It Matters How We Talk About Cancer (Part 1)

Cancer seems to have a particularly ominous reputation.
Hearing the word lead many to automatically think the worst.
Some whisper it, like there’s shame associated with the diagnosis.
Or they substitute the moniker “Big C,” as if saying the word is somehow bad luck.

Maybe it’s not intentional, but such responses send a clear message to the person with cancer: this disease is too heinous to talk about. Which is distressing if you are the person who’s received the diagnosis, and you really need to talk about it.

On the other hand (and probably also unintentional), too often when people do talk about cancer, what they say and the terminology they use can be less than beneficial. Rather than encouraging the person, they instill fear, or feed fear. ("Oh, my uncle died of that cancer." "My sister had that treatment, and she was too sick to work or take care of her kids.")

I’ve lived with this disease, off and on, for nearly 20 years and through three diagnoses. I’ve also talked with others who’ve experienced this disease, and read many more personal accounts. From all this, I’ve compiled these “categories” of unhelpful, even adverse, conversations when it comes to “talking about” cancer. (Which I’m sharing in two parts)

Disclaimer: I’ve been accused of being overly critical of those who “say the wrong thing” to people with cancer. Please know, that is not my intention. I actually want to help all of us be more aware of what we say, so our words won’t be an added burden to our loved ones. 

However, there are phrases and responses that are completely and totally unacceptable. I want to believe those who say these things have good intentions, or don’t know any better. Regardless, I feel an obligation to highlight these unhelpful, insensitive responses.
The truth is: words hurt, so words matter!

I don't want to hurt anyone's feelings by pointing out these less-than-helpful ways to talk about cancer. But know this: if it comes down to a choice, I will always try to prevent more hurt to those who are already in pain. 

1.  Cause and Effect.
Upon learning someone they love has a cancer diagnosis, too many want to find a cause, a reason to explain it. We want to know WHY this happened! So, if someone tells us they have lung cancer, and we immediately ask: “Do you smoke?”

Let’s face it, this inclination makes sense. We like simple, black-and-white explanations.
But such an approach goes deeper, and carries implied judgment. And blame! We’re essentially (probably unknowingly) asking: What did you do wrong? What could you have done differently? Or done better?

The truth is: there probably are…could be… precipitating factors in a cancer diagnosis. If we’d known, some of us with cancer might have prevented it if we’d taken better care of ourselves, if we’d eaten better, if we had not participated in certain risky behavior, if we’d had the good fortune of living in a house without lead paint, or asbestos insulation. Trust me, many of us are already asking those same maddening questions, even beating ourselves up the what-ifs of could have, should have or ought to have done. Insisting on knowing “why?” might be normal, but if you push such discussion, you only add to the guilt and stress already inside us. It doesn’t help when we have to defend past choices to satisfy those who need a reason for our cancer.
(Oh, and be aware: not everyone who has lung cancer is a smoker, just like not everyone who smokes gets lung cancer.)

Along these same lines, some will point to a "spiritual origin" for the disease. They will insist my disease is tied to (i.e., caused by) sin, therefore a manifestation of God’s punishment, or evidence of “satanic” influences. (In other words, the diagnosis is deserved because of something "bad" I did.)

Example: I got this email from someone who visited my Facebook page: "I know you're not a Christian, but I wanted to ask if you've ever considered the possibility that if you turned your life over to Jesus, God would heal your homosexuality and maybe even your cancer." 
(Just to clarify: I do identify as a Christian. This person merely made that erroneous assumption based solely on my sexual orientation!)

2. Instructive.
So often, the first inclination is to tell the patient what they should be…must be… doing. Out of love or concern, we want to fix it.

Sure, they probably mean well, but such demands put great pressure on the person actually living with the disease and making the hard decisions. I’m always amazed (stunned! annoyed! frustrated!) at how those who’ve never had cancer suddenly become experts on not only how we got it, but how to treat it, and insistent on offering unsolicited advice on what to do, and how/what to feel.

“Whatever you do, don’t eat that.”
“You must drink this magic potion.”
“Pray this prayer.”
“Confess your sin.”
"Stay positive."
“Claim your healing.”
"Don't think that way."
“You’re crazy if you let them do chemo.”

Example: A few months ago, I actually had a man on Facebook tell me that my cancer would be cured if I purchased an online book for $10, and followed the diet proscribed in the book. When I informed him I trusted my medical team, and that such outrageous claims were not helpful, he said “Well, just die then.” (Yep, he was BLOCKED!)

Here’s an important fact to know: cancer is not a single disease, and there is not one cure-all. If/When you see or hear someone touting a particular food, or drink, or pill to cure all cancer, you can be assured that they have no idea what they talking about!

3. Victimization. 
“Cancer victim.”
I know it’s a common term, and one that’s used often, but it’s probably one of the least favorite ways to talk about my cancer. 

Webster’s defines victim "as one that is acted on and usually adversely affected by a force or agent; one that is injured, destroyed, or sacrificed under any of various conditions; one that is subjected to oppression, hardship, or mistreatment." 
So, yes, I know contracting cancers fits in the strict definition: Cancer “attacked” me and my body. I was adversely affected and injured by the cancer. 
Nevertheless, I still cringe when I’m referred to as “cancer victim.”

I prefer to frame my cancer differently. 

I didn’t ask for this disease, but I won’t be defined by it.
It is my misfortune to have cancer, but I am not cancer’s victim.
I don’t want to be seen as helpless. Or powerless.
I refuse to adopt a “poor me” attitude or victim mentality.
I was diagnosed with cancer.
I am living with cancer.
I am undergoing…even enduring…the effect of cancer treatments.
I have cancer, but cancer doesn’t have me!

It’s not easy to know what to say when someone gets a cancer diagnosis. We want to help, but worry about saying the wrong thing. 
I think one of the best ways we can help is to ask the person with cancer how we can help.
Ask them how they would like us to talk about the disease. 
And listen more than we talk!

My goal here is to call attention to these conversation so we can do better. So we help the person we love, not add to their pain.
Isn't that what we want for those we love?

We’ll continue this in our next article…