Identifying as a Survivor
Ah, the nuances of language! I have written before about the vocabulary of cancer, and how charged and controversial some of it is. For example, the standard phrase if a particular chemotherapy has not been effective is: "Ms. X failed Treatment Y." Shouldn't it be "Treatment Y failed Ms. X"? Then there are the war and military words, starting with President Nixon's declared War Against Cancer. If anyone ever writes in my obituary that I "fought hard" or "lost the battle", I hereby promise to haunt them. Clearly we should all be free to use whatever language we want when talking about cancer, but stopping to think about the words often is instructive. And that bring us to "survivor",
According to the National Coalition of Cancer Survivors, one is a "survivor" from the first moment after diagnosis. That definition is widely accepted, but I don't like it one bit. Although I sometimes hear myself using the "s word" to describe my own experience, it is only because that is easy short hand. Sometimes the longer sentence is more than I want to get into.
So, why don't I like it? (and please remember this is completely subjective, and I will always fully support anyone else's positive passion for the word) First, I am supersititious, and stating that I have survived cancer feels like asking for trouble. No one knows that for certainty until the moment of death from something else, and that is not exactly a moment to be anticipated happily. Second, "survivor" is commonly used to describe someone who has been through all kinds of horrific experiences: terrible car accidents, rapes, war. Although cancer is definitely not an experience that one would ever choose, it does not feel to me that it belongs in quite the same group. The trouble always is that no one has come up with another word that works.
This is an introduction to a study from the Journal of Cancer Survivorship. The authors looked at self-identification as a survivor in both men and women after cancer, and , specifically, looked at participation in support groups as a factor. This is a really interesting appoach, and their results suggest that having a survivor identification is a positive thing, an indication of empowerment. Not a way that I have ever thought about it, but surely another perspective.
Here is the abstract. I can't give you a link, so please email me (firstname.lastname@example.org) if you want the whole article, and I will send it along.
Adopting a survivor identity after cancer in a peer support context
Bronwyn A. Morris & Stephen J. Lepore & Bridget Wilson &
Morton A. Lieberman & Jeff Dunn & Suzanne K. Chambers
Purpose The term cancer survivor can refer to individuals
from diagnosis through the rest of their life. However, not all
people with cancer identify as a survivor, and underlying
factors and correlates are yet to be well-explored empirically.
Methods Study 1 surveyed men in a prostate cancer peer
support network (n=514), exploring psychosocial variables
related to adopting a survivor identity. Study 2 interviewed
160 women with breast cancer in an online support group and
collected observational data, assessing how survivor identity
relates to perceptions of and participation in online support
Results Formen, survivor identity (35 %) was related to lower
levels of threat appraisal (p=.000), more deliberate rumination
(p=.042), gaining greater understanding of cancer experience
through peers (p=.041) and a higher, though marginally significant,
level of posttraumatic growth (p=.052). Women
adopting a survivor identity (50 %) had higher rates of online
support group posts (p=.048), a greater feeling of mattering to
the group (p=.002), rated the group as more helpful (p=.004
to .01) and had less difficulty in relating to the group (p=.002)
than women not identifying as a survivor.
Conclusions Survivor identity was related to active and positive
engagement with peers, and cognitive processing.
Implications for cancer survivors While the cancer survivor
metaphor may be salient for some people diagnosed with
cancer, many did not associate with the term, highlighting
the complexity surrounding survivorship discourse and the
need to be sensitive to unique individual needs in psychosocial
interventions that involve groups.