If there’s one thing you are guaranteed to hear as a caregiver, it’s “You are so strong.”
It’s a common sentiment shared by people who want to offer words of encouragement and respect.
It’s meant as a compliment, a testament to your never ending love, energy and dedication to and for your patient and loved one. You are a pillar of strength; a bastion of fortitude, perseverance and patience.
“I cannot imagine dealing with what you are going through and keeping my shit together the way you are.”
What it actually translates to is “I cannot imagine dealing with what you are going through and keeping my shit together the way you are.”
But it’s a myth, because there are incorrect assumptions behind this sentiment, as well-intentioned as it may be. Let’s break these down:
Assumption 1: Imagining
“I cannot imagine…” encompasses the first assumption, because yeah, no one does. Not even us caregivers. There is no one that prepares you for an unexpected test or accident that changes your loved one’s—and therefore your—life in an instant.
We might think, “I wonder what I would do if…” (in my own case, “…my husband got sick”) but that wondering never ever encompasses the entire reality.
I wonder what I would do if Antonio was diagnosed with an aggressive, malignant cancer and I found out I was pregnant at the same time and he had surgery and chemo and radiation and then it went away but then it came back again and we found out it was an even more aggressive, malignant cancer than we thought and he had more aggressive treatments that couldn’t be counted on to be effective because apparently doctors had never seen his cancer behave this way before, but then he developed complications from those treatments that required even more surgeries and meanwhile our kids’ anxiety went through the roof because their father was going through this horrible illness at the same time as a global pandemic and I would be packing wounds and administering IV antibiotics while trying to work full time and raise our kids and I was so focused on taking care of everyone else for so many years that I’d lose myself in the process.
Nope, no one imagines that.
Assumption 2: What you’re going through
The second assumption revolves around “what you’re going through.” Because anyone telling you how strong you are doesn’t actually know what you’re going through.
They understand the idea of cancer, but they don’t know what it’s like to wait for days or weeks to find out just how much your life will change, or what it is to live everyday knowing that at some point this horrible thing is going to return. They don’t know that while you’re dealing with sickness, you’re also watching friendships die because the people you thought were your support are nowhere to be found. And they don’t know the depth of emotions you’re feeling, not just love and gratitude but also fear and guilt and resentment and awe and grief.
Certainly there are fellow caregivers out there who have a sense—who’ve taken care of an elderly parent or carried a loved one through disease—but as much as those are your people (and they are, and you should find them and hug them and let them hug you), there are always differences.
Their relationship with their parent isn’t the same as yours, their loved one’s cancer required different treatment. No one has the same experience as you do; your caregiving journey is entirely unique.
Assumption 3: Keeping everything together
“Keeping shit together” is the third assumption that can rub any caregiver the wrong way. Because I guarantee that any of us will say at any given time that we 100% Do. Not. Have. Our. Shit. Together.
We are barely keeping the balls in the air and it’s everything we can do to make it through the day much less look like we’re thriving. We are not faking it until we make it. Instead, we’re compartmentalizing, sweeping emotions under the rug so we can get through that work meeting. We’re breaking down in the shower, because we think the kids won’t hear us or attribute our puffy eyes and red noses to anything more than hot water and steam.
We’re losing our freaking minds and yelling our heads off when we see our kids’ clothing drawers aren’t perfectly organized or the weeds are coming up through the mulch because WHAT’S THE FREAKING POINT OF MULCH IF THE WEEDS JUST GROW ANYWAY? (No? Just me?)
Or maybe because we’re realizing we’ve felt the need to maintain a level of control and manageability of all the things at all times in case the shit hits the fan yet again and clothes and weeds are a hell of a lot more controllable than cancer. (Thank you therapy.)
From the outside we appear to have everything together because the world does not want to see people breaking down in utter despair and exhaustion in public. So we don’t, and people think that what they see is an accurate picture of our mental state.
When people tell me, “You’re so strong,” my response is often, “No, I just do what needs to be done.” Aka “I don’t have a choice.” Caregivers don’t often get to choose what tasks they’ll do or needs they’ll fill (although to some degree we should get to). We’re our person’s person and that means we’re doing whatever comes up whether we have the skill, experience or desire to do so or not.
Caregivers usually don’t even get to choose whether or not they even want to be a caregiver. Most are doing so because someone they love—a parent, a spouse, a child—is going through a life-altering event. Sometimes they’re the caregiver because they agree to be there for that person, sometimes because there’s no one else.
My husband has cancer. He’s my partner, my friend, the love of my life, and I will do whatever I need to do to get him and our family through this. Full stop.
And that’s where the myth of “You are so strong” becomes the truth. Because all of us caregivers are here. We showed up.
Through the pain, the fear, grief, anger, resentment, sadness, exhaustion, we’re still right here next to our people. We might be the hottest of messes, we might pray for this never ending journey to be over, we might want to be anywhere else, but right now, today, we’re here and we’re doing our best.
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P.S. For those reading who are wondering, “What can I say to a cancer caregiver instead of ‘You are so strong,'” check out What to say to a cancer caregiver.
