RheumaBlog

Same dragon, different day.

As I write about rheuma, there are words and phrases I’ve decided, without really thinking too hard about it, not to use.

One of the words I shy away from is “suffer.” A phrase I dislike is “my RA/rheuma/rheumatoid arthritis.”

It’s probably just a personal quirk. I love playing with words. Done right, words can sing in the reader’s mind, even as they inform and entertain. Done with care, they can paint imagination-pictures of stunning simplicity and beauty. Words create worlds.

I’m also hyper-aware of semantics and rhetoric. And, while it’s an ongoing personal struggle for me, I’m a fascinated student of the power of positive thinking. How I think about myself has a profound effect on how I am.

My hands and wrists ache and twinge this morning. It’s nothing new. As I settled down to write, I acknowledged the pain with a sigh and gave each of them a gentle, encouraging rub and squeeze. A caress. A few minutes later, I started to type the word “suffer”  — and automatically censored myself, using “cope” instead. I don’t “suffer” with rheumatoid arthritis; I “cope” with it. A little further into the post, as I wrote about my personal experience with the disease, I consciously steered myself away from writing “my rheuma” or “my RA.” And then I stopped. Why isn’t it “my” rheuma? Why don’t I “suffer?”

For  me, the word “suffer” evokes heart-wrenching images of starving third-world children or a bed-bound, terribly weak, terminally ill person. Rheumatoid arthritis can be breathtakingly painful and it can absolutely force changes in plans and lifestyles, but to compare my situation with that of a skeletal, balloon-bellied infant or to someone dying, agonized, from cancer seems just a wee bit overwrought. Weak. Even spoiled. And yet the headaches in my hands are real. The rheuma-dragon rarely lets me forget it.

I looked up “suffer” with Dictionary.com. (It never fails to delight me that I can click into an online dictionary rather than pull the thick, heavy, hard-bound version off my bookshelf. I harbor a definite nostalgia for books, but my hands are so very grateful for the alternative.) Here’s what I found:

Suffer: A verb, used without object, to suffer is to 1) undergo or feel pain or distress: The patient is still suffering. 2) sustain injury, disadvantage, or loss: One’s health suffers from overwork. The business suffers from lack of capital. 3) undergo a penalty, as of death: The traitor was made to suffer on the gallows. 4) endure pain, disability, death, etc., patiently or willingly.

As a verb, used with object, to suffer is to 5) undergo, be subjected to, or endure (pain, distress, injury, loss, or anything unpleasant): to suffer the pangs of conscience. 6) undergo or experience (any action, process, or condition): to suffer change. And 7) to tolerate or allow: I do not suffer fools gladly.

 Well. “To undergo or feel pain or distress.” I definitely do that almost every day. I also “endure”  and “tolerate” this disease as patiently as I can manage, if not exactly willingly. After all, having RA isn’t a choice.

 So to use the word “suffer” isn’t really being wimpy. The word doesn’t imply an appeal for sympathy or attention. It simply describes, in the most accurate and concise way, how someone with rheumatoid arthritis feels, physically and mentally. I suffer when my hands throb. I don’t suffer to the same degree as the starving baby and her mother, but the pain and angst I suffer is no less real.

Another definition:

Cope: A verb, used without object: 1) to struggle or deal, especially on fairly even terms or with some degree of success (usually fol. by with): I will try to cope with his rudeness. 2) to face and deal with responsibilities, problems, or difficulties, esp. successfully or in a calm or adequate manner: After his breakdown he couldn’t cope any longer.

A verb, used with object: British Informal. to cope with.

I suffer (feel pain) from rheumatoid arthritis; I cope (wrestle, strive, persevere) with the pain and disability it causes.

It will probably take me some time to shrug off guilt for referring to myself as “suffering.” But I’m going to work on it. There’s no reason to feel guilty about having RA, and certainly no reason to be guilty for using the best word to describe what it does to me.

As for “my rheumatoid arthritis:” For many years now I’ve understood the phrase to imply ownership of the object. It’s my house. My coat. My pencil. My dog. My RA. You get my drift, here. I’ve resisted using it because, hey, I don’t own RA. I didn’t ask for it. I never wanted it. If I’d been asked, I’d have said “No thanks! Keep it!” And even after all these years of suffering with it, I’d gladly trash rheuma in a heartbeat. I’d leave it, walk away from it, never think of it again. I don’t love it and I feel no attachment to it. It’s not mine!

(If you’re imagining a child throwing a screaming tantrum just about now, you’re spot on.)

But to be honest, rheumatoid arthritis is mine. Whether I like it or not, whether I want to admit it or not, RA is part of me. It’s mine, just like my hands and toes are mine. Like my heart is mine. Rheuma is a part of my body and how it works, which is unfortunately just a bit off.  

A bit cracked, like the rest of me.

As I’ve written about my individual, personal experience with the disease, I’ve done some pretty impressive mental contortions trying to avoid sentences that imply RA is mine. I’ll call it the rheumatoid arthritis, or just RA, no modifier, as if it’s a separate entity. I’m wrong, though. It’s not separate. Rheuma can only exist as a part of me and as a part of other people like me who suffer and cope with it. It’s a function of our confused autoimmune systems.

I’m going to quit fighting the semantics of rheumatoid arthritis. I’m facing up to it. I have RA. My RA often attacks my hands and wrists. It sometimes attacks other joints in my body. It frequently makes me extraordinarily tired, and it is sometimes exquisitely painful. I suffer from it, but I cope. And not only that – I battle it and fight it and persevere and push on through it and deal with it and hate it and abhor it.

And I strive for dignity and gentle, defiant grace in the face of my RA. In the end, I’m no different from any other suffering human being, regardless of degree or location or illness or status. Why waste my energy trying to pretend otherwise?

9 thoughts on “The semantics of RA

  1. WarmSocks says:

    Another great post well written.

    I completely understand. Similar situation: I’ve managed to write about “RA” but when, in response to a direct questions, I had to write, “Yes, I have rheumatoid arthritis,” it was pretty hard to do. I still struggle with it.

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  2. Helen says:

    I’ve gone back in posts and deleted words and sentences that I thought made it sound like I was whining; like I was feeling sorry for myself when I had no right to. I still do that. I keep thinking that there are so many people worse off than me, and what right do I have to say I’m in pain when they clearly suffer so much more than I do?

    I do call it “my arthritis”, but I hate the way those words feel in my mouth. Like it makes me somehow weaker.

    Thanks for another beautifully written post.

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  3. tharr says:

    Suffer is a word I don’t use either. Not that I don’t suffer, I just choose not to use the word. It’s odd how we each have certain lines we won’t cross, each ones lines being different. For me, if I admit that I suffer, I’m afraid mentally that I will give in and start feeling worse. I, like Helen, try not to sound like I’m whining too much, but some days I think it just comes out that way no matter how I try to write about it.

    By the way, I like the new layout. We have really cold temps but no snow yet.

    Talk to you later
    Terry

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  4. ValleyWriter says:

    Great post. I think it sums up how many of us feel. I’m in remission right now, so I’m not suffering. And honestly, since I’m in remission, sometimes it almost feels weird to say I have RA. As if I don’t have the right to say it, since I’m not in constant pain anymore. But, then again, I’m taking 2 shots a week and 3 pills a day to stay this way. And I’ve given up running. And I know I can’t over do it, or I’ll set myself up for a flare. So – I guess, yeah – I do still have RA. I’m just “coping” with it well.

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  5. I really beautifully written post. I have felt many times exactly the same way. I have wondered if I call it my RA does that mean that I own it or does it own me? I hate the word suffer as well and I purposefully do not use it. That does not mean that I don’t daily deal with pain but for me it has more to do with how I see RA than anything else.

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  6. Kim H says:

    “Words, words, words, I’m so sick of words. I get words all day through — first from him, now from you….” LOL. That’s Eliza Doolittle! In all seriousness, however, I love word-craft!

    Anyway, thanks for this post.

    Sometimes, I think we are a bit too “politically correct” when it comes to our thoughts and feelings about illness and disability; this approach winds up being to our detriment, I believe, since coping with chronic illness almost requires self-expression. (For example, how is your doctor going to know you are in pain if you can’t tell her?)

    In my blog, I started to refer to RA sufferers as RAers not because I had a problem with the idea of suffering, but because RAers is shorter and easier to type.

    Incidentally, do you mind if I tell you that I find it difficult to concentrate on your beautiful words when there is snow falling across the screen?

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  7. brilliantmindbrokenbody says:

    One of the things we do to ourselves, and other people do to us, is try to force this idea on us that pain and suffering are relativistic.

    They’re not.

    For example, if I break my arm and you sprain your wrist, your wrist doesn’t hurt less because my arm is broken. If you were to wander around a hospital ward seeing people who had suffered more severe accidents, it would not actually make your wrist hurt less.

    It would just make you more likely to value your pain less.

    The thing is, there isn’t a finite amount of pain in the world, nor is there a finite amount of sympathy or understanding.

    In fact, I think there’s a strength in having many of us admit that we are in pain, that we suffer. Why? Because when I suffer, when I hurt, I can look at other people admitting that they do to and not feel like I am alone in my suffering and pain. I can talk frankly with people about the fact that it sucks. I can share sympathy for someone else’s pain.

    I have someone whose pain is more like mine to compare to, so that I don’t look at the starving mother and child as a model of suffering and tell myself that what I feel is not worthy of that word. Denying my pain does not make either my pain or their pain better.

    Sometimes, we need that reassurance that yes, this is pain, this is suffering, and it is right to call it such if we choose to. It is not an act of self-pity, but an act of self compassion.

    ~Kali

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  8. Jules says:

    I both agree and disagree with you on this one. 🙂

    I do feel that this is MY RA. Your RA is YOUR RA as well. Each of our experiences with the “monster” is different and that is what makes it our own. Yes- I own my RA, just as I choose how to do my treatment- which could be as different from yours as night and day or could be the same. Unfortunately(?) we don’t have a cookie cutter disease. It might be easier if we did because then the treatments would be one-size-fits-all and our reactions to the treatments would be the same. It would surely be a lot easier to find solid information as to what to expect if it were. On the other hand, knowing what some of my dear friends go through with their treatments and their pain levels- I will keep mine; thank you very much.

    As for suffering- well, I believe that is entirely a frame of mind. If I were getting no relief, if I were in a constant high level of pain, if I allowed RA to become the main focus of my life and if I basically became my disease- I would be suffering from RA. I choose not to suffer. Yes, I am in pain on a daily basis, but I choose to celebrate when the pain level is lower rather than focus on how “badly” I feel all of the time. Rather than focus on the things that RA has taken away from me- I choose to focus on the blessings it has given me- and yes, it has given me blessings. If I were to allow myself to “suffer” from RA- I would allow it to take over my life to the point that I would be a depressed puddle of blah! I prefer to live with RA. It is a part of my life, but not my whole life. I made adjustments for it, not sacrifices. I will stay positive in the face of this beast!

    What a great post to get me thinking and in a positive frame of mind this morning! Thank you.

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  9. Wren says:

    Thanks, everyone, for responding to this post and sharing your thoughts about “suffering” with RA and whether to “own” the disease or not. I’m glad to know that I’m not the only one who’s struggled with these perceptions. I think I can now say, with a greater degree of comfort, that the rheumatoid arthritis I have is, indeed, mine. As Jules points out, “I do feel that this is MY RA. Your RA is YOUR RA as well. Each of our experiences with the ‘monster’ is different and that is what makes it our own.”

    As for suffering, well, that’s a truly individual perception as well, isn’t it. When I have a severe flare, I can say without a doubt that I suffer. I also cope and often, I cuss. But on days when the pain is quieter and remains mostly in the background, the word “suffer” doesn’t describe what I’m feeling at all. On those days, “enduring” and “tolerating” probably work better (though both are a choice — I could also curl up into a ball and weep). In the end, “suffer” is just a word and perhaps a frame of mind, but I’m not going to avoid it out of shame anymore. Kali makes a rather profound point about this: “Sometimes, we need that reassurance that yes, this is pain, this is suffering, and it is right to call it such if we choose to. It is not an act of self-pity, but an act of self compassion.”

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