Tired of living a lie

[dfwtexas]

My seizures started in January and I got diagnosed and started on treatment in May. Since that time, the only ones that know are my sons (one lives with me since I needed constant care from my accident 5/2006) one of my brothers and my best friend. Most of my seizures occured at work (which makes me wonder about all the fluoeresint lightsfrom reading other posts) but no one noticed and later I used the aura to run and hide in the bathroom. A couple of employees notice my wierd behavior but I guessed they chalked it up to meds for treatment of arm.
I am considering telling all my family at Thanksgiving and also going to see an employment lawyer to discuss how my job can hande. I work for a very small company and I am the accounting manager and handle all financial transactions, all checks, deposit, etc. And yes before getting diagnosed, in the midst of my seizures (complex partials) I screwed up stuff...I am still cleaning up stuff from jan and feb seizures. there's nothing else I can do in the company, I believe it they know, I will lose my job. but how does ADA affect that situation? I am not sure I will be able to come clean with work.
I am really tired of hiding, not being able to do certain things and trying to come up with lies, having everyone think I have a screw loose because of my kepprage. My sister in law is a nurse, so I think it would be good to do this with all together and she can help answer medical stuff. What has been ya'll experience of coming clean

[RobinN]

I really feel for your situation.
I can't say that I ever kept Rebecca's situation quiet, so I am unable to share that experience with you. I do however think it would be a good idea if you shared what you are going through with your family. If it were me, I would have a one on one with your SIL and use her for support.
An employment lawyer sounds like a good idea to protect yourself. Remember a lot of people screw things up from time to time. I think the new ADA laws protect you to some extent, however it would be a good idea to have the facts before you.

Hiding and telling lies to cover yourself are a terrible way to live.
I hope your burdens lift after you make your decisions about how to handle this.

[TeeTees]

I would DEFINITELY come clean to the family, as it's gonna be a huge weight off your shoulders, plus a huge relief when your family start helping you out with deciding things etc.

As for work, what kinda things did you screw up on ?....was it stuff that anyone coulda screwed up on ? I work in Accounts too, but my seizure's haven't had an affect on my work (touch wood). There really shouldn't be any reason why they'd give you the boot, so to speak, just because you have seizure's. I'm sure that WOULD be against the law !

Good luck mate

[ziggidypoo]

Some family react like my immature 23 yr old son by hanging up if I ever bring up the topic E - or saying "LEAVE IT ALONE". He's my dearest baby all grown up, but I just don't say anything anymore to him. He just can't cope with stress. He had to take care of me for several years when he was not even a teenager.

Some family, like my 80 yr old Mom, will just say " Gail take a nap" - especially the time I lost 35 yrs memory and my Dad answered the phone and I asked who he was and said ...well..it was a really weird scene on the phone.

They understand as much as anyone can and just pray and want to stay appraised to my health on a daily phone call basis.

Some family, like Carey, my companion, my beloved, deals with "IT" every day and he's like me - unless it IS a biggie - NO BIG DEAL knowing it will pass. He is my memory checker or reality checker.

Some family, has shut me out completely.

BUT, it helps to GET IT OUT OF YOUR GUT and LEt the secret out - we aren't people to be shunned or considered fakers or someone to be excluded. We are NORMAL people with an affliction that happens to have vast effects upon our lives.

Hang in there. People on this forum will REALLY help you - I'm a newbie here and have NEVER felt such a peace JUST knowing SOMEONE out there UNDERSTANDS and ACCEPTS me with this odd thing called E!!!

Much support sent your way

GL

[Bernard]

I think on some levels how open you are with others is a measure of how much you accept/own the diagnosis yourself. Holding secrets is always stressful and that's the last thing someone battling uncontrolled seizures needs.

Have you tried getting a bright, non-flourescent light (like a desk lamp) for your office? I wonder if having a non-flickering light source might counter/mitigate the overhead lighting.

[dfwtexas]

Thanks ya'll, I knew I could count on some supportive answers.
Bernard, you are so right...the stress of hiding something that is a part of who I am has me a mess...and I can honestly say that is where 90% of the stress in my life comes from. I really feel like I have really starting to accept this after several months. I guess I should just be ready for the fact it may take awhile for others to accept it too.
Robin, I think you are right about getting with sis in law about the discussion ahead of time.

[ziggidypoo]

My heart goes out to you.

Most times I cannot tolerate bright lights and yet cannot tolerate darkness, so one thing that helps us is theres some weird looking cirleycue light bulb that is bright and we put it in our lamps BUT point the lamps to the ceiling (we have only ceiling light in hall and bathroom - 1 rm apt.) By having the BRIGHT light shining UP - it adds a nice level of light in the room w/o any bad reactions from me at least.

Hey, we are all here for you.

Believe me - I ask the dumbest of the dumb questions and everyone still treats me nice - so what you are discussing is IMPORTANT!!

If it is IMPORTANT to YOU it is IMPORTANT to us - we're in it to win it!!

gl

[TeeTees]

ziggidypoo : no question is ever a dumb one.....it's the answers you have to watch out for

jbgmartin : I guess only you can answer this one, but how do you reckon your family will respond to knowing you have seizure's ?...maybe this is something to think about. I'm lucky in that all my family are supportive, and there for me. It really isn't something you CAN keep to yourself forever though bud. Just remember, this place is like having an 'extended family' to me, and so feel free to blurt out to us anything you want - it's a fantastic site to be a member of.

[ziggidypoo]

ziggidypoo : no question is ever a dumb one.....it's the answers you have to watch out for

jbgmartin : I guess only you can answer this one, but how do you reckon your family will respond to knowing you have seizure's ?...maybe this is something to think about. I'm lucky in that all my family are supportive, and there for me. It really isn't something you CAN keep to yourself forever though bud. Just remember, this place is like having an 'extended family' to me, and so feel free to blurt out to us anything you want - it's a fantastic site to be a member of.

Thanks....sometimes I am afraid I am a pest. I just want to make all people, especially EMT's aware of the TRUE forms of Epilepsy, not just traditional "grand mal" but PC an complex partial and absense too. I am so ANGRY that MEDICAL PERSONNEL in Miami are just plain IGNORANT!!! It's not their fault I reckon, I reckon it is their lack of training in this DISORDER!! When I learn something, I want to spread the TRUTH and am trying to do so on my own URL and blogs and stuff - AND even here. You see, in this Assisted Living Facility people seize all the time, I can't tell you how many times Carey has been called to pick someone up who is "out" and on the ground or fell out of their wheelchairs. THANK GOD - I've NEVER gone tonic clonic standing up - it was either in a chair or toilet or bed. One time I seized really big time and I was in a regular diningroom chair - I never did understand how they got me from there to the stretcher. Another time, same ordeal only Carey somehow transferred me to my manual wheelchair and then to a comfy cosey arm chair where I was told I seized again and was "sent out" = that's what they call it here when someone goes to the hospital. People here also, most, have some sort of mental illness, and sometimes someone will "act out" and we'll hear "got one to go". Oh, I am SO sorry, I'm rambling again and forgot what the topic was and thought I was still on the line of talking about the tonicclonic seizures. PLEASE forgive me - I can forget midsentence and go off on something else. THe neurologist promises me it is not demensia or that other thing, ummmm, alzheimer's. Let me go lay down. I'm feeling tired and my thinking is not coming thru right. I'm ok. talk at ya later.

[brain]

Why not join with me and head to Cleveland Clinic?

They're good, and besides, the link to there is on
my thread ... and who knows we could end up being
there together??

(NOW THAT WOULD BE SCARY!)

[alivenwell]

If it's the fluorescent lights that are causing seizures, the employer must accommodate the disability by changing lighting or providing an environment without that lighting for working. Can you work from home on a computer?

I've been pretty open about my E. There are some downright bigots. And, surprisingly, I've found them to finally accept the E after a certain amount of time. It takes a lot of patience on your part.

The ones who 'cash in' on the E are the ones who are preventing promotions or employment. The can easily get promoted ahead of you by simply looking good or having a higher social status. Watch out for the rats. They're dirty, disgusting and not always liked for other reasons.

As far as your family is concerned, it would be beneficial to them if you did tell them, especially if this is inherited by their kids/grandchildren... Otherwise, some will probably look at you differently for a while. It's natural. The curious ones may come back and provide support.

[skillefer]

My employer has been fantastic, and so has my family.

[dfwtexas]

Well, looks like my decision has been made for me...looks like the son that lives with me is losing his job...I don't have any choice until he finds another one to continue living the lie.

[skillefer]

Well, since you said the most stress was coming from family, you can still come out to your family. You might be surprised. I've had family members that I thought would shun me that were the most supportive, and I've had people who I thought were my friends that just walked away. The thing is, if you're honest with your family, you might find that they cut you a little more slack and more understanding when you tell them that you just can't do something. As for waiting to tell the boss, that's up to you. But definitely take Bernard's suggesting and try using a desk lamp, and not one of those brand new energy efficient shaped like a cork screw bulbs. (they can trigger seizures too) Also, try taking up meditation. Something to relax and unwind at the end of the day. (Personally, I find saying my rosary or crocheting very relaxing....I think it's the pattern that develops that soothes me....)

[dfwtexas]

Actually, my father could be my greatest ally...he had two grande mal seizures about 20 years. his seizures were related to medication, but he had to be on Dilalintin for a couple of years and gave up driving, getting treated like he was sub-human, etc. however he is so hard of hearing, talking to him is very difficult. I am afraid my Mother is the one that will drive me crazy!
I am going to tell them, but not quite telling them everything that is going on. They would rat me out to DPS if they knew the whole truth.
It kinda reminds me of the joke when John had to go out of the country for a month and had his friend stay at his home to take care of it and his cat. The first time John called home to see how things were, his friend said "well, your cat is dead". John was beside himself and couldn't believe the lack of tact on his friend's part. John told him "you should have built up to that...you could have told me that Kitty was on the roof and you can't get her down. Then the next time you could have said, Kitty came down, but ran off...and the next time you could have told me Kitty died. Now, how's everything else, how's Mom?" To which his friend said, "well, she is on the roof"
So for now, I'm on the roof!

[dfwtexas]

I am really stressing out this weekend thinking about telling my parents about my seizure disorder. My brother, sister in law (she's a nurse) and their kids are not coming, this is the year they are spending the day with her family. My kids, my other brother will be there and they already know. My son that lives with me thinks its a good idea that they know as my mother has been talking to him about my raging mood issue...so this way she can understand the meds side effects and my moodiness.
There's a relief to know it's going to be out in the opening, but there's some concern about explaining it to them, but my son that lives with me said he can help explain to them with the knowledge of what I live with. Wish me luck...oh, got my medic alert anklet this week and I loving it!