The Best Time to Have Arthritis, Or The Optimist’s Dilemma

Do you have any questions for the doctor?” I asked. I was making my lists—medications and questions—being a good patient.

“Just Is it ever going to get better?” Mark said.

The tenderness in his voice made my eyes brim. Yes, it all comes down to that question, doesn’t it?

The next day, I offered it up to D, the rheumatologist’s PA, apologetically: “I know what you’re going to say. But my husband needs to hear it from you. He wants to know if I’m going to get better.”

“Yes,” D said.

Yes?

I’d expected a solid I-don’t-know because the only thing certain about my experience of autoimmune arthritis has been its uncertainty. We might be able to get you a remission. This drug is promising. We expect to slow your joint damage. We’re unsure exactly what kind of arthritis you have, we just know it’s autoimmune. If this doesn’t work, we’ll try something else. Might-promising-expect-unsure-if. A bouquet of guesses ribboned with equivocation. My daily experience of this disease has been just as muddling. Day to day, the symptoms vary. I can’t tell you on a Monday if I’ll be up for a Wednesday night outing.

Add to this, the confusion of scientific studies one can read on the internet. Estimates for natural (untreated) remission rates in undifferentiated arthritis range between13% and 53%. If I fall in that 47 to 87% who don’t get a natural remission, and I don’t take the drugs, I’m playing chicken with the power of the inflammatory process to create not only joint damage, but to wreak havoc with my internal organs and blood vessels. Another article referenced in RAWarrior’s blog suggests you might as well flip a coin when deciding which drug to take. Humira and Enbrel—the latest drugs I'm considering—both reduce (not eliminate) joint symptoms in about 50 to 60% of patients.

D continued, “You won’t always be like this. You’re not in a flare. What you’re calling the ‘mac truck’—that was a flare. But you’re not controlled either. It can take 2 years to find the right combination of drugs to control your disease. But you will feel better than you do now”

There is some truth to the annoying statement: “This is the best time to have autoimmune arthritis.” There are many more drugs. Joint damage can often be stalled or slowed, buying years or decades of active life. But I’d suggest that no time is a good time, thank you very much. The journeys of others with autoimmune arthritis—those I’ve known in person or via the internet—argue against D’s optimism. Most people don’t get a remission without the use of serious drugs with serious, sometimes permanent, side effects. Drugs stop working, requiring changes in medication. Flares come out of the blue and leave them bedridden for days or even weeks. Joints degrade, and new joints become affected. My “arthritis friends” tell me that even in a best case scenario I will never be the same.

All of this has me wondering about the role of optimism in autoimmune arthritis. Even when things are going well, I don’t tend to be overly sunny. But I still want to be an optimist. When the pain gets bad, or the fatigue overwhelms, or when I’m just tired of exerting so much energy to do things that used to be effortless, I want to stay smiling, energetic, and positive. It's just so easy to get discouraged and angry. Hell, there are days when I’d happily take “paragon of quiet strength.”

Even if I could flip the sunshine switch inside myself, I wonder if optimism the best long term approach to this disease. In his book Good to Great: Why Some Companies Make the Leap and Others Don’t, Jim Collins interviewed Admiral Jim Stockdale who spent eight years as a prisoner of war in Vietnam. Stockdale said it was the optimists who didn’t make it out alive. He told Collins: “they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.”

So I’m wondering how I might balance somewhere between blind optimism and despair—some place where I don’t ignore the reality of this disease but neither do I assume the worst. I’m wondering if this is what hope is.

Stockdale said, “You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.”

I consider what prevailing looked like for Stockdale. When Collins interviewed him, Stockdale still limped on a stiff leg that had never completely healed from the 20+ sessions of torture he’d endured. Yet Stockdale told Collins, “I never lost faith in the end of the story. I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which, in retrospect, I would not trade.”

I’m beginning to confront the brutal facts. Lately, there’s no such thing as a zero-pain day. Fatigue limits my “good” time to about 5 hours a day. I spend about 5 nights a week dealing with pain-induced insomnia in spite Vicodin and Neurontin, then sleeping away part of the morning. In the last week, I’ve finally accepted that the Type-A life I’ve lead to date is unsustainable. I will have to get help with my house and yard, limit my work at Holy Trinity to 5 hours a day, and drastically restrict my activities in the evenings when my pain and fatigue intensify.

It’s a work in progress. When I think of my "end of the story," of what prevailing might look like for me, I draw a blank. Chances are high that it will not look like a complete or permanent remission. The only thing I know for sure is that I will be changed by this illness, as Stockdale was by his imprisonment. I’m just beginning to see glimmers of the way this experience is transforming me—defining me, to use Stockdale’s words.

I guess this is where faith comes in. No pretty platitudes about God’s will, thank you. God doesn’t will suffering upon any of us. He does endure it with us in solidarity. In my better moments, I trust this illness to make me into more of God’s dream for me, something I definitely would not trade.