Someone without fibromyalgia sits at their desk, drinks their coffee, works for a few hours. Gets a little sluggish around three. Pushes through.
My day has a few more moving parts.
There's the brain fog that turns a simple email into a twenty-minute project. The spasm that shoots through my neck mid-sentence, which my face apparently announces before I can stop it. The moment around noon when I have to make a real decision about whether to keep going or lie down for twenty minutes — and whether lying down is "giving in" or just... logistics.
It's not catastrophic. It's just different. And for a long time, I spent a lot of energy trying to make it look the same.
Here's what I've noticed, both in my own experience and with clients: a huge amount of our energy doesn't go into the actual work. It goes into performing the work. Into sitting upright when you'd function better lying down. Into staying on the call for another twenty minutes because you don't want anyone to ask questions. Into hiding the grimace.
I wrote about this in The Performance of Looking Fine — the energy it costs just to appear okay. Work is where that performance gets most expensive.
The performance is exhausting in a very specific way. It's not tiredness you can sleep off.
And it's optional.
Working with Fibromyalgia: Output Over Performance
Nobody who reads the report knows you wrote it from your bed with a heat pad on your lower back.
Nobody who sits through the well-run meeting knows you took a thirty-minute nap at two and that's why you could actually be present. If the output is good — if the work is done, and done well — that's the thing that matters. The rest is theatre.
Work culture is built on the image of productivity: showing up, being visible, looking like you're on. Chronic illness sits badly with all of that.
But a well-run meeting is a well-run meeting. A good report is a good report. Whether you wrote it from your desk or your bed doesn't change what it is.
Building a Workday That Works with Chronic Illness
A useful framework here is separating the deliverable from the process.
The deliverable is what you owe. The process — the hours, the posture, the way it looks — is more flexible than most of us were taught.
In practice, this means working in short blocks when the brain is clear, and switching to lower-stakes tasks when it isn't. It means treating a midday rest as part of the workflow, not a failure of discipline. It means auditing which parts of your day are actual work and which parts are just the performance of work.
Here's what I've noticed: when people stop spending energy on the performance, some of it comes back for the actual thing.
The goal isn't to disappear into your illness at work. It's to stop spending your limited capacity hiding it.
What would your workday look like if you built it around your actual capacity, not the one you're supposed to have?
This is something I work on with clients navigating career and chronic pain. If it resonates, feel free to reach out.