On Labor Day, I developed a fever. Chills, aches, and that creeping sense of something not being right filled my body. This wasn’t new—my rheumatoid arthritis does a version of this sometimes. During a flare, my body aches, temperatures fluctuate, and I ride it out, hoping for relief within a day or two. But this time was different. Two days passed, and I could barely move, let alone keep up with basic tasks. My partner and I finally called an ambulance.
By the time I was being wheeled into the emergency room, I could barely spell my own name.
For a week, I fought for my life.
Three of the medications I take to manage my rheumatoid arthritis leave me immune-compromised. So, when a viral infection, COVID-19, a bacterial infection, and bronchitis all decided to visit me at once, my body could barely hold its ground. The doctors didn’t know where to start and made guesses while I gasped for air, debating which infection to treat first.
I survived.
But even now, weeks later, I’m still grappling with the long-term impacts, physically and emotionally.
On one of those endless days in the hospital, I finally sat up in bed, feeling a window of clarity after days of fog. My first instinct wasn’t to rest—it was to worry. I scrambled to text and call from my hospital bed to make sure my parents were okay, to check if my child missed me, and to navigate the impossible question of whether I’d be safe to return home. I was terrified I’d bring illness back to my parents or be exposed to something new by my school-age child.
‘For so many caregivers, there is no safety net when we fall.’
These were impossible choices, but they were also inevitable ones. For so many caregivers, there is no safety net when we fall. No contingency plan. No backup caregiver. The only plan for my parents was me. And there I was—hooked to machines, drifting in and out of consciousness, but still expected to make sure things were okay at home.
Our caregiving system is broken. It assumes that family, specifically daughters like me, will pick up the slack where the infrastructure fails. But what happens when the caregiver can’t?
This experience made me reflect deeply on the work I’ve done in care advocacy, and how the lessons I learned in my time at Caring Across Generations—an organization working to shift how care is valued in this country—shaped my understanding of this fragile system.
I’m transitioning to a new role in a new organization, but the language I’ve gained about caregiving has been invaluable. We are part of a much larger ecosystem—one that should be connected and resourced, but too often, the path toward solutions is riddled with barriers.
In the disability community, there’s a rallying cry: Nothing about us without us. And as I navigate my disability and its evolving impact on my life and health, I know how true that statement is. As a Black, Latina woman, I am acutely aware of how much more complex this becomes. Navigating a healthcare system that was never designed for people like me—disabled, historically excluded, and inundated with caregiving responsibilities—feels like fighting a battle on all fronts.
But I’m not alone. There are millions of us in this army that was invisible for too long. We’re all doing what we must for those we love. What we need is a system that recognizes and supports that labor. Because it’s not sustainable, nor just, to keep relying on the already stretched to hold it all together.
We need a better plan. A safety net for the caregivers who fall before they fall—aging and disability care, paid leave, early childhood care—equitable access to respite coverage for caregivers like me. We deserve more. A system that doesn’t leave us gasping for air, but instead ensures that no one has to bear the weight of caregiving alone.
We are at a critical juncture in our country’s political landscape. The pandemic laid bare the fractures in our care systems, and we now have the opportunity to demand that care be placed at the center of our political priorities. This moment—where conversations about caregiving, labor and healthcare are becoming impossible to ignore—offers a chance to build a care infrastructure that works for everyone. But we must act now.
I’ve been unlocked, I am awakened, and I am ready to continue the fight. I know that real change is only possible when caregivers like me are at the center of these conversations. For all our sakes, we can’t afford to stall any longer. Because care can’t wait.
Sadé Dozan (she/her/ella), MPA, is vice president of Advancement at Borealis Philanthropy, where she is committed to developing resources for those at the core of social movements. Her work uses philanthropy as a vehicle for community-led activation and change, with a focus on storytelling and narrative saturation through an organizing lens. Previous to Borealis, Dozan was chief of Operations & Development at Caring Across Generations.
Photo credit: Shutterstock/wavebreakmedia
