The weight of rheumatoid arthritis is much greater and more grave than simply dealing with the disease itself week-in and week-out…
More than enduring the monthly blood test needle pokes, joint prods and doctors’ visits.
More than the weekly, sometimes daily, mounds of medications.
More than the recurring shots and “clicks” from biologic injections.
More than giggling over the fact that I have a “gag rag” so I don’t yell during one of said injections. [yes, really.] 🙂
More than being on a first-name basis with the pharmacist.
More than having a stock pile of cold packs in the freezer for flares.
More than eyeballing – widely – the encyclopedia of side effects that flutters out of a prescription refill.
More than” hmpppfffing!” over not being able to wear your favorite pair of heels to an event because the RA pain is so intense in your feet.
More than collapsing from methotrexate’s stranglehold.
More than salty tears from being unable to ice your child’s birthday cake.
More than the sheer frustration from an uncooperative zipper.
More than the disappointment from the inability to attend social events at the last minute.
More than wondering if the coughing guy next to you is contagious.
Living and dealing with RA is so much more than that…
One of the most painful aspects is the constant shroud of societal misunderstanding of rheumatoid arthritis.
“Oh, sure. I’ve got RA in my knee. It just means you’re getting old.”
[Okay, not literally. We can’t go around smacking people. But if you’re like me, it’s overwhelmingly tempting to BOP them on the head.]
[Hard. With a broomstick or something.]
In sharing and swapping stories with others affected with RA, I believe that one of the most painful aspects of this disease is the societal misunderstanding, inaccurate characterizations and misnomers about rheumatoid arthritis.
On a human level, we all experience pain. We all experience pain differently. And we all deal with pain differently.
Some noble – and perhaps misguided – friends and/or family members, may try to relate your pain to theirs – to feel commonality, or to try to convey that they understand what you’re going through. This can occur innocently enough, or can be grossly and intentionally insulting. It simply depends on who you’re dealing with .. And their character (or lack thereof).
A clear difference on pain scales – in my humble opinion – is chronic versus non-chronic pain.
Those with acute, non-chronic pain – a pulled muscle, for example – experience pain, no doubt. That pain heals, albeit slower than most would like, but it does heal. Think of this as “one-dimensional” pain .. It may be an over-simplification in some cases, but it adds perspective on how RA compares.
Those with chronic pain that results from chronic illness (or other chronic conditions) experience pain on a much more complex scale. It’s not simply the trauma of the pain itself, but it’s every other facet of the pain and dealing with that pain that makes it multi-dimensional. It’s dealing with pain that can’t be healed, prevented or cured (at least not yet). It’s dealing with a cruel ghost that comes and goes as it pleases, without rhyme or reason. It’s feeling fine one moment and spiraling into mind-numbing pain thirty minutes later. It’s dealing with a name that’s a misnomer in itself .. Let’s be honest, the simple fact that our disease is termed “rheumatoid arthritis” flings open the doors for knuckleheads, misinterpretations and misunderstandings. It’s dealing with pokes, prods and gag rags. It’s living in fear of germs. It’s coping when your joints feel as if they’re going to burst from your body or simply fuse altogether (as they sometimes do).
This illustration about the complexity of our pain and our disease doesn’t put us RAers at the front of the line in the argument that “our pain is worse than your non-chronic pain.”
This is not a contest.
This is a cry to be understood.
We even hug differently .. Where I’ve always been a “bear-hugger,” I know that some of my Rheum Warriors cringe at the thought of being touched – much less hugged – because their pain is so intense. Their skin and nerves scream from the simple brush of the hand. I’ve had to dial down my gregarious outward movements – well, no, not really. I’m still crazy, enthusiastic and gregarious, but I don’t tackle them with a bear hug now. I’ve learned, and I’ve adapted.
Just as I hope that society will adapt as well. But we have to teach them how to treat us .. Educate them .. Help them understand.
But here’s something I don’t want from society: sympathy.
Leave the pitiful eyes and the “poor you’s” at the freaking door, or I will knock both right out of you.
[Not even kidding.]
Empathy .. Well, empathy is different. Empathy is understanding, yet empowering. It doesn’t discount the pain and it certainly doesn’t discount the ability or potential of the person.
If we can teach about the complexity of our disease and inspire empathy, we can help ebb the tide of misunderstanding. Sure, it’s not a cure-all or the answer to misnomer woes, but it’s something.
And what if we took it one step further…
What if we made the choice to be chronically inspiring – in our own lives and in the lives of others – each and every day .. What could we accomplish?
If we worked – every day – to overcome our chronic pain with chronic inspiration, where would we be?
If we took just one moment – every day – to be truly grateful for all the great in our lives, where could we go?
If we gave just one more smile – every day – to show our gratitude toward our loved ones, how would it make them feel?
I think we can do great things .. You and I.
We must start somewhere.
Let’s do this.
From chronically-pained to chronically-gained.
Your Warrior-in-Arms with RA,