What It Actually Costs

The invisible energy tax of every action — not just the physical cost, but the social, professional, and emotional cost of living within severe limits.

A phone call costs me two hours. Not the call itself — the call might be forty minutes. The two hours is the aftermath: the elevated heart rate returning to baseline, the cognitive fog clearing, the specific tiredness that comes from sustained social contact when your nervous system is dysregulated and treats every stimulus, including friendly conversation, as a potential threat to be processed.

This is not metaphor. This is the actual time equation.

People do not know this. Why would they? The cost of a phone call is not visible. What is visible is: the call happened. Roi talked. He seemed fine. He was lucid and engaged and even made a joke at one point. The call is over. Now he has the afternoon.

What he actually has is a debt that comes due over the next two hours. What he will do with those two hours is not the work he had planned. It is the recovery from the work of talking on the phone.

There is a term in the chronic illness community: spoons. The spoonie economy. The metaphor, coined by Christine Miserandino in 2003, describes limited energy as a set of spoons — a fixed daily allocation that depletes with each activity and doesn't automatically refill. I've used this metaphor in talks, in writing, in conversations with people who are trying to understand how my capacity works. It's a useful metaphor. It is also, like all metaphors, partial.

What the metaphor doesn't capture is the taxation structure. It's not just that activities cost spoons. It's that certain categories of activity carry hidden costs that aren't visible at the time of transaction and only appear in the accounting later.

Here is the full cost of a single meeting with an accommodation request:

The meeting itself. The preparation for the meeting (reviewing materials, orienting myself, managing anxiety about whether I'll have enough capacity to participate adequately). The communication requesting the accommodation (explaining my needs, which requires deciding how much to disclose, which requires evaluating the relationship and the power dynamic). The wait to see whether the accommodation is granted. The emotional labor if it isn't. The social recalibration if the person's response — even if technically positive — came with a tone that registered as reluctant or inconvenienced. The post-meeting processing.

The meeting was one hour. The total cost was a day.

This is not unusual. This is every accommodation, every explanation, every time I have to translate my experience into language that the other party can receive without being made too uncomfortable. The translation has a cost. The repeated need to justify the translation has a cost. The awareness that the cost is invisible to everyone I'm justifying myself to has, itself, a cost.

I want to talk about the professional cost specifically, because it's the one that's most systematically underacknowledged. Pacing yourself visibly has professional consequences. Declining a meeting because you need the energy for the actual work — not because you don't care about the meeting, but because you have a fixed allocation and you've chosen to spend it on the thing that will produce the most value — reads, in most professional contexts, as disengagement. As lack of commitment. As not being a team player.

The person who is pacing for survival is evaluated by the standards of someone who isn't. The evaluation is not malicious. It is structural. The system wasn't designed with variable capacity in mind. And changing that — making systems that can actually account for variable capacity — requires first making the cost structure visible, which requires the people who live it to spend energy explaining it, which costs energy they don't have.

(I know how this circles. It circles on purpose. That's how traps work.)

Here is what I want people to understand who don't live inside this: the invisible tax is real. When someone with chronic illness accomplishes something — ships a project, attends an event, holds a meeting — they have paid for it in ways that aren't visible in the output. The output looks the same as the output of a person who didn't have to pay the tax. The cost is not the same.

This is not asking for credit for suffering. It's asking for accurate accounting. The accounting changes what you ask of people. It changes what you call reasonable. It changes, fundamentally, what you understand about what it costs to show up.

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