The L Word

There's a new biologic specially developed to treat lupus, the first new treatment in fifty years, and I am awaiting lab results to see if I qualify. For about one third of patients, it gives dramatic improvement in the pain and fatigue characteristic of the disease. My reaction to the rheumatologist's suggestion that I try it has been strange. I feel devastated that she thinks my case is that serious. I am a champ at denial, and despite having been virtually bedridden at times, I have always thought of my lupus as relatively mild. But I have been abruptly snapped out of that denial. Reviewing my life, it's blindingly obvious that, since childhood, most of my chronic health problems have been caused by lupus. Even my Type 1 diabetes is an autoimmune illness. But my doctors, too, seem to have been in a kind of denial. When I was in my twenties, my knees suddenly went south on me, joints red and swollen to the point that I was often on crutches. But when an intern suggested it might be lupus, my PCP pooh-poohed the idea. If only he had done an ANA test! Although not certainly diagnostic of lupus, the presence of anti-nuclear antibodies at least suggests the need for further observation. I might have been spared a couple of decades of "mystery ailments" and the endless eyerolls from skeptical physicians. Finally, in my early fifties, I was given the  diagnosis of MCTD, mixed connective tissue disease, with elements of several autoimmune illnesses. If anything, that diagnosis is more complicated than a straightforward diagnosis of any one autoimmune disease. But still I was stunned the first time my doctor used the L word. I don't know why that's more ominous; clinically, nothing has changed. For the last twenty years or more I have had debilitating fatigue most days and moderate pain 24/7. I have accepted it. It's almost become essential to who I am, since there was no real hope of relief. Even Fentanyl doesn't touch the pain. Now there is a small possibility that I could get better. I feel excited, a bit fearful, and very, very angry. As I review my life and all its suffering, failures, missed opportunities, and losses, I am furious to think what this disease has cost me. Behind that anger, I suspect there is also a deep abyss of sadness into which I really don't want to look. As in Nietzsche's famous conceit, however, I'm afraid that abyss might end by staring back at me. So instead I wait and entertain the astonishing possibility of getting better. It's only the dimmest gleam of hope, but after years with no light at all, it's enough to see the way ahead.