A Linguist's Struggle to Articulate Chronic Illness Symptoms

Let 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.

The result is a long sheet of seemingly arbitrary numbers that indicate something about my metabolic processes and the resulting sensations, and I leave without much information aside from some variation of: 'These tests tell me that your body seems to be functioning the way everyone else’s is. So we leave you linguistically empty-handed.'

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?