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.

from the HT e-news this week, by yours truly

Peace I leave with you; my peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled, and do not let them be afraid. John 14:27.

I was a fearful child. All through those days, I carried an internal list of scary things, things that could hurt me—fires, burglars, snakes, spiders, hippies who might kidnap me—and at night my terrors unspooled into a long litany of prayers to a God who was something like a Grandpa with special powers.

A few years later, my fears found their perch as my family’s life unraveled into a tangle of alcohol and estrangement. I don’t remember if I prayed, but I learned to escape to the tree fort I’d inherited from my older brothers. Inside the kitchen, my mother poured out half her soda, filled the can back up with scotch, while I sat at the edge, legs dangling. Counting one – two – three – all the way to ten, and still I couldn’t jump. So I’d close my eyes and pick a color and vow that the instant I saw that color, I would do it.

Red.

I opened my eyes and my gaze caught sun firing the taillight of the horse trailer. I launched myself into space, dropping the ten feet to the ground, and landing in a good six inches of dried, musty manure. Then, I’d climb back up and do it again, and again, and again, each time pinning my fear to a place deep inside.

I’ve since been told that the image of a little girl leaping into a pile of horse shit does not make a particularly poetic metaphor. But looking back I understand what this otherwise anxious child was doing. She was toughening herself up, working her fear like a muscle, transforming it into something known and controlled.

In my teens, and again in my twenties, that illusion of control would shatter like tired bone. What I didn’t know then: any muscle, overdeveloped, can become a hindrance, a constant strain on the balance of the body or the soul.

What that little girl needed—and couldn’t get—was the gentle refrain in our Gospels: do not be afraid. It’s everywhere. We hear it from Jesus, and from the mouths of angels reassuring the lonely, the lost, the bewildered. Do not let your hearts be troubled, and do not let them be afraid.

The human heart is a muscle like any other. Overworked by high blood pressure, the muscle thickens. Enlarged and stiffened, it can’t move blood like it’s supposed to. It no longer fulfills the very purpose for which it was designed.

Not so different from our selves, how our essence changes as we toughen ourselves to abandonment, confusion, tragedy, judgment—all those things that make us afraid. It’s a small step from becoming strong to being hard and brittle. In our efforts to be invulnerable we can impair the very muscles God has given us for the care of one another—empathy, tenderness, compassion. In our attempts at self-protection we fail in our one purpose: to love God and one another.

Jesus offers us a different way, a different peace. This peace is not won by being smart, self-protective, or tough—by a reliance on the self. The peace of Jesus requires a counterintuitive letting go—a leap into the unknown of love. For how many of us truly know the depths of God’s love. Instead of girding ourselves against loss, he asks us to make ourselves vulnerable—to him and to one another. This is how we learn not be afraid.

How will you meet adversity?

I discovered this video on the blog arthritisfriend.com. Aimee, who was born without calf bones, had both legs amputated below the knee as an infant. In this talk, she reimagines adversity and disability and lifts up the power inherent in all of us.

She says, "Implicit in this idea of overcoming adversity is the idea that success or happiness is about emerging on the other side of a challenging experience unscathed or unmarked by the experience, as if my successes in life have come about from an ability to sidestep or circumnavigate the presumed pitfalls of a life with prosthetics or what other people perceive as my disability. But in fact, we are changed, we are marked, of course, by a challenge, whether physically, emotionally or both. And I'm going to suggest that this is a good thing."