Monday, March 05, 2007

The Inner Life of Illness

In my Women & Literature class, we're currently reading Anne Fadiman's brilliant book The Spirit Catches You and You Fall Down, about a Hmong girl named Lia Lee whose medical treatment for severe epilepsy was tragically compromised by cultural mis-communication -- or, in many cases, non-communication -- between her parents and her American doctors. My students love the book, and it's evoked unusually passionate classroom discussion.

Part of the problem, aside from nearly insurmountable language barriers, was that the Hmong have a completely different cultural understanding of disease than Western doctors do. In her discussion of cross-cultural medicine, Fadiman quotes "a set of eight questions, designed to elicit a patient's 'explanatory model,' which were developed by Arthur Kleinman, a psychiatrist and medical anthropologist who chairs the department of social medicine at Harvard Medical School" (p. 260).

Here are the questions:

1. What do you call the problem?

2. What do you think has caused the problem?

3. Why do you think it started when it did?

4. What do you think the sickness does? How does it work?

5. How severe is the sickness? Will it have a short or long course?

6. What kind of treatment do you think the patient should receive? What are the most important results you hope for from this treatment?

7. What are the chief problems the sickness has caused?

8. What do you fear most about the sickness?

Fadiman points out that although these questions at first seem obvious, their value lies in the fact that many patients, especially non-Western ones, will answer in ways their doctors would never expect. For instance, the Lees believed that Lia's epilepsy was caused by her soul being startled out of her body when one of her older sisters slammed a door. Imagining how the Lees would answer these eight questions, Fadiman includes, as part of her answer to number six, "We hope Lia will be healthy, but we are not sure we want her to stop shaking forever because it makes her noble in our culture, and when she grows up she might become a shaman" (p. 260).

This made me think about some of the patients I've seen in my own work as a volunteer hospital chaplain. I've written here before about the father, undergoing his third heart surgery after the death in an auto accident of both his teenaged daughters, who told me, "My heart problems are God's way of showing me that my daughters are better off in heaven than they would be here, where everything hurts." While I don't agree with the theology of this statement, the patient had found a way to give his illness meaning, even (in some dark sense) to see it as a source of comfort. I found myself wondering how he would react if his heart problems could be fixed. Would he miss the reassurance he had found in them? And how could comfort be offered in other, less damaging and painful forms?

As this patient illustrates, people from other cultures aren't alone in assigning meanings and values to their conditions, in writing narratives that would never occur to their medical caregivers. I've seen plenty of American patients do this, and I've begun to wonder if perhaps doctors and nurses should, when possible, ask the patient some version of, "Has this condition or course of treatment done anything good for you? Is there anything about it that you would miss if it were gone?"

It's well-known that some patients invent illness to get attention, but Munchausen Syndrome isn't what I'm talking about here. I'm more interested in how and why patients find value in medical problems they haven't caused or created themselves. Bipolar patients, famously, are often reluctant to take medication because they enjoy the heightened excitement and creativity of manic phases. I've heard many cancer patients say that while they wouldn't wish cancer on anyone, the disease has given them new insight, new appreciation, a new sense of living in a generous world where people reach out to help each other. And although cancer treatments like chemotherapy and radiation are notoriously difficult and harrowing, several cancer patients I know -- including my mother -- have found themselves feeling newly frightened when those treatments ended. "As long as I was getting chemo and radiation, I was doing something active to stop the cancer. Now I'm just sitting here, and it makes me feel helpless." How can cancer patients find new sources of empowerment after treatment?

In my own life, my periods of illness -- a life-threatening infection in 1994, gallbladder surgery in 2000, various bouts of depression -- have been times of heightened spirituality and creative inspiration. While I certainly can't say that I enjoyed these experiences, or that I'd want to go through them again, I wouldn't erase them from my life history even if that were possible. My personal challenge has been to achieve those same spiritual and creative states when I'm healthy.

Many patients, of course, find no benefit at all to whatever's wrong with them, and would be purely and entirely delighted could their problems be fixed. But I think medical caregivers need to be sensitive to the ways in which illness may be useful for patients, and help patients find alternate sources of whatever gifts the illness has bestowed.


  1. Anonymous9:41 PM

    I think that, even when the patient hasn't by any stretch of the imagination caused the illness, doctors are still taught to view "secondary gain" as a character flaw or mental aberration.

  2. What I find interesting is how morally normative Western Medical Science actually is within its own milieu. Take the example of the Hmong girl. I haven't read the book, but I imagine that some of the discussion in your class centered on the question of whether she should be "forced" to be treated.

    We see cases like this all over the press in the West and have had legal cases where patients, who might die without treatment, are litigated into treatment. Doctors often have a normative standard that "health" equals "moral value," straight out of Thus Spake Zarathustra.

    I am not one who holds much faith in "alternative medicine," but I very much sympathize with the Christian Scientists who wish to "treat" their illnesses in their own way. I may mourn the decision. I may be frustrated when the answer seems so obvious. But I also recognize the nobility of individual choices with regards to the sovereignty of one's own body.

  3. Christian -- What gets tricky about this is when parents are making decisions for kids who can't make their own decisions yet. What do you do when the parents and the doctors have very different ideas about what's best for the child, and the child's too young to offer an opinion? That's the situation in the Lee case. You really should read the book; it's superb!

  4. otterb7:13 AM

    A similar idea of secondary gain sometimes comes up on an e-mail list I belong to for parents of kids with special needs. While we wouldn't have wished difficulties on our kids, there is a whole subculture of families that's very helpful, supportive, and accepting, and most of us never knew it existed.


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