That’s the million-dollar question, isn’t it?
Will it get worse? Will this rheumatoid disease (arthritis) I’ve got, which has so rudely and inexorably taken up constant residence in my life, get worse than it is right now?
It’s always possible, of course. RD is, unfortunately, still baffling and incurable. It’s also progressive, meaning that over time it does tend to worsen, eventually twisting the joints out of true. Because it causes such widespread, systemic inflammation, RD can affect other parts of the body, too, including the heart, lungs, vascular system, and the eyes. These other disease outcomes may eventually mean disability, too. Some may even cause death.
Right. So, I can hear you whispering, fearfully, “When? How long do I have?”
Here’s the Truth
I want to be up front about the seriousness of rheumatoid disease, so I won’t say “relax.” But I will tell you to take a deep breath and read on. The problems RD may cause happen quickly in some people and slowly in others. So far, there’s no predicting it.
In my own case, it’s been 30 years and counting since I first learned what was making my various joints hurt so bad. It disables me frequently, but not constantly or permanently. It all depends on my daily pain levels. So far, I’ve been lucky. The disease hasn’t destroyed my joints. Even so, when a bad flare hits, I’m lucky to get out of bed without weeping—or at all. But when it’s mild or moderate, I can get up and get going, usually with plenty of heartfelt, under-my-breath cursing as fuel. As far as I know, RD hasn’t affected anything else but my soft tissues, like the bursae in both hips, my right elbow, my Achilles tendons, and the connective tissue in my feet. Did I mention my dry eyes? Joy.
Contrast my situation with that of a dear friend of mine. In just over half a decade RD has cost her a hip, a knee, and a shoulder, each of them now replaced with titanium. Soon, she’s having the other shoulder replaced, too. As if that’s not enough, she’s had several other surgeries to shore up various disintegrating joints, as well, and she copes with constant pain, fatigue, and malaise. Yet before her recent retirement, she managed a high-powered career complete with 60-hour-plus work weeks. This woman was a dynamo! And today, she travels the world, cooks with joy, writes, laughs with delight and abandon, advocates publicly and passionately for others who have RD, and is one of the most loving, generous, and light-filled people I’ve ever had the privilege of knowing.
Another old friend has had RD since childhood, way back before doctors really knew what to do for it. The treatments she underwent as a girl in the 1960s and 70s left her even more disabled than the disease, left alone, might have. But today she’s an amazing woman who’s earned two degrees, written three books about various aspects of rheumatoid arthritis, and she writes an award-winning blog, and has several other projects in the works. She’s a gentle but tenacious advocate for people with RD and disabilities, uses the most modern computer technology as a tool for living well despite RD’s daily challenges, and makes gorgeous, creative photographs—with an actual camera!—in her free time. Whenever I start to feel overwhelmed, I think of her, pull myself back together, and get on with things.
Don’t Worry … but do Treat This Disease
RD hasn’t got a timeline, so there’s not much point in worrying too much about it. Yours may be mild, or not. That doesn’t mean that you shouldn’t treat it, however. Medical science has moved forward by leaps and bounds regarding treatments for this disease over the last 15 years or so, and while none of them is a cure (yet), many hold the distinct possibility of slowing the disease way down and staving off joint destruction and tissue damage. Some people even go into remission.
About that: Remission does exist. It can happen. It happened to me—and lasted for six amazing years. It was an incredible break and one, with luck, that I look forward to enjoying again one day.
In addition, there are non-medicinal things you can do on your own that can help you cope better with RD. You can choose to eat a healthy, balanced diet. You can do some moderate exercise: shoot for half and hour a day, five days a week, both stretching and weight-bearing type exercises. Walking is great for RD. These interventions can help you achieve and maintain a healthy weight, which will relieve stress on your joints and, maybe, slow any destruction down.
You can pay attention to your sleep hygiene, too. (Google it!) If you smoke, you can stop. And you can learn ways to temporarily soothe the pain and other symptoms of the disease without opioids. Use ice/heat packs, a TENS unit, a paraffin bath, or try distracting your mind from the pain/fatigue/malaise with a good movie, game, or book. Learn CBT, or to meditate. Most important? Never give up hope. Those busy little scientists and researchers really are out there looking for a cure.
The Other Part
Now, as to the other side of “Will it get worse?” This is the side that has to do with fear—the immediate, right-now-this-instant fear of worsening pain and disability. Every time one of my joints twinge, that fear rises in my mind, just like Putin over the far Alaskan horizon. It sets off an unwanted inner conversation. “Ow! That hurts!” Then: “Uh-oh. Will there be more? Will it get worse? Will it get really, really bad? What will I do? How can I cope with that today? How will I get what I need to do done? Oh no!”
Psychologists call this fearful inner conversation catastrophizing. It’s a word I hate with all my heart even though I know it’s pretty much right on, because it’s often used along with words that casually, cruelly minimize my very real, very reasonable fear of more, and worse, pain. The implication? I’m weak. My pain is all in my head.
Well, I’ve some news for the psychologists. Those of us with RD don’t fear pain because it’s imaginary. We fear it because we’ve experienced it in all its right-here, right-now badness. Who wouldn’t be scared of it happening again?
But most often that sudden twinge or mild-to-moderate flare doesn’t blow up into something worse. Usually, the painful twinge is momentary and fleeting. Usually, the mild or moderate flare—the kind I have the most often and have learned to live with day-to-day—simply fades away after a few hours or days. Yes, then it returns. But still …
Tricks of the Trade
There are tricks you can learn to help you cope with this very real “will it get worse” fear. I tell myself to wait and see, but not to worry. Worrying doesn’t help. In fact, worrying may cause more problems by increasing your stress levels. Studies have shown that emotional stress can make RD worse or even cause flares. The mental is the physical, and vice versa. So, I take a deep breath, tell myself to chill, and get on with whatever I’m doing.
You can also learn to recognize that destructive inner conversation before it gets far enough to do you any harm. Once you realize you’re stuck in that scary, roller-coaster loop of negativity, you can take a big mental step backward. “Whoa,” you can tell yourself. “That’s enough. This twinge probably doesn’t mean anything. It won’t get worse, or really, really bad. And if it does, well, you’ll deal with it just like you did the last time. The world won’t end because of it. You’ll do what you need to do, and you’ll be gentle with yourself. You’ll go out of your way to smile, to laugh, to find distractions from it. Remember that new book you just bought! If this twinge turns into a bad flare, you’ll have time to read it!”
I know. I’m an incurable optimist. But I really can’t think of a better way to live with this aggravating, frustrating, incurable disease. Hope keeps me going.