Building Spoons.world: What We're Learning

The real challenges of building a patient-side community platform — what you discover when you try to build infrastructure for people too exhausted to use bad tools.

The first prototype had a sign-up flow that took eleven steps.

I know this because one of our beta users — a woman with ME/CFS who had been trying to join for three days — sent us an email that said, simply: "I can't do eleven steps. On a good day I can do three. Please fix this."

She was right. We fixed it. That was the first real lesson in building for people with chronic illness: the tolerance for friction is not lower because our users are less capable. It is lower because they have spent their capacity on other things — managing their bodies, their medications, their relationships with a healthcare system that requires constant effort to navigate. By the time they reach your platform, they have often already done an enormous amount of work just to be functional enough to try to join.

Design for the person who arrives with two spoons, not twelve.

Spoons.world is a social search engine for people with chronic illness. The idea is simple: you should be able to find someone who has your condition, tried your medication, lives in your city, has your specific combination of diagnoses. You should be able to find people by the actual texture of your experience, not just by illness category. The isolation of chronic illness is partly medical and partly informational — the medical system doesn't connect patients to each other. We want to build that infrastructure.

The technical problem is manageable. The design problem is harder. And the hardest problem of all is the trust problem.

Here is what we've learned about trust. People with chronic illness have been failed by institutions repeatedly — healthcare institutions, insurance institutions, workplace institutions, the basic social contract that says "if you are visibly suffering, help will arrive." When you ask them to join a new platform, you are asking them to extend trust to another institution. And they have evidence, accumulated over years of being told their symptoms weren't real or their needs weren't valid or their accommodation requests were inconvenient, that institutions betray this trust.

You cannot overcome this through good branding. You cannot overcome it by saying you're different. You can only overcome it by being different, repeatedly, over time, in ways that are visible to the people you're asking to trust you.

This means things like: when a feature breaks and someone can't access their profile, the response is not a ticket number. The response is a human being within an hour. When someone reports that the interface is inaccessible during a flare because the text is too small and the contrast isn't sufficient and there are too many moving elements on the page, the response is not "we'll put that on the roadmap." The response is a fix, and an explanation, and a thank-you for the labor of telling us.

Labor. That's the other thing we've learned. Feedback from people with chronic illness costs them something. Every bug report, every accessibility note, every "this doesn't work for me because of X" — that is energy that came from a limited supply and was directed at us. We try to treat it accordingly.

What we're building is not the platform we originally designed. It is the platform that emerged from approximately two hundred conversations with people who are sick and who told us, with varying degrees of patience and directness, what they actually needed. Some of what they needed was what we expected. A lot was not.

They didn't primarily want to find medical information. They wanted to find people. Not just people with their diagnosis, but people whose daily management of that diagnosis looks like theirs. The granularity matters. "I have POTS" describes a very wide range of lived experiences. "I have POTS and I also have MCAS and I use a cooling vest and I cannot tolerate most antihistamines and I live alone and I'm trying to figure out how to work remotely" is a specific person, and that specific person benefits from finding another specific person who matches significantly. That's the search problem we're trying to solve.

We're solving it slowly, because we're also living it. Most of the people building Spooniversity and Spoons.world have chronic illness. This is not a coincidence. It means we know what a bad interface feels like at 3am during a flare. It means we know what it costs to send a support ticket. It means we hold the user's experience not as a design exercise but as a fact we live.

Eleven steps became three. We're still learning. That's the true version.

Originally published on Substack. Republished here as part of the written tradition behind [The Honest Room](/workshops) and the methodology of [Testimony-Based Presence](/methodology).

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