Ladies and Gentlemen, Here Are My Organs

Written by Amanda Lehr / Illustration by Sólveig Eva Magnúsdóttir

One of my favorite Monty Python skits — the “Summarize Proust Competition” — features several contestants scrambling to describe all seven volumes of In Search of Lost Time in 15 seconds.

I always feel a little like this when I have to give a new doctor my medical history.

My chart is a three-decade pileup of multisystem autoimmune disorders— one of which wasn’t accurately diagnosed or treated until last year. For all their failings, the beautiful thing about labels is that they give you a shorthand to communicate with your medical team: “I have _____.” But, when still you’re trying to figure out what’s wrong with you, it puts a lot of pressure on you to tell your story “right.” Am I being precise and detailed enough to be helpful? Do I seem like a reliable narrator of my own body? Am I showing how much this affects my day-to-day life without coming across as “hysterical”? (A particular source of pressure if you’re a woman and/or a person of color.)

Over time, I’ve realized that the process of giving history can feel like making myself into a museum exhibit. With a diagnosis, my body has already been properly “labeled” and contextualized for doctors to understand. When all I have are symptoms, however, I feel more like a Renaissance prince’s cabinet of curiosities — a little display of oddities, aches and pains, rashes and reactions, bones and teeth, naturalist sketches of me at my worst. Holding myself open, I invite the doctor to peer inside, poke around, please explain. Have I curated my collection well enough? Tell me that this all means something. Tell me what I am.

Engraving from Ferrante Imperato, Dell'Historia Naturale (Naples 1599). Public domain via Wikimedia Commons.

Of course, like most museums, this one costs something: money and time. Every exam requires a new trip, a new co-pay (if you’re fortunate enough to be insured), and, if your questions go unresolved, a wait for yet another appointment. As of right now, I’m rounding one year of stability because I had access to care that brought me to an answer. But, if you’re a sick person in this country without the right combination of resources and dumb luck, your quality of life pays the price.

Written by Amanda Lehr / Illustration by Sólveig Eva Magnúsdóttir