Dear Caregiver: You Don't Have to Be Inspiring Today
Why feeling the hard things makes you better at the hard work.
I started my morning in “systems” mode, organizing and scheduling my son’s upcoming semi-annual out-of-state visit week. After 14 years, you’d think it would come with some emotional distance. Sometimes it does. And sometimes, like today, it doesn’t.
As caregivers, our emotions often have to be put on hold until we finish our tasks and make sure everything will run smoothly, in theory, of course. (Insert maniacal laughter here.)
I schedule appointments, keep everyone aligned across time zones, and add the cardiologist visit, shutting out anxiety as I cram 10 visits into two days. I book reservations, scan documents, attach them to calendar events, keep hard copies for backup, and navigate the hospital maze, all while suppressing emotion.
That was my morning: full coordinator, in “medical director” mode.
But as soon as the last appointment was on the calendar and the checklist was complete, the shift was abrupt. Coordinator stepped back. Mom stepped forward. The weight returned, and the tears followed.
Why does my son have to see palliative care when his peers are living it up at college or on spring break?
Why does my son have to see 11 specialists when others his age are making plans with friends and girlfriends or boyfriends?
Why does my son…
That’s when the toxic positivity creeps in.
Sara, why don’t you look on the bright side? You get to travel to the best facility, see the best doctors, have your spouse by your side, and spend money on fun things before and after the appointments. Why are you complaining?
Well, Sara, it’s because I can. And I should. And it’s healthy.
Over the years, I have learned to embrace the good alongside the bad, the easy alongside the hard, and the joy alongside the pain.
I can hold conflicting emotions at once. It’s not just possible; it’s necessary.
I spent years avoiding the negative emotions because I believed the mom in me needed to show up happy for everyone. All that did was slowly erode my ability to feel anything at all. Suppressing the hard emotions doesn’t protect the people you love; it hollows you out until you have nothing left to give.
If you are a caregiver, please hear this: you are allowed to cry. You are allowed to vent. You are allowed to curse the disease.
You are also allowed to recognize the good that exists alongside the diagnosis. I gave up a career to be a full-time caregiver. I am allowed to grieve what my dreams once were while simultaneously being grateful that I can be here for my son every day.
Holding space for both my grief and my gratitude is not just allowed; it is essential. Balancing these emotions makes me a better caregiver, mom, friend, and woman, a reminder that carrying both is what sustains me.
The routine has become so ordinary for me that I could do it in my sleep, and I’m genuinely grateful for that.
I’m also grateful my husband can now come to these appointments. That wasn’t always possible when we first flew across the country in those early years.
We stop at odd roadside attractions, find great local restaurants, and create memories that have nothing to do with medicine. That matters too.
Being grateful isn’t toxic positivity. Gratitude and positivity become toxic only when they outweigh the hard emotions. Opposing emotions are toxic only when you assign guilt or shame to one over the other.
As caregivers, we carry a lot, and we are often expected to be the inspiration people tell us we are.
But it’s okay to not want to inspire anyone right now.
It’s okay to not feel the need to make your emotions understandable or palatable to those around you.
You feel however you feel, in the moment you feel it.
Because we all know you’ll be dusting yourself off, drying your tears, and stepping back into boss mode soon enough.