Heather Hogan / The Sick Times
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, without a diagnosis or words for these sensations. In conclusion, you’re fine.”
Then why do I feel like I’m full of noodles and static electricity? Where’s the electric noodle test, Doc?
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.
My body has always been quick to reject the world. With a family full of medical anomalies, I knew I would one day get my own diagnoses. Growing up, I had seen women in my family suffer from things that were readily dismissed by both clinicians and the general public — namely, chronic pain, fibromyalgia, and migraines. There was never a doubt in my mind that these illnesses caused suffering in the bodies of the people I cared about, even if I couldn’t see or feel the sensations that characterize them.
Eventually, many of these sensations would manifest in my own body. They are bizarre, uncomfortable, and painful sensations that I frequently struggle to find the words for.
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