Sure, I’ve told my family and a few close friends about my flares, large and small. They know my history—the decade I spent nearly crippled and the one following, during which I enjoyed a long, near-complete, inexplicable but relieved remission. They know that the pain is back, too, and that while it’s frequent, it’s comparatively mild. Mostly.
But they don’t, of course, know my mind. They don’t know—or rather, they don’t comprehend—that the pain is always. Terrible or mild, it never really goes away. Even in the rare moments when the pain does actually disappear, there’s always that niggling question: when will it be back, and how bad will it be when it hits?
With rheuma, one is always in the various stages of girding one’s loins for the next skirmish, aware that it may quickly become a full-fledged battle. And while I’ve never lost a battle against RA, I’ve never entirely won, either. More often than not the rheuma-dragon and I limp, exhausted, to our opposite corners to take stock and rest up for the next fight.
And that long remission? Wasn’t that a win? Oddly, to me, it wasn’t. The dragon simply went into hibernation. He wasn’t gone. For about six years I got to live, pain-free, on borrowed time. But I knew down inside that he’d be back one day. He wasn’t done with me.
No one in my family is aware of how I perceive this disease. What I just wrote above would probably surprise them, even if only for a short time. I don’t blame them for their lack of deep concern; after all, the Wren they see day-to-day is the Wren who’s coping with the pain quietly and getting on with things. You know: Keep Calm and Carry On. (I’ve adopted the words from that famous British poster as my RA mantra.) Since my pain is (knock wood) rarely disabling these days, my family’s reaction to me and my RA is normal and acceptable.
And now I come to the point of this post. It’s hard for me to describe how glad I am to have found all of you, my fellow rheuma-fighters. It is such a comfort to read your posts and comments and realize that you get it, that you know the pain I’m writing about intimately, that you understand how embarrassing and even demoralizing it is to have to ask for help opening the jam-jar or, in bad moments, cutting up your meat.
You understand how the rheumatologist becomes the Rheumatologist, almost the most important person in your life, save significant others, and sometimes he eclipses even them. You get the resigned acceptance that comes with knowing He will not see you again for three months, and that feeling of hope, laced with despair, that comes with starting a new treatment. You understand the frustration of knowing that the new drug probably won’t show any results—except unpleasant side effects—for at least six weeks, and probably a lot longer, even as you hope against hope that maybe you’ll be the exception to the rule. Maybe by this time next week your pain will be gone and the disease under control.
And oh, your empathy. It radiates through the ozone from your supportive, encouraging, often humorous blog posts and comments. How do we do that? Where does that humor come from? Here we are, hurting and sometimes disabled (often permanently) yet we find the humor in the situation and share it with our fellow rheuma-fighters, hoping to buck them up a little, knowing how much it helps. What is that?
I ‘m so glad I decided that day, about three years ago, to search “rheumatoid arthritis blogs” on Google. I never expected to find so many—and not just the blogs, but the living, breathing, people-just-like-me who write them. I count you as my friends, now. My fellow-travelers.
Thanks for being there for me. I’m doing my best to reciprocate.