Please don’t call me a survivor

Survivor: a person who survives, especially a person remaining alive after an event in which others have died.

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Today is National Cancer Survivor’s Day. I’m happy for all that find reason to celebrate but this particular person with cancer won’t be in attendance.

Being (still) alive is both swell and notable, but I am going to be a party pooper due to some ongoing issues with the terminology associated with today’s celebration.

The distinction between a survivor and a non-survivor not only disregards, it is also somewhat disrespectful to everyone who really wanted to stay at this party but could not; the many who cancer has forcibly taken. Labeling someone a survivor seems to imply that remaining alive is merit based when in fact, so much of who gets to stay and who has to go is attributed simply to chance.

Secondly, I don’t care for the been there/done that feel of a noun such as survivor. My relationship to cancer is not and likely never will be past tense. It may look easy, but this staying alive stuff is hard, hard work. It’s a full time job and I am laboringย all the time; there are no days off when you have terminal cancer. Therefore, I prefer an active word–a verb. I am surviving cancer.

Words have power. I feel that survivor is meant both to honor (sort of the anti-victim) and to comfort–to help those who are labeled survivors to feel both safe and victorious. I appreciate the intention but honestly, I have no use for either recognition or a false sense of security while fighting my disease. What I do require is knowledge, courage, strength, hope, love and increased funding for cancer research. These are tangible tools that I can actually utilize as I go about the real work of staying alive.

37 responses to “Please don’t call me a survivor

  1. I love that you’ve written this. I really don’t like the term either. It diminishes those we’ve loved and lost along the way, and it implies that those of us that are still here did something beyond having more luck. I tend to use the term cancer or lung cancer veteran. It’s part of my general life experience, but it is not the entirety of who I am or who I want to be.

    I love you dear. Keep writing, keep breathing, and keep being so beautifully loud!

    Jim

    • Jim, I love that you love (and notice—haha) that I am loud. And I’m not going to stop as long as I think it can do some good. xo

      Linnea

  2. You said it well. I hate being called a survivor and even more a hero.

    • Yeah, hero gets under my skin too and I’m glad you said something. Again, well intended but feels absolutely patronizing.

      Linnea

  3. Thank you. I met a fellow LC patient that expressed his dislike for being called a “survivor”. He felt that it made those patients that were not survivors, appear that they did not try hard enough. He was right. We are all battling an enemy with cancer, and some will be lost, despite all of their efforts beat this enemy. Such is war and we must honor all.

    • Yes, such is war. Those who have been taken also fought like hell and anyone who is surviving should do so with a great deal of gratitude and humility.

      Linnea

  4. Nicely said. I also do not feel like a survivor even after 10 years of battling this disease. I feel like a fighter who continues to do everything possible to have a good quality of life and not give in to the toll it all takes on my body. I am quick to give any and all survivors high praise…..this cancer beast comes in many forms and those that survive deserve to celebrate and be celebrated. But when the fight continues each and every day – is this medicine still working, what will the this scan and that scan show, how are my blood levels, what is the next drug approved. etc. – I am far from surviving, but I am living. And I feel blessed and thankful each day for my family and friends who give my life meaning. And you, Linnea, are counted as one of those friends. Thank you for your blogs that so often touch on many of the feelings I have encountered on this journey. We learn so much from each other.

    • You are a fighter Roni and I’m right there beside you. That is the one place where I use the word honor—I am honored to know all the people who have come into my life because of cancer.

      xo Linnea

  5. Hi Linnea,
    May I say what a beautiful writer you are! I love to learn from others and the word survivor is a big word. Every Nov., my surgeon, Dr. McKenna, has a beautiful three hour gathering for Lung Cancer Survivors. There is a lunch, professional speakers from immunologists, surgeons, oncologists, researchers to lung cancer “survivors” speaking. Presentations are also a big part of this day. Q and A is our opportunity to ask any thing on our minds. This day is a celebration full of love and learning. I often speak and make videos or Power Point presentation of what I am working on for my next year in regards to fund raising for lung cancer. I feel incredibly lucky to be alive and my focus is to do everything in my power to work for all lung cancer patients. One of my projects involved creating a logo called “Kiss A Survivor.” I then made hundreds of T-Shirts, sold them, gave them away, with all proceeds going to research. I viewed my logo as a loving gesture for all lung cancer people at any stage of their disease. The intention is to show love and support. Both of my parents died from lung cancer. I understand some of the battles and pain from an observers point of view when the disease nears the end. We are all at different stages and places. Thank you Linnea for helping me to understand your point of view. Also, thank you to the others who commented. I have more to think about.

    Linda

    • Linda, I don’t wish to diminish any positive efforts such as yours—I am representing my own viewpoint. I thank you for being open minded enough to consider it. In cancer, just as in life, there will be differences in opinion.

      Linnea

  6. I used to feel like you do Linnea, but after 5 years out I figure, “what the f**k” I might as well commemorate my past five years. I don’t celebrate anything outwardly but internally I take a moment and pause….” I am still here you rotten disease….I will keep up the good fight.” I hope it doesn’t diminish any other person’s challenges but at the moment I am hanging in there and it feels OK.

    Always love,
    Sherpa

  7. Fantastic , absolutely agree with you!
    You are amazing , u always seem to say what I feel !
    Jane from Cleveland patient UH , Clev and MGH Boston .

  8. Anita Figueras

    Linnea, very thoughtfully expressed in well chosen words. Count me in as a person who agrees that words matter.

    I feel like a fraud if I use that word, given my unruly cancer. The best I can say when someone calls me that is “I’m working on it”. It also struck me as an ironic designation of a day when a friend died early in the morning from complications from graft v host disease resulting from a bone marrow transplant (which she had as I was in my first months of cancer treatment). She had a dangerous precancerous blood disorder and fully expected the transplant to cure her. We talked about the disparity in our situations, with my clear label of terminal disease. Yet she is dead and I soldier on in great uncertainty.

    Still I went to the local cancer center dinner yesterday with my husband and a dear friend who house sits and cares for our pets so that we can travel to Roswell and to see our family. It was a way for me to honor Bob’s friendship, to include him. It was good for my husband, too. I think he needs to hear other people’s stories of hope at least as much as I do.

    • You are no fraud, my dear. And I am so sorry about your friend. We grab hope in any way we can.

      Linnea

  9. Well said. When someone refers to me as a Survivor I take this word as I’ve overcome cancer which I have not. My cancer is with me everyday. I’m fighting & surviving. Thanks Linnea.

    • I think the word survivor sometimes helps others more than it helps us, particularly those of us who remain in the thick of the battle. Fighting and surviving works for me.

      Linnea

  10. Amen sista!

  11. Linnea, these are powerful distinctions that I had not considered. Thank you for always helping to open the dialogue and awareness.

  12. When I attended my first Relay for Life 3 months after diagnosis, I felt like a fraud wearing the sash that said survivor. At the 5th Relay it was a bit more comfortable. What you wrote resonates with me. I’ve also struggled with the terminology ‘fighting’ cancer. Sometimes all I can manage is to hang in by a thread. I’m so weak that it’s not my fight that helps, but rather my rest. And when people die, I hear they’ve lost the fight, or worse: given up the fight. All in all, I’m just thankful for my life – and I’m thankful for yours. It is an encouragement to see you surviving!

    • I think we all need to choose the words that work for us and I am simply suggesting what works for me. I have never been too interested in winning or losing as concepts—as I always felt sad for the loser but happy for the winner. I would rather that it all be win/win. When someone dies I don’t feel as if they have lost, but rather, that the time for fighting has come to an end. It is a subtle but important difference. And for me, fighting is an operative word, which signifies the effort it takes to stay. That part of my battle I do want acknowledged, and again, that may be why I chafe against a term that seems to suggest I have arrived. This journey isn’t over until it’s over.

      Linnea

  13. Well said! I’m the daughter of a mother living with an univited guest in her chest. She’s not a fan of survivor, surviving is good, she’ll accept that. Tell her she’s fighting and she’ll ask what happens when I die, did I lose?

    I say my mother is living with lung cancer for the last 9 years, somedays are good somedays aren’t so good, she and the univited guest have come to some workable arrangement where it stopped all activity and she is doing her best to keep on keeping on despite what the treatment did to her.

    • Beth, in my comment above I explain why I too reject the concept that dying is losing the battle, even though I embrace fighting words in other respects. Honestly, no one ‘wins’ a war. We just all do the best we can to protect what is meaningful to us. Hugs to you and your mom.

      Linnea

  14. Carole S. Baker

    Linnea- this post was beautifully written; you expressed exactly how I feel, having lived with stage IV lung cancer for more than 5 years. Although I am grateful to have beaten the odds so far, I am not a “survivor”, or a “hero”, and every day is a struggle. So thank you!

    • Thank you Carole. It is not a perspective everyone shares, but for some of us, these are not the words we’d use to describe our experience. Hang in there.

      xo Linnea

  15. Linnea,

    You are fantastic, a gift to humanity. I have been lucky enough to meet you a few times, either at a conference or waiting for a scan. You never cease to amaze me and bring me to tears to my eyes with your profound words of wisdom.
    Thank you, thank you, thank you!!!!!!!

    Cheryl

  16. you are perfectly right about the importance of words and language.
    Not crazy about the term survivor either. But whatever keeps you going is what’s important, Surviving is a probably a better term, Lets leave the fighting to the medics and try and live as best we can. I like to think I’m living with lung cancer (an unwelcome companion but always there). Best wishes to you all

    • I agree that it is an individual choice and my viewpoint not meant to be more that a description of how I feel. Anything that gets us through is useful and I would agree that we are living with lung cancer. Emphasis on living ๐Ÿ™‚

      Linnea

  17. Dear Linnea,

    Very well said. You continue to inspire us all.

    Have a Great Day

    Ed Shanley

  18. Hi Linnea – as always a very interesting post. The older I get the more I realize how powerful words are. I also have a problem with fighting words when referring to someone’s journey with cancer. As an aside, there was an interesting piece on the CBC News last night about Cuba’s research and drugs associated with lung cancer. It focused on an American travelling through Canada to get to Cuba and buy a chemo drug which seems to have worked for him. I provide a link if you (or any of your followers) are interested.

    http://www.cbc.ca/news/thenational/cuba-s-cutting-edge-pharmaceuticals-1.3622481

    • Thank you Beryl, and I would agree about only now realizing the power of words (and how they can alter experience). Lots of interest in and chatter about that vaccine. I appreciate you providing a link!

      Linnea

  19. Kristen Kimball

    Fine point Linnea. I like the idea of “surviving” … less triumphal sounding. Yet we need to educate, and let people know that lung cancer is not solved by smoke cessation efforts, and that LC strikes anyone. And it seems “Survivor” is the hashtag if the moment, used to show the world that combatting cancer is a worthy goal. Perhaps you can change that word to a more appropriate, more kindly, more honest tag line.

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