The odds are beating me
Friday, March 27 2009
In his response to my post about Billy Tauzin and the patient’s perspective, Ken Johnson said:
Fortunately, both of you continue to beat the odds.
He meant me and Mr. Tauzin: I have Crohn’s, Mr. Tauzin had stomach cancer. You can read more about how Tauzin beat the odds in a previous post; now I want to ask, am I really beating the odds?
“Beating the odds” is one of those weird phrases that doesn’t make sense after you’ve been sick a while. Managing a disease is not a casino game – though if Mr. Johnson thinks it is, that might explain where the pharmaceutical industry gets its business model. Of course, what Mr. Johnson means by “odds” are probabilities based on data. And to “beat the odds” means to realize an unlikely outcome. So we can look at the data and ask: am I beating the odds?
For starters, what are the odds of me having Crohn’s disease? Somewhere between 1 in 500 to 1 in 4,000. So in a sense – yes, I beat the odds!
A couple years after I was diagnosed, I needed surgery for a fistula. The rate of “early surgery” in Crohn’s is about 1 in 5: I beat the odds!
Now to Mr. Johnson’s specialty: drugs. I developed an infusion reaction to Remicade, which happens for only about 13 in 100 patients: I beat the odds!
I could go on and on with all the ways I’m “beating the odds”, but I think you get the point: the odds are kicking my butt.
This might look like knee-jerk pessimism, but here’s the thing: telling someone who is surviving a serious disease that he “beat the odds” is like telling your four-year-old how great her finger-painting is. It might mean something in a certain context, but only therein – and eventually your kid grows up and realizes you were never really invested in her artistic career.
And even if you mean it well, Lisa points out there are plenty of patients who can’t or won’t beat the odds. That’s by definition: for “beating the odds” to mean anything, a lot of people have to not beat the odds. The problem with the disease-as-dice analogy is that it’s callous towards those folks. In my case, it means I’m supposed to feel good that I’m marginally healthier than the hundreds of thousands of other people suffering from Crohn’s disease; my “beating the odds” is only meaningful in the context of their suffering. You see how perverse this is, right?
Because I’m not a heartless monster, I prefer to celebrate my survival in ways that don’t ignore other people’s suffering. My survival isn’t a question of luck – rather a matter of ongoing, often grueling struggle to carve out a worthwhile life from this mess. To the extent that I’m better off than other people, I want to help make life less of a struggle for them – not rub their noses in it.
