Monday, October 3, 2011

Optimism vs. realism

Follow-up on what doctors do and do not say
My sister and I talked after a previous post. She commented that she had called her daughter, an oncologist, before she and I first met the oncologists here, to ask what to expect. My niece said that oncologists describe (1) diagnosis, (2) staging, and (3) treatment plan.  They offer a prognosis (“xx months to live” or "yy chance of cure") only if the patient asks.  In a recent e-mail, my niece made the point more strongly: “I believe that discussing prognosis is an invasive procedure, so I try not to thrust it upon patients before they ask.” Interesting. I didn’t ask, and I don’t intend to.

Optimism vs. realism

 A few weeks after the surgery someone asked me “Are you optimistic?” I was nonplussed. The thought running through my head was “I am in pain and dealing with a terrible diagnosis. How can I be optimistic?” But that is not the answer people want. They want to hear that you have a great attitude and are optimistic, because, as goes the narrative, that is why you will beat this thing. Hogwash!
This has vexed me for years. I have seen the damage it can do when therapy fails. The unavoidable corollary to “With the right attitude you will beat this thing” is “It’s your fault if you die. You didn’t have the right attitude.” This is wicked.
There was an excellent opinion piece in the New York Times last January, “A Fighting Spirit won’t save your life”, written by Richard P. Sloan, a Professor at Columbia University Medical Center. (No, I don’t know him, but I did send him an admiring e-mail.) Google it: he makes many good points. His concluding paragraph:
It is difficult enough to be injured or gravely ill. To add to this the burden of guilt over a supposed failure to have the right attitude toward one’s illness is unconscionable. Linking health to personal virtue and vice not only is bad science, it’s bad medicine.
I consider myself a reasonably optimistic person. (Years ago, I was quoted in Vogue, of all improbable places, as saying that scientists have to be optimistic in order to keep trying when their ideas don’t work.) But as a scientist, I am also a realist. I will try to maintain a positive attitude, since that will help me and those around me in the day-to-day aspects of dealing with this disease. I don’t mind it if you tell me I am positive or brave. Just don’t expect me to smile and agree if you then say that this means I will beat this disease.
But I do love the “Positive Altitudes” Life-is-Good T-shirt I was given for my birthday.

Future topics:
To work during treatment?
Depending on family and friends without overwhelming them (and me)
“You look great” and other comments that stump me.
Language pitfalls

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