Public Property: Curiosity, Privacy and Rheumatoid Arthritis

  • "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!

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    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.


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    Navigating this one can be harder - shutting down concern from someone who loves you is a much more delicate matter than doing so with a stranger. It happens, though. Over time you and they learn to do this conversational dance, just as you move around each other in intricate steps on other issues that are there, yet not the subject of every word between you. Whether it's someone's divorce, infertility, a teenager's recent brush with shoplifting or a truly unfortunate haircut, the relationship moves on. Open communication helps, you taking the lead in setting the boundaries and eventually, they get it. Sometimes, your loved one needs a reminder that you are still there, that you still hate broccoli, have an embarrassing fascination with sparkly vampires and snort when you laugh. Sometimes, you need to say straight out I don't want to talk about my RA all the time. And sometimes, you need to briskly and cheerfully turn the conversation to another topic. Pick one of their problems. Nothing is as effective to distract a person than  given them the opportunity to talk about themselves.


    The Benefits of Sharing

    "A burden shared is a burden halved." There is much truth in this quote and it is worth remembering. Animals hide to lick their wounds when injured and we human beings are animals, too, often having the impulse to draw in upon ourselves when faced with troubles. It takes energy, this pretending that things are fine when they aren't, this quest to retain your self when RA is taking over. Sharing this can help. It can be as simple as saying that today your knee hurts or yesterday you barely made it home from work before you keeled over and fell asleep. It can be as complicated as sharing the reality of your emotions, the fear of the future, the battle you enter every day to not let the RA take over. And that is the moment where the caring of others can shift from what feels like intrusion into your private life to becoming a partner in protecting the true you from disappearing. Redirected, it is something that can be used for good.


    How do you manage too-intrusive questions?



    Lene is the author of the award-winning blog The Seated View.


Published On: August 17, 2011