As a linguist, I want to find the words to measure chronic illness

Article is a long, personal story conveying the human cost and context of a simple-to-understand problem. If you have experienced this yourself - and most have to some degree - then all the description is unnecessary. Which seems appropriate - how do you convey an internal personal experience - maybe lots and lots of talking with metaphors and emotions?

The health-provider side has the problem that some people are faking it, some are seeking attention or drugs without a condition, and some are needlessly suffering but won’t say so. Also, they don’t have the time.

This is a wicked problem for a system to have - there are malicious actors and incompetents on both sides. The current systems of half-century-old 1-10 scores is frustrating and simplistic.

TFA is not saying the solution is for all patients to get an English degree - I think. The worksheet they show as an improvement is dramatically more complex, hard to read, and undoubtedly more accurate than the old 1-10. That’s not a clear ‘win’.

Also, why have we accepted these simplistic tools for so long? Maybe there is little to be gained by improving them - or maybe the incentives are misaligned.

It’s a good problem to work on

I moderated a panel of some doctors about chronic pain. One of the big things that came out of that, for me, was how they describes how the relationship with pain changes when it becomes chronic.

Most times if you experience pain, you want it gone, either with rest, medication or whatever.

When you are dealing with chronic pain, the relationship changes to something described as spousal. You have to negotiate your life around the pain.

It's hard to describe pain. For me an injection is a 1. But some people have full on panic attacks if they even see a needle.

A friend was at the doctor's office and described their pain as a 4, but the doctor noted they were sweating in a cold office, and reclassified it as at least a 7.

I've had post surgical pain so bad that it pushed my spirit slightly out of my body, is a very odd feeling, which I calibrated to my new 10, which may have led me to describe my gallstones as too low.

A heart attack is often described as the worst pain ever but many women ignore that symptom because giving birth, kidney stones and their periods were worse pain.

Part of measuring pain is what you can't do. Sometimes you do less, sometimes you can't do anything at all, but it would be nice to be believed.

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