Accepting the Unacceptable
“Acceptance” has become an almost dirty word, but it shouldn’t be. Some people have told me that if I “accept” my rheumatoid disease, I’m giving in to it. I’m giving up, not fighting, not trying to get better. These people don’t have much patience for me. I just smile, shrug my shoulders, and hope they never have to live with a disease like this one.
If they’d listen, this is what I’d tell them: We totally accept a million negative things, almost without thinking, every day of our lives. We accept traffic lights, crowded grocery stores after work, monthly bills, and that pile of laundry that magically starts reproducing itself the moment you fold and put away the last towel from the last load.
We accept most of these things because we can’t change them. Other things, like the laundry, we accept because we realize it’s just part of life, and dealing with it is better (and less smelly/dirty/wrinkly) than leaving the pile to grow to monster size.
We all accept–and even expect–that we’ll experience minor, temporary changes in our health in our daily lives. Everyone gets the occasional cold or flu, headache, or minor injury. We may gripe about it, but we accept that it can happen in spite of our best efforts to avoid it–and not only to us. The mullygrubs are part of the human condition.
I’m the kind of person who generally accepts the usual bumps in the road and obstacles that pop up in my life with good cheer. If I can’t manage that, then I do it with a sort of wry, benign resignation. I’ve never seen the point of griping and complaining, because with experience, I’ve found that making a scene doesn’t solve the problem. Instead, whether it’s a belly ache, a broken appliance, or a lost job, I just do what I can to fix it and move on. But rheumatoid arthritis (or rheumatoid disease, a term I prefer) with its chronic pain and fatigue, has sometimes been hard to accept. If only my disappointed acquaintances knew!
Acceptance, for me, comes one day at a time. If I allow myself to think of living with pain like this every day for the rest of my life, I’m instantly overwhelmed and demoralized. How in the !#*!! am I supposed to do that? How can I–or anyone–do that? For the rest of my life?!
But … wait. I’ve lived with the frequent (and frequently severe) pain, fatigue, stress, disappointment, frustration, and fear of rheumatoid disease for 22 of the nearly 28 years since I was diagnosed–and I’ve done it with grace and even a bit of savoir faire. How did I do it?
Um … ignorance.
See, in a way, I was lucky when I was diagnosed. I was living and working for the U.S. Army as a civilian in a foreign country. I received my medical care from an Army doctor. He was a very good doctor, but he wasn’t much older than I was (31), and I don’t think he’d actually seen a rheumatoid patient before. He diagnosed me quickly–and I’m so glad he did–but he didn’t tell me much about my new disease, except that he couldn’t cure it, but he could treat it.
He never mentioned that there were other RD symptoms, such as fatigue, low-grade fevers, a flu-like malaise, and brain-fog (I don’t think that term for it even existed way back in 1987), and I didn’t know to ask. He didn’t tell me that RD is a systemic disease, and that it can attack soft tissues like ligaments and tendons, and–scarier–the linings of the heart and lungs, the eyes, and even the vascular system. He never mentioned that the complications/comorbidities of my RD would most likely having me pushing up daisies long before my peers. And while he did tell me that the disease could deform my joints and might someday disable me, he never mentioned that it could happen in as little as two years (it didn’t, thank goodness, but as I said, I’ve been very lucky).
He did tell me that RD is an autoimmune disease, but he didn’t explain what that was, and I didn’t think to ask him. And because the disease was known as rheumatoid arthritis, once I got over the fact that I wasn’t actually too young to have it, I simply accepted it as that: a disease that would make my joints hurt and maybe stop working some faraway, distant time in the vast future.
Ignorance really is bliss.
Now, you may wonder why I think I was lucky. It’s because today, what with the Internet and social media, we’re almost instantly bombarded with details about the disease we discover, usually unexpectedly, that we have. All the frightening, serious stuff I laid out in the last couple of paragraphs hits us all at once, a huge, weighty mound of horror wrapped in fear.
This is not to say that I wish we didn’t have all this information at our fingertips. Believe me, I was searching for answers about my RD the moment I was able to use the Internet. It took a while, though, before there was much available. Once there was, I was insatiable. But I wasn’t a newbie, by then. I’d had the disease for two decades already. I’d just pushed on through life like I could without knowing how truly hard it should be for me. And it was hard, frequently. But I was blissfully free of the overwhelming fear that so many of the people I meet through social media live with every day. There truly is something called TMI: too much information.
I accepted my RD early on because I didn’t know any better. There were a couple of facts I knew for sure: I had it, and it was incurable. There was really nothing else to do but accept it and get on with my life. So that’s what I did–and I never looked back, even when it got very bad, and very hard. I just reminded myself that this particular attack on that particular joint wouldn’t last forever, and I was right.
That’s the advice I’d like to pass along. Acceptance isn’t giving up or even giving in. It’s owning your life–and everything that comes with it–bravely and with a grin. Sure, it’s hard, but think how boring life would be if everything was easy! I’m a stronger–and maybe even better–person because of my rheumatoid disease.
And I can live with that.
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