The pain you don't see
Credit: EgudinKa for iStock via Thinkstock
No one likes to be taken advantage of. And unfortunately in this world, there are a lot of people who are out to get something from you. Credit card scams abound and people have by and large become far less trusting as a result.
An unfortunate side effect of this though, is that we've stopped trusting people when they say they're hurting. "But you don't look sick" is arguably the most heard comment from people with invisible illnesses and chronic pain.
It's also one of the most destructive and damaging comments you could say to them. (us). It's the equivalent of telling a young boy who loves wrestling that he doesn't look very strong. But if you did, (which is incredibly rude), he would probably sputter a little and pull out tapes of old wrestling matches. "But I AM strong, SEE?"
Unfortunately, there's no cameraman taping my illness, providing me with video evidence to persuade the naysayers. "but I AM sick, SEE?" "on January 14th, 2014, as you can see, my hands were so swollen I couldn't tie my shoes and that's when I started wearing slip ons. And in October of 2015, as you see here, my musculoskeletal pain was so severe that nothing in my closet was comfortable to wear to night class? (I hadn't yet embraced leggings) so clearly, I AM sick, see??" But alas. Not an option.
The deeper problem with the naysayers is that after so many years of unbelief, many chronically ill people stop speaking up at all. Unfortunately, chronic illnesses appear to be blossoming, which would appear to be good news for awareness and advocacy. But we don't see multiple public service announcements about chronic pain the way we did about autism in the early 2000's, or food scarcity or any of a number of other things. Instead, the people who live with this pain may have no idea how to reach out, and the people who love them have no idea how to help.
It takes a long time to build up enough trust to tell someone you have chronic pain. And even if you tell them, are you honest about the frequency and intensity of your pain? Probably not, because maybe doctors didn't believe you, or told you it was anxiety and depression and so you tell people close to you "I have chronic pain" and then leave it at that.
"Pain" though, is open for interpretation. Is it stabbing, throbbing, piercing? occasional? Constant?
And the answer of course, is "yes."
I've shared about the spoon theory before so I'll spare you in this post, but it's a wonderful tool for self-advocacy. I find that often something 'clicks' after hearing the spoon theory, and loved ones seem to understand a little more, particularly about fatigue.
In a world where mental health awareness is surging to the front of society (all in all, a good thing), chronic pain is somehow less believed than depression or sadness. This is especially confusing when you remember that for most people with pain, these can be cyclical, simply because being constantly exhausted and in pain tends to take a toll on your mind as well.
All I seemed capable of in high school was to say I couldn't do this activity or that, which in a typical active youth group, looks a little weird. But other than the mostly perceived glances and the questions of why I wasn't participating as actively, it wasn't a big deal to other people.
In college, it began to pose more of a problem in my relation to people, mostly because I would suffer in relative silence for so long, and then it all boiled over at a certain point, usually when another person was complaining about something I felt was trivial. The validity of that complaint wasn't important, what was important is I felt even the friends closest to me didn't get it.
Then I became close friends with a very sweet person who shared a lot of my invisible problems, and I'll forever be grateful for her understanding and friendship. Not that we formed our own support group where we sit around and complain about our pain all the time, but in all the little ways that matter, we're aware of each other's potential triggers and problems. It will probably never be suggested that we run a 5k or even go see a movie in the theater, which doesn't have to be said and is just understood.
It's much, much harder to explain these things to someone who doesn't live with that pain. But that doesn't mean we shouldn't try.
If you don't have chronic pain, you probably know someone who does. Check on them this week, and find ways to let them know you think about them. Most people like notes, that's a great place to start. Whatever you do, try to start being a little more aware of how people perceive your comments. You may not even know how you come across, which is understandable, but try to steer clear of the phrase "You don't look sick", because remember the young wrestler in our story? He may not look strong but he is.
An unfortunate side effect of this though, is that we've stopped trusting people when they say they're hurting. "But you don't look sick" is arguably the most heard comment from people with invisible illnesses and chronic pain.
It's also one of the most destructive and damaging comments you could say to them. (us). It's the equivalent of telling a young boy who loves wrestling that he doesn't look very strong. But if you did, (which is incredibly rude), he would probably sputter a little and pull out tapes of old wrestling matches. "But I AM strong, SEE?"
Unfortunately, there's no cameraman taping my illness, providing me with video evidence to persuade the naysayers. "but I AM sick, SEE?" "on January 14th, 2014, as you can see, my hands were so swollen I couldn't tie my shoes and that's when I started wearing slip ons. And in October of 2015, as you see here, my musculoskeletal pain was so severe that nothing in my closet was comfortable to wear to night class? (I hadn't yet embraced leggings) so clearly, I AM sick, see??" But alas. Not an option.
The deeper problem with the naysayers is that after so many years of unbelief, many chronically ill people stop speaking up at all. Unfortunately, chronic illnesses appear to be blossoming, which would appear to be good news for awareness and advocacy. But we don't see multiple public service announcements about chronic pain the way we did about autism in the early 2000's, or food scarcity or any of a number of other things. Instead, the people who live with this pain may have no idea how to reach out, and the people who love them have no idea how to help.
It takes a long time to build up enough trust to tell someone you have chronic pain. And even if you tell them, are you honest about the frequency and intensity of your pain? Probably not, because maybe doctors didn't believe you, or told you it was anxiety and depression and so you tell people close to you "I have chronic pain" and then leave it at that.
"Pain" though, is open for interpretation. Is it stabbing, throbbing, piercing? occasional? Constant?
And the answer of course, is "yes."
I've shared about the spoon theory before so I'll spare you in this post, but it's a wonderful tool for self-advocacy. I find that often something 'clicks' after hearing the spoon theory, and loved ones seem to understand a little more, particularly about fatigue.
In a world where mental health awareness is surging to the front of society (all in all, a good thing), chronic pain is somehow less believed than depression or sadness. This is especially confusing when you remember that for most people with pain, these can be cyclical, simply because being constantly exhausted and in pain tends to take a toll on your mind as well.
All I seemed capable of in high school was to say I couldn't do this activity or that, which in a typical active youth group, looks a little weird. But other than the mostly perceived glances and the questions of why I wasn't participating as actively, it wasn't a big deal to other people.
In college, it began to pose more of a problem in my relation to people, mostly because I would suffer in relative silence for so long, and then it all boiled over at a certain point, usually when another person was complaining about something I felt was trivial. The validity of that complaint wasn't important, what was important is I felt even the friends closest to me didn't get it.
Then I became close friends with a very sweet person who shared a lot of my invisible problems, and I'll forever be grateful for her understanding and friendship. Not that we formed our own support group where we sit around and complain about our pain all the time, but in all the little ways that matter, we're aware of each other's potential triggers and problems. It will probably never be suggested that we run a 5k or even go see a movie in the theater, which doesn't have to be said and is just understood.
It's much, much harder to explain these things to someone who doesn't live with that pain. But that doesn't mean we shouldn't try.
If you don't have chronic pain, you probably know someone who does. Check on them this week, and find ways to let them know you think about them. Most people like notes, that's a great place to start. Whatever you do, try to start being a little more aware of how people perceive your comments. You may not even know how you come across, which is understandable, but try to steer clear of the phrase "You don't look sick", because remember the young wrestler in our story? He may not look strong but he is.
We just don't have the benefit of past footage to prove to you how sick (and strong) we are.
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