Friday, January 25, 2013

Living With Cancer: The Good Patient Syndrome - NYTimes.com

I remember when being good seemed strategic.
After the technician took out a pad to draw an inscrutable diagram, I nodded and pretended to recognize a squiggle at the center of what looked like a snail. I discussed my oncologist's research projects, instead of complaining about pain. Generally I answered a nurse's opening query -- "So how are you?"-- with a cheery "Good! How are you?" Grumbles about waiting interminably for a scan in a freezing room never rolled off my tongue. When an interventional radiologist managed to remove two stents from my body, I didn't fault the surgeon who left them there to trigger a massive infection followed by an allergic response to antibiotics: I sent a thank you note to the radiologist.
What was wrong with me? Outside the medical sphere, I am prone to impatience, candor and bouts of argumentative fervor. Had feminine socialization kicked in? As a girl, I was trained to be courteous to people in positions of authority and to revere the saving knowledge of physicians. But men also exhibit symptoms of the good patient syndrome.
Indeed, Anatole Broyard preached its virtues in his book "Intoxicated by My Illness," although his version was less compliant, more ironic than mine. "If a patient expects a doctor to be interested in him, he ought to try to be interesting. When he shows nothing but a greediness for care, nothing but the coarser forms of anxiety, it's only natural for the doctor to feel an aversion." Following this logic, Broyard embarked upon an impersonation: "I never act sick. A puling person is not appealing." He therefore set out to charm his physicians -- to distinguish himself from boring, easily forgotten patients. I did this too, adding a pinch of obedience, a dash of gratitude, and a smidgen of eccentricity to the mix. One doesn't want to be just any old patient; patients are replaceable.
Since illness had never intoxicated me, why was I behaving like Broyard? The short answer is terror: these people could hurt me.
Were I to seem boring or easily forgotten, should I appear crabby or disagreeable, I might get neglected or, in my anxious imagination, harmed. Not consciously neglected or intentionally harmed, of course, because doctors and nurses have dedicated themselves to helping people whose sickness often makes them boring and disagreeable. But neglected or harmed nonetheless. Like most patients, I am keenly aware that the medical staff at most facilities are overloaded. It is easy to get left for hours unattended on a gurney or starved and freaked when surgeries are perpetually postponed or distressed and bruised when the bindings on limbs are roughly or hastily applied.
But of course adopting the role of model patient does not provide a solution. Much of the caretaking in hospitals remains out of the control of our personal physicians and nurses. And in any case, too much ingratiating docility can be dangerous to a patient's health.
If I had persisted in asking my surgeon about the fate of the stents that he had implanted in my body, he might have remembered to remove them. If I had not followed to the letter the dosage he prescribed of a heavy-duty antibiotic, especially as I began to get sick to my stomach and dizzy, I might not have had the full-body breakdown of an allergic reaction. Earlier still, if I had insisted on better bowel preps before my first abdominal surgery, or a postponement, maybe the stents and infection and the allergic reaction to antibiotics would never have happened.
Even before that, if I had challenged my general practitioner who diagnosed indigestion, maybe my cancer would have been found at an earlier stage. If my grandmother had wheels, she'd be an omnibus: that's a family joke.
So much for the magical thinking that good patients receive the best care. Being a submissive or dutiful patient doesn't always pay off. Who exactly was I being good for? Sometimes it's good to be bad.
Was I good for nothing? When I was at my most puling and unappealing and too sick to be good, with pain so overwhelming that I had to be taken to my oncologist's examining room in a wheelchair, she placed her hand on my knee and kept it there while explaining how she would take care of me. Though I could not look her in the eye, though I could not speak for groaning, I took her point. I had foisted the good patient role on myself. She had always seen through the pose to the mortally sick human being. Why else would I be here, I realized.
At that moment I resolved to renounce or rectify my goodness. I don't always succeed.
Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of "Memoir of a Debulked Woman," which explores her experience with ovarian cancer.
http://well.blogs.nytimes.com/2013/01/24/living-with-cancer-the-good-patient-syndrome/?pagewanted=print