Last time I spoke to you about wording and public health, and the unintentional impact that can have on people. I want to continue on that theme today, and talk about what is perhaps one of the most pervasive, and more controversial language choices that we as as a society have made: the military language we use around cancer. Often, the media (and by extension, society) describe someone with cancer as a "warrior" who "battles" cancer. This language isn't rare, and has been around since the mid-70s when Susan Sontag wrote her book "Illness as a Metaphor." Research by Seale (2001) states: "News stories commonly feature sports celebrities with cancer, as well as sporting activities by ordinary people with cancer, designed to generate a sense of (usually successful) personal struggle."
The usually successful component is what results in problems. When we take the metaphor further, we describe it as "conquering cancer" when cancer goes into remission, or describe someone as a "survivor" of cancer. This is then further complicated by how medical professionals and researchers use the term "survivor" as they will have a very specific definition in mind. Some research studies use a five-year survival window following diagnoses, (see the Coleman study referenced below), while the CDC says: "The term cancer survivor refers to a person who has been diagnosed with cancer, from the time of diagnosis throughout his or her life."
This makes all the difference. "Survivorship" for research is a very precise, very defined term. It may not be the same as what an individual defines as being a survivor, and some definitions (such as the one above) may not include anything about quality of life following diagnosis. But even when cancer goes into remission, there's still a worry that it might come back, and so the term "survivor" may be a misnomer.
On the surface, I get why we use this language. The language is meant to be positive -- it's meant to evoke support. It's a tough and trying time, and family/friends/colleagues want to provide help in an way they can. So we follow the template set for us by the media and charities to try and help, as words fail us. I should point out though that this language (i.e. "surviving" "battling" "conquering") isn't used exclusively for military metaphors; it can also be used in a religious sense, or used in conjunction with sport metaphors, and there are distinct gender differences in how cancer is reported between men and women in the language and imagery we use.
But what's the other side of that conversation? Someone who "loses" their "fight" against cancer? Someone who has "fallen"? And to take it to the extreme, would they have "made it" if they "fought harder"? Kristen Garrison writes:
How can a woman with metastatic bone lesions read Lance Armstrong's story of conquering the disease and feel anything but failure? His story may be true, but does not represent the average person, and such narratives, which get so much press attention and bookshelf space, undercut the comparably determined but unsuccessful efforts of people fighting cancer.
There's a negative side to that language that is coming out, as those diagnosed with cancer speak up. Blogs and social media give people a platform from which to voice their displeasure and connect with others who feel the same way. Heather Cleland (herself diagnosed with cancer) writes:
The language around cancer -- of "battles" fought, won, lost, and succumbed to -- fails to consider the sheer chance of it all. Sure there are cancers that we bring upon ourselves, but most are a result of the tiniest bits of bodies going rogue for reasons we've yet to understand. To speak of lost battles as though the warrior didn't want victory badly enough projects our proclivity to control outcomes onto something that cannot be controlled.
In the same vein, I recommend these two pieces written after Canadian politician Jack Layton passed away by Carly Weeks and Edward Keenan. Both discuss the outpouring of support for Jack Layton that described him as "losing his fight against cancer" and the issues around those word choices.
Similarly, other people have spoken up; some notable pieces include Beyond Breast Cancer, an open letter by Aria Jones and finally, an excellent piece by the late Julie Mason. There are a number of people who are against the current language choices we made, and I think they raise some very valid and very compelling points.
While some people may not like the metaphor, some might find strength and solace in it. For those, this language helps them, and if they want to consider themselves a warrior, all the power to them. That's their decision and their prerogative. The Canadian Cancer Society sums it up well:
You may feel like a "survivor" or have heard the term used in conversation. But what does it mean? It means different things to different people. You may not like the way the word is used, or you might feel that it doesn't apply to you. But the word "survivor" helps many people. It can be powerful, and for some, it's a positive way of looking at themselves. Using it helps them to cope with their life after cancer.
*This blog originally appeared on "Public Health Perspectives" on plos.org