RheumaBlog

Same dragon, different day.

The writer of a blog about RA recently wrote a post about her rheumatoid arthritis and how she dislikes the word “accept,” preferring instead the word “adapt.”

(Before I go on, I should note that a friendly quibble over the meaning of words used in certain contexts, or semantics, is the favorite pastime of most writers and almost all editors. We just can’t help ourselves. It’s too much fun.)

That said, I absolutely agree with the blogger that having to accept that I have a mean, painful and possibly disabling autoimmune disease is frustrating and distasteful. And I agree that the word “accept” implies my willingness to receive, approve of or take on the disease without protest. It implies that I regard my RA as proper and normal, that I respond favorably to it, agree to undertake it and assume an obligation for it.

Um, except I don’t.

The word “accept” may imply those things, but lemme tell you, I’m unwilling and not the least bit receptive to my RA. I disapprove of it and frequently protest while I endure it. I don’t think it’s anything close to proper or normal, I have a very unfavorable opinion of it and I never agreed to it or obligated myself to having it in any way.

But here’s the thing: RA is incurable. It won’t go away—at least, not forever. It might take a very rare, lengthy holiday, and it might step out for a day or two at a time, but as long as it remains incurable, I can expect it to return. And because of that, I feel it will do me little good to deny it.

And so, I decided long ago to accept it. For me, that means that I acknowledge RA’s presence in my body. I acknowledge that it can and does do damage to my joints and might also damage other parts of me: my soft tissues, veins, heart and lungs, even my eyes. I acknowledge that it causes me sometimes awful pain, stiffness, senseless fatigue and sometimes, real disability, though I’ve been lucky enough not to be permanently disabled. So far. I accept all this about my RA because by accepting it, I also allow myself to learn all I can and fight this disease with every weapon—be it medicine, natural remedies, exercise, diet, meditation or simply a cocky attitude—at my disposal.

Then there’s that other word: “adapt.” I work daily to adapt to my RA. It changes constantly, so I sort of have to. Adapting means I don’t have to give up or modify everything I do, only some things—and not all the time. Adapting means I try my best to roll with the punches. I jig when RA jags. When it’s flaring, giving me a lot of pain, forcing me to move slowly and carefully, I alter my expectations for what I hope to accomplish for the length of the flare. When my RA is quiet I approach activities more freely, but still with a certain amount of caution, because even when I’m feeling well, it’s easy to overdo it and end up causing myself more pain and exhaustion than I want to go through.

Adapting also means allowing myself flexibility in my emotions. There are some days when even the ugliest flare won’t get me down. I’m tough. I know how to persevere, to keep my chin up. But there are other days when dealing with the pain, disability and the without-any-warning nature of a sudden flare is just beyond me. On those days I’m quiet. Sometimes I’m blue. I don’t berate myself or feel cowardly, though. I allow myself a little pity-party. Accepting and adapting to having RA requires a lot of strength and courage, so I give myself a break when I’m running a little low on both of them. Sometimes I just get tired. Still, I know—because I’ve done it so many times before—that I’ll be okay. Things will look up. It just takes time.

No one wants to have this disease. None of us who have it did anything to deserve it. Do I get frustrated that medical science hasn’t found a really good, non-addictive painkiller or even better, a cure for this rotten disease? Oh, yeah. But then I remind myself how far we’ve come and how much we’ve learned about rheumatoid arthritis in the 24 years since I was diagnosed. The drugs available today are much better than they used to be. I have to believe that they’ll be a lot better 24 years from now, too. In fact… by then, perhaps medical science will have cured RA. Maybe it will finally be a scourge of the past, gone for good.

You know what? I’ll accept that.

7 thoughts on “The semantics of RA

  1. Polly says:

    Adapting, accepting and the change in what I perceive as ‘normal’ have been on my mind a lot lately, so I appreciate your thoughts and clarification on this … maybe I’ll even get round to posting about it myself at some point. The word I refuse to accept, or adapt to (?), is of course, and I think I have posted about this in the past, ’embrace’. YUK!! P xx

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  2. Jules says:

    I very much agree with you in regards to accepting and adapting. I also agree that at many times it’s just semantics. Where I disagree with Thrive (and I haven’t read her post, I am basing my thoughts on yours) is that I very much feel that we must accept that we have an incurable, painful and basically sucky illness before we can adapt.

    I look no further than the message boards to illustrate. How many people have you seen that seem to ignore or basically deny the fact that at this time THIS. IS. INCURABLE. They focus on the miserable parts of living with a chronic illness and in doing so, refuse to….I don’t want to say celebrate because that’s unrealistic, maybe enjoy is a better word, the good days that they do have. I really feel that you have to acknowledge that it’s not going away any time soon before you can begin to adapt. It’s as if they are paralyzed by the refusal to accept the reality that this is a life long illness with good days as well as bad. They may not be as “good” as life pre-illness, but they can be pretty darned good when we are very aware of the alternative. That’s my soapbox for the day. Be well my friend. I miss having the time to “visit” with you.

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  3. The problem I find with ra is there is no normal. Things change always and forever…unless, perhaps one day we find a cure.

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  4. Nessie says:

    My brain is a bit broken after a long week writing stories outside my forte (hi, sports copy), so I’ll respond in the best way I can right now: Amen, girl.

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  5. Lene says:

    I love these types of posts – nothing better than delving into word geekdom. 😉

    The way I’ve come to see it is that I accept the fact that I have RA, which is slightly different than accepting RA. Well, OK. So sometimes I am more accepting than others, but… Not accepting means (to me) fighting it and the more I fight, the harder life gets and the unhappier I become. So I accept, adapt (most days) and move on with living.

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  6. Helen says:

    I think this is where I probably differ from people who developed RA later in life, which I think is much harder than getting in when you’re too little to know what’s going on. For me, RA just feels like part of who I am. If I’d gotten it later, I think I’d be a lot angrier and have a much harder time accepting it. There are definitely days when I’m angry and depressed, but even at those times RA doesn’t feel foreign. It just feels like me.

    I agree with you, and I think acceptance is an important part of our response to the disease. Acceptance, to me, means acknowledging the realities of RA, and we can’t treat it effectively if we don’t do that.

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  7. Alyssa H. says:

    For me, “adapt” has a sour taste right now. I recently told a person in a mentorship role that I was having surgeries due to permanent joint damage in my fingers, and she said, “That’s too bad. But you’ll adapt.” That was a new one. I was sort of astonished. The other day she came up and asked if I was adapting, and I said, “Sure, but there’s physical therapy and another surgery maybe coming up.” She replied that after that surgery it’d be all over, right? “I mean… until the next thing happens,” was my response.

    Sometimes I think people assume “adapting” is just… easy. Natural. And I think with RA (as with other long-term illnesses), it really isn’t. On one hand, you have to adapt to keep moving. But on the other, some days it would be so nice to just stomp my foot, crawl back into bed and say, “No thanks, not today.”

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