I see you over there in the corner. You with the “Komen for the cure” pink ribbon. You with treatment behind you. And, you too: you know someone who knows someone who had just my kind of cancer. I see you. And hear you.
You don’t see me, though. Because you’re too busy sharing uplifting memes, you know the ones where people with cancer are fighters and winners? You’re reveling in films of people dancing before their surgery. You’re way too busy not being afraid to notice that there are a lot of folks like me who are afraid.
Instead of trying to convince me that you know how to cure my cancer, I have some advice. Stop gaslighting people’s cancer experiences. Stop health ‘splaining. Instead, see us and listen to us. We all have our own experiences and they’re real.
Here’s a guide to help you understand how this thing works.
Don’t tell people how they should feel.
I’ve been told to not give in to fear. I’m not really sure what “giving in” means in this context, but I can tell you that fear is normal when it comes to cancer. So are shame and depression and anxiety and grief and sorrow.
Look, when you see your life in terms of statistics for the first time, it’s just hard. With bladder cancer, I have a 50 to 80 percent chance of having a recurrence. As I get further away from my original diagnosis, my odds improve and both my doctor and I are feeling optimistic that I won’t have a recurrence. But 50 to 80 percent is a tough stat to hear.
You also get a stat related to progression and mortality. Twenty percent of people with my diagnosis face progression, meaning their cancer recurs at a higher stage and grade. Sounds like good odds, right? Imagine ten people in a room, and then boot two of them out and the odds don’t sound quite as good.
And, I have a “good” cancer! (Yep, people have told me that.)
I’m not telling you that you should be afraid or that letting fear debilitate you is a good place to be. I’m just telling you that cancer comes with feelings, and those feelings make sense.
Don’t tell people that a bad thing is really a good thing.
What doesn’t kill you makes you stronger. Cancer is a gift. You have the chance to learn so much. What are your silver linings?
Gimme a break people. I’m glad you’ve learned from your experience and have found a silver lining. Well done, you. But the woman with breast cancer who now has severe lymphedema, the man with bladder cancer who lost his bladder, the adults who had a childhood cancer and lost their hearing and suffer cognitive dysfunction don’t need to bear the burden of your positive experience.
Quality of life issues following cancer treatment are real. The suicide rate among men with prostate and bladder cancer is sky high. People can be in remission and still suffer profoundly because of their cancer and its treatment.
This is not a good thing. We are often weakened by cancer, and it hurts so much to be told that we should feel gratitude for the experience of suffering.
Don’t ‘splain cancer to people with cancer.
There are at least two types of folks with cancer: those who know pretty much everything there is to know about their disease and people who don’t want to know everything about their disease. For both groups, it’s hard to hear someone say, “Well, actually…..” as they help you “understand” your cancer.
This is how to identify the people who don’t know much and do want to know more about their cancer. They ask questions. My rule of thumb is, if they don’t ask, then don’t tell them.
Don’t—please, please don’t—tell someone, “You can beat this thing.”
Good news for people with Stage 4 cancers usually comes in the form of a drug that can extend their lives by a few months. Months, people. When you hear about exciting new treatments, they usually extend life, but they rarely offer remission. Sure, I’d rather have four more months instead of two weeks. And getting another year, yes please. But Stage 4 cancers kill people.
I have a friend with Stage 4 breast cancer who posts updates on her FB page, and I stand in awe of the hideous things people tell her. “Keep fighting.” “You got this.” “Stay strong.” She’s going to die, folks, and she’s suffering mightily.
It’s hard to stay strong when you’re dying. It’s hard to explain that “keep fighting” means almost nothing to a person with metastatic cancer. This isn’t about her and her strength and will and character. This is about a disease that will “win,” whether she fights or not. It doesn’t matter if she’s positive and counts her blessings. It doesn’t matter what she eats. She can not beat this thing.
When you talk about cancer this way, you’re giving responsibility to the person with cancer for their own survival. You’re putting the burden on them. Please stop doing that. It’s just too much.
Try listening instead
I understand that most people mean well. People are trying to encourage us, problem solve for us. But, here’s something to think about when you’re gaslighting and health ‘splaining.
Consider that, maybe, you’re the one who’s afraid. You’re the one with the issues. You’re the one who can’t bear to think your cancer might return. You’re terrified of suffering that is bigger than you. You want to feel safe, to believe that you’ll never get cancer. You want to believe that you’re in control. Maybe you’re under the spell of magical thinking: “If I learn from this experience and if I’m grateful, then maybe I’m safe.”
Who am I to judge? All I know for sure is that we need to do a lot more listening and a lot less talking to people who are suffering. We need to say, “I’m sorry.” We need to let them know we’re thinking about them. We need to be able to hear about their pain. We need to check in on them. We need to do things for them. We need to be present.
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