The Stigma of Cancer

Patient Expert

Breast cancer changes your life forever. Equal parts physical and emotional devastation, it leaves you wounded in both body and spirit. And while you mostly recover, you can never return to your life before cancer. Plucked from the healthy herd, you're branded a "survivor" - and nothing will ever be the same.

I had breast cancer. I have breast cancer.

Which is it?

Thirteen years ago I went through one of the worst experiences of my life. Diagnosed with cancer at the relatively young age of 47, I underwent aggressive treatment: multiple surgeries, chemotherapy, radiation, and nine years of hormone therapy.

I'm now NED: "no sign of disease," doctor shorthand for, "We don't see it but we can't really say for sure it's gone." Cancer may be lurking, ready to reveal itself at some indeterminate time in my lungs, my bones, my liver. I asked my oncologist recently, "When can I say I'm cured of cancer?" He answered, "When you die of something else."

So yeah; I had - and have - breast cancer. I have the scars, both physical and emotional, that mark me as a survivor of this insidious disease. Scars I feel every day.

When you're diagnosed with cancer, you step over a permanent line in the sand. One moment, you're a face in the crowd, part of the vast majority of people who go through life assuming good health. And then, after a few simple words from your doctor, that world is lost to you forever.

Oh, sure, the occasional head cold, bad back, or bout of the flu reminds most of us that we're only human, prone to our common maladies. And once the aching back or stuffy nose passes, we move on - healthy once more, unmarked, unchanged.

For those with cancer, however, it's a different story. Once you're diagnosed, you become a survivor - a term that identifies you both as someone who's been there, and someone who might go back. And that fact - the knowledge that cancer is never really gone "for sure" - is your cancer takeaway. Your permanent stigma.

Stigma is broadly defined as "a mark of disgrace or infamy; a stain or reproach, as on one's reputation." In medical terms, stigma is "a mental or physical mark that is characteristic of a defect or disease." Somehow, with cancer, the two meanings become inextricably entwined: the marks of your disease become a stain - not on your reputation, but on your connections with those around you.

Cancer survivors are stigmatized in ways both expected, and surprising. As a pale, weak, bald-headed chemo patient, averted eyes from the supermarket checkout lady and tentative, uncomfortable attempts at conversation from casual acquaintances mark your passage through everyday life.

This is only natural; how do you interact with someone who looks like death - someone who might, in fact, be dying? So your stigma - the stain/strain you feel - isn't a surprise.

And the fact that (until recently) insurance companies could refuse cancer survivors health insurance? That potential employers could ask questions about health, and possibly set an application aside if it includes the word "cancer"? Well, that's the business world for you.

What's unexpected, though, is the "stain" you might feel in your more personal relationships.

Your husband used to joke about your breasts; now he carefully avoids the subject - in words, in looks, maybe even in bed.

Your mom always nagged you about your hair and your weight. Now that nagging, part of the fabric of your life and comfortable as an old shoe, is gone, replaced by sighs and sympathy.

And your friends - well, maybe some of them aren't so friendly anymore. People react to cancer in wildly varied ways. Some casual friends become close; some intimate friends run away.

Some friends stick with you through treatment, then fade. Some avoid you during treatment - and then return. Friendship and cancer is a tentative and uncertain dance of love and loss, hope and fear, marked by the desire for something you can't have: a return to your previous life.

Many survivors wave the banner proudly. "I kicked cancer's butt" is a common quip in cancer-land, testament to the physical brawl that cancer sometimes feels like.

But you know what? Inside, many of those feisty survivors would give an awful lot to be back where they were before D Day - diagnosis day. Back when waking up in the morning wasn't fraught with equal parts anxiety and gratitude.

Back when the only stain in life was the chocolate on your daughter's favorite dress. And the harshest stigma you faced was being a Red Sox fan in New York City.