If you’re reading this, you’re probably someone who has rheumatoid arthritis and who wants to learn more about it. Maybe you’re also hoping to find other people who have it; you’d like to check how you feel against how they feel. Most of all, you’re hoping to find good, solid advice, not “wear a copper bracelet to relieve rheumatism,” or “Miracle discovery! Take this (insert dubious product here) and you’ll be well! Only $19.99/month!”
Sigh. You’re probably also feeling pretty darned alone.
And no wonder. There are an estimated 307 million people living in the United States today. Out of all of them, 2.1 million of us have rheumatoid arthritis, compared to the 16 million who have osteoarthritis, the age-related, degenerative joint disease. We’re a relatively exclusive group.
Even if you’ve only recently been diagnosed, you’ve probably already heard these responses to the news from friends and family (and even strangers): “You’re too young for that!” or “Oh, I have that, too. I just take Tylenol and it goes away.”
The subtle implication is that you’re somehow mistaken about your diagnosis or that you’re a big baby whiner. After all, a few acetaminophen tabs and you’ll be fine, right? And besides, weren’t you just working in your garden yesterday, carting around bags of soil and shoveling dirt? Didn’t I just see you carrying bags of groceries into the house?
Because RA is a largely invisible disease, and because of its changeable nature, it’s easy for others to perceive those of us who cope with this disease daily as drama queens and hypochondriacs. We can be energetic, strong, flexible and sunny one day, and partially or totally disabled the next. Grouchy, too. We don’t know, from day to day, if the next flare will be horrible and debilitating, or light, an annoyance and hindrance, perhaps, but nothing we can’t live with. Some of us have even had both types of flares on the same day. Even at the same time in different joints.
We generally can’t predict when flares in the disease will hit us, although some of us get a little warning now and then if we hear about a storm coming our way over the next week or so. A few of us have learned that personally, we feel better if we don’t eat wheat, or tomatoes, or meat. Some of us feel better when we drink a ton of water every day, and some of us can almost predict we’ll soon be enduring a flare if we’re very stressed and tired. But it’s not across the board. The flares we expect sometimes don’t happen. The ones we don’t expect do happen. And what helps you keep the disease under control might help me, but then again, maybe it won’t.
Because of this unpredictability, I find it easy to become focused on my rheuma. I’d rather not be, of course. I’d much prefer my mind be focused on more interesting things, like Clive Owen or European travel. I’d rather think about the tasty meal I’m planning to whip up for supper, or about the walk I want to take this afternoon. But rheumatoid arthritis doesn’t always allow me to lose myself in those other, more pleasant distractions.
RA hurts. Sometimes, it disables. Sometimes the disability is permanent. And it’s for life. There is no cure. No matter how hard I work and exercise, no matter how carefully I eat, no matter how compliant I am to my doctor’s instructions, or how religious I am about taking my meds or supplements every single day without fail, I will always have the rheuma dragon in the wings, waiting to leap out and bite deep into my joint-bones. Then he’ll chew. It will be that way until the day I die.
So sure. I focus on my disease. I need to know everything I can about it. I need to know what weapons are available and how to use them to the best of my ability so that I can allow myself to focus on other, more pleasant things, like Clive. Or my husband. Or my children and friends. On my life.
A piece in the most recent American Arthritis Foundation’s e-zine, Arthritis Today, asks in its headline, “Are you obsessed with your health?”
This paragraph (the story’s third) tosses down the gauntlet:
“Which is worse? A person who skips medications and ignores her doctor’s suggestions or a person so concerned with her health that she can’t think about anything else? Neglecting your health is never good, says Daniel Clauw, MD, professor of medicine, division of rheumatology and director of the chronic pain and fatigue research center at the University of Michigan in Ann Arbor. But the other extreme — focusing too much on your health — can create problems, too. ‘It’s not going to make someone with arthritis get worse, but it can prevent them from getting better,’ says Dr. Clauw. ‘People can get so focused on their health symptoms that they’re paralyzed from doing the things they need to do to get better.’”
What? Is Clauw implying that I might be so obsessed with my disease that I forget to treat it? Or that I’m simply worrying too much? Is the implication that I’m spending all my time huddled in a corner with a blanket over my head, moaning “woe is me…”?
Well, perhaps there are people out there who do that, but I think they’re a rarity. Most of us don’t have time for that sort of self-indulgence. We have too many things to do: we have children to raise; we have to work so we can pay the mortgage and keep food on the table; we have marriages to maintain and dogs to walk. We have to live. And we do it in spite of RA.
Clauw’s statement rubs my fur backwards, to be honest. I’d like to give the good doctor rheuma for a week. Let the ol’ dragon show him his whole bag of tricks: the huge pain, the tiny pain, the sudden pain, the pain that draws out and out and out and seems like it will never, never stop. I’d like Dr. Clauw to lay awake and restless for a few nights, trying to find a position comfortable enough that he can get to sleep even as his shoulder aches and throbs, filling his mind with his agony. I’d like to see him flip burgers on his patio barbecue with hands that feel like someone has stomped on them and now have about the same flexibility as dry clay. Let him pop a couple of Tylenol and wait for them to work, like it does for his buddy, only to find that it has no effect on his pain whatsoever – and then have to deal with that disappointment while smiling at his office staff and being pleasant to his patients. Then I’d like him to reread his own pompous, know-it-all statement about people obsessing with their RA.
Just a week. That’s all it would take. Maybe even a day would be enough.
The thing is, managing a chronic, painful, disabling disease like rheumatoid arthritis takes time. It’s not like we can entirely forget it – if we try, rheuma reminds us of its constant presence by tweaking our fingers hard, or stabbing our knees when we try to walk. Sure, there are occasional hours, days, weeks, or even months when we can put it to the back of our minds because it’s not causing us pain or disability right at that moment. Most of us long for these breaks from pain and fatigue, even for a day or two. We long to focus our attention elsewhere.
And that’s precisely why we obsess – if that’s what it’s called. We want so much to enjoy pain-free days (and days where we aren’t looking at that swollen knuckle and wondering what sort of ugliness is happening to the bone under the skin) that we focus a great deal of our energy on learning how to control the disease. RA is baffling. It’s complex. There’s a lot to learn. Because most of us suffer with this disease alone, and the only one who really believes we have it is our doctor (most of the time), we’re often extremely isolated in our pain and disability. We have no one to talk to who knows, who can commiserate and empathize with us.
But the Internet has opened up a world filled with people who suffer the same pain we do. We can interact with them through chat rooms, online communities and social networks. Those of us who have some time on our hands may spend a good deal of time using these resources. We might “surf” the ‘net a lot, looking for answers to our questions about the disease that we simply cannot ignore.
Is that obsessing? Each day that I pop online to post here on RheumaBlog, and read and comment on my fellow RA bloggers’ posts, I learn something new about rheuma I didn’t know before. Or perhaps I’m given an opportunity to comfort someone who’s hurting like hell. I know how they feel. I know how much they need to know that someone out there cares that they hurt and wants them to get better very soon.
I believe that we’re far healthier being active learners and questioners than if we simply minded our doctors like good, ignorant little patients and kept our concerns to ourselves. I’d rather face living with this disease aggressively than be like I used to be – which was cowed and uninformed, living without access to information that might have helped me deal with my disease better. I’d rather be called “obsessed” than not be able exchange information, comfort and laughter with others who also have RA. I remember how alone and isolated I felt. How I was the only young freak on the block who had this miserable disease; how I endured people’s remarks, how I tried not to see that expression on their faces that told me what they were really thinking: that I was a hypocrondriac. That I was trying to get attention. That I was weak and silly and over-reacting to a little owie.
Read “Are you obsessing over your health” yourself. There’s some good information in it, once you get past the subliminal scolding over catastrophizing your RA. Maybe I’m being too touchy. Too prickly. I’d be interested to know what you think.
Two other RA bloggers have referred to this article and obsession over RA in the last few days. They’re WarmSocks of ∞-itis and Kelly at Rheumatoid Arthritis Warrior. I’d like to thank both of them for piquing my interest in the article and its contents, and for their takes on it. Go read what they have to say, too. Join the conversation.
Hell, maybe it’ll keep you from obsessing.
I don’t think it should be labeled as obsessing. There are things I told my doctor that he didn’t even know. Education is the best tool to help learn and cope with any disorder, so I don’t understand how someone can say you’re obsessed with the topic. Doctors are only going to give you the answers they have. Sometimes that’s not enough. Getting information from other RAers regarding tips to help with flares and things you can buy to help around the house are important bits of information you need in order to deal with this daily. Not to mention the ever-changing diagnostic guidelines. Everyone copes with RA differently but I can’t honestly see how someone could bypass the necessity of educating yourself. Also educating others. I can’t tell you how much information I’ve given to my family so they’ll understand better what I’m dealing with. Great post.
I think the Arthritis Today article (on top of other things I’ve been reading/thinking about) provides food for thought, but it isn’t especially well written. It starts off “If you’re focusing too much on your health, you may be worrying yourself sick. Here’s how to tell when you’ve crossed the line – and how to get things back into perspective.” But it doesn’t do that. I’ve been over the article multiple times and still can’t find where the line is.
We all know, and the article acknowledges, that a certain amount of attention to the details of our healthcare is essential. We have to show up for doctor’s appointments, fill our prescriptions, schedule our lives around taking our meds, keep track of whatever information the doctor wants us to keep track of, eat well, exercise… Those are good things, and it’s not obsessive to take care of yourself.
There are people who do oh so much more than that, though. I know someone (not an RAer) who, in the 20 years I’ve known her, has never had a conversation in which she doesn’t complain about how much pain she’s in and how awful her doctor is and nobody understands… On and on. She won’t exercise because she’s in too much pain. Guess what. Other people are in pain, too. I figure that if I’m in pain anyway, I might as well do something constructive. Exercising really does reduce the pain. (sorry – mini rant)
The article says that the line between healthy vigilance and overfocus isn’t really clear, but that we shouldn’t be in patient mode 24/7; there has to be more to life. That’s a good point to remember, but not particularly helpful. If this is one of the main points, then it should be stated prominently.
I wish that the article had been written better. After four and a half pages of rambling, there are finally a few tips: mindful acceptance, find your flow, social network, volunteer, have a health plan, therapy if needed. Not really helpful. Wren, you should talk to the magazine about writing for them. You would do a much better job at finding information and reporting it in a helpful manner.
Agree with you both, Wren and Warm Socks. Your blogs are a form of volunteering. learning and eduction, and a stress reliever. Education is our best defense.