It is a great notion – but is it even possible to do? I’ve tried taking photos of bad flares, and, in that case, pictures are NOT worth a thousand words, because there’s just no way to “show” that kind of pain.
When we try to go about our daily lives – particularly when doing so with a smile on our face – it diminishes our pain (to the public eye) even further.
So, when a condition is (for the most part) “invisible” – how do you “show” people? How do you “explain” it? Even when you try to explain it, you feel as though the other person’s eyes are glazing over in boredom, or that you’re talking to a wall, or, that they’re just hearing “blah blah blah” and still not understanding.
I’ve tried putting it in a poem. I’ve tried writing it in a blog. I’ve tried speaking the words as best I can to convey just how much RA can hurt, how disabling it can be, how it’s MORE than just pain, how it can affect multiple systems of the body, and so on.
But, unless you live it – can you ever really KNOW?
“Arthritis gloves” were introduced a few months ago. They would show testers the “stiffness” and “immobility” aspects of arthritis (and even then, were geared towards showing how it was for folks with osteoarthritis – OA – and not RA.) But, they didn’t show the pain. They didn’t show the “sickness.”
Then again, why would we want to? I always say that I’d never wish this pain upon anyone, but, I wish that just for, oh, I don’t know, 5 or 10 minutes, that people could just “feel” it temporarily, so that I would stop having to try to “explain.”
Actually, though, that’s what I did. I’ve stopped trying to explain or “justify” my pain. It is what it is, and, no, most people won’t ever understand. Most people equate RA to general aches and pains in the joints and that’s it. The more I thought about it, though, they don’t have to understand. They don’t need to get it. It won’t affect my path to wellness. I don’t have to prove myself or my condition to anybody. It’s my journey, not theirs. I know my pain – and many of you know your own pain. There’s really no way to truly “measure” pain, or even to compare it. My arthritis could feel differently to me than yours does to you. It could look and behave differently than yours does. That doesn’t mean that mine is better or worse than yours, just different. Many factors contribute to this – levels of pain tolerance, comorbidities (a.k.a. co-existing conditions), genetics, support, exercise, diet, perception and perspective, environment, etc. And this could even change day-to-day.
So, we can’t really generalize and say that one person is worse off than another, nor can we describe what RA pain feels like, because, in its totality, it is likely slightly different for each person.
One thing will remain the same: it is hard and it hurts.
Another truth? You can get through it and still live a beautiful life — if that’s what you make up your mind to do. That is one generalization that I am willing to speak to.
So, let’s just try to move forward with these goals: realizing the difference between advocating and complaining, and between spreading awareness/educating versus trying to justify or explain away our conditions. Yes, it would be great, lovely, wonderful, and ideal if everyone really understood RA pain. If they truly GOT it, our lives would be just a little bit easier…maybe. But, really, it doesn’t matter if others do understand or they don’t. Let’s just try have them understand the condition as a whole – as best they can – as we move together towards optimal health and an eventual cure.
Other people’s perceptions, misconceptions and thoughts should play no part in your condition and how you handle it, or in your getting healthy, or in your self-worth and value. As hard as that may be, it’s something that we should try to remember as often as we can.
As always, comments welcome! Thank you for reading.