The Words We Use
What’s your first thought when someone tells you they’re sick? What if they say they’re chronically ill?
I ask this because describing such things to others is full of potholes. When someone tells me they’re sick, my first thought is “OMG, I hope it’s not contagious!” I might just take a discreet step back to put more distance between us, hoping that their virulent viral or bacterial guest can’t leap the distance between us and land on me. Should I head for the lady’s room after I shake hands with them to wash my own vigorously with soap and water?
If they say they’re chronically ill, however, my reaction is a lot different. First, I don’t automatically conclude they must be contagious. Then, I feel sad for them because it’s miserable to be feel cruddy all the time. Finally, I feel empathetic because I, too, have a chronic illness and I know exactly what it’s like. Depending on the person and how well I know them, I might even ask if I can help somehow. If nothing else, I’ll show concern and wish them well.
Words have power. That’s why when someone who has rheumatoid disease refers to themselves as “sick,” I want to take them aside for a little talk. In my understanding of everyday speech and semantics, “sick” implies acute illnesses, things like contagious colds and flu caused by viruses. I believe that even though I know the word connotes both the general and specific feeling caused by any type of illness or disease, including RD.
Instead, though, I wish my chronically ill peers would just say they have RD and be more specific about symptoms. Like this: “I have RD. It’s making my joints hurt. It’s also making me feel nauseous and foggy-headed.” They can even say they feel “sick,” if they want, but only after saying they have RD as the cause.
I know. Saying we’re “sick,” without mentioning RD is easier. We don’t always feel like explaining, or want to watch the other person’s eyes glaze over. But “sick” often pushes people who might otherwise be empathetic and compassionate away. And because RD is chronic, causing the same symptoms to crop up repeatedly, just saying we’re “sick” all the time might cause compassion fatigue in others, or worse, frank disbelief.
Living with RD is a constant challenge. I may feel “sick” sometimes because of it, but if I mention it, I usually just say that I’m not “feeling well.” Sometimes it prompts a question as to a cause, and I can answer with the actual--and non-contagious--reason.
If nothing else, maybe I’ve just educated someone about rheumatoid arthritis, increasing their understanding and, with luck, compassion.
I also don’t much like to say “my” RD when I’m talking about it. It’s not mine, after all. I don’t “own” it and I sure never asked for it. For a long time I referred--always--to it as “the” RD, as in “the RD is making my hands ache again.” I stopped that, though. It was just too hard. It sounded odd and awkward, so in the end I joined the crowd and admitted it was “my” RD.
I’ve always been a bit resentful about that, though. Rheumatoid disease isn’t my purse, or my parents, my cat, or my car. It came from seemingly nowhere and took up lodging in my body without my permission. “Mine?” Huh-uh. But I’ve finally come to accept that I’ve got a permanent guest here who’s “mine” whether I like it or not.
How do you refer to the RD you cope with every day?
Have you managed RA fatigue better than you used to?