I have been suffering and surviving with fibromyalgia for over 10 years now. I still feel guilty that I’m not working. My sister still doesn’t think I’m sick. Most of my acquaintances have no clue how much pain I’m in.
Why is chronic pain is so hard for people to understand?
One obvious reason is that it is not usually visible. If I turned green from head to toe, people would surely be taken aback. But not only do I look “normal” on the outside, I make an effort to put on a “happy face” for those rare and few hours I actually leave my house. What am I going to do, start screaming like a Banshee up and down the grocery isle? Yell at every store clerk I meet? Walk into someone’s house with the greeting, “I’m miserable!”
Of course not. Sure I might have my cane with me and be grimacing a bit. But I’m going to act like a civilized human being. And what people don’t think about is that I only leave the house when I feel well enough to. The few hours that the pain pills actually work. The rare day that my symptoms take a holiday. It happens. But although those times are NOT MY NORM, they are usually the only times other people see me.
But even when I tell people how much I’m hurting, it doesn’t seem to register. They often respond with, “Yeah, I think I overdid it the other day too.” Huh?
Eventually I had the most startling revelation. I think one reason it’s hard for healthy people to understand chronic pain is that they can’t even wrap their heads around the idea of being in pain ALL the time, day after day, week after week, let alone month after month, year after year. The good thing is that everyone knows what pain feels like. The bad thing is that everyone knows what pain feels like. Imagine someone telling you the following:
“For the next ten years, you will experience 29,400* hours of pain. Each year, you can expect 305 days of pain.”
You plan on sticking around for that? Any sane person would decide to call it quits are what? 100 hours? 1000 hours?
*That’s a conservative estimate using the following formula: Just half day of pain: 12 hours X 365 = 4,380 hours per year, then subtracting 60 full days per year (accounting for one full day a week that might be low pain) = 4,380-1,440 = 2,940 x 10 = 29,400.
And yet, every day I beat myself up for not doing more. For the things on my to do list yet to be done. For not being able to “work around/overcome my disability”. Despite enduring the unthinkable, I’m ashamed at having applied for Social Security Disability Benefits. Three hundred days of pain each year and I don’t think I deserve disability benefits?!? What a shocking example of the insidiousness of brain programming – how messages seep in and set up camp, defending their territory even in the face of facts!
No wonder I hate those “hero” stories, not to mention those who proclaim they’ve recovered from fibromyalgia. Yeah, that’s all I need – more shame. More people thinking I should be able to “figure something out”. How well can you think with your hand on a hot burner?!?
Alright, I’ve worked myself into a tizzy, about to start saying, “Bite Me!” so I better reel it in and finish.
I hope this has given you a new way to think about chronic pain. I hope those of you who are healthy take some time to let this sink in. The next time you “overdo it” or pull a muscle, think about that pain never going away. That that’s how you’ll feel for the rest of your life. And for those of you coping with chronic pain, I hope this will help you be more gentle and compassionate with yourselves.