Processing Opinions and Advice 101: Unknowns
It is a truth universally acknowledged that some people in possession of opinions and advice cannot keep these precious "pearls of wisdom" to themselves. Discussions about what other people should do and how they should do it are as old as the human race.
Opinions you didn't ask for
Picture it: Lascaux, France, on the business end of the Paleolithic. Two cave painters are interrupted by The Sage as they finish up their shamanistic masterpiece.
The Sage muses aloud about the expression in the bison's eyes. Shouldn't it be more naturalistic? And where are the pheasants? All the best paintings have pheasants. I imagine that the transcendent magnetic quality of the Lascaux images flows directly from the painters standing in their deep understanding of the complex and harsh world of antiquity.
Everyone has a theory
It's too soon to say if the copious exchange of feline images over modern communication technologies will amount to Lascaux II, but we know that we're living in a different world. I'm old enough to remember when there was something special about travel, making long-distance phone calls or exchanging letters and packages. The time and expense set some limits on our social circles, confining exposure to interesting, zany, or disturbing world views to holidays and family reunions. Are you smiling? I'm smiling! Modern communications have collapsed these barriers, flooding us with flippant remarks, crackpot theories, debunked studies, and random pronouncements with equal measure.
We don't say this often enough, but some people have literally no idea what they're talking about. This ignorance doesn't require malice or being bull-headed. It's just something that happens. People have different understandings of the world based on identity and experience. In the worst case, we may be so deeply ignorant of the lives other people live that we have no idea of what we don't know.
Spondyloarthritis is nearly invisible in our culture. Most people can't spell or pronounce it, let alone explain what it is. This is a significant barrier to making outsiders understand what we're going through. Most people have experienced pain, fatigue, or uncertainty, but that's not the same thing as living that 24/7. Most people have worried about how others perceive them, but that's not the same as always wondering if people believe that we're telling the truth about being sick.
Some people aren't prepared for us
Health struggles are often perceived in the limited context of our own deeply held beliefs and experiences. This is the sweet spot where fragility and magical thinking meet.
"Life doesn't give us more than we can handle."
"The only disability is a bad attitude."
On the surface, these feelgood statements seem encouraging, but they actually deny the facts of life. Sometimes people face circumstances that are bigger than their mindsets or intentions. Sometimes our bodies limit what we can do no matter how strong our will.
What helps you process nonsense when it comes your way?
Other than back pain and fatigue, what is the most common symptom that AS patients experience?