"What happened to you?"
Were you in an accident?"
"So, you can't walk at all?"
I've been visibly disabled by RA - deformities, contractures, scars - for most of my life and have used a power wheelchair for over 30 years. This means I get questions about it from total strangers. Sometimes, it's the person next to me in the elevator, sometimes a random stranger starting a chat while I'm reading a book in the park. Most recently, it was a nurse asking the question while I was visiting my mother in the hospital. This made me worry about the nursing staff's observational skills, as I'm pretty sure RA deformities in the hands don't look anything like the result of an accident!
Public Space, Personal Space
I don't even notice it anymore, just shrug it off. I should say that I notice it enough to usually answer in the service of educating the public at large, but I don't notice the intrusion into my private life and maybe that comes from living with visible RA and the resulting questions for over 40 years. Call it having calluses on your soul. However, the topic's been on my mind after recent posts by community members Ish and Melissa mused on the topic of privacy when living with a chronic illness.
A long time ago, I decided I prefer the questions rather than the not-so-surreptitious stares and adjusted the boundaries of my personal space accordingly. Getting it out in the open and dealt with right away allows you to get on with the actual business of social interaction without the other person positively vibrating with unasked questions.
When I find myself in the situation where someone I don't know is asking questions I give enough information to answer the question in a matter-of-fact manner and that usually does the trick. Most people are sufficiently socially astute to get the hint that we are not going to wallow around in information about my illness. However, occasionally the other person will then start expressing sympathy, sometimes even pity and that's when I start feeling intruded upon. Covered in the honeyed muck of stranger's idea of how terrible my life must be, I'm the one vibrating, but with annoyance.
Visible health problems seem to change your status so you become sort of public property. With this change in status comes in an abrupt shift in the rules of social engagement and no one asks if you consent to this. All of a sudden, it's okay to ask really personal questions about an aspect of your life. And perhaps it's not limited to only health problems, because every woman out there who's ever been pregnant knows about complete strangers touching their stomach and telling them horrible birth stories. Maybe it is not so much an issue of health, as an issue of being visibly different? When you differ from the norm, normal rules don't seem to count.
About More than RA
But what about the questions of loved ones? The ones who ask because they care and then ask again and then again every time you talk to them, leaving nothing but RA between you. Here you are, desperately trying to find spaces that are about the other parts of you, not the illness and nobody is cooperating, pulling you back into being sick over and over.
