WARNING!!!
Things NOT to say to someone with a disabling chronic condition.
…But you don’t look sick.
…Everybody gets tired.
…You’re just having a bad day.
…It must be nice not to have to go to work.
…I wish I had time to take a nap.
…If you get out more.
…You’re just getting older.
…If you’d get more exercise.
…It can’t be that bad.
…It’s all in your head.
…You’re just depressed.
…there are people worse off than you.
…You’ll just have to tough it out.
…You just need a more positive attitude.
…This, too, shall pass.
I wouldn’t wish what I have on anyone, but, unless you get it, you just don’t get it.
I love this. I have heard them all! The worst for me was "you just need fresh air and exercise and you will be fine." This, at a time, when I could barely walk and needed help just getting out of bed. Then after a long time, I realized that, they don't get it, because .... they just can't. LIke you said. And I don't want them to have it, so I have to accept that they don't understand. What I tell people though, is that IF someone makes an effort to attempt to understand, that's the best thing in the world and yes, I will take it! = )
ReplyDeleteI too love this. I’m 51, live in Bklyn, raised in Queens, symptomatic with SLE since 1995, diagnosed in 1998. One of the frustrations of a diagnosis of Lupus is that sometimes you don't look sick, so no one believes you are sick. Systemically, antibodies are kicking my ass, but to folks "you don't look sick". Girl, no one knows what you do to get out of bed, or for that matter, to get in. There are times I have used a step stool, because my legs were willing, but they weren't able. My bed is a bit high though.
ReplyDeleteI have come to realize that there are people who ask "how you doin'" and truly want to know, and then there are people who ask, and don't care. I have cleaned house of the ones who don't care, and to my caring folks I tell them the truth, to others "I'm OK". Ya feel me!
My man ... correction ex-man used to ask how I felt, right after I had a dose of Cytoxan (chemo), and I would tell him how I was feeling, which wasn't good. He would say after that, "so otherwise, you're ok?" I wanted to say "no you stupid fuck, I'm not ok, I have Lupus, and my own body doesn't recognize my own kidneys, so they are pumping this fucking poison into me that makes me feel like shit". But instead I say "yeah". He became history after the last chemo dose, I did not know what the future would bring with CellCept, but I did know that he was not going to be my parachute when I was falling, and I can do bad by myself.
So, blogger lady "How you doin'"
I wish you well, and that is not politically correct bullshit, I mean it. Your heart comes through in your words. You got a reader here.