I'm still sorting through my life, still piecing together things that should have been red flags. I never would have guessed I had lupus in a million years. It was all there, if I had known what to look for. Even with the lab work printed out in front of me last week, I didn't know what it all meant. This isn't something most of us are trained to recognize. People don't talk about the symptoms and signs. Almost everyone I have told has empathized, and several people said they have an uncle, or a mother-in-law, or a nephew with it. But the statistics I found yesterday said that there are (at least) a million and a half people in the US with lupus, five million worldwide. Five million out of seven billion is a remarkably small number. What a lottery to win, eh?
Ten years ago, I was working as a contractor on a remote army post in California. I was an education counselor, helping soldiers with their tuition assistance. The education services officer (a civil service position) and the secretary for one of the universities at our education center and I were thick as thieves. We went to lunch together nearly every single workday, over at the dining facility that was open to civilian workers as well as soldiers. These ladies insisted that we should walk to the DFAC every day that it was possible rather than driving the not-quite-one mile. It wasn't like the air conditioning would have cooled off our cars in that distance anyway. Where this post was located was in the heart of the Mojave desert, closer to Death Valley than a city of any size. All summer long, we walked in the blazing sun, even when the noontime temps were over 115 degrees Fahrenheit. I didn't complain about the sun and heat every day; I just did it often enough that they knew where I stood on the subject. But I felt the burn every single step and I hated it. Now that I look back, I understand why those walks were so particularly dreadful to me, and why my two BFFs thought I was being such a whiner. They honestly did not know it was so painful for me to be in that bright light. My family were equally in the dark (pun intended) about how living in that desert affected me. They thought my bad attitude about the place was just because I was an unpleasant person. Not one of us legitimized how it was physically affecting me--not even me.
Somewhere in the last 72 hours, I have finally accepted that this is real, and after all this time, for the first time, I have given myself permission to feel. I have been in denial since I first got pregnant with my older daughter, and fought anemia and fatigue that overwhelmed me. (Even my great-aunt fitness-shamed me when I was pregnant, and tried to walk around Wintersmith Park lake with her, and I couldn't keep up with a 70 year old woman to save my life.) It was in the months immediately following the first birth that my body started to turn against me, but it wasn't until the second pregnancy that open war was declared. I can remember sitting on my brother-in-law's couch while pregnant the second time, feeling like I was melting into it, having shock waves of pain each time the rambunctious nieces and nephews bounced into the couch and shook me slightly. In the intervening two and a half decades, I have felt that lethargy and desperation thousands of times, but always had to pretend that it was all in my mind. I had to smile and help people at work when all I wanted to do was go home and lie on the couch, curled up around a soft cat or two. Today the Oatmeal (the brilliant web comic) posted a drawing illustrating the truism "Sometimes the ones who smile the most are the most broken," and it was spot on in artistic expression. But this weekend, I finally allowed myself to embrace how I am really feeling, and stop lying to myself. Now I can catalog it, and I notice the bad taste in my mouth, the continuing feeling of having a slight fever (even though it is no higher than most people think is "normal"), the frequent low-grade nausea, the persistent fatigue, the aches and pains. I am in danger of wallowing in it, but after all this time, I think I earned the right to feel like I do.
And, just because it was the day for it, there's this:
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