Author: Julie Matthews
June 5, 2015
Originally published April 29, 2010
According to the National Coalition for Cancer Survivorship (NCCS), a cancer survivor is “anyone with a history of cancer, from the time of diagnosis and for the remainder of life, whether that is days or decades”. I recently learned that the phrase “cancer survivor” was first used by a physician, Dr. Fitzhugh Mullan, in a 1985 article he wrote for the New England Journal of Medicine about his own experience with the disease. “That’s interesting”, I thought. “I just figured the term ‘survivor’ always existed for someone who outlived an acute illness.”
What truly is fascinating, however, is that for many people, cancer is no longer an acute illness. Patients are now shunning the word “survivor” for two very different reasons. Some believe it is not descriptive enough of the power one feels when fighting cancer…it does not represent the newly attained appreciation for life that is felt after a diagnosis. They prefer “warrior”, “fighter”, “conqueror” or “thriver”, to mention a few I’ve heard throughout my own experience.
On the other hand, there are many patients who view “survivor” as a hurtful word, one that belittles those who died from the disease. Dian “CJ” M. Corneliussen-James, Chairman of Metavivor Research and Support, Inc., wrote a wonderful essay in which she requests that readers be respectful of all breast cancer patients: “…we ask that ‘survivors’ be sensitive when they speak at conferences and public forums and be ever cognizant of the fact that many do not survive the disease and persons with stage IV breast cancer might well be in the audience.” She and her friends, all metastatic breast cancer patients, created the word “metavivor” after a conference in which they felt slighted by the rest of the breast cancer community. “Metavivor” implies that the patient is indeed alive and enjoying life, but she/he also lives with the knowledge that medicine has no cure for metastatic disease, and that she/he is not likely to survive it.
I didn’t realize “survivor” could spark such a controversy until we discussed the topic at some of my more recent young adult support meetings and also through the work I’ve done with Side-Out. I had a difficult time grasping why it was such a big deal to some people. I mean, if you’re alive, then you’re surviving. Enough said. Perhaps my thinking was skewed due to my own positive outcome. Or maybe I was simply thinking too literally. Human beings are designed to analyze, and it seems we often assign more in-depth meaning to a word than was initially intended. My many years of studying Spanish and the science of language certainly taught me that language evolves and it is intrinsically tied to human emotion and expectations.
The beauty of language lies in its diversity and our capacity to comprehend. As the cancer culture grows, so do our (cancer patients’) expectations of understanding and empathy. So where does that leave “survivor”? Language is quite personal, and it only makes sense that each patient dealing with cancer perceives it in a varied light. I get frustrated when I hear of people getting angry because someone refers to them as a “survivor”. I think as patients, we need to have compassion for friends, family and strangers who speak with us about our disease. In essence, we are their teachers, and if we can educate them about our feelings without being defensive, our message will be more effective. I am a survivor, and I ask that you respect my language and my experience.
Do you have a word that you prefer to “survivor”? Post a comment with your personal preference, and we can create our own list of terms.