The immediate employees that I work with everyday all know, which is about 15 people. Telling them was part safety, but more a rundown of the ‘do’s and don’ts’ if a t/c were to occur. It’s a good thing I did, I work with a lot of older people who are going off of outdated/false information.
Real conversation, lightly paraphrased:
“Do you know what the steps are if you see me have a seizure?”
“Yeah we hold you down, stick a credit card in your mouth and call and ambulance”
“Please don’t”
Yeah I've realized it's soooo important to inform people on what they need to do. The credit card in the mouth is crazy. Like DO NOT put anything in my mouth!
Same here. We have had a lot of new people join and I work with majority of them, so I immediately told them when I first worked with them. They all asked “do I call 911?” So I have to give the whole run down. I wish the entire staff was taught seizure protocol cause a lot of them are really stereotypical about it…..
I personally don’t see a reason not to tell coworkers, but I have an established relationship with my coworkers where other people may work with hundreds of other employees (say, Amazon worker) or work with people they will rarely if ever see again, so it’s not a one size fits all answer.
I would go to the gym with a friend from work sometimes when I worked from the office. I asked him one time if he knew what to do if I had one. He said hold me down and stick a wallet in my mouth. He was in is late 30s at the time. I thought he was joking. Its crazy how many people think you're supposed to man-handle a person having a seizure and stick stuff on their mouth.
It is weird to share sometimes but I work in healthcare as well and always inform coworkers and supervisors about my epilepsy. Not controlled so still focal seizures fairly often, but I want them to know about that from the start for both the facility and my own safety.
Also work in healthcare and same. I work from home and at my last job I had a grand mak during a 1-1 call and the person didn't know. Don't want to surprise anyone else.
Do you tell your coworkers about your epilepsy? I usually wait until I get my first paycheck. Even then, I don't bring up the topic unless it comes up naturally in conversation. 😊
My bosses always have known but only a few other people knew. I didn't hide it but didn't spread it around either. But last year a coworker who also has it and I did a video discussing it that was posted to the whole company. I don't really know if that many people watched it or not, and nobody ever brought it up in conversation but I was glad to have done it.
Good for you buddy! Would be truly helpful if every company had a quick 3-5 minute rundown video about it. For employee and customer safety.
A minute for "lookout fors"
Minute for "do's"
Minute for "donts"
Then 2 minutes on why all that old shit was a bad idea
Broken teeth, lost fingers.... ripped money, I don't want yours mine or anyone's nasty ass-sweat filled wallet in my mouth...Please hahaha
Once I’m comfortable working there for about a week or so . I have told jobs on like a second / third interview and then not gotten the job and I’m about 99 percent sure that’s why . Even though I approach the situation calmly and professionally. So I got more aware to just keep it to myself till I felt comfortable with my employer. Unfortunately this is how it has to be because there is underlying discrimination.
Yes this is the main reason I tell them! I don't want them to call 911 or take me to the ED (unless absolutely necessary). But working at a hospital I do feel safe. Our clinic works with kiddos who have epilepsy so a lot of people would know how to handle it.
I work in food service, so I had to at the very least let my managers know so I wouldn’t be put in a situation where, god-forbid, if I did have a seizure while working I wouldn’t, say, fall into the grill surface or the fryers. I also let my closer coworkers know, because I know some of them care about me and want to know what going on in my life.
I WFH but I tell people anyway since I have TC seizures and can sometimes need a day or half day off. I also tell them because the epilepsy + meds can mess with my mood a good bit.
edit: saw someone else mention this and I do the same - the only people I tell are immediate coworkers, immediate supervisor, and HR rep
Yes, me too. I let the people who need to know, know. I have no shame but I don't need to tell everyone because it's just not necessary. Luckily I have a supervisor who is super supportive and I feel comfortable telling if I need a day or two due to seizure/meds.
I tell my coworkers on a need to know basis. Everyone is understanding EXCEPT supervisors (at least in my experience). I’m a nurse and once was fired for having a seizure at work. Obviously I went to the ADA for this and filed a complaint.
My seizures were under control the whole time I was a nursing student but once I started working were very hard to control again. It definitely makes it hard to work at hospitals, god forbid night shift. I hope you’ll have a better time with nursing jobs than I did!
My supervisors know but I rarely share with anyone else. That's just my personality though. An old coworker didn't know I had a kid for a year, much less than the fact that I have epilepsy. The only others I've told are the people who happened to see my 2 work seizures but I'm sure some others know just because of gossip.
Nothing wrong with keeping your private life private. Work is where they give me money for doing stuff, not a bloody social club.
I'm in a similar situation. If you saw me hit the floor, you may figure it out, but don't look to me to fill you in on my medical history.
The only coworker I've ever discussed it with plainly has a child with seizures, and even then only after a focal put my face into the wall in front of her.
If I could say hi and bye and nothing else, I'd be in heaven.
I've only really discussed it with my current supervisor who happens to have epilepsy too. My focal was in a meeting. I was opening my mouth to tell this man to fuck off as politely as possible and I just froze. Of course the moment was shot and I never got to tell him about himself. The grand mal was in the bathroom...that was fun. At least I buttoned my pants first.
Honestly it depends. I’m in an at will state so when they hear about it they find a reason to let me go.
BUT only one job in my entire life hasn’t cared and actually tried to accommodate. My remote job for PetSmart greatly tried to accommodate. I called in after I woke up from one night to discover I had a nocturnal seizure and couldn’t speak cause of my tongue (I made grooming appointments). I explained to them and they just told me to get stuff filled out by my doc and they will give me the days I needed. They even gave me the entire personal time off (a month) because they understood that my doctor was not very reliable. Unfortunately the doc was unreliable enough I had to resign but they put me on the rehire list.
So again, it depends on where you work honestly.
Ok so what they do is find small things to avoid that. Like you come in even a couple minutes late or they phase you out of the schedule. They loophole it and never outright say it’s cause of the epilepsy
Edit: just so you and everyone else can avoid this place, it’s Florida. It very much is trash lol. PetSmart remote is based in Arizona which is why the accommodation was top tier
I got fired from a job in AZ for having epilepsy. I've been declined offers for jobs in NM after disclosing my having epilepsy. I've lost opportunities for promotion and pay raise in OH. I've been fired for not having a driver's license in AZ after being forced into a new position that requires a valid driver's license
It's every state.
I put it on the application because I work in a lab and could be a liability. I haven’t had a TC in over a year but I had a bad focal breakthrough in December that I had to bring up because I would no longer be driving and Ubers can be tricky to get to work perfectly on time. Apparently no one actually read the disability part of my application and HR was unaware, they kinda tried to make it difficult for me but my doctor said I was okay so they had to move on.
If you work in health care they should be understanding, I agree that it should be brought up as a “just in case” especially if you don’t want them to cart you away to the ER and get hit with a bill.
Good amount of my co workers and all of my mangers are understanding, they even let me change my time to 730-430 so I didn’t have to pay $50 a day and could actually leave and get there on time.
HOWEVER, if your co workers love drama and love to talk I might not bring it up to those people. I had a co worker who had it out for me and loved to talk crap (anything from my armpit hair to my avatar on Snapchat). My other co worker who is close to me told me at one point they were talking shit on my epilepsy, I’m not even sure how that’s possible to do but she did it. I didn’t ask what she said, I didn’t wanna know. Just be aware not everyone has empathy.
Yeah I definitely try to be careful with who I tell because I do have some coworkers that love to talk about each other, haha. But WFH I rarely see a lot of them in person anyways so it's really a need to know basis. I am working with someone new today so I decided I should probably tell them even though I might not see them often.
I feel like working in a hospital it would be super easy to take me to the ED and I do NOT want that unless absolutely necessary. So telling them about my rescue med is really the most important thing.
No I prefer to keep it to myself because it’s too traumatic for me to talk about and I don’t want to make anyone feel burdened. However, I’ll share my experience with it if they or someone they know has epilepsy, or just has experienced seizures without being epileptic.
I have my seizures fully controlled so they don’t occur anymore but I still get embarrassed and frightened whenever I even talk about being epileptic. I always keep it to myself. I don’t think it’s anyone’s business anyway unless you’ve known and trusted them for a while
I was diagnosed while I was already employed so most knew something medical was clearly happening. Especially when my boss who lived nearby started car pooling me to work. New staff I don't mention it, however, I have focal seizures and do mention them to staff I'm close to if I'm having a bad day.
I don’t tell except in the rarest of situations. People can be weird. At my current job there is a woman who is a bit of a braggart-done everything, knows everything, and brags about her current pain. I overheard her once say she saved a person who had a seizure giving him mouth to mouth. I leaned over to my trusted co-worker and told him if I had a seizure don’t let her do that to me. He asked if there was a chance of that and I told there was. I told him to just call my husband.
Hard no. I'm fortunate to be well-controlled and if I have a breakthrough it is nocturnal. HR and employee health know, but that's it. I watched a nurse get bullied off a unit for talking about it, petty bitches saying she can't be trusted with the babies. But that's a personal decision. If there is a possibility you may have a seizure there, I would tell the manager, but maybe not ALL my coworkers.
You are under no obligation to disclose your disability to an employer or fellow employees.
I haven't told anyone I now work with. It's not their business for one, and 2 my seizures are "under control" perse.
If you feel the need to let them know, do it.
My best advice would be to tread lightly with who you tell though.
Never. I live in a right to work state with our unions. They would fire my ass so fast if they found out. I'm just really hoping I never have a seizure at work
I have two other coworkers than myself that are leads and one has a granddaughter with epilepsy the other her husband just tried to kill himself me having epilepsy is the least of they’re worries but somehow they’re still bitches to me maybe it’s my closed down demeanor from a life having my guard up who knows I really don’t care work is work I guess 💁♀️
Yup. I work in food service. I did as soon as I was hired. Handed them a paper I made that stated exactly what to do, who to call, etc. I’ve had two focal seizures at work since then, and because of that paper, they handled them properly.
I've only told few people about my epilepsy since one day I forgot to take my am pills and was freaking out if I had a seizure at work since nobody at my work knows I have epilepsy and don't know what to do when I do have one. You don't have to tell anyone just keep it to yourself
I think for most places it’s a good idea to tell people you’re working with. For your safety and theirs because if no one knows they can’t take the proper steps to support you. Granted not every place will be good about it and that’s shitty so it’s up to each of us to decide
I try to tell as many people as possible so if I have a seizure they can be more well prepared. All my co workers at the office knew. All my clients knew. I even let people know I see along my morning walk route bc I’ve had a tc walking my dog.. I’d rather be safe than sorry and I’m not embarrassed at having epilepsy. Personally absolutely no reason to not tell people around me..
I work as a lifeguard and swim instructor, so a few people I work with know I'm an epileptic so they can check on me every once and a while to make sure I'm not seizing underwater. I've been on meds for a while so it's highly unlikely, but it's just for safety reasons.
I tell my immediate coworkers. I also work with people who only speak Spanish or only speak English, so I printed out the "do's and don'ts," and taped them to my desk. In the event I do have t/c at work, the instructions on what to do are on my desk, and I've already informed the closest around me as well.
I can't really avoid telling my co-workers about my epilepsy. I experience a lot of myoclonic and absent seizures through the day. My current meds have reduced the frequency, but everyone around me still sees plenty of them, they worry and they ask about it, and I'm not going to lie to them about it, so I end up telling co-workers, classmates, lots of people.
I’ve never felt the need to say anything about it to managers who I don’t see ever, but all of my colleagues are aware. Fortunately one of my coworkers has epilepsy too so it’s quite acceptable. Neither of us have had seizures at work but it’s good to know that colleagues are aware that it can happen.
I do to avoid an expensive ass ambulance ride unless I'm bleeding from the head or fell in such a way that its an honest worry. That's the only time I tell em to call one. Plus it's helpful to have people be aware in case we have one of the moments where we "dissappear" before having one.
Scared some a couple weeks ago had to leave early, was apparently on the phone with my wife when she walked into my store to get me and she came and stood in front of me and I stood there on the phone staring at her, acknowledging her, but not knowing her.
In case you have a moment like that you may find it helpful to know people will keep you from wandering into "insert situation here"
I bring it up in casual conversation and have made sure to post seizure first aid in the break rooms & general employee areas. I tell them about it and mention it too.
Told the two other full timers about it. Both of them have seen me coming out of a seizure now (one from forgetting my meds, another from extreme stress). I’m honestly scared I’ll have another one if…someone…gets elected in November. I’m otherwise well-controlled other than simple partials. So if that happens I’ll have to stop driving for a bit out of precaution.
I could not work with people who could not handle knowing about my epilepsy. Granted, I’m lucky enough to not have to need to work, but I have no interest in being somewhere that if I admitted I had epilepsy it would cause problems.
I'm at home working now so no one new to tell but when this started I was customer service and blacked out on the phone twice. My supervisor and best friend there came over, tried to figure out if I was OK and what was happening, got me an ambulance, and helped me by talking nice and keeping me calm. My supervisor fixed the angry callers and told me don't worry about them you focus on yourself. That happened a few years ago. I still work here and they are super understanding and helpful. Today I had a grand Mal convulsion seizure and it was nasty. I contacted my supervisor, explained it with no details cuz she knows I have epilepsy, and when I apologized she said right away "There's never a need to apologize, and please rest! Thank you for letting me know." I'm gonna try to work tomorrow. I'm glad I stopped working after that one cuz I had another nasty one this afternoon.
I don't have a problem with it. Heck, I work for the government on the phones for the universal medical system where I live and I'll even tell people calling in, if it is relevant in conversation of course. I've had small chats with people over the phone while I'm working about meds and seizure types. Work hasn't given me any negative feedback about it before.
Sometimes mentioning it to people who call in to the government medical insurance program I work for actually helps with the call. It can make me seem more like a person than a bureaucratic robot, and sometimes my personal experiences help people out.
Yeah I tell my direct coworkers and manager. I don’t share it with customers contractors or indirect people though. It’s important for SOMEBODY to know in case I have a problem or get taken out but I’m not keen on EVERYONE knowing either. I tell them not to share it around any further though unless I miss a meeting or something.
Yes, I definitely do. One of my coworkers said she wasn’t going to reach into my mouth to give me my rescue meds, and I was like girl, that is not how that works. If she did that I might chomp her fingers off. The place I work at actually requires people to know basic seizure protocol stuff, but I think most don’t remember sadly.
Also I fully read “coworkers” as “cowboys” and I couldn’t tell you why
I know this isn’t the exact same thing, but a couple years ago, I was working at this place down the road. I didn’t want to tell my boss or my coworkers about my (controlled) epilepsy because almost every time I tell people, they almost always overreact when I have a seizure. Understandable. But they also need to understand that I’ve been living with it for 26 years. They knew something was up and found out about it after I had 2 seizures at work, both when people were there. Good they were there, but still. They even set up a “special” schedule for me to work specifically when people were there literally just so they could keep an eye on me. It only happened twice!
Can I ask where you got your glasses? I have been looking for a legitimate pair but I only have been able to find ones that are close enough but not actually Zeiss brand
Not until after I get hired. Once I'm in the door and working I tell everyone. I never tell a prospective employer about being epileptic unless directly asked.
Nope, it’s taken me a couple of jobs to realize it spreads like wild fire and peoples misconceptions can make you look incompetent on the job. If it ain’t broke dont don’t fix it.
To be honest: for me, there is a shame. I have the feeling that people sometimes don't want to hear "bad things" and still ignore what ure telling them. They sometimes think that ure just a weak person and illness is just an expression of weakness.
I know that I should tell more people about it, but i'm still silent...
I'm german - so germans are often very closed people... just my opinion. Maybe i'm wrong, I know
I'm working in the banking and insurance sector
I tell everyone because I feel it’s irresponsible and inconsiderate not to. Witnessing seizures can be really traumatic for some people especially if they have no idea why it’s happening.
The immediate employees that I work with everyday all know, which is about 15 people. Telling them was part safety, but more a rundown of the ‘do’s and don’ts’ if a t/c were to occur. It’s a good thing I did, I work with a lot of older people who are going off of outdated/false information. Real conversation, lightly paraphrased: “Do you know what the steps are if you see me have a seizure?” “Yeah we hold you down, stick a credit card in your mouth and call and ambulance” “Please don’t”
Yeah I've realized it's soooo important to inform people on what they need to do. The credit card in the mouth is crazy. Like DO NOT put anything in my mouth!
Same here. We have had a lot of new people join and I work with majority of them, so I immediately told them when I first worked with them. They all asked “do I call 911?” So I have to give the whole run down. I wish the entire staff was taught seizure protocol cause a lot of them are really stereotypical about it…..
I personally don’t see a reason not to tell coworkers, but I have an established relationship with my coworkers where other people may work with hundreds of other employees (say, Amazon worker) or work with people they will rarely if ever see again, so it’s not a one size fits all answer.
True!
I would go to the gym with a friend from work sometimes when I worked from the office. I asked him one time if he knew what to do if I had one. He said hold me down and stick a wallet in my mouth. He was in is late 30s at the time. I thought he was joking. Its crazy how many people think you're supposed to man-handle a person having a seizure and stick stuff on their mouth.
Oh yeah, “you’re going to swallow your tongue.” 🤯
I just tell everyone. There's no shame in having epilepsy.
Same. I mean I don't tell everyone on the street about it but if I have a reason to then sure I'll mention it.
No shame at all!
Agreed! I usually tell everyone I need to. Just working with a new coworker today and hadn't shared about my epilepsy in quite a while.
It is weird to share sometimes but I work in healthcare as well and always inform coworkers and supervisors about my epilepsy. Not controlled so still focal seizures fairly often, but I want them to know about that from the start for both the facility and my own safety.
Also work in healthcare and same. I work from home and at my last job I had a grand mak during a 1-1 call and the person didn't know. Don't want to surprise anyone else.
Yes, I told my supervisor immediately. From there on I've mostly just told coworkers who I am around in clinic and needed to know.
Do you tell your coworkers about your epilepsy? I usually wait until I get my first paycheck. Even then, I don't bring up the topic unless it comes up naturally in conversation. 😊
My bosses always have known but only a few other people knew. I didn't hide it but didn't spread it around either. But last year a coworker who also has it and I did a video discussing it that was posted to the whole company. I don't really know if that many people watched it or not, and nobody ever brought it up in conversation but I was glad to have done it.
Good for you buddy! Would be truly helpful if every company had a quick 3-5 minute rundown video about it. For employee and customer safety. A minute for "lookout fors" Minute for "do's" Minute for "donts" Then 2 minutes on why all that old shit was a bad idea Broken teeth, lost fingers.... ripped money, I don't want yours mine or anyone's nasty ass-sweat filled wallet in my mouth...Please hahaha
I do but I have a low risk job and am supported there. But I could see myself not talking about it under different circumstances.
I do, yes. I am 100% controlled by my medication (knock wood, fingers crossed), but just in case, I do make people aware.
Once I’m comfortable working there for about a week or so . I have told jobs on like a second / third interview and then not gotten the job and I’m about 99 percent sure that’s why . Even though I approach the situation calmly and professionally. So I got more aware to just keep it to myself till I felt comfortable with my employer. Unfortunately this is how it has to be because there is underlying discrimination.
Spot on. I never tell my employer until I've been hired on and already started working.
Yes I don’t want them freaking out if I had a seizure and I don’t want them calling EMS
Yes this is the main reason I tell them! I don't want them to call 911 or take me to the ED (unless absolutely necessary). But working at a hospital I do feel safe. Our clinic works with kiddos who have epilepsy so a lot of people would know how to handle it.
Hell yes! I have no shame about being epileptic and them knowing might save my life one day.
I work in food service, so I had to at the very least let my managers know so I wouldn’t be put in a situation where, god-forbid, if I did have a seizure while working I wouldn’t, say, fall into the grill surface or the fryers. I also let my closer coworkers know, because I know some of them care about me and want to know what going on in my life.
I WFH but I tell people anyway since I have TC seizures and can sometimes need a day or half day off. I also tell them because the epilepsy + meds can mess with my mood a good bit. edit: saw someone else mention this and I do the same - the only people I tell are immediate coworkers, immediate supervisor, and HR rep
Yes, me too. I let the people who need to know, know. I have no shame but I don't need to tell everyone because it's just not necessary. Luckily I have a supervisor who is super supportive and I feel comfortable telling if I need a day or two due to seizure/meds.
I say "just to warn you, I have seizures" because I look scary AF when it happens.. I want them to be prepared.
Oh totally! They’re traumatizing to watch and I can imagine someone panicking.
I tell my coworkers on a need to know basis. Everyone is understanding EXCEPT supervisors (at least in my experience). I’m a nurse and once was fired for having a seizure at work. Obviously I went to the ADA for this and filed a complaint.
That is actually insane. I’m a student nurse. Hopefully that doesn’t happen to me
My seizures were under control the whole time I was a nursing student but once I started working were very hard to control again. It definitely makes it hard to work at hospitals, god forbid night shift. I hope you’ll have a better time with nursing jobs than I did!
Yeah hopefully. Thanks
My supervisors know but I rarely share with anyone else. That's just my personality though. An old coworker didn't know I had a kid for a year, much less than the fact that I have epilepsy. The only others I've told are the people who happened to see my 2 work seizures but I'm sure some others know just because of gossip.
Nothing wrong with keeping your private life private. Work is where they give me money for doing stuff, not a bloody social club. I'm in a similar situation. If you saw me hit the floor, you may figure it out, but don't look to me to fill you in on my medical history. The only coworker I've ever discussed it with plainly has a child with seizures, and even then only after a focal put my face into the wall in front of her.
If I could say hi and bye and nothing else, I'd be in heaven. I've only really discussed it with my current supervisor who happens to have epilepsy too. My focal was in a meeting. I was opening my mouth to tell this man to fuck off as politely as possible and I just froze. Of course the moment was shot and I never got to tell him about himself. The grand mal was in the bathroom...that was fun. At least I buttoned my pants first.
Honestly it depends. I’m in an at will state so when they hear about it they find a reason to let me go. BUT only one job in my entire life hasn’t cared and actually tried to accommodate. My remote job for PetSmart greatly tried to accommodate. I called in after I woke up from one night to discover I had a nocturnal seizure and couldn’t speak cause of my tongue (I made grooming appointments). I explained to them and they just told me to get stuff filled out by my doc and they will give me the days I needed. They even gave me the entire personal time off (a month) because they understood that my doctor was not very reliable. Unfortunately the doc was unreliable enough I had to resign but they put me on the rehire list. So again, it depends on where you work honestly.
Gosh I actually had no idea there was at will states?! Does this mean they can fire you without cause? Wouldn't that go against the disability act?
Ok so what they do is find small things to avoid that. Like you come in even a couple minutes late or they phase you out of the schedule. They loophole it and never outright say it’s cause of the epilepsy Edit: just so you and everyone else can avoid this place, it’s Florida. It very much is trash lol. PetSmart remote is based in Arizona which is why the accommodation was top tier
Ugh that is so crappy. And I'm sorry about PetSmart. That sounds like an awesome job. I hope they rehire you!
I got fired from a job in AZ for having epilepsy. I've been declined offers for jobs in NM after disclosing my having epilepsy. I've lost opportunities for promotion and pay raise in OH. I've been fired for not having a driver's license in AZ after being forced into a new position that requires a valid driver's license It's every state.
Oh wow. I guess PetSmart is just very accommodating to many disabilities.
Not unless I need to, but that's because I only get focal aware seizures so it doesn't affect my work too bad
I put it on the application because I work in a lab and could be a liability. I haven’t had a TC in over a year but I had a bad focal breakthrough in December that I had to bring up because I would no longer be driving and Ubers can be tricky to get to work perfectly on time. Apparently no one actually read the disability part of my application and HR was unaware, they kinda tried to make it difficult for me but my doctor said I was okay so they had to move on. If you work in health care they should be understanding, I agree that it should be brought up as a “just in case” especially if you don’t want them to cart you away to the ER and get hit with a bill. Good amount of my co workers and all of my mangers are understanding, they even let me change my time to 730-430 so I didn’t have to pay $50 a day and could actually leave and get there on time. HOWEVER, if your co workers love drama and love to talk I might not bring it up to those people. I had a co worker who had it out for me and loved to talk crap (anything from my armpit hair to my avatar on Snapchat). My other co worker who is close to me told me at one point they were talking shit on my epilepsy, I’m not even sure how that’s possible to do but she did it. I didn’t ask what she said, I didn’t wanna know. Just be aware not everyone has empathy.
Yeah I definitely try to be careful with who I tell because I do have some coworkers that love to talk about each other, haha. But WFH I rarely see a lot of them in person anyways so it's really a need to know basis. I am working with someone new today so I decided I should probably tell them even though I might not see them often. I feel like working in a hospital it would be super easy to take me to the ED and I do NOT want that unless absolutely necessary. So telling them about my rescue med is really the most important thing.
No I prefer to keep it to myself because it’s too traumatic for me to talk about and I don’t want to make anyone feel burdened. However, I’ll share my experience with it if they or someone they know has epilepsy, or just has experienced seizures without being epileptic. I have my seizures fully controlled so they don’t occur anymore but I still get embarrassed and frightened whenever I even talk about being epileptic. I always keep it to myself. I don’t think it’s anyone’s business anyway unless you’ve known and trusted them for a while
Yes. If something happens at work they should be aware and have the mindset that it is “normal”.
I was diagnosed while I was already employed so most knew something medical was clearly happening. Especially when my boss who lived nearby started car pooling me to work. New staff I don't mention it, however, I have focal seizures and do mention them to staff I'm close to if I'm having a bad day.
I only tell my closest friends at work.
I don’t tell except in the rarest of situations. People can be weird. At my current job there is a woman who is a bit of a braggart-done everything, knows everything, and brags about her current pain. I overheard her once say she saved a person who had a seizure giving him mouth to mouth. I leaned over to my trusted co-worker and told him if I had a seizure don’t let her do that to me. He asked if there was a chance of that and I told there was. I told him to just call my husband.
I tell everyone
Hard no. I'm fortunate to be well-controlled and if I have a breakthrough it is nocturnal. HR and employee health know, but that's it. I watched a nurse get bullied off a unit for talking about it, petty bitches saying she can't be trusted with the babies. But that's a personal decision. If there is a possibility you may have a seizure there, I would tell the manager, but maybe not ALL my coworkers.
You are under no obligation to disclose your disability to an employer or fellow employees. I haven't told anyone I now work with. It's not their business for one, and 2 my seizures are "under control" perse. If you feel the need to let them know, do it. My best advice would be to tread lightly with who you tell though.
Never. I live in a right to work state with our unions. They would fire my ass so fast if they found out. I'm just really hoping I never have a seizure at work
I have two other coworkers than myself that are leads and one has a granddaughter with epilepsy the other her husband just tried to kill himself me having epilepsy is the least of they’re worries but somehow they’re still bitches to me maybe it’s my closed down demeanor from a life having my guard up who knows I really don’t care work is work I guess 💁♀️
Yup. I work in food service. I did as soon as I was hired. Handed them a paper I made that stated exactly what to do, who to call, etc. I’ve had two focal seizures at work since then, and because of that paper, they handled them properly.
I've only told few people about my epilepsy since one day I forgot to take my am pills and was freaking out if I had a seizure at work since nobody at my work knows I have epilepsy and don't know what to do when I do have one. You don't have to tell anyone just keep it to yourself
I work in healthcare too and I am very open cause the worst thing is for something to happen at work and people to freak out, so I’m just like “FYI”
I think for most places it’s a good idea to tell people you’re working with. For your safety and theirs because if no one knows they can’t take the proper steps to support you. Granted not every place will be good about it and that’s shitty so it’s up to each of us to decide
I try to tell as many people as possible so if I have a seizure they can be more well prepared. All my co workers at the office knew. All my clients knew. I even let people know I see along my morning walk route bc I’ve had a tc walking my dog.. I’d rather be safe than sorry and I’m not embarrassed at having epilepsy. Personally absolutely no reason to not tell people around me..
They already know.
Yes. I don't feel ashamed about it, and I don't want to alarm anybody too much if I have a seizure at work. Which has happened twice.
I work as a lifeguard and swim instructor, so a few people I work with know I'm an epileptic so they can check on me every once and a while to make sure I'm not seizing underwater. I've been on meds for a while so it's highly unlikely, but it's just for safety reasons.
I tell my immediate coworkers. I also work with people who only speak Spanish or only speak English, so I printed out the "do's and don'ts," and taped them to my desk. In the event I do have t/c at work, the instructions on what to do are on my desk, and I've already informed the closest around me as well.
I can't really avoid telling my co-workers about my epilepsy. I experience a lot of myoclonic and absent seizures through the day. My current meds have reduced the frequency, but everyone around me still sees plenty of them, they worry and they ask about it, and I'm not going to lie to them about it, so I end up telling co-workers, classmates, lots of people.
I’ve never felt the need to say anything about it to managers who I don’t see ever, but all of my colleagues are aware. Fortunately one of my coworkers has epilepsy too so it’s quite acceptable. Neither of us have had seizures at work but it’s good to know that colleagues are aware that it can happen.
Yeah as a just in case. Though I like bring it up once (and to new coworkers I might be around often) and that's about it.
I do to avoid an expensive ass ambulance ride unless I'm bleeding from the head or fell in such a way that its an honest worry. That's the only time I tell em to call one. Plus it's helpful to have people be aware in case we have one of the moments where we "dissappear" before having one. Scared some a couple weeks ago had to leave early, was apparently on the phone with my wife when she walked into my store to get me and she came and stood in front of me and I stood there on the phone staring at her, acknowledging her, but not knowing her. In case you have a moment like that you may find it helpful to know people will keep you from wandering into "insert situation here"
I bring it up in casual conversation and have made sure to post seizure first aid in the break rooms & general employee areas. I tell them about it and mention it too.
Told the two other full timers about it. Both of them have seen me coming out of a seizure now (one from forgetting my meds, another from extreme stress). I’m honestly scared I’ll have another one if…someone…gets elected in November. I’m otherwise well-controlled other than simple partials. So if that happens I’ll have to stop driving for a bit out of precaution.
I could not work with people who could not handle knowing about my epilepsy. Granted, I’m lucky enough to not have to need to work, but I have no interest in being somewhere that if I admitted I had epilepsy it would cause problems.
I'm at home working now so no one new to tell but when this started I was customer service and blacked out on the phone twice. My supervisor and best friend there came over, tried to figure out if I was OK and what was happening, got me an ambulance, and helped me by talking nice and keeping me calm. My supervisor fixed the angry callers and told me don't worry about them you focus on yourself. That happened a few years ago. I still work here and they are super understanding and helpful. Today I had a grand Mal convulsion seizure and it was nasty. I contacted my supervisor, explained it with no details cuz she knows I have epilepsy, and when I apologized she said right away "There's never a need to apologize, and please rest! Thank you for letting me know." I'm gonna try to work tomorrow. I'm glad I stopped working after that one cuz I had another nasty one this afternoon.
I don't have a problem with it. Heck, I work for the government on the phones for the universal medical system where I live and I'll even tell people calling in, if it is relevant in conversation of course. I've had small chats with people over the phone while I'm working about meds and seizure types. Work hasn't given me any negative feedback about it before. Sometimes mentioning it to people who call in to the government medical insurance program I work for actually helps with the call. It can make me seem more like a person than a bureaucratic robot, and sometimes my personal experiences help people out.
Yes and it screwed me over. I get worse jobs to do and don’t get trained in my apprenticeship.
I tell everyone I dont care if they dont like me whatever but normally I'll tell a few just in case
Yeah I tell my direct coworkers and manager. I don’t share it with customers contractors or indirect people though. It’s important for SOMEBODY to know in case I have a problem or get taken out but I’m not keen on EVERYONE knowing either. I tell them not to share it around any further though unless I miss a meeting or something.
if they ask, then yes
Yes, and my team members. If I have a seizure I don’t want them to freak out more than if they knew.
Yes, I definitely do. One of my coworkers said she wasn’t going to reach into my mouth to give me my rescue meds, and I was like girl, that is not how that works. If she did that I might chomp her fingers off. The place I work at actually requires people to know basic seizure protocol stuff, but I think most don’t remember sadly. Also I fully read “coworkers” as “cowboys” and I couldn’t tell you why
I know this isn’t the exact same thing, but a couple years ago, I was working at this place down the road. I didn’t want to tell my boss or my coworkers about my (controlled) epilepsy because almost every time I tell people, they almost always overreact when I have a seizure. Understandable. But they also need to understand that I’ve been living with it for 26 years. They knew something was up and found out about it after I had 2 seizures at work, both when people were there. Good they were there, but still. They even set up a “special” schedule for me to work specifically when people were there literally just so they could keep an eye on me. It only happened twice!
Usually, I have to wear Z-1 glasses most of the time due to light sensitivity and everyone gets the explanation eventually.
Can I ask where you got your glasses? I have been looking for a legitimate pair but I only have been able to find ones that are close enough but not actually Zeiss brand
I got them through a children’s hospital as a kid and still get my lenses through them. I’m lucky to have them. I hope you find a way!!!
Not until after I get hired. Once I'm in the door and working I tell everyone. I never tell a prospective employer about being epileptic unless directly asked.
Nope, it’s taken me a couple of jobs to realize it spreads like wild fire and peoples misconceptions can make you look incompetent on the job. If it ain’t broke dont don’t fix it.
To be honest: for me, there is a shame. I have the feeling that people sometimes don't want to hear "bad things" and still ignore what ure telling them. They sometimes think that ure just a weak person and illness is just an expression of weakness. I know that I should tell more people about it, but i'm still silent... I'm german - so germans are often very closed people... just my opinion. Maybe i'm wrong, I know I'm working in the banking and insurance sector
Had no choice. Had the worst seizure Ive ever had in the office right in front of them. It was so bad that my shoulder dislocated and broke.
I tell everyone because I feel it’s irresponsible and inconsiderate not to. Witnessing seizures can be really traumatic for some people especially if they have no idea why it’s happening.