The Grim Appeal of Diagnosing Yourself on the Internet

I’ve had three different mysterious chronic illnesses. Each time, the struggle to figure out what was wrong drove me further down the online rabbit hole.

Illustration by Jaedoo Lee

It was easier to search at night when it was quiet. I kept up the ritual the way I kept an eye for dying leaves in my houseplants: focused on the excavation, with a sense of obligation but also a mild, almost pleasurable buzz.

On my computer, I could just drift for a while, letting the paragraphs soothe me as I scrolled. I sat cross-legged on the couch and skimmed through last night’s search history: blocks of text from the National Institutes of Health and MedicineNet and blood tests I’d checked on Lab Tests Online. I copied and pasted medical vocabulary from my hospital’s digital patient portal into my search bar, studying the associated conditions for positive antineutrophil cytoplasmic antibodies (ANCA) levels, looking up human leukocyte antigen (HLA) alleles with their corresponding suffixes, letting acronyms blend together into alphabet soup on the screen. Every combination of that day’s symptoms could be Googled. Every amalgamation of keywords led to a new landing page.

As I skimmed, I felt myself relax. I imagined a life in which I could adjust to whatever scenario popped up in front of me — the medications I would take and the new routines I would adopt. I’d make room in my life for whatever condition I had. Finally, I’d be able to calm down and move forward.

I never wanted for information. The problem was that I didn’t know what I was looking for.

It began with a cough. A dry, ordinary cough, absent any fluid or resonance that would make it interesting, that appeared one bleary fall New York morning and lingered throughout the day. I didn’t feel otherwise ill, but carrying around the cough was annoying the way a backpack on a crowded subway car is annoying, and I wondered when I’d be able to unload it.

But the cough didn’t go anywhere. It kept me company throughout the day, punctuating bored silences at work. Over time, it began deepening. At night, the effort to force it out of my lungs would tentacle across my breastbone. When I lifted my…