Here’s some background–I’ve been a lower-limb amputee all my life, and until the 1980s, the technology for that was, frankly, dismal; I did not run until I was a teenager–I couldn’t run–and pretty much had to decide, every day, whether I was going to be in pain all day wearing the prosthetic, or use my crutches.
As a now-older adult, I’ve developed osteoarthritis here and there (wrists, left ankle and knee) to the point that one of my wrists is fused, and I use a wheelchair at least part of the time, because I just don’t have the energy or pain tolerance to walk. I no longer get to decide if I’ll be in pain all day–it’s pretty much a given, these days. Having been like this for five decades now, my tolerance for pain is pretty high, and I tend to be pretty stoic about it. Long story short, if I complain about it, I’m hurting pretty badly.
When I was a kid, my parents wanted me to have “perspective” about my disability. The basic message was that I didn’t have it that bad, so I should shut up about it. The truth is, I don’t have it bad, either then or now. We had pretty good insurance as a kid, and I have decent insurance now–many people do not. I have a fantastic doctor who listens to me and wants to help–many people do not. I have a great power wheelchair, a nifty walker, and a pair of canes, so I have choices of ambulation method any time I need ’em–many people do not.
My parents’ message of “perspective” came with the best of intentions–I should know and count my blessings all the time, and I do. It’s the second half of their basic message that is problematic. It is an attempt to erase very real pain, and prevent me from complaining about it, or getting any external help to cope with the problems that come with it. Nowadays, as a result of their meddling, I find that I tend to put up with more than perhaps I should, and I push myself way, way harder at times than is truly sane.
To compound the problem, they raised the spectre of “being a burden,” and what a horrible thing it would be to be a “burden” to my family and friends, by voicing my concerns and current state. So I don’t often tell people when I’m hurting, because I don’t want to be a burden. It’s only in recent years that I’ll tell someone who asks…and only tell the true scope of it to people I trust.
Several times recently, I’ve had people try to give me variations on “perspective” when they’ve asked, and I’ve told them that I’m hurting. In every case, I truly believe that their heart was coming from the right place–but some folks may not realize that what they’re doing is erasing and minimizing. Yes, I realize I’ve got it lucky–good finances, grown kids that I don’t have to chase around, a decent doctor, a husband and partner who both support me fully, even taking over some of the heavy lifting when necessary.
…but I’m still hurting, okay? My body is distracting me with pain signals that I cannot ignore, and that keeps me from accomplishing the things I want to do. It raises my frustration with not getting things done, and aggravates my terror of becoming a “burden.” Your “perspective” does not change that at all, it just comes off as a put-down, designed to shut me up. And it’s an indicator that I cannot, in fact, trust you with that information.
And believe me–I won’t.