I can sympathize. For years I have gotten this. They want to know the intimate details of everything that goes on with me. I know it is that they care but it creeps me out and is uncomfortable. At least it is better that they care than get fired. I have been fired a lot. Always at work rain or shine. I have left hospitals just to be at work on time. Smile, even though I feel horrible and want to roll over and pass out somewheres. Just so it doesn't affect them. I never complain for fear of causing anyone discomfort. People take off work just because they got the flu, but I can't because I have lupus and I don't want anyone to have an excuse for firing me.
I am fortunate now. I have a great boss, who sees I am sick and just sends me home - without reprecusions. I still live in fear though. Conditioned that way I guess. This is the longest I ever kept a job - 2 and half years. I am smart and talented, but I have bad days and good days like everyone else. Unfortunately, when you are sick, everyone hones in on that. It is tough to hide it all the time and people get upset with you when you don't tell them and tired of you when you do. It feels like a no-win situation. It really isn't their business, but try telling them that. Best you can do is educate them on lupus and be yourself.
My friend and co-worker died a couple of years ago from the disease. She handled the matter so gracefully. Even though she was sick, she was happy, the hardest worker there and a pleasure to work with. When she had a bout, she would casually explain the illness but briefy, thank the person and walk away. No one felt out of place and she still maintained her dignity. I try my best to be like her. I have a harder time though. I don't like to be reminded constantly that I am different or that I have the disease. I want to be recognized for me and not my appearance or my sudden lack of ability.
It is hard to not act like you have a disease when you do. I don't understand what the big deal is anyway. People are still just people. Well just some of my thoughts on the issue. I hope you find your way through it and find a comfort zone. It is a difficult balance. Take care - Kristin
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I completely understand everything your going through. I get the same thing sometimes. I hate it when they also say "well you don't look SICK." "you just need to get to bed earlier and you'll feel much better." Oh I wish that was the magic trick. Or this one " you look sunburned....thats good that your getting some sun." And I haven't been out in days. It doesn't matter how you explain it I think there are some ppl in the world that are retarded when it comes to understanding Lupus. I'll take a dozen tshirts please.
Maybe all these ppl can qualify for SSI based on being retarded. LOL Anytime they talk to you just imagine their brains being the size of a pea.
Lots of hug,