Let’s Talk About Labels

It seems as though we are obsessed with slapping a label on things associated with illnesses. These labels, regardless of stage, can be isolating to some extent, even off-putting. Other people closely identify with them.

I will be the first person to tell you that cancer is difficult. One size does not fit all, and living through it can fundamentally change a person. While it makes perfect sense to want to celebrate being done with it all and putting it in the review mirror, is it essential to identify with a specific label that constantly reminds you of that experience? And what happens if cancer returns? Does “survivor” still resonate?

So, when did this start, and why has it changed over the years to incorporate a whole month and a specific day dedicated to survivors & survivorship?

To Be Or Not To Be

The term “cancer survivor” was introduced by a US physician Fitzhugh Mullan which appeared in New England Journal of Medicine in 1985. He suggested that survivors included people from diagnosis to the end of life. Distinguishing them from others with a worse prognosis.

Margaret I Fitch, RN, Ph.D, Editor in Chief, Canadian Oncology Nursing Journal wrote an article entitled “Take Care When you use the word survivor in 2019. Fitch acknowledges that there are several ways in which to define the word survivor and that none are universally accepted.

“The word itself likely grew out of the declaration of ‘the war on cancer’, and is connected with a notion of ‘winning a battle’

Margaret Fitch, RN, PhD

Additionally, a small study was conducted in the UK focused on 20 young women (between 18 & 44 yrs of age) that were 1 – 10 yrs post diagnosis. The study acknowledges 23 previous studies that explored how individuals who have had cancer view the word survivor.

The conclusion of this particular study was not unlike the others in that 

“…not all individuals living beyond cancer identify as survivors and that this language may indeed be alienating and harmful for the well‐being of many”

Let’s Try Something New

It’s clear the term survivor does not resonate with everyone who has had a lived experience with cancer. Even those who are no evidence of disease years after completing successful treatment. So, why is it still used? Why can’t we adopt something new that doesn’t alienate anyone while being truthful to everyone’s experiences?

I challenge everyone to stop using survivor and instead say: “lived with” or “living with” cancer. Cancer isn’t who we were or what we are. It’s something that, for whatever reason, happened. W are all doing the best we can to live through or with it.

How do you feel about the term survivor? Let me know in the comments.

5 thoughts on “Let’s Talk About Labels

  1. Carole Guiney August 31, 2022 / 5:13 pm

    I dunno…. So I’m stage 4 (breast cancer, lung mets) from the get go in 2015, therefore happy with the phrase ‘living with’. I never had any invasive surgery, chemo yes, radiotherapy etc no. Anyway – I do know that some cancer patients with stage ‘less than 4’ have had horribly invasive surgeries & treatments which can eventually lead to them being free of their cancer. In such cases I can understand how they see themselves as ‘survivors’, and I don’t actually dispute that.
    My favourite disliked label is that I am considered to be fighting cancer. I’m not! I never was! The drugs are working to date and I’m still here. I’d sooner be bestest buddies with my cancer seeing as I’m stuck with it, would rather not pick a fight on it, aggravate it.

    Btw, love your blog, keep up the great work 🙂

    • stickit2stage4 August 31, 2022 / 5:19 pm

      First, thank you for the kind words. I understand where you’re coming from when referring to earlier stage folks but what happens IF they become metastatic? I also (for me) dislike the word “thriver” – some days I feel like I’m barely living never mind thriving 😂 – IMO – we are all living the best we can regardless of what we may want to call ourselves. 💙

      • Carole Guiney August 31, 2022 / 6:02 pm

        I think I was about 4 years in before I realised that people who are cancer free live in absolute horror of its return. To the point of not wishing to acknowledge it can happen. I was mystified by a friend who, at worst, had a lumpectomy and is absolutely fine now, but was terrified to the point of depressed that she may one day be me…. (Oy!!)

        I do think you’re spot on about the use of bad labels with cancer. Fighting, winning, battling… I am so not any type of budding hero!
        ‘Thriver’…. Sounds like the bunny that didn’t make the cut in Bambi 🙂

  2. grandmaris August 30, 2022 / 10:04 am

    For me survivor has a negative feel; if I say I am “surviving”, it feels like I am just barely getting by. I personally am Living with Cancer; have been since 1989 and I am doing it well!! (Most days).

    • stickit2stage4 August 30, 2022 / 10:08 am

      Same. In my opinion – living/lived with has a more positive connotation. Not that I’m about warm and fuzzies when it comes to cancer but it’s also truthful & factual. I hope you have decades more of living well!

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