Disclosing Epilepsy Reprocussions?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

K

ksharin

New
Messages
7
Reaction score
0
Points
0
Hello All, I am new to this forum, unfortunately not to Epilepsy. I have always been scared of disclosing my epilepsy info at work and such do not even use my insurance for my treatment. I pay out of the pocket for fear of getting fired, looked down upon, or other. Can others of you who go through this hellish ordeal let me know what your experiences have been like when disclosing this info or using your insurance to get medical treatment? O just dn't know what to do an as I get older I get into more responsibilities, more stress, and I just don't know what to do. Kind regards, Karin
 
Last edited:
Hi, ksharin:)

Don't be afraid, come join our group!:) Oh, all of us in some way, shape, or form have been affected by epilepsy, ksharin, so it's nothing to be ashamed of. I'm kind of surprised your insurance does not know about your epilepsy because it can help with the cost of M.D. visits & medication. Do you live outside the U.S.? The reason I ask is that in certain countries & cultures, a stigma is strongly connected when one has to endure epilepsy(my Korean relatives have called me a 'burden' to my face) & this may explain your resistance to telling your insurance company & employer about your epilepsy. In this case, I understand.

Both my insurance company & M.D.'s know I have epilepsy, and a select few of my co-workers know I have epilepsy[I'm a teacher.]. I have had no difficulty disclosing my condition to my insurance or co-workers. If you live in the U.S., you are protected by the Americans with Disabilities Act (ADA). Basically, by law your boss & employer must make reasonable accomodations to prevent you from injury due to epilepsy(example: they must allow you time to take medicine, time to rest/recover if you have a seizure & must not withold medical treatment.) I truly hope this helps. Bernard has created 1 of the best sites I know, and I'm sure you will meet & become great friends with the people who visit this site. Take care, ksharin! ~Best Regards, Ann T.

Now, this is a question for the international friends & family who visit this site: Are people w/ epilepsy around the world protected as Americans are by the ADA?
 
It never occurred to me to try to hide this disorder from anyone, in my daughters case. I need people to know what is happening so that she is well cared for.
 
Welcome!
My employer does not know either...but I do use my insurance. If you are in US, it is illegal for your insurance company to disclose any medical information to your employer
 
Hi Karin :hello: Welcome to CWE!!! Ann is right, in the U.S. we are protected by the ADA. I can understand your concern and desire to want to cover up your epilepsy.

We have not hidden my son's epilepsy. We're very open about it and about his treatment. I do feel that for safety purposes, people that he is close to should know about his condition for two reasons. They need to know what to do should he seize. They also need to know how we treat (through diet and therapy) so that they do not give him something that could trigger a seizure.

Being an adult, you don't have to worry about someone else giving you something that would trigger your seizure, but you may want to take precautions to make sure you are protected at work if you should have one there.

You've come to the right place. CWE is full of wonderful people who can give you the support and encouragement you need. There's all sorts of helpful information in the forums, so have a look around :)
 
Hi Karin

You are not alone, I have always hidden my seizures from the world. Up until recently I only had one person that knew at work and none of my friends know. I don't talk about E face to face because I find it a difficult subject to discuss (I am fine talking online), talking to members and mods on CWE has really been helping me with this issue. Due to my work colleague being made redundant at work this has now forced me into the position of selecting someone new, which I have done, but it was hard.

If my managers found out at work, it would not jeopardise my job in anyway, but they might take more precautions, some of which would not be necessary and I don't like a fuss to be made, so I find it easier to just keep it too myself.

Maybe you could consider letting one person know about your seizures like I do, just so that they are aware of the situation.

Welcome to CWE

The Crazy Monkey
 
Hi Karin, welcome to the forum. :hello:

There are companies/employers that are fantastic about understanding and accommodating employees with challenges like epilepsy and there are others that are discriminatory. Only you can really judge where in the spectrum your job lies (or if the possibility of losing that job and seeking another would be likely to lead to a better overall situation).

I think The Bard got it right when he said:
This above all: to thine own self be true,
And it must follow, as the night the day,
Thou canst not then be false to any man.
Farewell; my blessing season this in thee!
Click to expand...
 
Hi Karin! Welcome to CWE. :) I'm a public school teacher. :) and yes, I have seizures. :)My school district, site administrators, and colleagues all know that I have seizures. And they have had no problems. :) My school nurse did require me to get a letter from my neuro saying that it was ok for them not to call 911 for my seizures, which he was more then happy to write for me, but I have had no issues other then that. :) My classes have been fantastic, my aide is fantastic, and my colleagues are fantastic. They've never acted resentful or scared, and are always supportive. :) so my experience has been really good. Now, others here at the site have had some rough times with their employers....But, I think that it is necessary to be honest with your employer.

I have grand mals, and they flared up a few years ago. I had a few at school, so now I just make it policy to start the beginning of each semester with a talk about epliepsy with all of my classes. :) My seizures are really obvious, so it's necessary for me to be honest with my bosses. Whether to disclose is totally up to you. When making that decision you need to ask yourself the following questions:
1. Are me seizures well controlled?
2. When I have seizures, when do they occur?
3. Is there even the smallest chance that I could have one at work?
4. If I had one at work, would the employees I work with know how to help me? Or would they think I was intoxicated or high?
5. Does my job include certain tasks that would be dangerous if I were to seize during? (forklift operator, etc...)
6. If I were to have a seizure at work, do I want to have an ambulance called? Or can I get myself home afterwards??
7. could I lose my insurance coverage for not disclosing a preexisting condition??

Sometimes, it helps to take a step back and just try to look at the questions I jotted down very clinically. The important thing is to be honest with yourself. If you have a job that requires you to do something that if you were to seize during, could cause you or others around you harm..and you do not have your seizures under control, then you probably want to get a letter from your neuro stating what kind of tasks are to be avoided by you. But if your seizures are well controlled..or if they only occur at night when you are home, then you might not have to disclose your medical condition at all. The final decision is up to you.
 
Karin,

Welcome to CWE. :cheers: We do not try to judge others decisions here, though I hope you an come to be more trusting. If you are in the USA, laws safeguard you to some extent.

I have slowly learned over the years to trust others and have rarely had it be a negative.

Visit here often and get comfortable.
 
Karin, the more you worry, the more likely seizures will surface. Stress is high enough at any place of employment. And, what happens when a seizure happens? Does anybody know about the epilepsy and could that seizure remove you from a specific duty at work (such as driving a vehicle, operating machinery...)?

I have told others at work because it poses no threat to others. It is simply an annoyance for them to see me pop pills all day. But, I'd rather have the meds than a seizure anytime. The open minded people will help support you.

Personally, I've had some widely varied reactions from both management and non-management. I suppose if a manager supports a disability, then others will follow his/her example. If you live in the USA, maybe a presentation from the Epilepsy Foundation of America would help ease the tension.

Recently, I started to drive. Some people who were rather conservative about me driving with this disability have turned around and have become more friendly about it. It all depends upon their ability to accept your character in spite of seizures (or lack of them as well).
 
You must log in or register to reply here.
Back
Top Bottom