Strangely enough this article from the NY Times was forwarded to me by my mother with some other articles about healthcare. Of course, reading about disability, illness, and medicine has, over the past few years, has become more important for me especially since I have no memories of my earliest health problems.

The article here points out exactly two things I've often felt:

1. Doctors have trouble understanding their patients and the values of their patients-this difficulty can and does result in very severe consequences for the patient.1 Thus, in order for the therapeutic relationship to work the doctor must communicate with the patient and vice versa. (Norman Cousins in Anatomy of Illness espoused exactly this view.) While accepted, particularly by AIDs and breast cancer patients, the vast majority of patients continue to see their doctors as "the enemy" or see themselves as passive objects upon which the doctor operates.

2. "Miracles" of healing come at a high price for the patient, and while gratitude is an acceptable form of expression, feelings of frustration, sadness and loss are just as valid; Unfortunately when expressing "negative" feelings, the chronically ill find themselves, shunned, rejected, or chastised for having a "bad attitude." This only increases a sense of isolation, which may cause the patient to attempt to "normalize" themselves. These attempts at normalization often take the form of refusing to take necessary medications or treatments. The doctor often takes these failures as a personal assault-"why is the patient rebelling against me when all I am trying to do is help?"-as opposed to seeing the behavior as either a failure to properly understand the necessity of the treatment or a misguided attempt to find acceptance in the "normal" world. Once this polarity sets in, the patient convinced that the doctor can't or won't understand, and the doctor thinks the patient is hellbent on self destruction, it is difficult to reconstruct the therapeutic relationships.

What's interesting about this article is that it points to an increasing trend in medicine,: doctors reading and writing about illness in order to become better doctors. Many medical schools now require their students to take medical narrative classes in which would be physicians have to read and write about illness. 2 3 Reading patient memoir helps med students to empathize with the patient, but it also gives them insight into how they have failed to engage the patient. (The patient also has some responsibility to discuss important issues, like cessation of medication, with the physician.)

Part of the reason there are so many patient memoirs is that patients, frustrated by rejection by the medical community (their refusal to listen or engage) as well as by their friends and family, reach out to find affirmation of their experiences by writing. Unfortunately, even these forums have, in some cases, become co-opted by outside pressure as Barbara Ehrenreich indicated in "Welcome to Cancerland." Her experience trying to express anger in a breast cancer forum echoes the author of "Sick Girl" namely that she was excoriated for being "negative." Breat cancer memoirs are the most popular as well as most formulaic of patient memoirs. While occasionally someone like Christine Middlebrook, who wrote Seeing the Crab, writes about the rage of dying from cancer, most of these books reinforce that cancer was "the best thing that ever happened" to the author including A Century of Petals and The Red Devil. Many, in fact, overtly acknowledge the cancer as ultimately being an overwhelmingly positive experience bringing the family closer and helping the patient re-evaluate her priorities. Thus only gratitude is the appropriate response to coping with what at worst be a terminal disease and, at best, be a long and difficult struggle. This affirmation of the "positive" aspect of coping with disease is a wish fulfillment on the part of the healthy. While understandable, essentially it is the equivalent of bowdlerizing what is a terrifying and stressful experience.

Hopefully books like Sick Girl and doctors like Dr. Chen will help improve the therapeutic relationship for both doctor and patient, but more I hope that it helps the healthy to understand that listening to the rage and frustration is just as much a part of the healing process as getting actively involved in researching treatments.


1. The Silent World of Doctor and Patient illustrates exactly this point-clearly showing from conversations between doctors and patients that a failure to communicate with the patient effectively can have dire consequences,

2. Medical students who were assigned journals to help them empathize with patients also found that writing helped them cope with problems and lowered their stress levels.

3 There have been famous doctor/writers including Sir Arthur Conan Doyle and Anton Checkov.

Labels: disability, health issues, illness, medicak narrative, writing