“Well, You Don’t Look Sick.”

Can I just tell you how much I hate when people say this? It’s a hate so deep, so visceral, that I often break out in hives whenever I hear it. And during those first several years after my diagnosis, I heard it all the time.

Sure, those people meant well. I’m sure they were trying to make me feel good. But truthfully, almost anything else would’ve sounded better than that. Even, “Hey. I hear you can’t go out in the sun anymore, like, on some Bubble Boy-type shit” would’ve received a warmer reception.

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But this… this is just… wrong.

Here’s the thing: everyone who has Lupus understands that this is an illness that doesn’t always have the telltale signs of “sick” like, say, cancer, or leukemia. To be honest, most of the physical signs are usually caused by the treatments, rather than the condition. This is one of the reasons why Lupus is so hard for physicians to diagnose, and why most people take so long to see a doctor. We feel like we’ve been hit by a tractor, but most of the time, we don’t look like it.

At any rate, to tell someone that she doesn’t look sick, when she struggled just to button her own shirt that morning, or could no longer walk without pain management, presents a problem that needs to be addressed. It insinuates that an illness is not serious because it doesn’t look serious, and diminishes the person’s ordeal. I mean, it’s like telling someone, “well, you don’t look broke”, because he’s wearing nice shoes. But those shoes don’t change the fact that he’s only got $30 in the bank until the 15th.

And… the statement also implies that we are lying, or at least exaggerating our suffering (you don’t look like it takes you over an hour to get out of bed in the morning – side eye). This may, or may not be intentional, but it doesn’t matter. This is how it sounds to us.

Besides all of that, it’s just a really mean statement that lacks empathy. I mean, you don’t really know what we have suffered. For all you know, we could’ve spent the last three years trying to convince our doctors, family and friends that something was really wrong with us, only to be told that our pain was psychosomatic, and that all we needed was exercise, some Zoloft and a fucking nap.

True story.

Before I was diagnosed, I was at a point when my entire body was uncooperative. I was suffering from several painful symptoms, including migraines so thunderous that I would temporarily lose sight in one of my eyes. No pain meds would work, and the headaches were coming so frequently that I was unable to work consistently. I was afraid that the migraines were a result of something more serious, so I went to see a neurologist.

The neurologist was a short, nearsighted doctor who had clearly overbooked himself on the day I visited. He barely looked me in the eye as he fired several questions in my general direction about my symptoms. As I answered, he furiously scribbled notes into my file, offering the occasional grunt indicating that he was actually listening. Afterwards, he looked up at me, diagnosed me with clinical depression and prescribed an anti-depressant.

“Doctor,” I said, “if I am depressed it’s because I am in pain. If you get rid of the pain, I won’t be depressed anymore.” It made perfect sense to me. Unfortunately, he didn’t feel the same. My comment was met with stony silence. I left his office just as unsure and frightened as I was when I arrived. The only thing I was sure about was that I wasn’t clinically depressed.

I threw his prescription in the trash and went home. Now keep in mind, I know depression is real, and many people with Lupus live with crippling symptoms of depression.

But this pain, though, Fam. It was more than the garden-variety achiness. It was an actual presence. A bloated, ashy apparition in a bad sweater who drinks directly out of the juice carton, clogs your toilet and doesn’t know when to leave after the Christmas party. Dude says scary shit like, “your couch is so comfortable – I could stay here forever,” and he slaps your arm whenever he laughs. And he’s ALWAYS LAUGHING.

I’m talking debilitating pain that made every day activities like brushing my teeth almost impossible. See? This is what I was living with when I bumped into a family friend outside of the grocery store, about a year after my diagnosis.

Keep in mind, I had known this person for quite a few years before this encounter, and, I mean, he was kind of a dick – I knew this was going to be bad. So, I guess I should’ve expected him to say something callous – just walked up to him, greeted him, then pointed at him and waited. However, I don’t think that there was anything that could’ve prepared me for the level of assholery I had to endure that afternoon.

It was a flawless afternoon, by the way. One of those days that is rare in Wisconsin, so everybody was outside, trying to enjoy it before it snowed again. On days like this, Wisconsin natives are usually in good spirits, and politeness abounds. So it was on this day, with temps in the mid-80s, pristine white clouds and a soft breeze, that this jerk tried to deflate my entire life.

I was coming out of a grocery store when I saw him. Even after I saw him, I was in such a fucking good mood, I completely ignored that tiny voice inside my head (I call it my SHANDO – don’t ask) that suggested that I pretend I never saw him – cuz, asshole. Instead, I turned when he called my name, and waited for him to catch up to me.

Perhaps it was the perfect weather, or the ubiquitous (English degree) feeling of good will that had everybody under its spell, but this guy was actually really nice to me, at first. He asked about my family, gave me brief updates about his own. We talked for about five minutes, and I was beginning to think that some miraculous thing had occurred in his life, and he was a different man.

Until…

“So, I heard that you had been in the hospital not too long ago.”                  “I was. I was diagnosed with Lupus.”
“Really?”
“Yeah. I was pretty sick.”
“I heard.”
(uncomfortable silence)
“Well, if you look this good after getting that sick, you should get sick like that more often!”

This statement was followed by a hearty pat on my shoulder, and a quick wave over his shoulder as he walked away, leaving me shattered into a million pieces. And just that quickly, what started out as a perfect day, turned into a steaming, fly-ridden pile of dog poop.

In retrospect, I probably made more out of this than it was worth. I get it. But for two entire days I obsessed over this shit. Apparently, that day was the best I’d looked in years, and any other time he saw me, I looked like a walking struggle plate. According to this brilliant statement, several hospitalizations, large doses of Prednisone and bone-aching fatigue did wonders for my personal appearance. To him, feeling like I was gonna fucking DIE was GOOD for me.

Okay – so, maybe he didn’t realize how horrible of a statement that was. Just maybe he meant it as a compliment. Maybe, deep within his black heart, this was a harmless, kind-hearted gesture. Something to make me feel better about my completely fucked up situation.

But how horrible is that, really? So, in addition to the insult, there’s pity involved as well? As if telling me that sick is the prettiest I’ve ever looked wasn’t bad enough…

Like I said before, I held onto this for days. Hell, it was easy – considering my low self-esteem going into this situation, plus the dramatic physical changes I had been experiencing due to the medication. In short, I was already a basket case; the very last thing I needed was another hit to my tissue paper psyche.

Even now, the very thought of that day still makes me cringe. Time has done nothing to erase the awfulness of the sentiment, and it continues to serve as a cautionary tale that keeps me from saying insensitive shit to people when they’re at their most vulnerable. Because of him, I am extra careful of the things I say, especially around people who are living dead center of the turbulent eye of their own struggles.

So what’s the big deal, some of you may ask? Was his “compliment” really all that bad? Is this really his fault? Can I really stay mad at him, and could I at least try to draw connections between his comment and all the depression I felt that year? Should this one person’s comment really bear all of the responsibility that I’ve given it over the years?

Well, yes and no.

First, let’s deal with me, and the part that I played in this three ring circus. Yes, I did play a part, simply by focusing on the wrong things. There I was, dealing with some real life and death matters, and what was taking up most of the space in my head? My appearance.

Not my proudest moment, y’all.

Every day, I was confronted with my own mortality, and was unsure of whether my body was going to cooperate from day to day. I was living with pain so severe at times, I could barely speak. And on top of everything else, I suffered from anxiety and depression. But as long as I looked good, all was well.

Because you see, Lupus doesn’t just affect the immune system – it is an illness that changes everything. While the body is changing, the mind is changing too. And depending on the person, it could be a change for the better, or a change for the worse.

For the first few years after my diagnosis, it was definitely a change for the worse. I realize that some of those changes could be blamed on Prednisone (which is an entirely NEW post), but for the most part, my body became very unfriendly. Things I was able to do with ease became almost impossible to do without tremendous pain and/or stiffness. I gained a lot of weight, and my hair fell out – all of it. Within a matter of months, I went from an attractive, young, agile young woman, to a fucking muppet.
It was Hell. I was trapped inside a body that did whatever it wanted, whenever it wanted – and at the time, I thought I was helpless to do anything about it. My body was in an eternal state of “fuck yo couch,” and I believed that it would always be this way – this hostage situation.

And then here comes this ass hat.

Of course, I’ve had several years to reflect on that day, and my perspective is a little different now. I realize that maybe he was just a man with an atrophied empathy muscle. Or, maybe he was genuinely scared for me, and that was his gloriously unsuccessful attempt at trying to make the both of us feel more comfortable. Perhaps he was understandably nervous, and after frantically searching for a nice thing to say, that was the best he could do at that time. Whatever the case, his comment did more harm than good. And it wasn’t his fault.

And I almost forgive him.

I haven’t seen him since that day. But I’d like to think that enough time has passed, and enough personal/spiritual growth has happened since then – and that maybe I could reach out to him. Show him that there’s always a kinder, more empathetic way to show his support.

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