Saturday, May 8, 2010

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.


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.


  1. I've been battling RA for 10 years now, in and out of remission. I've had the days of despair when I wonder if I will ever get my life back to days where just for a moment, I forget I have RA. I'm not sure what the cocktail is for dealing with it. I guess I just try to embrace the good days and surround myself with hope on the bad.

  2. This comment has been removed by the author.

  3. Dear Pig Woman,

    Been there, done that, got the tee-shirt. I don't think God is so transactional that he demands complete faith in order to heal. If that were true, God would not be omnipotent. The trouble with the "believe and be healed" approach is that when healing doesn't occur, the conclusion must be that one didn't have enough faith. That way of thinking devastated me in my youth--literally broke me and sent me on a twenty year walk about from God. Not something I care to endure again. I think the victory will be in who I become through this, not in a particular outcome that I deem desireable from my limited human perspective.

    Do I believe God can heal me? You bet. Do I believe he will? Now that's up to him, isn't it? "My ways are not your ways, my thoughts are not your thoughts." With either outcome, healing or not, faithfulness (being faith-full)for me looks like trusting in "the end of the story" regardless of how it turns out.

    And then, of course, there is the question of what true healing looks like. Most of Jesus' healing stories place priority on forgiveness of sins and restoration of the person to the community (untouchables made touchable). (We can get into the whole idea back then that sinfulness created illness, but that's perhaps better tackled in another post.) What's more interesting to me is the idea that the healing of the wounded spirit might be more important than the healing of the body. So that's what I'm focusing on right now. If the healing of my body comes too--fantastic. If not, hope will still be fulfilled if I give my assent to be transformed by this experience.

  4. Dear Seeking,

    Thanks for your comment. With this diagnosis so new, it helps to hear from others who are finding a path through. It helps to know that despair comes, but also goes.

    Peace to you!

  5. This comment has been removed by the author.

  6. Pig Woman, no worries. Each of us lives out our faith in different ways.

  7. While my health problems are based on a collagen disorder rather than an immunological disorder, I live with pretty bad chronic pain, too.

    For me, success will be being able to make positive changes in the world that I would not have made, if it were not for my disability. When I came to law school, I wanted to be a district attorney because I believed that prosecuting criminals and keeping the community safe was the best use of my abilities. Over the last three years, I have come to realize that I can be a better disability rights advocate than I could have ever been a district attorney, because I am a well-educated, well-spoken person who actually lives with a disability. From living in the minority, from dealing with poor accessibility and discrimination, I know whereof I speak - and I know what needs to change. I can speak with authority for my people, and I have the education to help try cases and write good laws that will help make us more equal. Becoming disabled has given me the scent of what it is to be disenfranchised, which means I have greater understanding for those who have been disenfranchised in other ways.

    I find that sometimes, getting through it isn't a matter of optimism so much as it is a matter of pragmatism. This is what is. I can keep working towards what I hold dear or I can be halted by my disability. I try not to worry about whether this will ever get better, in part because I know for me the answer is that it will get worse. I look at the bad moments as a thing I have to get through, and each bad moment is a confluence of factors that will never be precisely the same again. So I am not 'like this for the rest of my life'. I am like this until something changes, whether it's a good night's sleep or a joint sliding back into place or using the air conditioner to make the temperature more comfortable. Once something changes, this precise moment will never come again. I try to think about which factors I can control, and prevent them from coming together in the same way.