Saturday, August 27, 2011

You don't look sick... but you do look tired.

Those of us who are lucky enough not to have any external manifestations of our auto-immune disorders often run across this loaded observation: "You don't look sick." That is to say, those of us who have (at least so far) escaped deformed joints, canes, crutches, or other visible signs of disability are frequently in the position to explain how exactly it is we could be ill when we look just fine.

Sometimes I think it's meant as a compliment- throughout all of this bullshit, I have managed to remain unscathed enough that people would not have guessed I have a chronic illness. Sometimes it's more of an accusation, implicit in which is the assertion that this disease can't be all that problematic if I'm walking around looking normal. Either way, it's often a little difficult to know how to respond, and on the wrong day it can really put me on the defensive even when I have no need to be there.

Anyway, today I had kind of an ugly experience in a major department store that was a direct consequence of not looking sick.

My fiance needed pants, so we dropped by this store to pick him up some jeans and ended up shopping around for a few minutes and grabbing a few shirts. Because department stores magically make ringing up 7 items into a 20 minute ordeal, we were standing there for a while and the employee seemed to feel the need to make conversation. We had purchased a $5 coupon-thing that gave money to charity and entitled us to some discounts around the store, and the clerk was recommending to my fiance we shop around some more to take advantage of it when this little gem popped out of his mouth:

"But she looks tired, she wants to go home."

Sick or not, no one likes being told they look tired. It's an insult (It is. Really. No one ever says, "Wow, you look fantastic- so tired!"), and I can't imagine why someone in customer service would ever say it. If I were a regular, healthy girl, it probably still would have bothered me because hey- it's kind of rude.

But I'm not a regular, healthy girl. My fibromyalgia is raging out of control and I've been feeling like ass for a couple months. As we all know, one of the main symptoms of fibro is being tired as all hell, both from being in pain and just generally being fatigued. I'm not tired because I didn't sleep enough and I'm not tired from walking around the mall. I'm tired because I'm sick, and telling me I look tired makes me acutely aware of the fact that my so-called invisible disease isn't really all that invisible.

I'm pretty confident this guy would not have told a cancer patient that he or she looked tired, or someone using crutches or a wheelchair. He wouldn't have said it to someone who was injured, or someone with a cane. But he did say it to me. Obviously, there's no way this dick in the men's department could know that I have fibromyalgia because Hey- I don't look sick. And while I would generally recommend in any circumstance to avoid observing someone looks tired (see above re: rudeness), it's worthwhile to consider that for some people, looking tired is the only outward manifestation of their pain and disability.

Not looking sick is can be a mixed bag- on one hand, it means that I've kept my RA under control and I count my blessings about that almost every day. But on the other hand, it means that people can't and don't guess what's going on inside. What this guy probably thought was a flippant, unimportant observation made me feel damaged and insecure.

At the time of The Comment, I kind of whipped around and turned my back to the guy, because I felt this rush of emotion and I got a little paralyzed about what to do. My fiance was looking to me to decide whether he should respond, but because I just looked dazed he was afraid of embarrassing me and said nothing. I ended up scampering out there as fast as possible, but as soon as I was in the car I regretted it.

This whole not-looking-sick thing is part of why there is a lack of awareness in the general population about what our community is dealing with, and as a feisty representative of the immune-challenged (or is it immune-gifted? I can never decide), I should have stood up for myself. I missed an opportunity to give someone a little insight, and that's a shame.

Also, I bet he would have felt like an asshole, and I wouldn't have minded that either.

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