There is a small machine attached to my body right now. It has been there, in one form or another, since 2020, the year a doctor told me I had diabetes. I interact with it more often than I interact with most people I love. I press its buttons in the morning, before meals, in the middle of the night, in the back of taxis, under restaurant tables. It keeps me alive. And most days, using it feels like a small daily fight.
I’ve tried a few of them over the years — a couple of Medtronic pumps, then Tandem. Different shells, different menus, the same strange feeling underneath: that nobody who designed this thing ever imagined actually living with it. The screens are cramped. The menus bury the actions you need most under the ones you almost never use. The alarms go off with the emotional intelligence of a smoke detector, loud and blunt, in the quietest moments. And it isn’t only the software. The physical system feels just as unfinished. The sensors peel off the skin far too easily — a shower, a shirt pulled off in a hurry, and they’re gone. The tubing kinks, or catches on a door handle and tugs the cannula halfway out of me. More than once I’ve woken up to find a catheter that quietly came loose in the night, hours of insulin never delivered. For an object that manages a serious condition — an object that, quite literally, holds a life in it — the care that went into how it feels to use seems oddly thin.
For a long time I read this as neglect, and maybe some of it is. But the more I thought about it, the more the question changed for me. It was no longer why is this made so badly. It became something bigger, and more interesting: in a place like this, what is design really for?
Here’s the thing I keep coming back to. When a food-delivery app has bad design, you sigh, you tap twice instead of once, you move on. The cost is a few seconds of mild annoyance, and then the moment is gone. But a medical device doesn’t leave. It sits on your body all day, every day, for years. Every clumsy menu, every confusing screen, every alarm that shames you in public is not a one-off irritation. It’s a small tax, and you pay it again and again, thousands of times, for the rest of your life. Multiply a two-second frustration by a lifetime and you don’t get an inconvenience. You get a texture. You get part of what it feels like to be alive in this body.
That’s the part I think the industry misses. We treat design as decoration — the nice-to-have you add once the “real” engineering is done. But when a tool is fused to a person, the design isn’t the decoration. It’s the thing itself. It becomes the experience of the illness. A well-made device can make a hard life feel a little lighter; a badly made one can make it feel, every single day, like the disease is winning.
And this is why the neglect stings more here than anywhere else. It’s not that these companies don’t invest in usability — they do, extensively. But most of that effort is pointed at a single question: can the user hurt themselves with this? That’s a fair question. It’s just not the same as can the user live well with this? Safety and dignity are not the same goal, and when you design only for the first, you end up with a device that won’t kill you but never quite lets you forget it’s there. The confirmation screens protect the company. The person carrying the thing is left to cope.
Maybe the clearest proof of how much this matters is what patients have done on their own. Frustrated with the pace of the industry, communities of people with diabetes have reverse-engineered their own pumps and built their own systems — writing their own software, taking on real risk — because they couldn’t wait for something better. Think about what that means. When your customers are willing to hack a life-support device rather than keep using it as designed, that is the loudest design review in the world. It says: this matters so much to us that we’ll do it ourselves. It says design here is not a luxury. It’s survival, and comfort, and the difference between a day you endure and a day you actually live.
I don’t think this is only a story about diabetes, or even about medicine. It’s a question about where we choose to spend our care. We pour our best design talent into the things that are easiest to walk away from — the app you’ll delete next month, the checkout flow you pass through once. We spend far less of it on the things people can’t put down: the pumps, the pacemakers, the wheelchairs, the tools that follow someone through an illness or a disability, day and night, for years.
So here’s what I keep asking myself, with the machine still on my hip as I write this. If design is powerful enough to change how a life feels — and I’m fairly sure it is, because I feel it every day — then what would it mean to design not for compliance, but for dignity? And what else in our lives, right now, is quietly built to be endured rather than to be lived with?
