The Metrics We Don't Have

Someone told me my book helped them while bedbound. I had no way to measure it. On the gap between the impact that gets tracked and the impact that actually matters.

She sent a short message. No preamble, the way sick people often communicate — conserving energy even in syntax. She had read *Revolution from My Bed* when she was six months into a relapse, horizontal, convinced she had lost the thread of her own life permanently. She said it was the first time she had felt recognized rather than advised. That was the word she used: recognized.

I sat with that message for a long time. And then I went back to my dashboard.

Sessions: 1,247 this month. Average session duration: 4 minutes 12 seconds. Bounce rate: 64%. Book sales: trackable, tagged, attributed. Newsletter opens: percentage, trend line, comparison to last period. Everything quantifiable was quantified. The woman who read my book at 3am in a relapse was not quantifiable. She was also, by any measure that actually mattered, the entire point.

There is a name for this. It's called the methodology problem. Not my methodology — the measurement methodology we all inherited from systems that were built to count things that are easy to count, and then mistook counting for knowing.

What gets measured: reach. What doesn't get measured: resonance. What gets measured: transactions. What doesn't: transformation, if it even happens, which is slower than any reporting cycle and largely invisible. What gets measured: the click, the open, the download. What doesn't: the person who reads the same paragraph six times because it finally gave them words for something they had been living for years without language.

I have spent a significant part of my working life producing things — books, talks, programs, organizations — in a healthcare and patient advocacy context where the standard metrics feel particularly inadequate. Not because impact doesn't exist. Because the impact that exists doesn't fit the available containers.

Here is a specific example. A book that helps someone with chronic illness understand their diagnosis is measurably different from a book that helps them understand their identity. The first is a health information resource. You can track it. The second changes how someone tells their own story, which changes what they believe is possible, which may — over years — change the trajectory of how they manage their condition, how they advocate for themselves in medical settings, how they talk to their family, how they parent. You cannot track that. There is no dashboard for it. AND it is far more important than anything the dashboard shows.

I don't have a solution. I want to be precise about that.

I have some partial things. I have anecdote, which is undervalued — not because it isn't rigorous, but because it carries information that aggregates erase. The woman and her message is not a data point. She is evidence of a specific kind, which is: someone who needed language and found it. That happens or it doesn't, and surveys don't capture it, and retention rates don't proxy for it, and I built the work that produced that moment without any tool that could tell me, at the time, whether it was working.

What I do now is track differently. Not instead of the numbers — the numbers matter for sustainability, for resources, for understanding what's reaching whom. But alongside them, I hold the messages. The ones that arrive with no preamble, conserving energy even in syntax. I hold them as evidence of a thing that happened, that the dashboard doesn't show and wouldn't believe if I tried to enter it.

The hardest part of building anything in the patient advocacy space — and I know this from eight organizations, from books, from a career in this territory — is that the people you're building for are largely too exhausted to participate in your metrics. They cannot fill out your surveys on bad days. They cannot attend your webinars in real time. They experience your work in the gaps, in the middle of the night, in the specific way that sick people encounter things that are made for them: alone, often, and at hours that don't register in analytics.

The system invented the dashboard. It did not invent the recognition. One of these is what I'm actually trying to create.

I'm still figuring out how to report on it.

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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