Lucky you, getting to take an extra long weekend.
Your’e so lucky you don’t have to stay late tonight.
Must be nice to take time off.
I wish I had an excuse to get out of that thing too.
Okay, wanna trade places? You can have a chronic pain condition and I can have the ability to work full time and commit to a calendar full of social engagements? Yah?
I’ve encountered these kinds of phrases infrequently, and when they are blurted at me, it’s usually by people with whom I am not close, who don’t know much about my situation except that I can only work part time due to migraine. Most of the time, these passing comments probably have very little –if anything– to do with me, having much more to do with the simple fact that the comment blurter is tired and badly needs a break from work-till-you-drop demands.
I can empathize here. I used to be a work-till-you-drop healthy person, and I probably needed more breaks than I got– or that I allowed myself– and it was hard. Knowing that these comments are not about me is important. It helps me keep my distance, because it is so important that I do not define myself by how others might see (or not) see me. But the fact that these comments are said without my situation in mind is not good enough. It’s a problem, not only because these comments can sting, but also because they are indicative of a larger societal ignorance about illness.
We aren’t really ever asked to think about what it’s like to have chronic pain or chronic illness unless it happens to us. I know: I didn’t give the topic any of my time before I got sick, and I even had people in my life with chronic pain whose plight I routinely dismissed. It’s so much easier to think that someone’s pain is their own fault, that it’s not that bad, or that it allows them bonuses healthy people miss out on. As pointed out by some fellow tweeters recently, this denial is widespread:
@pillsandpebbles We live in a time where society desperately tries to push away disease & death instead of accepting them as part of life.
— Kit (@arainbowatnight) May 21, 2015
Why aren’t we taught that chronic pain is a relatively common affliction? Why don’t we know that chronic and/or invisible illness is a normal part of life for so many people? Why do we hold perfect health as a golden standard that everyone should be able to reach if we just buy the right products and make the right choices?
Perhaps because the truth is harder? Perhaps because parents want to protect their children from harsh realities? Perhaps because none of us want to believe that these things can happen to us? That we have more control over our own bodies than we really do? Perhaps because capitalism?
Whatever the reasons for this widespread ignorance, it makes it hard to come to grips with the fact that someone else’s persistent, invisible pain is truly a struggle. Even if we can comprehend the enormity of that struggle, our first instinct is often to try and fix it; to offer advice that is so often void of genuine understanding. It’s much harder to accept that the best way to offer support is to simply to acknowledge the struggle; to say I see you as you are. I believe you.
If the acquaintances who uttered these comments took just one moment to think about what it means to have your life turned upside down by chronic pain: to not be able to work full time and have to re-structure your whole career; to lose the greater part of your social life; to drastically change your daily habits; and to live with frequent, disabling pain, perhaps they would instead say things like,
I hope your extra long weekend is an extra restful one.
Hope you get some pain-free time tonight.
I’m sorry you have to take time off. That must be hard.
Sorry you are not able to attend the thing.
Then, they could lament their own tiredness in a different breath that IN NO WAY implies that I am getting some kind of unfair break.
While I might take some pleasure in the occasional sick day that is more about pain prevention than immediate disabling pain, I promise I’m not getting a free ride here, and despite the profound life lessons found in a life with chronic pain (thankfully, there are a few), I would gladly trade places with you. Any day.
p.s. If you’d like to follow the blog on Facebook and take part in migraine-related discussions there, I made a page for that: https://www.facebook.com/migrainebrainstorm