About a year ago, I ran into an old, family friend – by “old” I don’t mean “long time”, but rather, he’s just this OLD dude I know. It had been several years since he’d last seen me, and he had heard that I had a “health scare” a while ago, so he asked how I was doing.
Doing well, I said. I gave him the short list of all the awesome shit I had been doing since we’d last talked. I placed special emphasis on the accomplishments (Master’s Degree, good job, recordings, performances) and deftly skipped over the unsavory parts (falling down an entire flight of stairs at work, car accidents, failed relationships, failed projects). While I talked, he looked me up and down.
This made me uncomfortable, because frankly, I’d always gotten a slimy vibe from him, and felt that if given the opportunity, he would brush his hand against my ass “by accident”. So, I began to look around nervously for a reason to end the conversation and get away from him (please, God, let a car full of midget circus clowns pull up). Soon, after my voice trailed off, he said:
Well, you LOOK great.
Over the years, I’ve heard several versions of this statement, from the harmless you look great, to the passive-aggressive, backhand slap: if that’s how you look when you’re sick, you should get sick more often (someone actually said that to me, about a week after being released from the hospital). But this statement, among others, merely indicate a deeper issue, which I shall discuss here. In short,
People will never understand what I’m going through.
The minute I realized that and accepted it, my condition became infinitely easier to handle. Before that miraculous moment, however, I was always angry – and it probably didn’t help that I was taking sledge hammer amounts of Prednisone at the time, and I was a raving lunatic. Anyway, for about five years after my diagnosis, I was consistently frustrated and depressed, wondering why everybody was being so callus towards me. To me, it seemed as though my family and friends were ignoring my potentially life-threatening illness, making the same demands they made before the diagnosis. It was years before I realized why.
I really didn’t look sick.
But God help me, I was. I was SO sick. So much so, I was unable to comb my own hair. But try explaining that to someone else. It will usually go like this:
Me: I don’t feel good today.
Them: Really? What’s wrong?
Me: I don’t know – I’m just really tired.
Them: Shit. I’m tired too. I just worked a ten-hour…
Me: No. No. I mean… I can’t lift my arms above my head.
Them: Well, why don’t you take a nap? You’ll feel better afterwards.
This pretty much sums up all of the conversations I had during the first few years. Hell, I still have them every now and then. Basically, no matter what words I use, what flowery, vivid metaphors, people just don’t get it. Not unless, God forbid, they have Lupus themselves. Or they live with someone who has it.
Lupus is really a tricky disease, because it manages to come without some of the telltale signs of other illnesses, while at the same time impersonating other illnesses. A cruel conundrum. A painful mathematical equation.
As for me, I had few indications that I was really sick. Sure, I was tired, my weight was dropping without me even trying, and my joints were on fire – but all of these things could be explained. Tired? I was working 40 hours a week, singing in a band on weekends, and keeping up an active social life. So, yeah. I was tired. My weight was dropping because I had recently changed my diet – drastically. And as for the flaming joints – my job consisted of about 75% data entry. So, just chalk it up to Carpal Tunnel Syndrome. How was I to know that my body was destroying itself from the inside out?
And that’s just it – it happened on the inside first. Lupus was a bad tenant – moving in, cutting up the furniture, pulling pictures off the walls, breaking the linoleum in the kitchen floor… all without attracting the landlord’s attention. So, there I was, The Landlord, going about my daily routine the way I’d always gone about it, except then I was taking extra naps, buying smaller clothes and wearing wrist guards to work.
And I was still looking (relatively) healthy. In fact, the weight loss had done wonders for my social life. I was getting attention that I couldn’t buy less than six months prior. I was loving it. Sure, I had to take an extra nap before going out on a date (and no, I didn’t think that was especially odd), and perhaps take a few more Advil beforehand so that my hands wouldn’t turn into claws halfway through the date (which I also didn’t think was abnormal), but hey.
Friends continued to compliment me on the weight loss, saying how ‘healthy’ I was looking. So you see, I wasn’t the only one ignoring the signs. They noticed the wrist guards, the rapid weight loss, my inability to stand or walk for long periods of time, just like I did. Yet they congratulated me, asked me for advice (how did you do it? You look GREAT!), and everything was beautiful, I thought.
I couldn’t have been more wrong. Immediately after my diagnosis, that awkward period of denial during which I tried to hold on to the lifestyle I used to have, while simultaneously expecting everyone else to treat me differently, I wallowed in self-pity. I’d never felt as alone as I did then – I was convinced that no one, in the entire world, knew what I was experiencing. What didn’t help my situation was that periodically, usually when I was at my most vulnerable, some asshole would say: Wow. If this is how you look when you’re sick, you should get sick more often.
Unbelievable, right? I thought so. Of course, now that I look back on that time, and on those people, I realize a couple of things. One, they’re assholes, like I said earlier. Two, they’ll always be assholes, and there’s nothing I can do about that. Finally, they don’t matter.
What matters, in the final analysis, is that I am living (and quite well, thank you very much) with this condition, and I am my most pressing concern and priority. It has taken me several years to come to grips with this, and finally make the necessary changes in my life to accommodate this new reality. Now, I am an expert in the use of “no”, and have learned to stop and rest when the telltale signs of a Lupus flare-up begin to appear (fatigue, headaches, aching joints, severe muscle spasms, loss of appetite).
I have also acquired the unfortunate ability to prune any individuals from my life, whether family or friends, who do not support my goal to maintain a peaceful and (relatively) stress-free life. Along with this, I am learning to forgive myself for making these adjustments.
And finally, I am able to concede that yes, I do actually look good. For someone with Lupus.
