“I’m Sorry. It’s Painful.”

For the most part, the pain I’m in is invisible. Maybe at my last district meeting some people noticed that I occasionally lost concentration and began some controlled breathing (it doesn’t stop the pain, but it keeps me from crying out); most of that meeting my big toes felt broken. Maybe my students have figured out why I have them come to me more often than I go to them to give help these days. But you wouldn’t be able to tell how desperately I need that last seat on the bus just by looking at me.

The scooter changes that dynamic. I’ve been in the library and computer lab a bunch lately which are across campus, so I’ve been using the scooter quite a bit. I get the regular concerns from students who had me pre-scooter and staff who either express their concern or crack a lighthearted joke, and I recognize how well-meaning it is, but I’d prefer people see me, not the scooter. If I could make one etiquette rule, it would be: Do not comment on someone’s injury or illness unless that person brings it up first. I can’t help but think about my pain and limited mobility constantly, and sometimes I do want to talk about it, but most of the time I don’t. When I do, you’ll know.

Recently, I had two perfect exchanges with new acquaintances that showed me how great it would be if everyone followed that rule.

The first was with our substitute librarian. I came in with my scooter, parked and plugged in, and settled at a table with my stack of materials for the day, which always includes whatever book I’m reading on the off chance I get to read during passing period. That day, I was reading Living with Rheumatoid Arthritis (highly recommended, by the way). About halfway through the day, the librarian noticed the title of the book. She mentioned her husband has psoriatic arthritis, a closely related disease. Then she asked why I was reading it. I mentioned my doctors were trying to figure out my joint pain and RA was a contender, and she said simply, “I’m sorry. It’s painful,” and then immediately jumped back to more common library-teacher talk. Maybe this doesn’t sound amazing to you, but it was! First, someone actually acknowledged the pain, which I realized in that moment no one had ever done before. There was no trivializing, no “but you’re so young,” no prying into my family history, no vague promises that “it will get better.” It was a blunt acknowledgement from someone who at least understands second hand that the pain exists, and it was beautiful. That was two weeks ago, and I’m still thinking about it.

The second was our new computer lab assistant. He’d never met me before, so the scooter was simply a part of me not needing comment. I spent the entire day in the lab with my students and the assistant, and the scooter wasn’t mentioned once. Lovely.

If only people who I’ve worked with for years didn’t feel the need to comment on every time they see me with or without the scooter. It seems to largely be an issue with people who I don’t know well — precisely the people I don’t want to talk with about my health. My husband has suggested being rude or curt to discourage such comments and questions, but my position as a union rep requires that I be approachable; plus, I like my colleagues, even if there are some topics I’d like to take off the table. I haven’t yet found the polite way to get the comments and questions to stop. When people see me on my scooter and ask, “It’s back?” I’ll say it’s constant or permanent or it never left, but then they’ll see me walking a shorter distance and want to celebrate with me that it’s better. I’ll explain that short distances are okay, but then they’ll see me in my scooter going across campus and start the whole pattern over again.

A while back, one of our secretaries took time off to battle breast cancer. I wished her well before she left, but asked no questions. When she came back, she was crowded with people asking her what sounded like very personal questions about her experience with cancer. It may have come from concern, but it had an element of schadenfreude. I heartily welcomed her back and told her I was happy to see her, then resumed our professional relationship. I never have so much as said the word cancer to her; we aren’t close, and I don’t think that is my place. For all I know, she’s writing a blog post about the teacher who never cared enough to ask about her illness, but I did what I thought was right and respectful. At the time, I was in the infancy of my disability, and the best I could do was to treat her as I wished people would treat me.

I would be interested to hear what my (few) readers think of my etiquette rule.

This entry was posted in Chronic Illness, Disability, Health, Joint Pain, Personal, Rheumatoid Arthritis and tagged , , , . Bookmark the permalink.

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