It would be easier to think that, generally speaking, people are just assholes and this is why they say the absolute wrong things to those going through a life-changing experience.
Asshole-ery is the knee jerk response, the unbidden assumption that surfaces when you’re caught off guard, searching for a logical reason why this person would have just said that unbelievably hurtful, inappropriate, reckless thing to you and your loved one. It’s attribution bias at its best.
But of course it’s not that simple, and fortunately I’ve come to believe that people aren’t jerks as much as they are just plain fallible. They have good intentions, and they make mistakes.
While patients are often the recipients of these unfortunate communiques, caregivers enjoy their fair share of being on the receiving end of some truly tone deaf sentiments as well:
They want to offer comfort, so they say he’s going to be fine.
They are scared for themselves, so they ask what he might have done to ‘cause’ it.
They want him to get better, so they tell you about some treatment they heard or read about and suggest you look into it.
They want to help, so they tell you to let them know how.
They want to make sense of the unthinkable, so they say this is part of some divine grand plan.
They want to know how much to worry, so they ask what’s the prognosis?
They want to relate, so they tell you about someone they know who went through a similar experience, as well as the outcome, positive or not.
They want to give a silver lining, so they say, “At least it’s not [insert some horrible diagnosis]!”
They want the best for their family member, so they tell you all the things you need to do to ensure your caregiving is up to their standards.
You will hear sentiments like these constantly, and if you absorb them they’ll become a mass of anger and disbelief that people—even close friends or loved ones—can be so callous, so petty, so needy for whatever it is they want for themselves that they ignore all logic in how they communicate with you.
They Truly Don’t Know Any Better
The fact is, lots of people simply don’t know what to say. Lack of direct exposure to cancer, dementia, etc., means they don’t know the rubric that comes with experience. They haven’t learned the insider trading of phrases and terminology, nor have they learned the effect, intended or no, that their words can have.
Caregivers manage some pretty heavy stuff. My experience is mostly with cancer and while it had touched my family, my husband’s cancer was my first true and deep exposure. It’s intense, serious, life-altering and at the same time tedious and everyday—a real mixed bag of emotions and logistics—and it’s impossible to grasp the magnitude of impact unless you have direct experience. It’s intimidating to talk or ask about and it’s why people don’t know what to say or are terrified of saying the wrong thing.
They Think They Know More — Or Better — Than You
On the other hand, there are plenty of people who either do have sufficient experience or think they have sufficient experience, and they will be sure to let you know. They will share their experience, or that of someone they know, will talk treatments and ‘cures,’ will attempt to force their way into your circle, feeding off your trauma in ways that feel invasive, even grotesque.
(I know too that there are ill-intentioned people out there. The ones who say hurtful things on purpose. Who will say, even believe, that your patient deserves it, that you aren’t doing the best you can for him or her. I can only hope that these people never, ever come into your circle.)
They’re Afraid of Saying the Wrong Thing
And then there are the silent ones, those who really don’t know what to say or are afraid of saying the wrong thing so they choose to say nothing. Especially when it comes from people close to you, the silence can cut you more deeply than any misplaced comment. Even worse, they have no idea how much they’ve hurt you, because they’ve been under the assumption that they’ve saved you from their own potential mistakes instead.
It’s Your Choice to Absorb It (or Not)
Antonio’s diagnosis happened in a whirlwind of emotionally charged appointments and tests, with emergency surgery and an extended hospital stay capped off by sleepless nights and my own positive pregnancy test. Life had bitchslapped us multiple times over the course of four days and we were absolutely reeling.
During that time, I remember getting a call from someone we’d worked with briefly. He asked a lot of questions I wasn’t prepared to answer, about cancer types and treatments, and then told me outright I needed to get order a particular herbal supplement right away, that someone very close to him had cancer, had taken it and been completely cured.
I felt like I’d been accosted, honestly. The feeling that bubbled up was one of anger mixed with disbelief. “How dare you” growled from my very core. How dare you assume you know what’s best when you don’t know anything about our situation? How dare you tell me what I should be doing when I’m just trying to keep myself from breaking into a million pieces? How dare you give me this information that I’m now responsible for, that I need to decide to act on or not, wondering if the decision either way could be something I later regret?
Looking back, I’m able to separate all of those emotions from what I believe was his intention: Someone he loved was sick, and he believed this helped them get better. He wanted Antonio to get better too.
It was an absolutely fucked up delivery, but if you strip away the poor timing, the lack of knowledge or medical degree, this was one heart reaching out to another. And that is worthy of grace.
In my view, that’s the way to deal with all the wrong things people say. I tried the opposite: I carried the bitterness for a long time. I carried the anger and hurt when people who weren’t in my shoes told me how I should wear them. I wore the exhaustion of distinguishing energy replenishers from energy depleters. I held on to others’ divine plans that had yet to be revealed to me. I withstood the mindfuck that happens when those closest to you turn out to be the farthest away.
And I suffered for it.
You can bear the burden of the things people say, or you can bear the burden of deciding to give grace and let them go.
It’s too much to carry the wrong things. You can bear the burden of the things people say, or you can bear the burden of deciding to give grace and let them go. Either way requires you to give yet one more thing, even though one of them ultimately lightens your load.
Caregivers Say Stupid Things Too
As you decide whether or not those around you deserve forgiveness, keep this in mind: As caregivers, we’re not immune.
During one of our active monitoring phases, it happened that the Cancer Center had a fair on the same day as one of Antonio’s appointments. While waiting for lab results, we perused the tables of helpful aids for cancer patients, everything from a wig boutique to massage services to support group information.
At a table for legal services, two friendly women told us how we could get help creating or updating our will, a service free for Cancer Center patients. “Wow, that’s great–thanks for getting cancer, Antonio!” are the exact words that came out of my mouth.
I didn’t see the second woman’s reaction because I was so focused on the expression of horror transforming the first woman’s face. And that’s when I realized that the deep sarcasm, “if you didn’t laugh, you’d cry” intention of my words didn’t matter. Instead I sounded like an absolute shit. Even worse, I hurt the very person I was there to support.
I vaguely heard Antonio interject something along the lines of “My wife says the craziest things, sometimes she doesn’t even realize it,” as he gently but firmly steered me away from the table.
Of course I prostrated myself with apologies and explanations. He knows me well enough to know that I didn’t mean it the way it came out, that sometimes my best intentions get translated into the worst words. But they were still out there, and they were hurtful.
Yes, when it comes to saying wrong things, we caregivers can give as well as we receive.
