THINGS NOT TO SAY ...

Hi Friends!

I'm on a roll today... what can I say ... I'm entitling this ....

THING NOT TO SAY TO SOMEONE WITH LUPUS (OR ANY DISABLING, CHRONIC,
CONDITION ...)

--but you don't look sick. (That rosy glow is my butterfly lupus rash!)
--everybody gets tired. (but most people don't fall asleep at stoplights!)
--you're just having a bad day. (I wish!)
--it must be nice not having to go to work. (Yeah, it's a cakewalk!)
--I wish I had time to take a nap. (See #2, that's what happens if I don't)
--if you'd get out more. (Sometimes my to do list is : 1. Get out of bed; 2. Try to stay awake;
3. Go back to bed; 4. Try to sleep;5. Repeat.)
--you're just getting older. (Do most people attack their own organ as they get older?)
--if you'd get more exercise. (Good, but sometimes hard when every joint is swollen!)
--it can't be that bad. (If you only knew!)
--it's all in your head. (Literally, it's Central Nervous System Lupus -- that's my brain!)
--you're just depressed. (I wonder why!)
--there are people worse off than you. (Of course, but that's not helpful!)
--you'll just have to tough it out. (Thanks for the support!)
--you just need a more positive attitude. (And thanks for your help with that, too!)
--you should start/stop taking vitamins. (Yeah, because you're a medical expert!)
--your meds are making you sick. (Really, or my disabling chronic illness is more real than your
imaginary medical expertise!)
--how do you do it? (one day, one hour, one minute, one task at a time ... with God's grace!)
--why would God do this to you? (He didn't, but He helps me through this!)
--I know someone with lupus, and they're doing much better than you. (Thanks so much.
I am aware I'm a medical rarity!)
--you should try to strengthen your immune system. (Hello, my immune system is attacking
me. We are trying to kill it, not strengthen it!)
--this, too, shall pass. (Yes, and come back, and pass, and come back... they're called flares.)
--Are you cured yet? (Lupus is not curable, but manageable.)


Now, I'm putting this list together in jest kind of, because of all the funny things that people say to you when you're ill. Most of the time it's hilarious how opinionated people are about things they know nothing about. I attempt most days to be nice, and I like to educate people about lupus and especially my rare form of it. However, sometimes when I was doing chemo, and people said things like ... "They don't do chemo for lupus." or "You should put ice/rubber bands on your head so you won't lose your hair!" Well, then I did want to scream. Because I figured, when they hook up the poison antidote to your vein, you get to have an opinion. Until then, either be nice or be quiet.

So, if you can relate to this, that's cool! Or if it keeps you quiet in a situation like mine, oh well! Or maybe you need to print it out for your loud-mouth ___________________.


Much Love,
Michele