We spend months, years, sometimes nearly our entire lives trying to get to know people (and trying to get to know ourselves, for that matter). And then something happens, someone blindsides us, and does something so unexpected, that we don’t know what to think. We thought we knew that person, but it turns out we didn’t know them very well at all.
For me, living with lupus and rheumatoid arthritis means not really being able to know my body. There really is no “normal,” no baseline from which to measure, because things are changing all the time. Sleeping and eating patterns fluctuate, workload increases or decreases. There are a host of variables. And since it’s hard to keep all of those things constant, it’s hard to know when I’m actually sick or when I’m just generally run down.
I try to listen and know my body. But listening and knowing are two different things. Am I sick enough to see a doctor? Have things gotten so bad that I need to go the hospital?
And that’s where I was yesterday. I had a raging sore throat and low-grade fever for a few days. Then I started to have swollen glands and muscle aches. It could have been the flu, or it could have been a flare. And honestly, at this point, they feel the same to me.
As I’ve started to feel better over the past few days, I realize that what I was experiencing was more flare than acute illness. But it was really hard to tell, and it’s definitely within the realm of possibility that it was a combination of the two.
So I wonder? Illness is such a personal experience. We don’t always know the meaning of the way we feel ourselves. So do those around us ever really know us with illness? We spend a lot of time trying to spare those around us the pain of dealing with an ill person. Do we ever take our guard down? Do we ever really show our truly ill selves?
I’ve been hospitalized twice in the last two years. In the hospital, it’s hard to be anything other than sick. But outside of the hospital experience, do healthy people really get it? Do our doctors really get it? Do our boyfriends, or partners, or significant others really ever get it?
Is it quite possible that the only people who ever really get it are those who are also ill?
Is it out of the realm of possibility that those around us will never truly get us?
And that by virtue of our different experiences of health and illness, that we may never truly get them either?
I was vigilant about not feeling well. I monitored my symptoms, and when they didn’t seem to be getting any better, I took action. I went to the student health center. The woman at the intake desk asks me what meds I’m on. She keeps interrupting me and cutting me off. “There are more meds,” I say. Why is she even asking me? I’ve already written them down. And even I need to take out my medication list to remember all of them. I stare in disbelief as one more sheet is added to a three inch pile of papers.
Then I am seen for literally less than five minutes by a nurse practitioner. She makes me feel like an idiot. Like I have something that everyone else has and that I’m wasting her time. But I’m not. Because I’m not like everybody else. And nothing could turn into something. Or something could be a lot worse for me than it is for other people.
But some people don’t understand. They just don’t get it. And they probably never will.
Published On: April 26, 2011