If I had a nickel for every time someone said that to me I’d probably be able to at least buy a couple of sodas from a vending machine. The first months after a diagnosis of a chronic illness is just time punctuated between waiting rooms. I’ve gotten so used to them that I find them strangely comforting; the rooms whose walls always seem to be painted in hues of taupe or light green, the strange array of magazines, some sort of ficus, the anxious impatient look on everyone’s face. I usually pick up a Time Magazine and absentmindedly flip through it as I pretend not to be eavesdropping on the other patients. When my name is called (and it is usually pronounced wrong) I can feel my heart rate pick up. In those first few months the news is generally not good.
After waiting some more in another generic taupe room decorated with vaguely bucolic paintings the specialist comes in trying to be warm but utterly failing,”There’s erosion in the joints of your left hand,” there’s a forced smile, “but everything else looks fine and we’re hopeful that the medication will work.” She feels my hands, feet and knees and makes some marks on my chart, “We’ll schedule some more blood work and check in again in a couple of months. Hopefully, you’ll start feeling more your age soon.” A nurse hands me a slip to take to the lab and I walk out like a sleepwalker.
I’m exhausted and everything feels inflamed. My GP runs more test and things come back out of whack, but there isn’t a lot that can be done about it. “We’re just going to have to wait and see.” I’m told to avoid stress and do low impact exercise; that’s a tall order for a grad student. I start to slip into a depression and am told over and over again that it will get easier once I learn how to work around my illness. This sends me into an inner rage. I don’t want to work around an illness. I’m in my 20s for Christ’s sake…I thought I had more time to be well. I thought I had more all-nighters, partying and spontaneous adventures left in me. Now to do those things means to pay the price. Everything must be weighed carefully.
I think being angry is a necessary part of the process. I’ve had a little distance from the initial shock and even though I still get resentful at times it is getting a little easier. I was never the all-nighter type of gal anyway and truth be told I would much rather knit with my cat in the comfort of my own house than bar hop. I do miss being able to drop everything for a trip though. I miss waking up in the morning and not struggling to button my pants or pull a shirt over my head, but I still have days where that isn’t a problem. The funny thing is is that after my initial rage, “It gets worse before it gets better” has become a mantra I repeat to myself. It helps me remember that I am still in the early days of this and that I can live a full albeit slower than anticipated life.