Having been in remission for almost 20 years, I can honestly make the rather unusual claim that not even the perspective of hindsight has changed my ideas or feelings about what being a pain-wracked invalid was like. Not even a little bit.
I feel like I’m supposed to say the opposite: that looking back, I could have “handled” my disease differently, or learned other, “better” lessons from it, and so forth.
But then, from the very beginning, I didn’t fit the mold of the “disease of the week” TV movie heroine, or some “poster child” for lupus.
Here are some things I learned (or, perhaps more accurately, some pre-conceived ideas I had reinforced) when I was at my very sickest.
Warning: What follows is NOT inspirational. At all.