Last Saturday I had my 2nd full infusion for an advanced refractory case of RA that has moved into my lungs. It took 6 hours and that's a sign it went well. The first was a 9 hour ordeal that left me with my head in a trash can dry heaving and full body chills. My blood pressure dropped to 86/49 and talk of movement into the hospital began. The room spun and my chest closed up on me. Needless to say, it was a long day.
It's hard to describe to others the layered process by which an invisible disease takes over what was once a health-centered life. I downplay the effects, often focusing on comforting others or making light of the process. "I'm fine, not a big deal," - it's just easier this way. The truth is, I struggle with a disability every day. Getting out of bed in the morning is a chore. My hands are clawed and unrecognizable, my right knee often stays fixed in place for well over an hour so my trek to work is done with a limp. It takes hours for the body to warm up and unbuckle these joints. I manage this process every day, carrying around my own silent albatross and coaxing him into the calm.
The term Rheumatoid Arthritis is limiting and confusing - my joints hurt but not because of wear & tear - my immune system is actually eating itself. Attacking the body in it's own confused attempt to "save me" from what it sees as an intruder. The disease has gone into my thyroid, my lungs, my eyes. My body has changed and my mind has to pivot to keep up.
It's a lonely disease. Isolated more so by the fact that we look well enough to carry on and yet the pain is constant. Whenever people comment, "well you look OK, so you must feel well," I want to tell them it's a lie - an act I've perfected and worked on to ease the embarrassment of trying to explain how damaged I really am inside.
And yet, isn't this the parallel? I've found in my work that I coach people who are all silently struggling with one thing or another. The hurt is palpable and yet never quite comes to the surface. My ability to cope has come from the realization that we are all singularly searching for understanding from another, often hiding the most painful parts in an attempt to create that connection. I often tell those in my office as they comment on my illness that I'm not so unlike them or anyone else - the only difference is my suffering has a name, a diagnosis.