Friday, February 28, 2014

"You look healthy!"

"You're looking well." "You don't look sick." "You look perky!" [Grrrrrrr...I *hate* that one!] "You look better."

These are all phrases doctors (and others) say that drive me up a wall. Especially when doctors say them. Let me translate the above phrases into what I hear: "Why are you bothering me? You can't be all that sick if you look normal. Go away." For all people who think this way, I have only one thing to say [close your eyes, mom]: Bite me.

Here's a secret for you: The sicker I am, the more care I put into looking normal. Or better than normal, if I can manage it. As everything else spirals out of control, I cling to the little things over which I have some control...if that is limited to wearing nice clothes, then I will be wearing the nicest clothes I own. But wait, it's not that simple. Let's pay attention to the man behind the curtain for once, and see what goes on behind the scenes of a "healthy" looking lupus patient...


I like nice clothes. I wear nice clothes. However, any designer clothing I'm wearing was either a) bought at a discount store/website or b) (most commonly) bought on ebay. Why? Two words: medical bills.

Also, look closely at my wardrobe...notice anything? No? Good. What you're not noticing is that there aren't a whole lot of things with lots of buttons. Buttons + arthritic hands = not so good. I own lots and lots of non-buttoned layers for when I go through fever/chill cycles.

I also have two sizes of clothes: "relatively small" and "starving to death." Which size I wear depends on how badly my gastroparesis is acting up. Keep in mind that I'm 5'10"/176cm tall, and it's quite difficult to find clothing as it is. For all that "freakishly tall and starving to death" is supposed to be our culture's sick ideal it is actually quite hard to shop for.

I also wear cute shoes. I once started a trend for cute ballet flats in my department. However, I have never set a trend for heels. I wear the cutest flats I can find so that nobody notices I'm not wearing heels. Heels and arthritis are also not a great mix. So, bring me your leopard print flats with bows on them and I'm your girl.

I wear tons of scarves. One reason for this is that I lived in France briefly. Another reason is that there are few things better than scarves/shawls for layering. A third reason is that scarves block the sun without killing you with heat in the summer. Scarves = friends.


I wear make up the way an actor does: to help me play a role. The role I'm playing, of course, is "normal girl." If I don't wear make up I slip back into my role as "sick girl," or "Caspar, the Friendly Ghost." But even here there's more to the story than you might realize. For example, my face powder is chosen because it has an SPF rating of 55. That's better than many sunscreens. My eyes tend to be what is euphemistically called "smoky" because "smoky" means "smudged," and smudged is about all I can handle with my shaky hands. If I try to use the high-precision ultra-fine liquid eyeliner used by my healthy sisters I end up looking like I was attacked by a three year old with a magic marker. "Smoky" is therefore another of my friends.

True fact: My hands look terrible. They tend to turn funny colors, whether bone white (when cold) or lobster red (when inflamed). My knuckles are also somewhat crooked, probably due to arthritis. Add that to four scars on my wrists from various surgeries and nails that shatter due to nutrient deficiencies/lupus medications, and you don't have a pretty picture. There is not a  hell of a lot I can do about this. What I can do, however, is essentially say, "Look shiny! Pay no attention to anything but the shiny things!" I tend to have pretty fingernails. Due to the aforementioned shaky hands, I am not good at painting them myself. This means I rely on my long-suffering roommate, nail polish strips, or a nice lady who will paint my nails if I give her money. Even the basic act of getting a manicure is complicated by lupus, though. My manicurist always urges me to get a "gel" manicure  because they last longer. Totally true, but there is no way you're getting me to stick my hands under a UV light to set the polish. No way, no how.


Yes, I go to the gym most days. I'm sure that there are many people who think that, if you can go to the gym, you must not be sick. Wrong, folks. Guess what? I'm not one of those women who is running 100 mph while lifting weights and doing jumping jacks with a jump rope. Nope, I'm walking on the treadmill. Me, a former cross-country runner, walking. Woo. And yes, I do some light weight training. You know why? I'm osteopenic, one step away from having osteoporosis. I've been on so many steroids and have had so much trouble absorbing nutrients that my bones have been leached of Calcium. In order to avoid developing osteoporosis I have to do weight-bearing exercise. This is not optional. I am way too young to be worrying about breaking a hip.

Take Home Message

I suppose you could say I'm high maintenance. After all, I require several handfuls of pills every day just to function. Oh, and there are the clothes and stuff, too. Living with lupus while looking normal is a demanding role, and I have to dress the part. Costumes, stage make-up, dancing shoes, the whole works. I spend much more effort trying to look normal than many people spend trying to look fabulous. I don't apologize for this. I'm trying to get to your baseline, people.
And for those who have a problem with that, I will point you in the direction of another lupus patient who has been told what she can't do with lupus. (Caution: very bad pop music ahead).


  1. All of the photos I have seen of you look really good--even a couple taken in the hospital. So you are an excellent actress, and you have very good taste in clothing and make-up. But if I ever saw you looking 'perky', especially if I were a doctor, I think I would duck.

    1. Thanks, I'm glad I play the role of Healthy Girl well. The oddest thing is that that particular doctor *knew* I was a black belt. I guess he was counting on the lupus to keep him safe.