Re: Tell the Boss?
Your sister is fortunate: she at least has a name and a diagnosis to give to her condition. I worked for 30 years without knowing what on earth was going on, except that twice I had been told that it was a psychosomatic condition. Talk about misdiagnoses.My suggestion to her would be to be completely open about her condition to everyone, and to get and give out BEB literature at every opportunity. No, it's not something to be proud of, but it's a real condition with real limitations, and her boss needs to know what's going on. If s/he then decides to fire your sister, sis will have a good case for both disability claims and a lawsuit. But if she tries to hide it, her chance for legal redress goes out the window. We are still a long way from public awareness of our condition, and the social conciousness of its effects. Being open, honest, and aware goes a long way toward changing things. --- Lynn
Re: Tell the Boss?
why would someone have to be ashamed of it? it's the other people i know that should be more than ashamed, not me.
Re: Tell the Boss?
For many, the shame is in running into door jambs and doing other clumsy things that normal people don't do on the job, and not being able to explain it without getting even deeper into embarassment.--- Lynn
Re: Tell the Boss?
Re: Tell the Boss?
I was very ashamed of what I had for years and chose not to talk about it much. My boss was also a friend and knew as soon as I did but I did not tell most of my employees and even friends for a long time. I guess they wondered but noone asked. Something "normal" would have been easier to explain but I had something that caused me to "look funny" and I was ashamed of my appearance (still am to some degree.) I was only 26 years old, former homecoming queen and most beautiful, and I was humiliated.Kelly in Dallas
Re: Tell the Boss?
THAT'S a pretty sad story. i think most of we women at least are concerned about the effect this has on our looks. aging is hard enough without some disfiguring disorder to make it worse!
Re: Tell the Boss?
this issue is really bothering me. it is other people who i have told early on that i had this thing that not only refused to acknowledge it but told me to hide it. i thought about this for awhile and said to myself that this was wrong. those that have used me as a scapegoat for their own mental problems had better face up to this NOW.
sorry, lynn; just telling the truth.
Workplace notification ...
Geri:Yes, immediately and in writing, she should notify her superiors of her condition. Start a paper trail and keep copies. If notified, they dare not fire her without running the risk of crossing the ADA (Americans With Disibility Act). After that, if they do not modify her job situation (which most company's do not or cannot) they must allow her to go out on disibility from the company. I actually think my employer was relieved when I said I could no longer work under the flourescent lighting of the office and had to leave because my eyes closed down at work and I had to be driven home. The boss is the one who signs off on the recommendation for STD & LTD (short and then long term disibility). A person with Blepharospasm is a negative and a liability to the company. If your sister were to fall and hurt herself while at work, the company could be held liable.
Another liability: while trying to keep your eyes open, your work output falls - another thing the management does not want to have happen. Judy
Re: Tell the Boss?
Hi GeriWell, I certainly have to respond to you about this as it really hits home. I retired from state employment in 1993 and was able to get out on an "early out" thanks to our Governor. I was a word processing specialist. I was having problems with my eyes, but didn't know what was going on. All I was told was that I had "dry eyes". I never said anything to my boss, supervisor, and anyone. Call it pride or what, I don't know, but the situation became so bad, I knew I had to get out. Our Governor came to my rescue with the "early out" for state employees who qualified, so I went for it. After I retired (I was only 53) I applied for social security disability. Well, forget that!. Because the doctors only thought I had dry eyes and because I never said anything to anyone at work, I was turned down. It wasn't until 1996 that I was diagnosed with dystonia and then in 1998 I applied for social security disability again. I received my award letter about 6 months later. I didn't need a lawyer this time. Why? because I had good reports from my doctor, plus the SSA administration now accepts dystonia as a disabling disease. My advise to your sister is to talk to her superiors and co-workers about her condition. Have it documented that she talked to them. You can get out on a disability. Good Luck! Carol Brown in Naselle, WA where we had a snow storm this morning. Oh my!
Re: Tell the Boss?
You have already received excellent replies to your questions.
When I was diagnosed several years ago I took copies of a brief description of the disorder and handed it my immediate superiors and said, "This is what I have, so if you see me walking around with my eyes closed, that's why." I just work part time and have never had to miss work because of an "eye shut-down". though sometimes they have been pretty uncomfortable!!
I'm sorry for anybody who has to cope with this order and hope that your sister will be able to continue to keep her job.Cynthia in IL
Re: Tell the Boss?
Hi Big Sis:
In addition to all of the great responses so far, I think it is a tremendous relief to just "get it out there." No more worrying about what people "might" be thinking. Who needs that grief?
Good luck to your sister.
:) Kerry in CT
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