Do you have a favourite quote? A mantra that guides you through the day? Are there certain words or phrases that set your teeth on edge and make your blood boil?
I think we all have language that soothes our soul and language that sets us off because words are powerful. And lemme tell you, today I’m writing about something that grates my soul a little every time I see or hear it.
I’ve spoken about how words shape our reality here and my experience with cancer here. In honour of Cancer Awareness month, I’m bringing these topics together to talk about the language of cancer.
It was 1971 when Nixon signed the National Cancer Act and declared “war on cancer”. By the mid-80s the language had shifted from “cancer victim” (not exactly empowering) to “cancer warrior” (better but as you’ll see, still problematic).
Now we were “battling cancer” and people diagnosed with cancer were “in the fight of their lives.” It’s the stuff of great headlines for sure but every battle has a winner and a loser. And that’s where the problems start.
When the odds are stacked against you it can definitely FEEL like you’re in the fight of your life. But it’s not the clashing swords and battle cries you’d find in an episode of Game of Thrones. It’s subtle, nuanced, and messy. Your sword is chemo, radiation and/or surgery and your battle cry is a deep steadying breath.
- Cancer is getting used to the smell of antiseptic and rubbing alcohol in cool white hospital rooms while trying to maintain your dignity in a paper-thin backless robe.
- It’s sharing knowing glances and shy smiles of connection with others in crowded waiting rooms on a similar journey.
- It’s the crippling side effects of treatment and people telling you, “don’t worry your hair will grow back.”
- It’s the uncomfortable silence of friends who don’t know how to walk with you through the pain and instead fade into the background of your life.
- It’s waiting with bated breath for test results that will tell you if the treatment is working – or not.
- It’s survivor’s guilt, support groups, and fundraising walks.
- It’s once favourite foods that now send your stomach into knots.
- It’s dire predictions from solemn doctors and cheerful false optimism from family members in denial – all in the same day.
- It’s the anxiety of wondering if cancer will come back, where it will show up or when.
But it’s not a war.
It’s life. Messy and beautiful. Agonizing and hopeful. With splashes of joy through the toughest challenges. But it’s not a war.
Many people diagnosed with cancer (almost half in some studies) don’t feel like the war metaphors used by the media, friends, and even doctors reflect their experience with cancer. I know it doesn’t resonate with me. My experience of cancer mirrors what Xeni Jardin says in her article, “I am no warrior. I just showed up to my medical appointments, did what I was told and lived as best I could.”
For me, at age 7, I didn’t feel like I did anything to “beat cancer”. I didn’t feel like I earned the title of “warrior” or “survivor”.
Cancer isn’t a game of winners and losers.
The fight club language is found everywhere though. In 2017 SickKids Hospital (where I received cancer treatment) launched its “Vs” marketing campaign asking the public to join the fight against childhood illnesses with the goal of raising $1.3 billion. It was hugely successful reaching 75% of its goal in the first 2 years. I was super revved up when I saw this deep bass hip-hop soundtracked ad, especially the kid screaming at the end with the tiger…C’MON…how cool is that?! I wish I had a tiger when I was there!
It was emotionally charged in the best way because it was showing everyone from the doctors to the families binding together to ‘fight’ the disease. It was the direct opposite narrative of the solemn angelic soundtracked ad showing various bald cancer kids standing alone with their big pleading eyes asking you to help save them by opening your wallets and donating today. But after my charged “Vs” emotional waves settled, something didn’t sit right. I realized that although effective, this marketing campaign furthered this war narrative and I couldn’t help but think of those families that had to watch this ad knowing their child ‘lost their fight’. Does that mean cancer ‘won’ the fight? Cancer isn’t a game of winners and losers. Period. I still struggle with my view on “Vs” but I’ve kinda settled in the same space as Anthony (a man living with cancer) who says, “…if it funds research and early detection, I can live with it.”
The battlefield language of cancer sounds a lot like the “be strong” myth of grief to me. We place cancer patients on this pedestal of courage from the moment of diagnosis at precisely the time when they feel anything BUT strong. Which sets them up for guilt and shame when they feel weak or exhausted or angry or sad. It forces them to ‘put on a brave face’ even with those who love them most because they’re scared of disappointing them.
This language implies that if you fight hard enough or long enough you’ll “win the war” as if it’s all up to you and your positive attitude. When in truth there are so many other factors that come into play.
Speaking of that positive attitude…
The false positivity that ignores our real feelings can be harmful. It’s like we’re prescribing how we want cancer patients to feel (courageous) because we’re uncomfortable with all the real, messy, complicated emotions that surface. That I need YOU to be strong for ME (because I’m really friggin’ scared you’re going to die).
Let me be clear, this does NOT exclude the power of a healthy mindset vs. victim mentality. I’ve definitely seen how visualizing positive outcomes, getting rid of toxic things in your life (including toxic partners!) can ‘heal’ you. I myself was getting pre-cancerous cells on my cervix when I was in a high-stress job. I quit the job and the cells went away. So I KNOW there’s a connection.
But feeling scared, worried, angry or sad are all 100% normal when you’re faced with a challenging diagnosis. Just because you feel them doesn’t mean you’re jeopardizing your outcome. In fact, I think pushing these emotions aside so you can “soldier on” is far more damaging than allowing them to move through you.
When we “win”
Those who “conquer” cancer are labelled “survivors”. And with the “survivor” badge comes an unspoken expectation to become a perfect or perhaps superhuman person. There’s pressure to live the most amazing life full of adventure and extraordinary accomplishment because you have a second chance. There’s no room for wanting a simple life shared with friends and family and, fingers crossed, a job you love. If you’re looking for a permission slip for an “ordinary” life, I’m here to write that for you…It’s okay if that’s what you want. It’s enough.
I’ve “beaten cancer” and as a result, I’m at a higher risk for secondary cancers. Others have disfigurements from treatment “battle scars” that will last forever. The gnawing anxiety and scars don’t leave you feeling like you’ve “won” or that now you’re some kind of hero who deserves a kickass cape and matching boots.
It’s months or years of devoting all your energy to waging war with your own body. When that’s your focus, there’s no space left to figure out how to live with cancer. There’s also an implication that those in remission have somehow done more than those who aren’t. They “fought harder”. Which means death becomes synonymous with failure.
When your only choice is to “keep fighting” it can make the choice to end treatments and live comfortably with what time you’ve got left nearly impossible because it’s seen as cowardly instead of courageous. As if cancer isn’t hard enough, now you feel like you’re disappointing everyone around you.
I want you to know that death is not failure. Death is a part of life. It’s what happens to every one of us whether we die from cancer or something else. Let me say it again for those in the back, death is not failure.
When we “lose”
When we say “they lost their fight with cancer” we see people who die from cancer as “losers” and it can open the gate for judgement and criticism. How are they ‘losers’? Cancer is pretty damn random. But this is what we’ve been taught, we try to rationalize things and use our heads to heal our hearts. I’ve asked myself “why me?” TONS of times and I know lots of other cancer patients have also asked themselves the same question. The only answer I can come up with is “why NOT me?”
The language follows us to the grave. Here are a few examples from real obituaries.
- “…a tough woman who put up a fight and never let cancer take her spirit.”
- “…following a five year battle with metastatic breast cancer”
- Alex Trebek – died November 8, 2020, at the age of 80, following a long battle with pancreatic cancer.
- “Ebert and Gene Siskel co-hosted the iconic review show “Siskel and Ebert At The Movies” until Siskel’s death in 1999 after a battle with a brain tumour.”
Cancer is not a defining characteristic. It’s a disease. One event in a lifetime of love and joy, friendship and contribution.
Instead, we could simply state the facts.
- “She died of breast cancer.”
- “The last hand in the “two thumbs up” film critic team, Roger Ebert, died Thursday, two days after revealing cancer returned to his body.”
- “Until the last, David Bowie, who has died of cancer, was still capable of springing surprises.”
THE FINAL NAIL IN THE “WAR WITH CANCER” COFFIN
Wassersug co-authored a 2015 essay in The Guardian about ending the use of war language in cancer. He and psychologist David Hauser, PhD, of Queen’s University in Kingston, Ontario, who has researched the impact of metaphors on thinking said, “When people label cancer as an enemy, preventative behaviours that involve limitation and restraint — such as eating less red meat and not smoking — get disregarded or dismissed because fighting involves little self-control.”
Turns out the self-control required for prevention doesn’t jive with the rhetoric of fighting for your life. If the language of war is getting in the way of prevention then maybe it’s time for a rewrite.
Let’s approach cancer with a blend of hope, acceptance, informed decision-making, and a plan. Instead of battling our bodies let’s talk about living with cancer for as long and as well as we can.
Let’s leave the emotionally charged language to the marketers.
I agree with Danielle LaPorte who said “Facing facts is liberating (even though it can be wrenching) and with that truth comes a major power surge.”
When you’re talking to a loved one who has cancer notice the language they use. Do they feel empowered by the war on cancer language? Or do they avoid it? Do they keep it simple and factual? Mirroring their metaphors will show you care and you’re listening.
Join me on Instagram let’s keep talking about the language we use, the grief we share, and how we can best support ourselves, and loved ones, living with cancer.