I love my husband. Honestly, who knows me better than he does? We’ve been through years of life together, and like any married couple, we’ve had our snags. There are days we just want our own space. Days when the way he yawns makes me roll my eyes. Days when my snarky comments probably send him straight outside, ready to “check the yard” or “cut the grass” for hours. But no matter what, love always floats to the top. And I am deeply, fiercely thankful to have him by my side.
But here’s what nobody really talks about — what happens when your spouse is not just your spouse, but also your caregiver. That changes everything.
My husband didn’t just say “I do” to me; somewhere along the way, without a choice, he also said “I will” to a role neither of us saw coming.
If you know me, you know I’m stubborn. The kind of stubborn where I could be standing there with my shirt on fire and still refuse to ask for help. I like doing things on my own. I like being the strong one. But now, there are days when I can’t get up without him. Days when curbs and I are sworn enemies, and I need his arm to steady me.
And then there are the days I just need him to be still with me — to let me grieve the version of myself I thought I would be. The wife who could cook dinner without getting exhausted halfway through. The one who didn’t have to say, “We’re missing an ingredient” because I simply didn’t have the energy to finish the meal. The one who didn’t have to choose eating out just because my body wouldn’t cooperate that day.
Some days, I hate this disease. And I’ve decided that’s okay to admit. We need to talk about it, because it’s not all flowers and silver linings. There are bright spots — treatments now can give us more time than my dad ever had with this same diagnosis — but at the end of the day, transthyretin amyloid cardiomyopathy (ATTR-CM) is still a fatal disease. My life shifted in March 2020 when the doctor said those words. Everything changed in an instant.
Some days, my grief isn’t just for me — it’s for my husband. Not because he’s gone, but because of everything extra that has been piled on his plate. I watch him juggle being my partner and my caregiver. Sometimes even his touch, the touch I’ve loved for years, makes my skin crawl—not because of him, but because my nerves are screaming in pain.
Then comes the guilt. And after guilt, the anger. Always directed at the disease, but sometimes spilling out sideways into moments neither of us asked for.
Moments of unknown. Moments of bitterness. The moments you’re mad at life. The extra roles you never planned for. What do you do with all of that?
For us, it’s been learning — over and over again — that love needs space to breathe, even when life feels suffocating. It’s been giving ourselves permission to have bad days without letting those days define the whole story. It’s been finding ways to laugh together, even if it’s just over the fact that I’ve now declared war on every curb in town.
It’s been messy. It’s been humbling. And it’s been a daily reminder that marriage isn’t just about the big promises we make at the altar — it’s about the quiet, unseen ones we make in the middle of the night when the world is still and our hearts are heavy.
I don’t have all the answers. There are still moments when my stubbornness wins, when I insist I can do something I clearly can’t, and when frustration takes the wheel. But I know this: my husband and I are learning to walk this road together, one complicated, unsteady step at a time. And as much as I hate this disease, it has shown me the depth of love that isn’t afraid to get messy, that stays when it’s hard, and that can carry both the marriage and the caregiving without letting either collapse.
Because at the end of the day, love isn’t just what you feel — it’s what you do. And sometimes, it’s what you do twice.
Sign up here to get the latest news, perspectives, and information about ATTR-CM sent directly to your inbox. Registration is free and only takes a minute.
