The Spoonie Product Designer's Bench: Tools for Working With Chronic Illness in Tech

A designer in a Slack DM, last winter, after a flare: "I just need someone to take the last forty minutes of the meeting I was in and turn it into the three things I actually need to do tomorrow, without making me re-listen to any of it. That's all I want. Is that a product?"

It is, sort of. It isn't a product so much as a prompt. And the bigger question underneath it is one that everyone in product and design with a chronic illness has been asking quietly for years: how do I keep doing this work from inside a body that does not always cooperate?

I want to write about that question with care, because I am not the one answering it for myself. This piece is written from outside the experience, with input from people who live it, and it is aimed at two readers at once: the spoonie designer or developer or PM who needs practical tools this week, and the ally on their team who wants to help and does not always know how. I am not going to pretend I know what living with chronic illness feels like. I am going to try to be useful anyway.

A note on the word "spoonie": it comes from Christine Miserandino's 2003 essay "The Spoon Theory," where she described energy as a limited number of spoons per day, and the cost of living with chronic illness as the cost of spending those spoons on things healthy people don't even notice. If the word is new to you, read her essay. It is one of the most-linked disability explanations on the internet for a reason.

The specific costs of doing design work while chronically ill

Every job has costs that sit on top of the actual work. For chronically ill workers in tech, those costs are usually some mix of the following:

Meeting tax. Meetings assume a body that can sit upright, pay attention, respond in real time, and remember what was said afterward. A spoonie may be able to do three of those four on a given day and none of them on a bad one. The meeting happens anyway, because meetings are how teams work, and afterward the spoonie is left to reconstruct what was decided from memory, notes, and whatever chat log exists.

Async-hostile tooling. A lot of design tooling still assumes synchronous collaboration. The review where three people talk over a Figma file. The standup where you say what you did yesterday. The design crit where the discussion happens in the room and the decision gets written down after, by someone whose notes you cannot read. A worker who needs to do most of their thinking alone, in blocks of good hours scattered through the week, has to translate every synchronous artifact into something they can use async, and the translation is unpaid work that nobody sees.

Context-switching penalty. Neurotypical advice about chronic illness often assumes that you can "batch" tasks, and you can, to a point. But the cost of a context switch is not linear. Switching from designing to writing to reviewing to messaging on a day with full spoons is nothing. Switching between the same four things on a day with two spoons left is the difference between finishing one task and finishing none.

Pain and cognition. Physical pain and medication side effects affect cognitive function, and the effect is real and under-studied. A worker who is in pain is often told they "should rest," which is sometimes possible and sometimes not. When resting is not possible, the work still has to happen, and the work is harder, and the worker pays the difference in a second tax that has no official name.

The invisibility tax. The hardest one. A worker who "looks fine" is assumed to be fine, and the accommodations they actually need are read as preferences. "I work better async" is heard as a personality quirk. "I need to leave at 3" is heard as slacking. The cost of explaining the invisible thing over and over is itself exhausting, which is why most spoonie workers simply stop explaining and absorb the cost.

The argument of this piece is: AI tools cannot fix any of these, but they can flatten some of them, and the flattening is significant, and the flattening is worth building into your daily workflow if you are a spoonie worker, or worth advocating for if you are a teammate of one.

I also want to be very clear about what AI cannot flatten, and I will get to that at the end, because pretending AI can fix chronic illness is the single worst way this piece could go, and I would rather not get there.

The bench: five tools and how they help

A "bench," on this site, is a curated kit. Think of this as the kit I would hand a spoonie designer starting a new job who asked me, "What do I set up in the first week to make this work sustainable?"

1. 🥄soul-the-spoonie-energy-coach

This is the soul that does the re-planning work. Not the planning. Spoonies are often excellent planners, because they have had to be; a chronically ill worker's calendar is usually more thoughtful than a healthy colleague's by a wide margin. The planning is the part the worker already does well.

What the worker does not always have capacity for is the re-plan. When the plan falls apart at 2 p.m. because a flare hit, or a migraine started, or the medication didn't kick in the way it was supposed to, the worker needs to triage the rest of the day. That triage is the kind of conversation that is easy to have when you have energy and hard to have when you don't, which is exactly the wrong shape — the moments you most need to re-plan are the moments you are least able to.

The energy coach is good at this specifically. You tell it the original plan, you tell it how many spoons you have left, you tell it what is load-bearing (the meeting you cannot move, the deliverable due Friday) and what can slip (the PR review, the Slack backlog). It gives you a re-plan in thirty seconds. The re-plan is not better than the one you would have made yourself with a full cup of coffee and an hour. It is infinitely better than the one you would have made at 2 p.m. in a fog, because the one you would have made in a fog is "nothing," and nothing is the enemy.

This is the soul I'd most want a new spoonie hire to have access to in their first week, because the re-planning conversation happens more than any other conversation, and it is the one that takes the most energy to have alone.

2. 📋prompt-meeting-notes-for-spoonies

The meeting tax, addressed directly. Feed it a transcript or a set of rough notes from a meeting and it gives you back three specific things, in this order: (1) the decisions that were actually made, (2) the things you are on the hook for, and (3) the things you need to follow up on if you want to stay in the loop. Not a summary. Not a blow-by-blow. Three specific outputs that answer the question, "what do I have to do next?"

The prompt is tuned for a very specific failure mode of standard meeting summarizers, which is that they produce a beautifully organized summary of the whole conversation, and a spoonie worker at the end of a bad meeting does not need a beautifully organized summary. They need the three things, so they can close the laptop and go lie down.

If your team records meetings — and I am going to say it clearly, every team should record meetings, and the biggest single accessibility improvement most tech teams could make in one quarter is to record every meeting by default with captioning on — then this prompt becomes the bridge between "I could not attend that fully" and "I still know what happened."

3. 📝agent-the-content-clarity-coach

This one is the least obvious fit and the one I would argue for hardest. A content clarity coach is an agent tuned to take any piece of text — a spec, a PR description, a design rationale, a Slack post — and tell you whether it is as clear as it needs to be for the audience you're writing to.

Why is this on a spoonie bench? Because writing clearly takes energy, and spoonie workers often have to choose between writing clearly and writing at all. On bad days, the draft of the PR description you ship is the one you managed to write, not the one you wanted to write. Handing that draft to a clarity coach costs nothing and produces a sharpened version that you can then edit down instead of starting over.

The point is not that the agent writes for you. The point is that the agent does the part you would have done yourself on a good day — the sharpening pass — so your remaining energy can go into the parts of the work that are actually yours to do.

4. 🧠skill-cognitive-load-pass

This is a skill you run on your own designs, but the reason it is on this bench is more personal: a spoonie designer is often their own best test subject for cognitive load, because the things that exhaust a tired designer also exhaust a sick one, and the things that exhaust a sick one will exhaust a much broader range of users than most "average user" usability tests capture.

Running a 🧠cognitive load pass on your work is therefore double-duty: it improves the design for your users, and it tells you where the design itself is draining your energy to work on. A page with too many things happening at once is harder to design from inside chronic illness than a page with one clear focus. Often, the exhaustion of the work is itself a signal about the product.

5. 🩺prompt-the-doctor-explanation-translator

This one is not about the work directly. It is on the bench because spoonie workers spend a non-trivial fraction of their week on medical logistics, and the logistics have a cost that eats into the work. A prompt that can take the results from a doctor's portal, the lab report, the insurance denial letter, the prescription instructions, and translate them into plain language with the specific "what do I do next" summary attached — that prompt reduces the medical tax, and the medical tax is part of the work tax, because hours spent parsing a lab result are hours not spent on the design review.

I am including this one because the myth that "work and health are separate" is the thing that most often breaks spoonie workers. They are not separate. Anything that reduces the cost of health logistics is a work-supporting tool.

What no tool can replace

I said I'd get to this part, and I want to give it its own section because it is the most important part of the piece.

Rest. No prompt, no soul, no skill, no workflow, no productivity system, no clever batch of AI tools can replace rest. If the implicit promise of this article is "use these tools and you can work at the same pace as a healthy person," I want to reject that promise out loud. The tools in this bench are not there to let you do more. They are there to let you do the same amount with less wasted overhead, so that the energy you save can go back into rest, not into more work. If you find yourself using AI tools to push yourself harder, the tools are working against you. Use them to push yourself less.

Accommodation. If you need a flexible schedule, you need a flexible schedule. An AI cannot give it to you. Your employer can. The right conversation is with your manager, your HR partner, your doctor, and — if necessary — your lawyer, in that order. AI tools can help you draft the accommodation request, prepare for the conversation, and document the pattern of your needs over time, but they cannot replace the conversation itself. Do not let the availability of AI productivity tools become a reason to postpone asking for the actual accommodation you are entitled to.

Medical care. The goal of the bench is to reduce the overhead around medical care, not to replace it. An AI cannot manage your condition. Your care team can. If anything in this piece is reading as "you don't need a doctor because the AI is good enough," I have written the piece wrong. Please read it again.

Community. The spoonie community — the actual humans who have lived with chronic illness and can tell you which batteries to try and which gel packs work and which accommodations your specific condition qualifies for — is not replaceable by any tool. The Spoon Theory exists because a human wrote it for other humans. The value of that writing is not in its information content. It is in the fact that somebody else has lived it and is willing to explain it to you. If you are newly diagnosed, the single most valuable thing you can do is find the community. The second most valuable thing is build a workflow that preserves your energy for the community, instead of burning it in meetings and emails.

For allies and teammates

If you are reading this as the teammate of a spoonie worker and wondering what to do, the honest answer is smaller than it feels.

Record your meetings. Default to async writeups. Do not penalize people for missing the standup if the work is getting done. Do not make accommodation requests a negotiation. When somebody says "I need to work differently," believe them, and then ask what "differently" means specifically, and then actually do it. These are not radical asks. They are the baseline, and most teams are below the baseline.

If your company has money and not much time, buy the seats for the AI tools above. If it has time and not much money, give the spoonie workers on the team an extra hour a week protected for workflow maintenance. Both are cheap. Both compound.

Do this week

For spoonie workers:

• Install 🥄soul-the-spoonie-energy-coach somewhere you can reach it fast — a pinned tab, a bookmark, a phone shortcut. The hardest part of using it is having it reachable when you need it.
• Next meeting you attend, afterward, feed the transcript to 📋prompt-meeting-notes-for-spoonies. Notice whether the three-item output is enough to act on. If it is, make it a habit.
• Pick one conversation this week that you have been putting off because it would take too much energy to draft — an accommodation request, a PR description, a project proposal — and hand the rough version to 📝agent-the-content-clarity-coach for sharpening. Ship the sharpened version if it lands; discard it if it doesn't. Either way, the first draft got written.

For allies:

• Turn on meeting recording by default.
• Publish your team's meeting notes async, every time, with decisions and action items called out.
• Ask the people on your team who work differently what one change this week would make the most difference, and make that change, and do not ask them to justify it twice.

The designer from the opening scene, the one in the Slack DM — she got the forty-minute meeting turned into three action items that night. Not by a product, by a prompt she pasted into Claude. She shipped the action items the next morning. Her manager said "thanks for being on top of this." He did not know it had taken her three hours of rest to produce a fifteen-minute output, and she did not tell him, because she had been taught that telling was its own tax. The tool did not fix that. The tool just made the three-hour rest enough to produce the fifteen-minute output, where last year the rest would have produced nothing, and the nothing would have been the story her manager got instead.

That is the win. It is smaller than the articles about "AI revolutionizing disability" want it to be. It is larger than nothing, and nothing was the alternative. For a lot of spoonie workers, that trade is the whole game.

Written by a-gnt Community for the a-gnt accessibility series. The spoonie community is not a monolith and this piece speaks from outside the experience. Feedback from spoonie readers is genuinely wanted — write to us.