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Posted on Fri, Feb 11, 2011 : 8 a.m.

Candid Cancer: Why the label of 'survivor' rubs me the wrong way

By Betsy de Parry

Time and distance always render perspective, including perspective about the words we often hear in the world of cancer. Take "survivor." From the very beginning of my illness, I hated being labeled a "survivor." During treatment, I wanted to scream, "Survivor? Don't you get it? I want to do a lot more than just survive." All these years later, labeling me a "survivor" still rubs me the wrong way. It's like allowing cancer to define me. Why can't I just be Betsy, who has done many things in her life and who once happened to have cancer but who doesn't have it now?

Do I have a better suggestion? I'd prefer no label at all, but if there must be one, I would prefer the word "graduate" which would imply that I learned something, but "survivor" is so widely accepted that it's the word we're stuck with. I do understand the necessity of a word or short descriptive phrase to identify the nearly 12 million of us who are living after our diagnoses,  but there is no single word or phrase that could possibly apply to so many unique individuals. Since "survivor" is the universally accepted label, I use it, even on myself, though I cringe every time I do.

I'm not alone. Many have told me they don't like being labeled a survivor any more than I do. Some have said — and I see their point — that they think "survivorship" has been idealized. That this one event — cancer — suddenly enlightened us, strengthened us, and turned us into heroes and fighters. I don't know about you, but that's far too much for me to live up to.

Cancer did enlighten me to a wider world and make me much more aware of human suffering. But was cancer the wake up call that so many people say that it is? No. I was neither asleep for the first 51 pre-lymphoma years of my life nor did I suddenly have a great revelation that life is precious. I already knew that.

Did it help me to prioritize? Yes, becoming acutely aware of my finite time here on earth, I try to prioritize better than I did BC — before cancer — but sometimes the demands of life simply get in the way. The year I want to spend in the Caribbean is a priority, but work needs to be done and bills need to be paid, and the Caribbean just has to wait.

Did cancer strengthen me? Every difficult situation leaves an indelible mark, but it's also an opportunity to learn a lot about ourselves, and Alex and I did find inner reserves we never knew we had and grew stronger for having found them. But the fact is, life hands us all plenty of tough situations and we somehow manage to rise to the occasion and do things we never dreamed we could.

Think about it. If anybody ever told you that you'd voluntarily be poked, prodded, knifed, drugged or radiated, would you think you could? Nearly 12 million of us have, but just because I'm one of them does not make me a fighter or a hero. I didn't fight for my life any harder than anybody else. And I didn't volunteer to have cancer for somebody else, which might have been heroic. I simply got sick, took a lot of horrible drugs for several months, laid around most of the time I was taking them, watched my friends and family worry, and then got well. That's not heroic. It's what life handed us. And sometimes life is messy.

Today, Alex and I are still the same people we were before cancer invaded our lives. Only now, cancer is part of who we are, but it's a long way from the sum total. Of course we're grateful that I survived, and we know that I'm one of the lucky ones because I did, but our personal triumph is tempered by the fact that I've cried at the funerals of too many "survivors," which is why, more than anything else, I dislike the term "survivor," as it seems to deny that cancer claims the lives of 1,500 Americans day in and day out, year after year. That's 9/11 every two days, and I wonder why we all aren't outraged. And why we haven't won this deadly war on cancer. Only then, can we all fit neatly into the label of survivor.

Next Friday, February 18: The Candid Cameras of Medicine

Previous installments of Candid Cancer are archived here.

Betsy de Parry is the author of The Roller Coaster Chronicles, a book about her experience with cancer and the shorter, serialized version she wrote for Find her on Facebook or email her.



Sun, Feb 13, 2011 : 4:48 p.m.

I'm not particularly fond of any label that defines a person by his or her illness or condition like "asthmatics" for those with asthma or "diabetics" for those with diabetes. So, yeah, I tend to agree with you that the term "cancer survivor" when used as a label is a poor choice. But if people continue to use it, they should at least append it with the term "so far," because cancer has a way of coming back and biting you in the rear end even after the standard five year survival period. And just for the record, as a "survivor so far" of two unrelated cancers, I agree there is nothing valiant about being cut, burned and drugged. You endure it because you have no other reasonable option.


Sun, Feb 13, 2011 : 4:20 p.m.

Nice article. Putting the label of "survivor" on anyone who has lived through tragedy, whether it's a family tragedy, or war, or rape, or wrongful imprisonment, limits our perception of that person.