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December 19, 2005

Five Smart Moves for Defying Arthritis
By Mary Felstiner, PhD
For The Record
Vol. 17 No. 26 P. 28

An arthritis sufferer encourages others with the disease to be proactive in their quests for a more comfortable existence.

One night, decades ago, I went to bed a healthy young mother and woke the next morning to find my hands didn’t work. In that instant, I joined 70 million Americans with arthritis, our nation’s most common and least fussed-over disease. In fact, I’d never heard of rheumatoid arthritis until I acquired (at 28) this painful, degenerative, autoimmune condition attacking my joints. And no wonder I hadn’t. Oddly absent from the public forum was any sustained story of my condition. It was a hidden disability, so I’d never seen it.

Yet this story belongs to millions of Americans with connective-tissue diseases, some of them pesky and persistent, some exceedingly painful, and all more shameful than they should be. As soon as brilliant new pharmaceutical remedies come on the market, they’re whipped off the market. Even though arthritis has become public in ways it never was before (mostly thanks to pharmaceutical marketing), too many of its sufferers remain silent, invisible, untreated, noncompliant, and ashamed.

With arthritis being the subject of recent cover stories in Time, Newsweek, and U.S. News & World Report, more patients and healthcare personnel now know enough to ask how we can stand up to this disease. Considering the absence of full personal disclosure from arthritis sufferers, we need more than market remedies to do this effectively. The truth is, we need a few smart moves.

Over the years, as a historian and person with arthritis, I’ve come to believe that patients who live with any condition that causes pain or disability, loneliness, or shame can be helped by defying it.

How can this be accomplished? Here are my top five moves for defying arthritis, addressed to patients and health professionals alike.

1) Keep a case history.
It took me years to realize the benefits of monitoring my own case history. Now, this is the first step in a process I call “healing by history.”

What I do, any patient can do—especially with support from healthcare staff. I design a personal and medical report before each doctor’s visit. Actually, my report does more than inform my doctor about my body’s faults joint by joint—it declares me an ongoing concern, accounting for all long-term losses and short-term gains.

Instead of feeling helpless about my condition, I’ve developed into the independent auditor of my own corporeal firm. Now my doctor slips my quarterly reports right into the medical record, as if instructed by The Illness Narratives, where Arthur Kleinman tasks patients with taking responsibility. Encouraged by healthcare professionals, patients can be the ones to make sense of flare-ups or improvements, and to rise to the challenge of tracking pain and other symptoms. This enterprise alone starts changing a disease into a story—and leads right into a second smart move.

2) Tell a life history.
Telling a story feels nobler than complaining about aches and pains. In essence, a case history—however useful in itself—needs to fit into a life history. Medical research supports this idea. One much-reported 1999 study in The Journal of the American Medical Association indicates that recounting one’s story can actually alleviate symptoms. Rheumatoid arthritis patients were asked to write down their “most stressful experience.” Four months later, they felt better physically than members of the control group. David Spiegel, MD, an expert in lengthening survival when cancer patients tell of their anger and grief, interprets these findings: Illness can trigger memories of past trauma, but “ventilation of negative emotion, even just to an unknown reader, seems to have helped.”

Like the patients in the 1999 study, I’ve found myself writing about a “stressful experience” or two. Though reluctant at first, I ended up creating my own questionnaire. For instance:

Question: What would you say to someone just diagnosed with your condition?

Answer: Better be an agnostic. You never know what’s coming next.

Question: If you could ditch the worst parts of arthritis, what wouldn’t you throw away?

Answer: My widest shoes.

Eventually, a private “questionnaire” can become open accounting. This accounting, the source of so-called illness narratives, illuminates many diseases, though not (until now) arthritis. Prominent among illness narrators, the writer Nancy Mairs says she copes with multiple sclerosis “by speaking about it, and about the whole experience of being a body, specifically a female body, out loud.”

How would patients benefit from speaking out loud about “being a body” with arthritis? It turns out that finding a witness to hear a story, says psychiatrist Dori Laub, MD, can “enable the unfolding” of a life account. Unfolding a life account puts arthritis into perspective. You finally own your illness by understanding it never owned all of you.

3) Think back through a body.
Speaking with a life perspective instead of a constant complaint is a worthy goal, but two obstacles may get in the way. The first has to do with memory.

For many years, I was unable to summon any coherent images from my pre-arthritis past. Then, one day my faulty ankle stumbled on a stone, causing me to discover a “finding device.” Thoughts about my ankles led me to recall how I had used them in the past. At the age of 8, those ankles were dancing “Sorcerer’s Apprentice” with abandon, in brown felt rhythm slippers. At the age of 17, they were prancing in high heels around a laboratory. Yes, that’s what I was like—I’d forgotten. Without those memories, my body knows nothing but arthritis.

Focus on precisely those parts that throw the body out of joint and treat them as entries into the past. In other words, when a troubled body part cues the mind, it lights the person no longer visible—someone who pre-exists aches and pains. That’s how to keep an ailment from taking over; realizing this becomes a potent scheme for defying a disease.

4) Focus on rights before wrongs.
If memory is one obstacle to opening a life history, the other has to do with arthritis itself, its lack of status in medicine and culture, its discouragement of disclosure, and its absence of models or incentives.

Blamed for years on aging and used as a metaphor for recession (for example, people say the economy moves at “an arthritic pace”), arthritis isn’t an easy illness to admit. Novelists and poets have skirted around it; public opinion has avoided its prevalence and economic impact. While the Centers for Disease Control and Prevention (CDC) begs the nation “to focus on arthritis as a public health problem … too big to ignore,” the government’s National Institute of Arthritis and Musculoskeletal and Skin Diseases operates on less than 2% of the total National Institutes of Health’s budget.

Why such a modest profile for a health problem too big to ignore?

Since it’s often associated with women and older adults, arthritis can get overlooked as being a “serious” disease. True, osteoarthritis falls on both women and men, but 16 million of 21 million serious sufferers are female, their symptoms are worse, and they endure them longer. In the case of rheumatoid arthritis, three of four patients are women who suffer the severest cases.

According to the CDC, arthritis is the leading cause of disability among Americans over the age of 65. It attacks every other senior citizen—but it’s debilating effects are not limited to seniors. It also affects people in their primes, enough to become a leading cause of work-related disability in the United States, according to the CDC. Rheumatoid arthritis often begins around the age of 25, clusters in females aged 35 to 55, and even wounds thousands of youngsters.

Beyond this misapprehended distribution, the disease may retain a low profile because of dismissive attitudes toward women and senior citizens. As a result, many arthritis sufferers, especially younger ones, belittle themselves when they can’t keep up. Over time, their shame corrodes energy. Corrosion leads to depression. Depression inhibits activity. Inactivity spirals into degeneration and pain. A little original shame becomes a serious hindrance.

So what are the smart moves against shame?

The first is to see the situation as political, though it feels personal. Sometimes, I tell my family I just want to be a parent and a person, not a patient. “With the result,” they respond, “that we all maintain a culture of silence around the fact and the pain of your arthritis.”

These days, I realize the culture of silence isn’t just individual. Around arthritis, it exists everywhere.

What finally pierced my silence and shame was the disability rights movement. Since 1991, when the Americans with Disabilities Act changed the law, people with arthritis can demand reasonable accommodation at work and in public places. Supported by healthcare professionals, we should enlarge the focus from our bodies’ wrongs to our legal rights. Through disability groups and the Arthritis Foundation, we can put pressure on legislatures to support drug-benefit programs, reasonable accommodation, and medical research.

To be an active agent rather than a passive sufferer makes all the difference, even physically. An active agent summons time and energy, which those of us with chronic illnesses usually feel short on.

And how else to summon time and energy? This takes another smart move.

5) Change the meaning of time.
To have any worth in this society, an individual has to keep up, if not get ahead. “Faster!” I order my joints, then I hear the desperation in my voice.

We have to get time on our side, along the lines suggested by Barbara Hillyer’s Feminism and Disability: “It doesn’t matter how long it takes you. It’s not a race. It’s your life and you can choose the pace.”

Choosing the pace—for instance, an hour to write this paragraph using a speech-recognition computer—sounds like a drag, but it opens a new possibility. Why not reinvent the workday, as if our clocks had gnarled hands and each hour ended with downtime?

One technique for altering the speed of time involves breaking a chronic condition into discrete stages. Each of these has a medical aspect but also a personal response, constantly changing, never stuck. Here are some examples of stages and responses:

Onset: Patient first feels ill. (Disbelief: “You mean me?”)

Remedy: Patient applies aggressive drugs. (Readiness: “I’ll try anything.”)

Remission: Patient’s symptoms run out. (Amazement: “What did I do right?”)

Recurrence: Patient’s malady turns worse. (Despondency: “How’d I go wrong?”)

Advance: Patient’s damage becomes irreparable. (Defiance: “I’d make a fist if I could make a fist.”)

Looking back on these stages, a chronic patient reclaims an unwelcome body that could have been ditched. Health professionals can help a patient make this reclamation, lay out stages, pry open medical puzzles, recall forgotten life events, and grasp memories that bear some witness to the times.

For myself, engaging in reclamation brings to mind others whose bodies keep backsliding. Can I help them view illness in fresh ways? To do this, I eventually ended up writing a book called Out of Joint: A Private & Public Story of Arthritis, and in the process uncovered a striking source of repair. It comes from my own profession as a historian. I realized that case, life, and chronic history that changes time’s pace can heal. It can heal by placing the life we live within a broader timeline. It can prove that we are not alone or at fault. Healing by history binds us together with others and the past, the same way joints connect the bones.

By connecting any or all of the aforementioned moves—keep a case history, tell a life story, look back through the body, focus on rights before wrongs, change time—we can turn from dreading a disease to defying it.

— Mary Felstiner, PhD, a professor of history at San Francisco State University, is the author of Out of Joint: A Private & Public Story of Arthritis (2005).

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