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As a linguist, I want to find the words to measure chronic illness
So what words can I, a linguist and a patient with sensations perceivable only to me, use to fully capture these mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS) sensations to my providers? And, more generally, how can we measure our unsettling internal realities if we can’t even name them?
Heather Hogan / The Sick TimesLet me paint a scene that is all too familiar: I’m not feeling well (again), I go to the doctor (again), they take some blood (again; I turn my head away) and poke at me in whatever way my insurance company deems appropriate. Researchers and clinicians have developed ways to measure some difficult-to-capture internal sensations, but many of these tools are either incomplete or haven’t been fully validated to ensure that they’re actually useful for patients and doctors alike. These are the moments that flash through my mind when discussing test results, seated in a sterile blue-gray room, holding back my tears until I can cry on the 6 train and intellectualize everything like a real adult.
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