If you also have a complex chronic illness, you’re probably familiar with this experience. These conditions and diseases create a massive linguistic gap that can be difficult for patients to bridge — and even more difficult for medical providers because they don’t experience what we do every day in our bodies.
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? How do you effectively measure something like pain, cognitive dysfunction, or feelings of noodliness when so much of medical measurement is reliant on readily observable phenomena — or, stuff that usually has really precise words?
In these moments when I am overwhelmed by this gap, I remind myself that immaterial to others doesn’t mean unreal — and that, after all, people have words to explain immaterial concepts like gods and quantum physics. The words for these unseeable sensations in my body must exist somewhere, and it’s up to patients and healthcare providers to work together to either find or invent them.
