The Burden Myth: What Strangers Get Wrong About Our Marriage

It’s a typical Tuesday morning in our house. My wife, Hannah, is helping me get dressed, which involves her doing most of the physical work. She’s caregiving. She lifts my arms into a shirt, adjusts my waistband, ties my shoes. Meanwhile, the two of us discuss our memorable dreams, plan out our day ahead, and make fun of each other with affection. By the time we're done, we've laughed three times and argued once about whether I was being genuinely helpful or just annoying.

This dynamic, according to thousands of strangers on the internet, is a tragedy.

I have spinal muscular atrophy, a progressive neuromuscular disease that affects my muscles. I use a power wheelchair, and I have the upper body strength of a moderately determined houseplant. I also require a significant amount of physical assistance throughout the day. Hannah helps me with most of it. Together, we run a YouTube channel called Squirmy and Grubs, where we document our life with humor and honesty.

The comments we receive are, to put it charitably, a study in human indecency and hatred. People watch our videos and see Hannah helping me into bed, for instance, and they feel the need to inform us–urgently–that she must be miserable, that she's wasting her life, that I am a burden she is nobly suffering. These comments are written with such confidence it’s as if these strangers have access to some truth about our relationship that we have somehow missed.

Here's what they're getting woefully wrong: caregiving in our relationship is not a separate category of activity that sits outside our marriage, weighing it down. It is woven into the fabric of how we live. It is part of the rhythm of our days, no more separable from our life than cooking dinner or watching TV together. The idea that Hannah helping me get dressed is fundamentally bad because it’s an act of caregiving is simply a falsity. 

Relationships have always involved people doing things for each other. That's not burden. That's partnership.

Now here's the part that really seems to short-circuit people: I take care of Hannah too. Not in the same physical ways, obviously–I'm not going to be carrying anyone to bed anytime soon. But I show up for her constantly in the ways that I can. I am her sounding board, her creative collaborator, her organizer, her listener, her phone-call-maker, her person who will always tell her if she forgot to put on deodorant. I talk her through hard moments. I make her laugh when she doesn't expect it. I love her with specificity and attentiveness. I cannot mow the lawn, but I am an equal partner in this life together.

Our relationship is not a charity arrangement. Hannah did not marry me out of pity, and I did not marry her out of desperation. We fell in love because we are genuinely delighted by each other, and we stayed together because that delight has only grown. The caregiving is real, yes. It takes time and energy, and there are hard days, and we talk about all of that openly. But it exists inside a relationship that is, by any honest measure, full and funny and healthy.

The burden narrative is persistent because disability has a long history of being framed through loss. We are taught to see disabled bodies as problems to be solved, managed, and endured. So when people see Hannah helping me, they aren't really seeing us–they're seeing a symbol, a story they already know about sacrifice. It's not about us at all. It's about their own discomfort with disability, their own fear of dependence, their own inability to imagine that a life like mine could be a life fully worth living.

I want to be clear that I'm not suggesting caregiving is always easy, or that disability never creates challenges in relationships. It does. We'd be the first to tell you that. But difficulty is not the same as burden, and challenge is not the same as tragedy. Every relationship has its particular texture of hard things. Ours includes some that are specifically related to my disability, and some that have nothing to do with it whatsoever–like our ongoing dispute about my refusal to read reviews before I purchase things and the subsequent delivery of 40lbs of bread yeast.

What I want when people watch our videos or read about our life is for them to update their framework. To consider that dependence and independence exist on a spectrum for everyone–that all of us need help, in different ways, at different times, from the people we love. To see Hannah not as a martyr, but as a partner. To see me not as a burden, but as a husband. To understand that our love is made richer by the particular intimacy that comes from needing each other without apology.

We are doing fine. Better than fine, actually. We are annoying each other on a Tuesday morning and laughing about it, and that is exactly what a perfect life looks like for us.