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What’s Wrong With A Survivor Label Anyway?

What’s Wrong With A Survivor Label Anyway?

What’s wrong with a survivor label anyway?

I don’t like labels. I avoid them whenever I can. The survivor label is one that makes me uncomfortable for various reasons.

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.

The problem (for me) is, I don’t think of myself that way. I think more of myself as a person who has had a cancer diagnosis and is doing okay 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 Dear Hubby recently asked, “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? I mean, I’m not dead yet.

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. Ironic, right?                                                  

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. I sure as heck don’t relate.

They look almost as if they came out the other side of cancer as a new and improved version of their former selves, which to me is total BS.

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.

What about my mother, and all the others, who’ve died from metastatic breast cancer?

Where’s their day?

And what about the women (and men) who are presently living in the too often forgotten land of metastatic breast cancer?

These women (and men) do not have their heads in the sand. Believe me, they are very well aware of the statistics.

Are they survivors of a different sort? The temporary kind?

Where are their badges?

So, what’s wrong with the survivor label?

For some, plenty.

Survivor is only a word. I know we have to use 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 some, that’s fine.

Yes, survivor is just a word. Just a label.

As for me, it doesn’t fit.

What’s wrong with the survivor label?

Tell me how you feel about it.

How do you feel about the survivor badge/label?

What other labels have you been given and how do/did you feel about them?

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How do you even start to emerge from a cancer diagnosis, loss, the pandemic, or any trauma? #cancer #grief #petloss #pandemic #trauma #womenshealth #familyrelationships

Sara

Monday 5th of June 2023

I just commented on your Twitter feed, and I know this post is 12 years old...but I HAVE to write and say how relieved I am to hear someone express what I've felt as a daughter of a person with multiple diagnoses of BRCA driven cancers. Who will NEVER be "done." In the thick of the worst days after diagnoses, we did not feel like "warriors" and when someone gets a stage 4 diagnosis you feel very lonely because your situation doesn't fit the stereotypical "cancer, then cure" narrative. We all just felt like we were keeping our heads above water (and failing) and my parent was depressed to a level I had never seen. Which...of course! But thanks to all the fairy stories we tell ourselves about noble, brave, cancer warriors, it's another loss and surprise you have to deal with when you find out you aren't "doing cancer" right.

Quite frankly, my feeling is that it is actually never "over" for any cancer patient or their families. I have another relative who had a pretty straightforward diagnosis with a relatively brief treatment and good prognosis, and yet he still had 10 years of anxiety-inducing follow up and now has to worry about the lasting effects of his treatment.

I never felt "lucky" to discover I had a 50% chance of inheriting BRCA during our family's darkest days...I felt like someone was coming along and pulling me under the waves. But I was repeatedly told how lucky we were to get a chance to "control" and fix the situation, as if certainty was possible. Rather, I felt like my family won a sort of reverse lottery. I was happy to be negative...but my reaction was again very numb and not as relieved as I thought I should be for someone who was released from making irreversible decisions where there was no great choice. I didn't feel grateful and women are always supposed to be grateful for what they get, even when it's just a lack of something terrible. Quite frankly, I resented the extra three months of suffering and anxiety it brought our whole family.

Ironically, the one twisted benefit of a Stage 1V diagnosis is that there are no goalposts anymore. You just support your loved one in living. I started seeing cancer as more of a chronic illness than a one-and-done situation where you are sick and then you get cured. It feels more realistic and comfortable to me, and I actually find more peace and gratitude with this mindset. But again, it's very counter to the typical narrative. My own doctor recently made the comment about how cancer is "so survivable" when caught early, the tone and implication that we've basically figured it all out, and I felt my face freeze up while I contemplated how to respond, as the child of someone who found their cancer "early." Three different times. I kept my mouth shut. Because, as you can see by the length of this post...it just all spills out once I get going.

Nancy

Wednesday 7th of June 2023

Sara, Thank you for sharing your astute observations and opinions. You and your family have been through a lot and as you said, it's never over. I agree that one is far from lucky to learn they have a 50/50 chance of inheriting a devasting genetic mutation so they can do something. I get that being proactive is a good thing, but there is so much more to the story. Feel free to let it all spill out here any time. My best to you.

Sarah

Monday 6th of June 2022

I think you're right - for me "survivor" implies its over. I'm not a survivor. And conflating all these experiences into one is really not helpful to anybody.

Nancy

Monday 6th of June 2022

Sarah, I know the label works for some, and that's fine. I use it sometimes because it's hard to come up with a word that folks understand. Of course, they don't necessarily understand this one either. Your point about conflating all experiences into one is a really good one. One word/label can't be slapped on all of us. And it really bugs me when someone insists we take on the label. Thank you for sharing your thoughts on this.

Gogs

Sunday 6th of June 2021

It does seem strange to be called a survivor while you're still in treatment. I'm 4-years NED and do use the term survivor as my treatment is over. At least for now. I fear recurrence, and being a survivor doesn't mean everything is back to the way it was before treatment. There are lots of damaging side effects, both physically and mentally.

Nancy

Monday 14th of June 2021

Gogs, I use the label sometimes too as I've yet to come up with an alternative that people understand. I really wish there was a better word. And you're right about the lingering damaging side effects. Some physical and some mental. Thanks for sharing your thoughts on this.

Linda

Monday 8th of June 2020

Sigh. I have a really hard time with the word Survivor. After my sensitive daughter heard that I was diagnosed with Stage 4, she signed us up for a walk. And insisted that I wear the Survivor shirt. I felt so hypocritical. Am I a survivor? A Thriver, for sure because those looking at me do not (yet) see a sick person. But if breast cancer has returned (and I really think it never left), then how can I be a survivor? I do believe that I can - and am - thriving with it. There's a difference!

Nancy

Wednesday 10th of June 2020

Linda, May you keep on thriving! Btw, that is a good distinction, hadn't really thought about it quite like that. Thank you.

Julie

Wednesday 30th of January 2019

I was diagnosed with ovarian cancer stage 3 a little over a year ago followed by successful surgery and treatment (another term I am uncomfortable with...sounds so vague, whitewashed and creepy to me). It’s way too soon for me to feel like a survivor, more like a “lost survivor” -Haha. Anyway, I am trying to move forward as best as I can. I do wish there would be more of an emphasis on ovarian cancer research. I was encouraged to hear on the news this past week about a new treatment geared toward all cancers, coming out of Israel. Thank you for your blog, you have been a comforting companion over these past few months.