Living with Lupus

Lupus is a humbling disease. The medical field has all these highly technical terms for all of the physical symptoms, but at its stripped down funky center, Lupus is Murphy's Law personified. For all of us who actually live with the disease, it's a BASTARD, robbing us of everything fun and sexy and cool.

For me, Lupus was a cruel joke, played on me by the tiny little evil Board of Directors living in my head, whose sole purpose was to hold meetings and plot ways to completely humiliate me and ruin my life.

I was in my mid-twenties when I was diagnosed with Lupus. Before then I led a typical, mid-twenties life, complete with 40-hour work week and full social calendar. I had a nice apartment, a well-paying job and an active sex life (sorry Dad). The possibility that something was waiting around the corner for me, something that would change everything, had never occurred to me. Instead, I was comfortable in my own ignorance, and while nothing special was happening, nothing tragic was either. I was settling into my own mediocre state of bliss. All of my friends loved me, I was beautiful, healthy, and financially stable.

Then, the roof was blown off and I was exposed, squatting over the commode, with my skirt hiked up and my pantyhose around my ankles.

At least, that's how I felt.

To be honest, when I was first diagnosed, I didn't know what I was in for. At that time, Lupus was that hardly-known disease that killed your distant aunt (whose name no one could ever remember) back in the '70s - you know, the one that was married to Uncle Leon, who used to make that lemon cake? The one from Arkansas? With that gold tooth?

Yeah, her.

Needless to say, I was underwhelmed by the diagnosis, which frankly pissed off my rheumatologist. I knew next to nothing about the disease, even though a friend of the family had lived with it for years. I was just so relieved it wasn't AIDS (which was my initial fear), that I practically jumped in the doctor's arms and kissed him.

I had no fucking idea.

Let me just say that my naivete' about the situation was not entirely my fault. My doctor gave me the impression that after conducting a series of blood test to confirm the diagnosis, he would prescribe a few medications and my life would eventually return to normal. This was fine by me, as I was eager to return to my mundane life.

(The Board of Directors collectively shakes their heads. Poor, stupid girl. She hasn't even met Prednisone).

Well, it turns out my diagnosis was by far the most significant even in my life - something that changed everything from my relationships to my diet. That comfortable, albeit unremarkable existence I was settling into would soon become a distant memory.

Sounds dire, doesn't it? Well, it was - at first. Then, a few things happened in rapid succession. First, I was forced to pare away the people in my life who were no good for me. Second, I learned how to say 'no' to people. Lastly, I paid attention to my body. All of these things I either did not do, or didn't do enough before my diagnosis.

Lastly, my priorities came into sharp, clear focus and as a result, I finally accomplished some things I'd been putting off.

Like, finally getting around to building that zombie-proof shelter I've always wanted. And collecting Idris Elba hair clippings (don't ask).

The irony of it all, is that in the midst of gaining a laundry list of restrictions, I was able to free myself from some of my former hang-ups and fashion my life into something more comfortable for myself.

Most importantly, I realized that I am charged with the task of writing about my experience, in the hopes of reaching out to people like me who live with this mysterious, vindictive disease every day.

And hopefully, while reaching out to others, I can somehow help myself deal with the cards I've been dealt.