Malarface, a Butterfly Rash Story

malarfaceAutoimmune malar rash, a.k.a butterfly rash.  I have it.

I have these bright red flags on my face that signal a flare.  My cheeks, just below my glasses, always glow a little, but when I start to get sick, they are really bright.

I have the rash right now. And I’m pretty cranky, so here’s what I’m thinking about as my cheeks start to burn.

One of my friends has Lupus, but she doesn’t have a malar rash.  She said something weird to me a while ago.  She said, “I wish I had a butterfly rash too, so people could see when I’m sick”.  I was a little struck by this.  It was like the time my nurse quipped, “at least you don’t have to wear deodorant”, when I called to report that I couldn’t sweat.

Here’s the thing.  “Nope.”

I don’t get a choice.  I don’t want everyone to know that I’m sick all the time — especially the people at work — and a rash on my face doesn’t help.

Maybe they were trying to make me “feel better”, but it came across as obtuse and thoughtless. In the nurse’s case, I figured she was just stupid and I don’t have time for that. In the case of my friend, however, I was hurt. And then annoyed.

Big sigh.

Having a malar rash is awful because, aside from the fact that its uncomfortable, people don’t think “Oh, no! She’s sick. Let’s surround her in an envelope of our compassionate love“, they think something else, like, “Boy, she must drink an awful lot!”. There is no quarter given and no compassion shown. So, I think I stand with all the other butterflies when I tell you that there is zero advantage to being marked like this. Having a malar rash totally sucks and I hate it (so there!).

Anyway, although I’m venting with this post, the point is that saying things that trivialize misfortune is an excellent way to tell someone, “I don’t care about you”.

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