“It Must Be The Weather”: Searching for Chronic Pain Explanations That Don’t Exist
My chronic pain, caused by axial spondyloarthritis, makes no sense. It just hurts. Last week, for example, I did everything I’m “supposed” to do — I exercised and stretched daily, ate well, and took my medications on time. But guess what? I still ended up with stabbing pain in my lower back and hips. That’s because my pain is unpredictable and has no clear cause. It just attacks, whenever and wherever, regardless of external factors.
Sometimes there's nothing to blame
However, this lack of explanation for my pain boggles the minds of non-chronically ill people. They can’t wrap their minds around the fact that I can be functioning one day and limping the next — even if all other factors stay the same. They think there must be something to blame, and so, they come up with explanations, like “it must be the humidity” or “it must be the cold” or “it must be because you walked too far” or “it must be because you were slouching.” They search for anything to justify my pain, instead of accepting the true explanation: there isn’t one.
Of course, there are some things that worsen my pain — like standing or sitting for long periods — but they only slightly increase the pain that is already there. Yes, standing makes my SI joints burn like crazy, but that isn’t the root of my pain or flare-ups. The pain itself, including its highs and its lows, is independent of all external factors and choices I make.
My pain is unpredictable
When someone says, “it must be the humidity,” there is an assumption that my pain is only bad when it’s humid outside. And when someone says, “it must be because you walked too far,” there is an assumption that I have a level of control in this arrangement. These statements invalidate my reality, which is one of unpredictable, nonsensical pain. Believe me, if any external factor was the cause of my pain, I would have figured it out by now — I don’t need you to theorize for me.
I understand that no one likes the idea of me being in constant pain. They want to believe that pain is something I only experience sometimes, when the conditions are right. But chronic illness is chronic, so my pain is always there — sometimes at its worst when I’m doing my best and vice versa. If I say I’m in pain, please just acknowledge it, without searching for an explanation that doesn’t exist, or asking me “why?”.
I've accepted the uncertaintly
When my pain spikes, it’s not because of the weather or my activity or my posture — it’s because of my autoimmune disease, and I can promise you that my immune system doesn’t check the forecast every morning. Living with a chronic illness means accepting uncertainty. Instead of blaming other factors for my pain, I’ve accepted that it is largely out of my control, even though I do everything I can to manage it. Accepting the uncertainty with me is a step towards better understanding my life with chronic illness.
Which lifestyle changes have you made due to AxSpa?