March 26, 2011
Posted by Elizabeth Han
Have you heard of Münchausen by internet¹?
Reading about Münchausen was eerie for me. It used to be that the medical charade was carried out in-person: I certainly remember those dank scenes in “Fight Club” of an anonymous narrator faking terminal illness to gain entry to the relevant support groups. But I have to express that even viewing the phrase “faking illness online” was jarring. I became filled with questions about…stories.
We are proponents of participatory medicine. We believe in storytelling. We stand on high and promulgate confidence in blogs, wikis, and online patient communities. Not too long ago, Dr. V highlighted an NYT article showing that patient narratives can improve clinical outcomes. Outstanding.
However, a story is still a story. Does the story necessarily introduce an element of fiction? Because we need to “fake it to make it”?
And if the answer is yes, how much fiction is too much?
We Are Squishy Water Balloons
For animals, the confinement of the body is the confinement of the whole being, but a person can choose freedom even when he has no physical autonomy. In order to do so, he must know what choice is, and he must believe that he deserves it. By sharing stories, we keep choice alive in the imagination and in language.
Choice, in this view, is not to be taken for granted. Choice is something to be fed and nurtured. Most importantly, we believe in choice when we see it in others.
Why generate choice from stories? Because it may not be easy to see it others.
A felicitous analogy may be drawn to squishy water balloons²: “We bump up against each other, create ripples and waves inside each other, shape each other, but we’re still totally separate.” You infer what’s going on inside me based on what’s going on inside you, and vice versa. You might end up thinking that because your particular illness experience seems hopeless, that hope does not exist?
The power of stories is their translation of our insides to a form that can be propagated. To keep choice alive in the imagination and in the language.
You still might not believe that the story can apply to you, but at the very least, the possibility has been liberated and placed into that “shared space”.
A Tale of Two Narratives
So, we love stories.
The difficulty is the fine line between inspiration — the purity of a wish, a hope — and outright lies.
Münchausen by internet is unfair to the online communities it victimizes. It has preyed on the time and emotions of real people. I cannot condone it. Still, the perpetrators, from another perspective, may have been simply trying to edify a wish to escape from an illness of another type, of depression, of underappreciation, of those chronic, mundane sufferings that are overlooked but so very real.
They may have felt that they were simply making a choice. Ironically, it was a choice to be publically ill. And it resulted in a less-than-inspirational contribution to the collective imagination.
But is this really so hard to understand?
All of us have good days and bad days. I have often wondered if every day, whether you are a patient or not, we each make a million unpublicized choices between an “illness narrative” and a “wellness narrative”. Which means that neither is the real truth. We are not one or the other. Perhaps the difference between this and Munchausen is that we continue to make these infinitesimal choices all the time, because health is a process.
And if the struggle between the two is the truth, then what can we do about it?
I don’t know what in particular we should be doing to “police” the world of Health 2.0. It leaves a funny taste in my mouth to even mention that word in what should be a vocabulary of sharing and collaboration. But we should talk about it, for sure.
I am glad that most patient communities have user agreements these days.
I was also happy to find the Healthcare Blogger Code of Ethics (and Patient Blogger Code of Ethics) early on in my blogging adventures. The community there is ever-growing and I am proud to be a part of it.
Do you have any thoughts?
¹ For more on Munchausen, see these articles from Wired:
² Not my analogy! See theory of autopoiesis (Maturana and Varela).
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