A hand hovers over the scale, unable to land on a single number — because no number was ever going to be enough
“How much does it hurt, from 0 to 10?”
The number never explained anything to anyone. With autoimmune disease, pain is almost always invisible — no cast, no bruise, nothing for the listener’s eye to anchor to as proof of real suffering. It’s not just that the pain doesn’t show. It’s that when someone minimizes it — even unintentionally, even out of affection — research has a name for that: invalidation, and it’s a measured phenomenon. A 2009 study on fibromyalgia patients describes it as one of the most damaging experiences patients report. A 2021 European qualitative study on patients with Sjögren disease confirms the same thing: the lived experience of the disease is shaped as much by the symptoms themselves as by the exhausting work of constantly justifying them to people who can’t see them.
So I learned to use images instead of numbers: I say it feels like a dog is tearing the flesh off my bones, like electric current running through my body, like I’m sealed inside a glass bell jar. That’s not a poetic choice. It’s the answer to the question I’m actually being asked, when that question expects a number and I give an image instead.
It’s not a linguistic quirk. In 1975, psychologist Ronald Melzack built the McGill Pain Questionnaire precisely because a single numeric scale wasn’t enough: pain has at least three distinct dimensions — sensory (what you physically feel), affective (how much it tortures you), evaluative (how severe it is overall) — and compressing all three into one number from 0 to 10 throws away exactly the information the listener needs to understand what you’re actually living through. A 7 could be a localized electric shock or a full-body vise grip: identical numbers, incomparable experiences. An image, on the other hand, carries all three dimensions at once. A number gets forgotten. An image stays.
But that was the question for other people. The question for myself was different, and for years I gave it the same wrong answer.
I used to wait to recognize it in my own eyes. I’d look in the mirror, and when I wasn’t there anymore — when what I saw didn’t look like me — I knew it was time to stop. The problem is that a mirror is what engineers call a lagging indicator: a signal that confirms a collapse that’s already happened, not one that predicts it. Waiting for the mirror meant I always stopped after the point where I should have stopped, never before. I wasn’t reading a warning sign. I was reading the report of damage already done.
Now I stop earlier. Not because the pain hurts less, but because I stopped waiting for “how do you feel” — a question that, turned on myself, produced the same poor answer as a number from 0 to 10 — and learned to look for leading indicators instead: signals that arrive early enough to still be read, instead of just endured. I stop before it becomes pain that stops me — while it’s still pain I can manage, pain I can still read. Not “how am I?” but “where do I feel the steadiest contact right now, before the story starts telling itself?”
There’s a deeper reason both the number and the mirror always arrive too late, and it’s the same reason the cold floor of Romeo — the expedition truck I live in full-time, traveling the world — works when the mental story doesn’t. The number I give when asked “how much does it hurt, 0 to 10” isn’t raw data: it’s already an interpretation, produced by the same predictive system that, in chronic fatigue, has learned to trust its own narratives more than the body’s actual signals. Asking myself “how do I feel” doesn’t measure the state — it narrates it, through the same filter that has already decided in advance what to expect.
That’s why the wrong question doesn’t just produce a poor answer. It produces an answer generated by the very problem I’m trying to detect.
A number and a mirror are both outputs of the narrator. The contact under my feet, the rise of my breath — those don’t pass through that filter. They arrive before the narrator has time to step in.
This is the heart of SENSE, the first pillar of The 4S Method of Adaptive Intelligence®: not a vague question aimed at a symptom that’s already exploded, but a standing habit of reading, applied before it’s needed — the same way an engineer doesn’t wait for the failure to check the system’s signals.
If you’ve also learned to listen to yourself only once your body screams loud enough to show up in the mirror, you’re not behind. You’re simply using the wrong instrument to ask the right question.
This is what The 4S Method of Adaptive Intelligence® teaches, before anything else: the right question is never “how do I feel” — it’s “what am I not seeing yet.” The mirror will always tell you last.
Sources
Melzack, R. (1975). “The McGill Pain Questionnaire: Major properties and scoring methods.” Pain, 1(3), 277-299: https://pubmed.ncbi.nlm.nih.gov/1235985/
“Understanding the lack of understanding: invalidation from the perspective of the patient with fibromyalgia” (2009): https://pubmed.ncbi.nlm.nih.gov/19950317/
“The Experiences of Functioning and Health of Patients With Primary Sjögren’s Syndrome: A multicenter qualitative European study” (2021): https://pubmed.ncbi.nlm.nih.gov/34869487/
Stay in The Loop
I share the next piece as soon as it’s out — free, no funnel, just the article — on my WhatsApp channel: The 4S Method of Adaptive Intelligence®