So there I was...

[CBernieBlack]

...minding my own business. The team decides, "Hey, let us take you to lunch for your birthday!!" I'm like, "Yes, that sounds awesome!" We have a really good Belizean restaurant here. I get my food, I start on the chicken which is so nicely done, you don't even need a knife. Falls right off the bone. ANYWAY, I start to feel deja vu which we all know is the aura at the start of something. Before I could do anything, the visuals started and there I was having lunch with 4 gorillas wearing party hats. Next thing I know a co-worker is "trying to wake me up." He was freaked out, the other co-workers were freaked out. Yup. You guessed it...seizure-ville, Population: me. Good thing it was not a general seizure...just an absent. Bad thing...I have to disclose to my co-workers about what's happening with me. My team is not the sort of bunch I want to go have a beer with. Strictly professional. So now I have this awkward super personal thing to talk about with them. It went well, but now I'm feeling pretty vulnerable.

So I'm wondering, how many of you have disclosed to your co-workers, how is your work environment after you tell people, what's it like long term for your work, has there been a shift in any assignments since disclosure?

Hope all is well with the rest of you.

 

[CathyAnn31]

Hi Bernie, I'm sorry that happened to you. ***hugs***

No words of advice, but words of support.

 

[CBernieBlack]

Thanks! Really, I think in this situation that is all we can do. One foot at a time down the cheesy path of motivational sayings.

 

[Nakamova]

I'm self-employed (so no boss, no colleagues and no lunches out), so like CathyAnn I'm throwing tons of support your way, but no experiences to share. I guess this is your chance to enlighten your colleagues about epilepsy. If you're matter-of-fact about it, they may be too...

 

[Toxic-virus]

Yes it's happened to me, it was totally awkward talking about it afterwards because I don't ever talk about it unless your extremely close.
I have TC and there were rumours I died for 5 minutes before being brought back, total crap.
Not long afterwards I left the company.

I suppose I made it worse for myself as I never told anyone.
I rarely take time off ill, I work harder than others as I have something to prove.
But they saw a vulnerable side of me I didn't want to expose.

I could've told them and they could've then be prepared if it happened better.
Maybe if still be there but it was my decision not to tell them.


Sent from my SM-G935F using Tapatalk

 

[Naori]

always exposed

I have to deal with figuring out how to navigate my epilepsy at work all the time and it's frustrating, embarrassing, empowering and humbling. I teach part time at a college and one of the things I learned a long time ago was not to disclose to my employers about my epilepsy. But it's such a strange situation at my job because my students are really my co-workers and the ones that see me everyday. So the way I deal with it is that every semester in each of my classes, on the first day while we're going over the syllabus, I stop somewhere in between the plagiarism clause and attendance I just stop and say, "by the way I have epilepsy, so just a few things that go along with that: I won't cancel class often but if I do I won't be able to give a lot of notice so please check your email before class, once in a while I might forget your name but I won't forget to confiscate your phone if I see you on it, there will be times where I will have to come to class in a wheel chair, and if it's hard to read what I'm writing on the board it's just because I have tremors in my hands and not that your teacher is on drugs." For me it's easier to just give a disclaimer, sort of a public service announcement in a nonchalant way the first day rather than explain it throughout the semester. I invite them to ask questions if they have any and I have always found them to be highly compassionate, curious and respectful.

However, strangely enough I feel like I get more understanding from my freshman than from some of my tenured colleagues. We don't have a lot of interaction but if I do have to come to school in a wheelchair or with my cane (after bad grand mals) the other faculty are uncomfortable and insensitive. I feel like it's one of the few diseases where you have to expose something really personal about your life all the time for. Everyone asks me what's wrong, even though I've taught there for seven years, and they don't understand how one day I can be in a wheel chair and a few days later I can be walking around fine. They stare at me and ask me intrusive questions and I'm completely aware that the administration in many colleges would see me as a liability if they were aware of how severe my epilepsy is. No one understands it and I don't feel like I should have to educate every person in the faculty lounge nor do I like repeatedly answering questions about what's wrong with me; several people act like I'm in some way being dishonest or attention seeking and I've had people tell me to "just stay home when I'm like that". Sometimes I wish I had a job where I could go sit at a desk instead of be in front of a whole classroom, but I love what I do and my students make every moment of it worth it.

 

[trippergreenfeet]

Total disclosure from me ... worked in a dangerous enviroment so all needed to be aware. Co-workers were very understanding but I think that had to do with work conditions, on mine sites so we worked, ate and socialised together while away. Getting to know co-workers on a more personal level creates a deeper care for one another, duty of care becomes strong.
Give it some time, I think your co-workers duty of care for you will increase, however it is up to you to educate them on the particulars of your seizures and associated care procedures. Number one is epilepsy is out of your control for the most part, comes back to education, then any judgement that may arise will fall away.

One general thing to note, the more unhealthy you look to the outside world, the more acceptance there is ... on the outside I appear very fit, athletic physique ... judgement comes down hard from those that don't know me, that is until they see me hit the deck, with no heart beat and turning grey as an overcast sky ... that is an attitude adjuster.

 

[Porkette]

Hi Bernie,

Sorry this had to happen but take my word I work in public school with kids in grades 6- 8 so I've learned to always be open about my epilepsy with the students and staff at the school. Every yrs. I speak in a 8th grade Science class and tell the students about epilepsy and what a person should do if someone has a seizure. Often I've had seizures right at school in front of the class and the students handle it very well. I have absence, complex partial and simple partial seizures. I also had brain surgery done to reduce my seizures and I've taught both students and staff about that. Personally I think the world needs to know more about epilepsy since it's been kept quiet for so many yrs.
If your employer ever gives you a hard time about your seizures you have a good legal case against them. I've had 4 co workers either transfer to another school or fired for putting me down about my seizures. I wish you the best of luck and May God Bless You!

Sue

 

[seagull]

it got nothing to do with them,if they ask then explain what they need to know and what you comfortable with....myself I keep quiet still feels judgement over me and as you say vunerable ,I feel exactly the same

 

[girlwithadog]

Way back when I first got diagnosed I told one person because I had to miss a bunch of work for tests and hospital visits. I asked her not to tell anyone and everyone knew the next week. I was so upset. They had so many questions, so did I and I freaked out.

I left my job for a couple years and when I came back there's almost all new people. So they didn't know and I didn't have to tell them. Not until I started having regular seizures. So now I'm open with everyone, at least at work. They don't ask too many questions but when they do I have answers for the most part because it's not so fresh.

I don't get treated any differently. I do however, because my feet are swelling. The cook wont put salt in any of my food or give me the butter or anything and they keep insisting I put my feet up. They care more about my foot being swollen than my brain misfiring! Ha!

 

[Harvinder]

Did the swelling start after the medication?