Rheuma semantics

I have rheumatoid arthritis.

I’ve had it for 22 years. Our relationship has never been friendly.

On some blogs about this disease people state “I take X for my arthritis,” or “I couldn’t go to the party because my arthritis flared up.”

There were so many statements like this, on so many blogs, that it started to bother me. “My arthritis is worse in humid weather.” “It’s hard to explain my arthritis to others.”

What bothers me is not what medications the writers are taking for the disease, or what it does to limit their lives, or how it’s worse at one time than another, or even how difficult the disease is to understand and explain. All of those things are part of having rheumatoid arthritis. I can identify and empathize with each one.

What I can’t figure is the “my” part.

Rheumatoid arthritis is a disease of the body’s autoimmune system, which for some reason sets up a continuous attack against its own tissues, treating them as if they were a foreign entities that must be destroyed. Rheumatoid arthritis causes the synovium, a sort of fluid-filled capsule between the joints, to become inflamed, which makes the joints painful – often excruciatingly so. Over time, this constant attack on the joints causes them to distort or freeze up. The disease eventually disables and cripples its victims. Sometimes it does it fast. Other times it can take decades.

Rheumatoid arthritis can attack other organs in the body, too. It can affect the lungs, the heart, the circulatory system and the eyes. It can make the sufferer feel as if they have the flu all the time. It can make them feel worn out, fatigued for no good reason. It affects each individual differently, so it’s very difficult to treat. A drug that works for one person won’t necessarily work for another.

And the worst thing is that rheumatoid arthritis is incurable.

So where do semantics fit in with all this?

Well, I have it, but damn it, rheumatoid arthritis is not “mine.” I don’t own rheuma and I don’t want to. It’s a malevolent stranger, a sneaking dark enemy that’s attacking me. It’s a disease I must fight against and even learn to cope with, but it sure as hell isn’t “mine.”

I believe the words we choose to use in our thinking conversations with ourselves and in our everyday conversations with others have a profound effect on us. If I start talking about the disease I’m afflicted with as “mine,” then I believe that I’ve accepted it. That I’ve learned not only to cope with it but to live with it, even to nurture it. After a while it really is “my” arthritis. Like “my” cat or “my” shoes, “my” house or “my” daughter. It’s as if it’s an old, familiar but not particularly pleasant friend.

So I fight against using those words. Rheuma is not my friend, will never be my friend.

It’s out to stop me from moving. To stop me from cooking, or sweeping the floor, or driving to work. It’s determined to make me sit still and suffer, not daring to move any more that I must. It means to keep me from playing, from sleeping, from making love. Ultimately, it’s out to cripple me and someday, to kill me.

Why in the world would anyone want to accept that? To own it? To nurture it? Rheuma is absolutely not “mine.” I will not claim it.

But I will fight it.

As in any war, I win some battles and lose others. There are times when I have to retreat, wounded, and take the time necessary to recover my strength, my courage and my will to go on.

I’ve been lucky. It retreated – went into remission – for about ten years. Or at least I thought it did, since I was no longer hurting every day. My life went back to normal. I could walk without pain. I could open doors without pain. I could sleep. I went hiking, started gardening, went camping and fishing. I worked. And oh, I was relieved and thankful, but ever mindful of the fact that there was no reason rheuma couldn’t come back anytime and ambush me, just like it did in the beginning.

I was wrong, though. It wasn’t gone. It was still in my body, working slowly and quietly to undermine my foundations. And about four years ago, it began attacking openly again.

Today I fight rheumatoid arthritis every day again, but this time, I have a variety of weapons. I have medications, I eat mindfully, I get plenty of sleep during the lulls between battles, I drink lots of water. I’ve lost nearly 50 pounds and I’m keeping it off; to me, that’s like taking and holding a major strategic city. I’m working on losing another 20 pounds. When I reach that goal, I’ll be at the optimum weight for a woman of my height and build. Why do it? Less stress on my joints. Less stress on my body, period. I’m stronger. It’s like armor.

This blog is about my battle with rheumatoid arthritis. At the moment, I’m writing it for myself, mainly, but if you’ve found me and you’ve read this far, I’ll be delighted if what I learn and write about helps you as well.

We can’t cure rheumatoid arthritis. But we sure as hell don’t have to surrender to it.

5 thoughts on “Rheuma semantics

  1. Attitude is everything, in my opinion. And you’re right, amanda. If I’m fighting, not giving up, and keeping a positive, upbeat attitude, then I’m able to hang on to at least a little control. I might not win the battle, but I won’t lose, either. Thanks for dropping by!


  2. Hi Wren! I love your perspective on the RA “experience” in this post. I found myself laughing while reading your feisty words. 🙂 I wrote a similar article called, “Does Rheumatoid Arthritis Define Who I am?” you might enjoy. I doubt it will induce laughter, but perhaps you’ll find a commonality in our views of RA.


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