I don’t discuss certain topics with very many people, partly because I’m rather private that way, and partly because I don’t like being looked at “like that”. Friends and family know I’m sensitive to MSG, most of my coworkers know I have migraines. A few people know I have joint issues, and fewer still know about the chronic pain.
So why am I posting about it now?
A dear friend who is a lovely woman, very capable, strong and incredibly smart, lives with RSD/CRPS. If you’re not familiar with it, take a moment to look at the link. She has been regularly posting helpful information on Facebook. In that, she’s a far better advocate than I will ever be.
She posted a link to understanding chronic pain. And another to the ever popular (and scarily accurate) spoon theory. Another friend posted a link to an article about not calling women crazy. And it was there that I had a moment’s pause, and it had nothing to do with the article itself.
Right on the heels of reading the comments in the Spoon Theory piece (and getting incredibly irritated by many of them), I read the Crazy article, and I came to a realization.
I have minimal tolerance for people who feel they can “fix” my problems – if I would only just… insert whatever miracle cure they feel is appropriate. Exercise more, eat better, take vitamins, switch to a vegan diet, get rid of all toxins in my life, etc. Whatever it is, I can “cure” myself simply by doing the things they say. As if living with chronic pain is a choice, that you want to be doing.
I have even bigger problems with the idea of being considered a mental case. Here’s where it gets really dicey. So many people who are dealing with chronic pain, especially from an “invisible” source like RSD, fibro, CFS, myofascial pain, lupus and things like that, are also dealing with people thinking they’re faking it, or that it’s all in their head, or that they’re not only physically challenged, but mentally incompetent as well. The image of someone with any of the lesser known “invisible” conditions is that they’re an unstable flake.
The flip side of that coin is pity. And let me tell you, pity is even worse. You can get mad at someone who automatically assumes you’re a fucked up flake just because you’re in pain and you don’t have an obvious and visible injury. It’s harder when someone sounds like they’re being helpful.
Truth? I hate asking for help. And I sure as shit am not accepting unsolicited help when it’s accompanied by a pitying, or condescending attitude.
Rounding out this trifecta of of fun is something even worse. It’s others who feel the need to turn everything into a competition. Sometimes it’s whose symptoms are worse, whose fatigue is greater, whose pain management needs are more intense. Other times it’s the game of how much can you do on how few spoons. Also known as, my pain is so much greater than yours but I still do all these things, so what’s your excuse.
The result of all this? I keep my mouth shut. I’ve been dealing with some form of pain for longer than I care to think about, and aside from the migraines, all of it was somehow traumatically induced.
And my point here? Simple… educate yourself, don’t make assumptions, don’t judge, and don’t ever make it a competition. Oh, one more thing, don’t use illness as an excuse for bad behavior. When someone does that, we all lose.
- Discovery Channel Documentary “Pain Matters” Chronicles the Burdens of Living with Chronic Pain (hispanicbusiness.com)
- The Life of this Chronic Migraine Sufferer: Like a Soap Opera many Plot Twists and Turns (julieg350dayinthelifewithmigraines.org)