Tuesday, May 24, 2011

But You Don't Look Sick...

 hello friends

I walk with a cane most of the time, but sometimes I have to use my walker, or my wheelchair. The responses (reactions really) I get are interesting, and always about the same - "how'd you hurt your leg?", or "you're too young for that walker", and "What is someone so young like you doing in a wheelchair?! The comments usually aren't too bad, although there is the occasional bone-headed remark. But what's most disturbing, for me, are the looks, the expressions on peoples faces. They run the gamut from pity, to embarrassment, to disgust.

i have a port because of my vascular disease
When someone gets the nerve to actually ask me why I'm using a cane/walker/wheelchair, which is often actually, I just tell them I have an autoimmune disease called LUPUS and how it affects me - that it's difficult for me to walk, that my muscles have atrophied, and that my balance is horrible because of it. Their response is almost always - "BUT YOU DON'T LOOK SICK?!".
i'm never without my trusty laptop!

Now I know that people mean no ill when they say that. They have no idea how often people with Lupus hear that, and how much it bothers us. It bothers us because, although we may not 'look sick', we feel sick, because we are sick. It bothers us because the way we feel doesn't match with the way we 'look'. And because of that, many doubt us. Many of us may not 'look sick' to others, but they don't see our pain, our achy and swollen joints, how hard it can be to do simple things like dressing ourselves, or our 'lupus fog'.

this is part of the space suite the nurse wears

Because they don't, or can't see these things, us Lupus Warriors can see the doubt in their faces. And that sometimes makes us question ourselves, and we begin to feel alone in this fight no one can truly understand and empathize.
say's it all...

It's hard living with Lupus, but there is support out here. You are not alone. If you feel you are, then please contact me, I want to hear from you, and maybe we can help each other.

be well my friends,
Angela :)

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