Why Words Matter
Did Robin Gibb lose his battle with cancer?
Last week on their blogs, both AnneMarie and Lori wrote about the power of words and indeed this is a subject I have written about myself in the past. I believe it is important that we raise awareness of the need for more sensitivity to how words, phrases and labels matter, but despite our raising our voices, it seems this message still isn’t getting through.
In a recent newspaper article by British journalist and broadcaster, Jenni Murray, she bemoans the bellicose language used to announce Bee Gee, Robin Gibb’s death.
It was sad to hear of his death. But at the same time it is infuriating to read and hear, over and over.. that he “has lost his battle with cancer..I’m at a loss to know why, despite a number of us who’ve been through the dread diagnosis and subsequent treatment pointing out that such pugilistic terminology is entirely inappropriate, we continue to be given the impression that death from cancer is somehow an indication of failure to have the moral fibre to fight and defeat it.
Jenni Murray was diagnosed with breast cancer a few years ago and goes on to say, “supposing I’d crowed about my “victory” or put my survival down to the power of positive thought. What impact would that have had on the young women who had a more virulent strain and knew they were dying? ”
It was interesting to read the comments from readers, many of whom agreed with Murray. (although inevitably there were those who disagreed vehemently).
Mightyatom9 writes:
Whenever cancer is mentioned in the media, I know, with a sinking heart, that the words battle, fight and being positive cannot be far behind. Cancer is an illness, not a military campaign – some people get better, others do not.
For me, the expectation that I should always be positive was a terrible burden. I felt guilty and inadequate that I couldn’t be brave and I used to think, if the cancer came back, people would blame me because I hadn’t been positive enough. Can I really be the only person to have felt this way? I must be, if all I read and hear in the media are anything to go by.
No-one is more surprised than I that I am still here 13 years after being treated for a very aggressive Stage II cancer. I take no credit for it – my survival is down to my good fortune and superb medical care
And kmlydon makes the point
Jenni Murray’s piece says something that desperately needs saying. The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too. A much better way to conceptualize cancer is to speak of “living with it,” for as well and as long as one can…why don’t we all agree to say that a person died after living with cancer for X amount of time?
Dr Don Dizon writing this week in ASCO Connection, the professional networking site for ASCO’s worldwide oncology community told us how he has become more ” sensitive to words and phrases, particularly when they are used in reference to patients, treatment, and circumstances surrounding recurrent disease…we as an oncology community must commit to a concerted effort to monitor the language of oncology. Words are powerful, and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”
Words matter – do you agree?
Absolutely 100% agree Marie. Death is not ‘the enemy’ and people who die have not ‘failed’. I don’t understand why some people die earlier than others. It is a mystery. But it is so wrong that people who live with cancer should be expected to be positive all the time. No-one is positive all the time. Treatment sucks and people should be allowed to say that without judgement. Robin Gibbs lived his life well. He gave us beautiful music and songs. Let’s remember him for that.
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Words do matter, and as a cheesy love song says, words get in the way! The battle metaphor for cancer has always bugged me, and the idea that dying from cancer means losing the battle is the worst, because the logical conclusion to be drawn in that scenario is that if the patient lost, then the cancer won. I don’t like it, and I’m glad you’re speaking out against it.
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I was surprised to read the negative comments on Jenni Murray’s excellent article – I thought she had made her points very well.
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Words matter a great deal and when we are talking about a serious illness, perhaps they matter even more. One of my biggest pet peeves surrounding cancer stuff is the too often inferred message that one must strive to maintain a positive attitude at all times no matter what. A positive attitude did not save my mom. A positive attitude did not save my friend Rachel.This topic really gets me going. Here’s a link to a post I wrote a while back in case anyone is interested. Thank you, Marie, for this post.
http://nancyspoint.com/having-an-attitude-about-attitude/
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Thanks Nancy and I remember reading this post when you first wrote it and I am looking forward to reading it again now that you have left us the link
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Bravo to you all for saying what really does need to be said!
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The word Postive was never used before I was diagonised with cancer. If i had a euro for every time it was and still said to me I would be sooooo rich! Yes it is good to be postive but sometimes we need to deal with the, dare I say it, negative. Words are so important and the way they are used. Sometimes silence is golden! Your so right Maritne we will always have Robin Gibb class songs.
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It’s all about balance Mona and being true to ourselves!
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Agree with that word Balance I guess our friends or people want to say somrthing nice and their intentions are good.
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Oh yes, words matter very much!
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Marie:
Words definitely matter. We all make mistakes and can say things that hurt others, but empathy and sensitivity go a long way toward minimizing the pain. Thanks for a wonderful post.
Survival > Existence,
Debbie
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YES I agree, though I have to admit what MOST riles me up is “she failed the clinical trial”…as if it were a history test for which “she” didn’t study! What frustrates me, even in this article, is the ongoing attempt to insist that the metaphor needs to be changed FROM one thing TO another. I respect that so many are exhausted and angry about war metaphors. Where is that mutual respect for those who are searching for their inner warrior?
YES words matter…but so does attitude. I’d love to see more acceptance of EVERYONE’S place in this journey.
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Ooh that is such a good point Lori about the pressure to change from one thing to another – well said!
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I admit to having somewhat ambivalent feelings towards the positive self talk brigade. While I can see the benefits of maintaining a positive attitude in life, I also see how for many it can quickly turn into the “tyranny of positive thinking” as you have pointed out here many times Marie
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What a sense of relief I feel reading this and all the comments – it has really helped me feel less of a failure for not thinking positively through my cancer diagnosis
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Great post and comments. I agree that there is pressure on cancer survivors to feel and act positive a lot and sometimes the pressure is so overwhelming.
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Thank you for this wonderful post, Marie.
I wholeheartedly agree that words matter, despite the “sticks and stones may break my bones, but words will never harm me” rhyme. When we’re feeling vulnerable, we may not have the same resolve as we would normally. It’s not good enough to simply say “words can hurt”. It’s important to be sensitive to the situation, and to use words carefully, to avoid hurting someone who is already hurting – whether from cancer or from some other source.
I, too, get fed up with the concept that living with cancer is a “battle”, and that if you die, you “lost the battle”. I think kmlydon has the right idea. As someone who has been in denial for a long time, even I have started to think of myself as “living with cancer” – and I intend to continue living with it for as long as possible!
How many films have I watched, where one of the main characters is diagnosed with cancer – and it’s a foregone conclusion that they are going to die before the end of the film? I think we need more positive images. We need to celebrate those who are living fulfilling lives in spite of having cancer – so that the general population don’t automatically equate cancer with death.
We all die, eventually – but when someone dies of old age, you never hear anyone say that they lost their battle with life!
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Hi Julia..thanks so much for taking the time to leave a comment – especially as the first time it didn’t go through. I appreciate you tried again. I really like when you say “it’s not good enough to simply say “words can hurt”. It’s important to be sensitive to the situation” – this is so very true.
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Thank you so much for this post and all your comments – it has been incredibly helpful and liberating for me to read them
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So good to hear this
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One of the words often used in the media to describe someone with cancer is a “cancer victim” or someone who is “suffering from cancer”. I have breast cancer and I hate those terms because I don’t buy into the victim mentatlity
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Our attitude about cancer treats survival as though it were an act of will, rather than a complex medical process, and idealizes constant struggle.
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Society certainly idealizes the strong cancer survivor—the one that who made it was able to make it through through with the power of positive thinking. In doing so, we first, suggest optimism can beat cancer, and second, leave those struggling unsuccessfully against cancer without legitimate support.
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Very well put James and so true about societal expectations for the cancer patient to be seen to be brave, battling strong – take your pick…
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I prefer to use the term cancer journey, rather than battle. While acknowledging that battle may suit some, the analogy of being on a journey, with all its twists and turns, uphills and downhills, crossroads and u-turns is one I am most comfortable with. On a journey there are no winners or losers, it is a passage or progress from one stage to another and however you feel on that journey is the way you are feeling. There is no right or wrong way to feel or to be. There is no pre-written script for the cancer journey and you are free to write your own script based on your own story
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Well, Lily, you won’t get any argument from me on the term “journey” – it’s the name of my blog after all 🙂
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Siddhartha Mukherjee, Pulitzer prize-winning author of The Emperor of All Maladies, has clearly stated that ‘A positive attitude does not cure cancer, any more than a negative one causes it’ I like to quote this at folks who tell me to look at the bright side and think postively to “beat” cancer
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It’s a terrific book William. I finally got around to reading it and was very impressed.
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I like to quote Gayle Sulik, author of Pink Ribbon Blues.
who says that “Telling an authentic story about an illness that is heavily laden with cultural expectations about femininity, normalcy, and triumphant survivorship requires a new way of thinking and speaking.
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Love that quote Catherine! Thanks for sharing it with us.
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There’s no scientific proof that a positive attitude gives you an advantage in cancer treatment or improves your chance of being cured but what a positive attitude can do is improve the quality of your life during cancer treatment and beyond. You may be more likely to stay active, maintain ties to family and friends, and continue social activities. In turn, this may enhance your feeling of well-being and help you find the strength to deal with your cancer.
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Marie, did you read Tony Bates column in the Irish Times this week? He wrote that “this 21st-century emphasis on “thinking positive” makes me uneasy. Maybe it’s because people who advocate it speak about it as though it were the simple and obvious solution to all of our woes, as we face the complex problems and emotional upheavals that we encounter every single day. Sometimes it feels like survival depends on choosing to see life through one of two lenses: we must focus on life’s positive energies and risk being seen as naive optimists, or we must focus on the harsh reality that things do go wrong and people do get hurt, and become defensive pessimists..
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I did read it Patsy thanks for pointing it out. I do like his writing and did you know that he has recently reprinted his book on depression? It’s a very good read too.
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Marie,
Clearly, this is a “hot topic” and it’s unfortunate that those who persist in using language that can be hurtful aren’t entertaining the points of view of those of us whose lives they are describing. I know some are comforted by the “war metaphors” when they are sitting in a chemo chair doing some form of guided imagery that the poison being dripped into their veins is an army on a search and destroy mission. Personally, I just looked at my own chemo as something I simply had to deal with in order to give myself the best shot at (not) dealing with a recurrence. It was poison, it caused issues that I still deal with each and every day and I HOPE it served its intended purpose.
Apparently, this “words” thing is a running theme with me. I knew I quoted Christopher Hitchens in a previous entry….. Had to go find it….. His words:
“You’re watching poison go into your arm. People saying you should be struggling (against), battling cancer. You’re not battling it. You couldn’t be living a more passive moment than that. You feel as if you’re drowning in powerlessness.” —-Christopher Hitchens
The rest of that entry is here….. I titled it “The Lingo” and I “wrote” an obituary, not in my usual wise cracking fashion, but using real language.
http://chemo-brain.blogspot.com/2012/01/lingo.html
Thanks for sharing my “words” with your readers once again. Dressing things up so they are more palatable is truly dishonoring the suffering of those whose bodies succumb to cancer.
Excellent discussion!
AnneMarie
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Words do have impact. I like the pacifism of this scripture: let’s lay down our arms of war and turn our swords into ploughshares. My addition is that the ploughshares reap a harvest of compassion and peace. Let’s choose our words (and colors) carefully and respectfully. xx
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To say there is no battle ignores the emotional strain and focus we go through as those diagnosed with cancer – we battle with the diagnosis, we battle with our identities after diagnosis, we battle to find courage and strength to get treatment (or abstain from treatment). Acceptance can come, but I’ve never met anyone who hasn’t had a struggle in reaching that place.
Mind you, ‘losing the battle’ is an infuriating term to throw around – it almost belittles all the other aspects of that person’s incredible life by associating it with a loss. No one loses – everyone wins the prize, which is the chance to live while we can.
Language is important. Thanks for sharing this point again, Marie.
Catherine
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I don’t have cancer but do have Gastroparesis, another disease that is “battled” and I have to say that the words I’ve read hear have helped me more than all the talk of be strong, keep fighting, etc. When I do have a bad day and can’t do things, I feel as though I am letting everyone down. When I cry from the pain or just the constant being sick, I feel as though I’m not strong enough for everyone else. My husband has held me and cried with me and he too has been told to “be strong”. A caregiver suffers, too. They feel as though they are letting down their loved ones if they can’t be strong all the time. I’ve told him that I don’t expect that of him. I know if he were dealing with a disease, I would cry with him, let him know it’s okay to let it all out on those days you feel the need. He’s said the same to me as we held on to each other at yet another ER visit. Yes, these diseases that our bodies take on can be seen as the enemy that we must fight but it’s our bodies that have to fight the disease, the meds that have to take it on, our job is to try and live our lives to the best of our ability at any given time. WE are not loosing the fight with the disease, our bodies have simply decided that our suffering time is over and we should have the release from the pain that we endure. I know a lot will not agree with me but that’s okay. Each person has their own thoughts, ideas, and feelings and that’s what makes this such a wonderful world. So all of you please enjoy the good days you have, let your body tell you when it needs to rest, or cry, or just yell…it’s not a battle or a war, it’s our lives and we must live them as well as we can given what life has thrown our way.
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I have written a reflection in Fine Black Lines about how difficult it is for patients to be under the burden of unflagging positivity and then, when they are clearly dying, bear the onus of having “failed.”
I wrote a poem following the reflection:
Bed of Nails
if you lay
a blanket of joy
over everything
the spikes keep poking through
perhaps it would be better to
flatten the points
first
(excerpted from Fine Black Lines, copyright 1993, 2003, Lois Tschetter Hjelmstad)
If dying is failing, then we are all going to fail “life” at some point.
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What a wonderful poem Lois – thanks so much for sharing it. I got to say this discussion has been liberating for me! I feel much more confident now and strong in my own beliefs. A thousand thank yous to you Marie and all your readers x
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Marie, this is an excellent post on a controversial use of fighting metaphors to describe cancer. I hate when people say I was victorious over the disease. It was luck that I survived as long as I have. In addition, having a positive attitude doesn’t improve survival. I didn’t have a positive attitude, and I know people who did have such an attitude, but didn’t survive. By the way, for a long time, the Bee Gees have been my very favorite group. I will miss Robin forever, as I have Maurice.
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Very important point, Marie–and an excellent use of language, as usual, to describe it.
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I agree completely. I think you have done a fine job. Something that I would like to point out is that although I truly appreciate all of Dr. Susan Love’s efforts, I wish she would change the name of her organization from “Army of Women” because the word army does continue the “battle” theme.
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Hi Kathleen, thanks for your comment and isn’t it funny, that despite my cringing at battle connations, it never struck me until now that Dr Love’s Army of Women perpetuates the theme…
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