Thursday, December 12, 2013

Here's the Dirt: Cancer Still Carries a Stigma

The number one question lung cancer patients get asked: Did you smoke?

The answer most want to give is: What does it matter?

To scientists, epidemiologists, policymakers, statisticians, journalists and storytellers, the cause/effect is very important. It leads to further study, policy decisions, stories and good infographics. To cancer patients and their families, it typically leads to guilt and pain. 

I ran headlong into this issue when my work blog posted an infographic trying to raise awareness about the benefits of quitting smoking. Well-intentioned as it was, it fanned the flames among lung cancer patients, many of them non-smokers who feel that they have been lumped into a group of patients with a target on their back -- a group that is often tossed the compassionate comment, "well, that's what you get from smoking." Save for a minute the ridiculousness of that comment, which avoids thorny issues like addiction and our evolving knowledge base, the persistent linkage between smoking and lung cancer helps perpetuate the myth that to get rid of lung cancer all we need to do is get people to quit smoking.

That is far from the truth. 

We need, as lung cancer advocates will tell you, more research funding and better advanced screening. While I would be glad if the last cigarette in the world were smoked yesterday, that wouldn't erase lung cancer today -- nor would it erase lung 80 years from today. (Here's what we ended up posting instead of the infographic.) 

I don't have lung cancer. I have follicular lymphoma. But I felt in my own way, the stigma that lung cancer patients feel. There's a two-fold guilt that surrounds cancer patients. Unless you've led a saintly life, you immediately start questioning past decisions from physical, theological and philosophical perspectives. 

I've led a physically active life since, well, forever.  But I often wondered: Are the tumors growing in me the result of some carcinogenic seed I planted inside me 20 or 30 years ago? Did I set off the molecular chain reaction that got me to where I am today? Is my cancer some kind of universal moral retribution for my transgressions? A karmic kickback? 

It's little  wonder many cancer patients naturally try to live better after their diagnosis. On one hand, it's a shot at control in a sea of chaos -- an attempt to do something that you can to battle the disease. It can also be a response to the guilt -- a chance to make a deposit into the karma bank.

But there's another subtler form of guilt at play here, and it's what I call the dirt of cancer. See, for all the enlightenment we may have experienced as a society -- most people no longer refer to cancer as the C word -- cancer casts a shadow of dirt, grime and disease on an otherwise healthy person, and in doing so it can make a healthy person feel not just sick, but unwholesome. Forget for a minute the actual physical ailments that cancer, and of course, the treatment can cause, just knowing you have cancer in you makes you feel diseased. 

And the last thing any diseased person wants, I would venture to guess, is to be told what they did wrong to get this way.