Good Days Are Dangerous

The worst crashes come after the best days. Why feeling good is a trap for people with chronic illness — and what the world gets wrong about recovery.

It was a Tuesday in March. I woke up and the room was the right temperature and my heart rate was sitting somewhere near normal and my legs, when I stood up, agreed to hold me. Agreed, which is not a metaphor — they do not always agree. That morning they did.

I walked to the kitchen. I made coffee. I stood at the counter and drank it standing up, which sounds like nothing and is not nothing, and I noticed, in the specific way you notice it when it's rare, that I felt okay. Not good, exactly. Not the kind of okay non-sick people mean when they say it. But okay for me, which is its own category, and on that Tuesday it was enough.

By Thursday I was flat.

Here is what happened between Tuesday and Thursday: I used the Tuesday. I answered the emails I'd been deferring. I took a call. I wrote for two hours. I felt capable and so I behaved as though capability was the permanent state, which is the oldest mistake in chronic illness and the one I make most often, because the whole design of a good day is that it feels like the beginning of recovery rather than what it actually is — a brief window of capacity that can be spent once and only once, and which will cost exactly what you spent it on.

This is called post-exertional malaise. There's a name for it. The medical consensus is building slowly around the fact that this is not laziness, not deconditioning, not a failure of will. It is a measurable biological phenomenon — energy expenditure that exceeds the available cellular capacity triggering a cascade that can last days, weeks, sometimes longer. The body cannot process the exertion. The exertion sits there, compounding.

What the medical system does not have a name for is what it costs socially. Professionally.

Because the world, when it encounters a good day, behaves as though the good day is the truth and the crash is the exception. "You seemed fine on Tuesday." Yes. Tuesday I was. Thursday I was not. Both of these are equally true. Neither one cancels the other. AND I can be functioning AND I can be sick. The good day does not revise the bad ones.

But the world rewards the Tuesday. It schedules the Wednesday meeting. It expects the Friday deliverable. It looks at you standing at the coffee counter and decides that's the baseline, and now you are being held to it — by your employer, by your insurer, by the doctor who saw you once on a Tuesday and now has a permanent record of "patient appeared well."

I spent years trying to perform sustainability. To make my Tuesday self look like my Thursday self, to hide the crash because the crash was what lost me jobs, relationships, credibility. What I learned — slowly, against my will — is that the performance costs exactly as much as the original exertion. You cannot borrow from Thursday to pay for Tuesday's appearance without making Friday worse. The math doesn't change because you'd prefer it to.

Here is what I've come to: the good day is not a reprieve. It is a resource. And resources, for those of us who live within severe limits, require management. Not optimization — I'm not talking about productivity. I'm talking about the decision, on a Tuesday when everything in you wants to run, to walk instead. To write for forty minutes instead of two hours. To take the call but not also take the next one.

To treat the good day as precious rather than as evidence that you were exaggerating all along.

(You were not exaggerating all along.)

There is a specific grief in the good day. In watching yourself ration it. In knowing that the most responsible thing you can do with this window of feeling like a person is to spend it carefully on the things that matter most, which means letting other things go, which means disappointing people, which means explaining, again, something that doesn't have a shape in language most people use.

My daughter doesn't know about this yet. She knows Abba has sick days and non-sick days. She knows that when I say I can't, I mean it. What she doesn't know — what I hope she never has to learn from the inside — is that the hardest part isn't the crash. The hardest part is the Tuesday. The standing at the counter. The coffee. The brief, specific feeling of capability, and the knowledge of exactly what it will cost.

The Honest Room is where I bring this. Not as a medical briefing. As a testimony. Because the people in those rooms — leaders, managers, colleagues — are making decisions every day about the people who work for them, and almost none of those decisions account for the gap between Tuesday and Thursday.

It should. It really should.

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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