Christopher Hitchens, who has used his rhetorical prowess to skewer everyone from Mother Theresa to Henry Kissinger, has a new enemy: esophageal cancer. He has been writing in Vanity Fair about his experiences with cancer, movingly, since he was diagnosed this summer.
Hitch’s latest discusses the etiquette of dealing with (and being) a cancer patient. The whole thing is worth reading, but there was one segment, in particular, that I found especially important for those of us who deal with patients — directly or indirectly:
I have hardly been reticent about my own malady. But nor do I walk around sporting a huge lapel button that reads: ASK ME ABOUT STAGE FOUR METASTASIZED ESOPHAGEAL CANCER, AND ONLY ABOUT THAT. In truth, if you can’t bring me news about that and that alone, and about what happens when lymph nodes and lung may be involved, I am not all that interested or all that knowledgeable. One almost develops a kind of elitism about the uniqueness of one’s own personal disorder. So, if your own first- or secondhand tale is about some other organs, you might want to consider telling it sparingly, or at least more selectively.
Hitch’s admonition to keep specific when talking about a given health issue should be broadly applied, and it’s not “a kind of elitism” to think like that. No one experiences heart failure or diabetes the exact same way. I even got a taste of this three months ago, when I suffered a common injury during a pickup basketball game: of the 711,000 results Google identified for my malady, I could not find one that seemed to describe my exact constellation of symptoms.
Part of the lesson here, as Hitch describes, is about precision and respect for the complexity of disease. It’s critical, especially for those of us that work in or around the health care industry, that we ensure that we understand the subtle but important differences within diseases: the 67 different kinds of lymphoma or the distinction between early-onset Alzheimer’s and late-onset disease.
Patients certainly do make those distinctions, and they are going to be drawn to ever-more precise sources of information. That’s further going to accelerate the trend toward targeted publications, websites, forums and mailing lists. Take the Association of Online Cancer Resources, which maintains around 100 cancer-specific mailing lists. It may not receive the attention of a WedMD or other health information giant, but by targeting specific cancers — and by harnessing patient experiences — the mailing lists have a huge effect on thousands.
Christopher Hitchens clearly would like to live in a world in which cancer patients get only information that can inform them about their condition, specifically. And the way to get there is to acknowledge both the uniqueness of each individual’s disease, as well as the power those targeted publications and communities that have been created explicitly to serve them.