A week or so ago it was National Cancer Survivors Day. This would be a good day for me to celebrate, right? Yes, I was and am happy to still be here, but celebrate on that designated day, no.
So, what’s the problem? Or more specifically, what’s my problem you might ask?
I don’t like labels very much. I tend to avoid them whenever I can. The survivor label is one that makes me uncomfortable for various reasons. I know this may sound like an odd statement for me to make, but I also know I’m not the only one who feels this way. Uneasy Pink blogged about this very thing last week as did Beth from Calling the Shots. Being Sarah has a similar position and has blogged about her uncomfortableness with the survivor label as well.
I asked my oncologist once, “When am I technically a survivor? Upon diagnosis? After my tumor is removed? After my bilateral? After finishing chemo? After two years have passed? Or the big five year bench mark?”
“As soon as you are diagnosed,” was his response.
Let me tell you, I did not feel anything like a survivor the day I was diagnosed. The word felt like a misnomer from day one.
According to the criteria for such things, I have been a survivor for about thirteen months then I guess. The problem is, I don’t think of myself that way. I think more of myself as a person who has had cancer and is doing ok for now. I survived treatment, but cancer? Only time will tell on that one.
You’re being too sensitive we survivors are sometimes told. You don’t need to over analyze everything.
Even my husband recently asked me, “Well what do you want to be called then?”
Survivor is just a word; in fact, a word intended to make me feel good. The word itself is almost like a special badge I am supposed to proudly ‘wear’ to tell the world I have survived cancer. It beats the alternative, right?
It reminds me of my Girl Scout days when I completed all the necessary requirements for each particular badge I earned. Actually, I’m pretty sure there even was a badge for survival skills. I didn’t earn that one.
The trouble here is, I will never know when all the requirements for cancer have been completed. I feel like I am supposed to accept a badge I did not earn.
It seems to me in order to survive something, the thing or event you survived must be over. For good. You survive a plane crash. You survive a war. You survive a childhood illness. You survive a personal loss. You survive a natural disaster. It’s done. It’s over.
The trouble with cancer is you never know when it’s over, not with any certainty anyway. There are no guarantees.
Another reason I don’t like the survivor label very much is because when I look at the posters and pictures of women symbolizing survivorship, they often are depicted to look something like this.
The women look beautiful, too beautiful. They don’t look real.
They look almost as if they came out the other side of cancer as a new and improved version of their former selves.
Also, what about all those people (like my mother) who didn’t and won’t survive cancer? Did they not work hard enough at their cancer survivorship skills? Did they not put in the right amount of time? Or the right amount of suffering?
As Dr. Gayle Sulik states in her book Pink Ribbon Blues, “Rather than validating the full range of experience, the survivor model constructs a misery quotient. Did I suffer enough to be called a survivor? Did others suffer more than me? Am I worthy of the sisterhood? In addition to influencing women’s capacity to get social support such measures invalidate the whole of women’s experiences.”
Sulik further states,”The exclusivity of the term survivor focuses attention squarely upon those who are living, essentially erasing those who are dying from the disease.”
I could not agree more and I refuse to “erase” the experiences of those who have died or will die from this disease.
And what about the women who are presently living in the almost forgotten land of metastatic breast cancer?
These women do not have their heads in the sand. Believe me, they are very well aware of the statistics.
The statistics that say only about 27% are still alive five years after a stage IV diagnosis.
Are they survivors of a different sort? The temporary kind?
Where are their badges?
Where are their survivor posters?
I know survivor is only a word. I know we have to use the words available to us to describe stuff, even cancer. I also know this word does “work” for some people and I respect that. If the word “works” for them, that’s fine.
Maybe it’s not the word survivor that bothers me so much, but rather the expectations that seem to exist for “proper” survivorship.
There is no one-size-fits-all way “to do” cancer. There is no-one-size-fits-all way “to do” surviorship.
Yes, survivor is just a word.
As for me, it doesn’t seem to fit quite right.
How do you feel about the survivor badge/label?
What labels have you been given and how do/did you feel about them?