Wednesday, October 12, 2016

October 12,2016 Chat - Warrior? Fighter? The Words we use...

Tonight's chat topic was Warrior?Fighter? The words we use... . We welcomed our regular #gyncsm physicians, patients, those who had been diagnosed with cancer and caregivers as well as those from other Twitter cancer and chronic disease communities. Forty-four participants in all  created over 2 million impressions during the hour chat. For more chat analytics please click here.

Below you will find tonight's topic questions as well as sample answers. You may find a transcript here. Please scroll to the end of the post for Resources.

T1a: What does the term "survivor" mean to you? Do you use it?

  • I usually say "cancer patients and caregivers." People out of treatment and/or in remission don't seem to mind being called pts
  • I like survivor if it means that you are survivor from the moment you're 1st diagnosed. A lot of surveys say survivor but mean NDP
  • Somedays I feel like a survivor, somedays a thriver, somedays a fighter, somedays just overwhelmed. So personal & so dependent.
  • I don't like the survivor label much. Avoid it when I can, but do use it sometimes due to lack of better word
  • My son's vocabulary quiz "To survive is to remain alive, even after great difficulties"
  • I think that the term survivor can be overwhelming for some patients - can make them feel like a failure if they recur
  • That's the term I always use. It has such a wide definition it seems to encompass all my patients.

T1b: What terms other than "survivor" do you use - for yourself or others?

  • On good days... "bad ass" *grin* RT : T1b: What terms other than "survivor" do you use - for yourself or others?
  • Cancer Experienced - I could go for that
  • some use thriver
  • Survivor replaced the victim language. So it is MUCH better than that!
  • There is always "person". We are so much more than cancer "survivors"
  • I say I'm living with cancer. I want to educate people about chronic cancer. Also I'm a lover not a fighter by nature 

T2: Why are war analogies so often used to describe a cancer diagnosis/treatment? Do you use battle/fighter in conversation? 

  •  I loathe the war metaphors.
  • As a marketer / former nonprofit person I purposely avoid war/battle. Though fundraisers will tell you those get the money.
  • Hearing it said someone lost her battle to cancer, is like fingernails on a chalkboard to me. Hate that.
  • The war analogies work for some - to "fire them up" - but for many it can feel like a failure if you frame it as a WIN/LOSE
  • War metaphors, we picture ourselves standing shoulder to shoulder. Survivor image is Robinson Crusoe or someone in a lifeboat.
  • it especially saddens me that the war language makes hospice or even palliative care "giving up"
T3: What words do you use to describe your experience with cancer? How do you feel about calling it a journey or quest?

  • going with Cancer Experience again
  • I think journey can be good because it gives the idea of a beginning and an end - not win or lose
  • I never use journey
  • It has been a journey for me – with bumps and detours and flat tires and a great appreciation for things - the amazing views
  • both cancer Journey and cancer Experience seem to honor individual differences
  • a trek? maybe it needs its own term - isn't there a special term for those who climb Mt. Everest?
  • I say my cancer journey, experience or mostly my life with cancer (I think that started the 3rd time I got sick).
  • There definitely needs to be a verbal space for those who are living with metastatic disease, with cancer as a chronic illness.
  • I love (& hate) this tension between need for individual words vs. research needing consistent labels 

T4: What cancer terms or labels do you have a negative reaction to and why? 

  • Victim, sufferer, lost the battle - anything that makes the person in the situation sound downtrodden
  • The lost her/his battle to cancer. One of my top cancer language pet peeves. Insulting (IMO)
  • Battlefield analogies. Victim. Man I hate those
  • I try to avoid saying "your" cancer to a patient, instead say "the" cancer when talking about disease status
  • I cringe at Victim.
  • I am also a big hater of the words Prevent and Prevention. What we can do is reduce risk. Risk reduction
  • the lost/battle thing is more obvious when you think about calling someone a Loser
  • And don't get me started on the cancer is a gift thing

T5: What would you like to see from the media and cancer groups when it comes to the words we use to talk about cancer?

  • Just deeper understanding in general. Many terms are very superficial or show misunderstanding.
  • when someone dies, just say it. Died from colon cancer. or whatever. Truth telling. Plain & simple
  • Could cancer groups be more proactive w/ media to start changing way we speak about cancer? AFSP very active w/ media & suicide
  • Take cue from person with cancer. Use words she/he seems to like. Ask if certain words make them uncomfortable
  • Media - be responsible when reporting celebrity cancer news - whether deaths, remission, risk-reduction. Take some time.
  • Cancer groups - Think twice about battle terms and be sure you aren't excluding those who may need you most
  • few journalists specialize in medical reporting- if interviews are not quoted, risk to misinterpret information
  • Understanding how someone finds strength from life-threatening challenges provides insight on empathethic language
  • I loathe the "silver bullet" language - cancer is so many different diseases. One success does not equal a cure for all 

Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at .

We look forward to see you next month on Wednesday , November 9, 2016 as we chat about Your Health Care Team Members. 

Dee Sparacio
Co-founder #gyncsm


Andrew McDonald: The war of words about cancer - BMJ

Marie Ennis-O'Connor: Mind Your Language: Why Words Matter - Dr. Brian Stork blog
Susan Gubar: Not a Cancer Survivor - NYT

Nancy Stordahl: Nine Cancer Language Traps - Nancy's Point blog
Jen Sotham: The Language of Helping a Loved One With Cancer - Cure
Dee Sparacio: The Words I Use - WomenofTeal blog

Blog | Why I Don't Like the Phrase Cancer Survivor

Blog | I did not fight cancer

No comments:

Post a Comment