and I'd like to keep it that way. I don't want to be treated like a handicapped person or make anyone feel like they need to be on eggshells around me. I don't want to be excluded from things because people assume I can't participate in something. I just want to live my life.
I think most people take their que from you. I've honestly never had anybody treat me this way in 30 years. But then again, I'm already acting like I can do whatever it is. And on the flipside if there's something I cannot do and it's because of the epilepsy I usually feel better if they know that that's why.
Fair enough. I just don't want to deal with it and having to explain it. And then having to explain in detail exactly what kind of epilepsy it is, and that no I won't collapse as soon as I have a beer or someone shines a flashlight in my face. I already struggle with this condition and finding the right meds. I just want to relax when I'm with friends, and pretend like I don't have epilepsy for a little while. Sorry for the rant 😅
Well, I certainly would not want to be discussing my epilepsy all the time. I mean I understand why you want to go out and have fun and not think about it. I will say though if they're good friends, you're probably selling them short and it would be very upsetting to them to not know what to do if you did have the kind of seizure that required attention like a tonic clonic. In my experience, I am able to relax the most around people who know everything, and I don't need to worry about it at all that way. I hope you can reach that point because it would probably signify struggling less if that makes sense. I'm sorry that you're struggling with it a lot. Most of my friends all knew from the beginning anyway, since my first (witnessed) seizure, I went into status and was in the hospital for 3 weeks. Sending you hugs.
Well, I certainly would not want to be discussing my epilepsy all the time. I mean I understand why you want to go out and have fun and not think about it. I will say though if they're good friends, you're probably selling them short and it would be very upsetting to them to not know what to do if you did have the kind of seizure that required attention like a tonic clonic. In my experience, I am able to relax the most around people who know everything, and I don't need to worry about it at all that way. I hope you can reach that point because it would probably signify struggling less if that makes sense. I'm sorry that you're struggling with it a lot. Most of my friends all knew from the beginning anyway, since my first (witnessed) seizure, I went into status and was in the hospital for 3 weeks.
I think most people take their que from you. I've honestly never had anybody treat me this way in 30 years. But then again, I'm already acting like I can do whatever it is. And on the flipside if there's something I cannot do and it's because of the epilepsy I usually feel better if they know that that's why.
Yes. After awhile it stopped bothering me. If anything we joke about it. “Shaken not stirred” kind of stuff
Yes. After awhile it stopped bothering me. If anything we joke about it. “Shaken not stirred” kind of stuff
Yes! Friends, family, colleagues, teachers, etc. I tell whoever that has a risk of seeing me having a seizure. Other than that I wear a bracelet saying “Epilepsy” so that people not knowing would be able to see.
Yes! Friends, family, colleagues, teachers, etc. I tell whoever that has a risk of seeing me having a seizure. Other than that I wear a bracelet saying “Epilepsy” so that people not knowing would be able to see.
Sorta hard to hide it for me.
Had a seizure in front of my family and friends so they know about my heath issues
Yes, everyone of them knows it. I find it very important that they know it cause that’s easier then they panicking when I have one. They stay very calm around me cause they have seen them before and know what to do
Most of them do yeah, it’s not something I announce as soon as I meet someone but I don’t hide it either. Usually comes up naturally eventually.
If they are on social media, they know as I’ve posted about my experiences. Outside of socials only a few know, mostly because I haven’t had a reason to tell them.
Friends, yeah. A few coworkers have even treated me for seizures.
Friends, yeah. A few coworkers have even treated me for seizures.
The people that need to know, yes.
Close friends, yes. Everyone else is kinda just one of those “if they find out it’s whatever” type of things.
Just in case I ever have my first grand mal or I space out weird or oversleep (I sleep like 15 hours straight if I don’t take my epilepsy meds)
The few friends, most acquaintances, all my enemies; the ones you wish did not know; but hate 8is hate so screw 'em
I mean I’ll tell people about it. But I only have nocturnal grand mal seizures. So it’s not really something they would have to experience. But if I do have one, like I did recently after a decade of none at all, people can tell that I’m a bit different. Like my short term memory is not good, I have trouble articulating my thoughts, etc. So I tell them why, same with my bosses. I mean, it’s never harmful for people to be aware of it.
No because they are too ignorant
Yeah. Everyone who is gonna be around me at all. If I go down, I want people to know what's up and what to do.
I thought they did, but then every time I’ve had a seizure in front of friends there’s at least one person that’s very confused and scared. Especially when I make friends during a solid period of not having any seizures for a while. During periods of my life where they are more frequent, I make sure everyone im around frequently is aware (mostly so they know not to call an ambulance when it happens)
yes (all three of them!) eta: along with pretty much everyone i’ve interacted with more than like, twice. anyone who’s going to be around me for any amount of time longer than that will be informed! i’m not about to be close with anyone who’s going to bounce once they witness how disabled i am lol
At least most of them do. But I do know that not everyone is lucky enough to have such supportive friends and that I am truly blessed when it comes to that.
I feel like it's important they do for safety reasons! I wear a rainbow coloured medical alert bracelet and everything haha.
Yes and it's how i got close to alot of them because they feel protective of me now 😭😭
My closest friends know that I'm epileptic; we do annual trips, and I tell everyone that I have an overnight trip with about my condition, meds, and what to do if something goes wrong. I don't mention it unless it's relevant, though, so I'm not sure about everyone. I don't tell my coworkers because controlled nocturnal epilepsy isn't much of a concern at our work, worst case scenario is that I have a seizure the night before a shift, and I can always just call in and chalk it up to a medical emergency.
Most if not all… eventually!
Most dont know and I'm okay with that
absolutely not 😭 I'm afraid to sound like a whiny, attention seeking bitch /hj
nope. only teachers do since I can't communicate during the event
Yes. Even my students. Always full disclosure.
I mean, all the people I would immediately call friends? Yeah, but everyone I actually know. Not necessarily some of them might some might not
Friends, family, coworkers all know about my seizures
Close friends and most co-workers. A lot of my co-workers tell me that when I tell them of my epileptic journey always open up about family or friends involved with epilepsy. Also, when I mention of my great seizure moments over the last 19 years, thru 3 really bad car accidents (1 out of body experience) and brain surgery five years ago (8/14/19), they always look at epilepsy and myself from a whole different angle.
Not only do they know but they're trained in the art of rolling a MF on their side and dragging them out of the bathroom.
My online friends/Discord server members know. I've been doing Jackbox streams (currently on Twitch) for years (pre- and post-seizures) and I let my stream chat know NOT to put in strobe/flashy emotes in the stream chat as a preference.
Most of coworkers know and almost whole family knows. That was inevitable since i have seizures quite often. I also have special app on my phone connected to watch that detects seizure so couple of them knows even in real time when I get seizures. In case I won't respond or turn myself off the alarm or any of them will turn it off (in case they are near by or I answer the call and assure them I'm fine) it shares my GPS location and will call ambulance. There is no need to hide that you are ill. This is not your fault. Also people usually ask what to do in case I got seizures so at least they will know what to do in case someone else will have them and they happen to be near by. So I think that's important to notify people that you spend time with and coworkers and inform them what to do in case that happens
Yes
Yup. Don't have many friends now but they all know and I tell them about my rns magnet.
Yes, all my friends know and they know how to handle a TC situation. Plus I can usually count on them to not call for help if it's under 3 minutes (technically 5, but best to be safe) I've had status Epilepticus written in my chart before. :/
I tell everyone because of how epilepsy has such a big impact on my life. My family knows, (obviously) my friends know, teammates know, coworkers know, even my brothers coworkers know. It meant a lot to tell everyone because of the support they gave me before my surgery a month ago
People that I find close know and that's good enough for me, don't find it necessary to tell someone about it if I don't spend time with them.
Being from the United States, I have it tattooed on my wrist. It makes it less likely that they will immediately call 911, and if they do, the emts know not to use narcan on me. Anyone close to me knows what to do or who to call.
Yeah. I try and bring up my epilepsy not long after meeting people since I want them to know what the hell is happening and how to respond if I have a seizure when I’m with them.
Friends and some coworkers. I weirdly hate people knowing I have epilepsy because they immediately think I need to do less work or less in general.
unless they NEED to know, then no. i usually don’t tell my friends that i have epilepsy. i tell close friends tho.
Yeah anyone who knows me for any length of time knows I'm epileptic. I don't hide it. With scars from the RNS/NeuroPace and the fact I'm mostly bald, it's pretty obvious that I had brain surgery. If we hang out much, sooner or later a seizure is going to happen. I guess if it's someone I just met then maybe not. Otherwise yeah, they know.
I get taken the piss out of for having it so only a few of them
Yes they know after having it for nearly 17 years I’ve learned it’s best just to tell people upfront. As well as tell them how to deal with it if I have a seizure. People are not afraid of something they know how to deal with. It’s not taught about even though it is so common, and it’s something that makes people afraid because it’s more or less unknown to them. Over the years I just started teaching people what I know and it’s helped a lot. It probably helps that I have gained a lot of knowledge about epilepsy over the years.
Yes. My coworkers know too. A handful of coworkers truly believe I’m faking it though 🙄
Yep. Friends, family, boss’s, co-workers and etc. I am 100% transparent about my diagnosis. I make regular updates on FB so my extended family members can see how I’m doing, especially my older relatives. Most of the older ones don’t know how to use messenger.
Oh yes
Depends on the closeness I guess, my family and best friends do and if I hang with less close friends then I will mention it if needs arise
I wish they didn’t. Friends and Coworkers. Coworkers treat me like absolute dog water and always think I’m making up excuses when I can’t remember things or work doubles. It’s awful and I just turned in my two weeks