10/12/2026
Yes caregiving is hard, and that’s valid, but we still need care in this community and it can be incredibly difficult to even just support each other without burning ourselves out.
I’m tired of hearing about caregiver burnout. There. I said it.
In the disability community, there’s a LOT of talk about burnout. Specifically, caregiver burnout.
Now, before any of y’all come at me (lookin’ at some of you SMA moms 👀), let me make something VERY clear.
Caregiver burnout is real. It happens. All. The. Time.
Whether it’s family, friends, or paid staff, caring for someone with significant disabilities can be physically, mentally, and emotionally exhausting. I know that. I see it. I live alongside it.
And it is a completely valid experience.
Heck, caregiver burnout is so widely recognized that there are entire retreats, workshops, support groups, and respite programs dedicated to addressing it.
But, at the risk of sounding a tad self-centered…
Ummm. What about me? What about US?
The ones receiving the care.
The ones whose bodies are the reason that care is necessary in the first place.
The ones who have to depend on other people for the most basic aspects of being human.
Because here’s the thing.
At some point, every caregiver has the possibility of stepping away. Maybe it’s a few hours. Maybe it’s a weekend. Maybe it’s finding a different job or deciding they simply can’t do it anymore.
And while those breaks may not always be easy to come by, the option exists.
But us? We don’t get to clock out.
I don’t get to take a weekend off from having SMA.
I don’t get to go on a retreat and come home to a body that suddenly works.
I don’t get to decide that I’m too overwhelmed to need help getting out of bed, going to the bathroom, eating, or breathing.
I don’t get to resign from being disabled because I’m exhausted.
And I promise you, the mental and emotional exhaustion of living this way is something that deserves just as much recognition.
Because it’s not JUST the physical limitations.
It’s the constant planning. The coordinating. The vulnerability. The loss of privacy. The lack of spontaneity. The guilt that comes with knowing how much other people have to do for you.
It’s having to trust people with your literal life, even when you’re tired of trusting people.
It’s managing other people’s emotions and exhaustion while trying to survive your own.
It’s feeling like a burden even when nobody has said you are one.
And for many of us, there’s the added reality that this isn’t going to get easier.
As we age, our disabilities may progress. Our needs may increase. Our independence may decrease.
And we have to somehow make peace with that while the world focuses on how exhausting it must be for everyone else around us.
I am not asking anyone to stop talking about caregiver burnout.
I’m asking why we don’t talk nearly enough about the burnout that comes from needing care.
Because I can appreciate how exhausting it is to care for me while also acknowledging how incredibly exhausting it is to actually BE me.
Both things can be true.
But only one of us gets to walk away from my disability.
And it obviously isn’t me.
Just. Do. The. Daggum. Thing.
