The Body Tax

Dealing with pain that doesn’t have a name

Category: The Body

This booklet is for people whose bodies hurt in ways that don’t show up on tests. Pain that’s real but not diagnosable. Symptoms that are legitimate but not believed. You’re paying a tax. A body tax. The cost of living in a body that hurts for reasons no one can explain.

When Doctors Don’t Know

The tests come back normal. Everything’s normal. You’re not normal. You’re in pain. But according to the tests, you’re fine. ‘All your tests look good.’ They say this like it’s good news. Like you should be happy. You’re not relieved. You’re still in pain. The normal tests don’t make the pain less real. They just make it less believable. Less treatable. Less real to everyone but you.

The Dismissal

‘It might be stress.’ This is code. Code for: I don’t know what’s wrong with you. Code for: maybe it’s in your head. Stress is the catch-all. The explanation when there’s no explanation. The stress explanation feels like dismissal. It usually is. ‘Some people are just more sensitive.’ This is code for: you’re overreacting. The sensitivity explanation invalidates. Makes your experience your fault.

The Daily Cost

You’re paying a tax. A body tax. The cost of living in a body that hurts for reasons no one can explain. The tax is daily. Constant. Invisible to everyone but you. This booklet won’t fix it. Nothing can promise to fix it. But it can acknowledge what you’re carrying. And maybe that acknowledgment is worth something.

Good Company

Doing Harm — Maya Dusenbery, 2018
Dusenbery investigated the two ways medicine fails people with unexplained pain: it either tells you nothing is wrong or tells you it’s in your head. She traces the history with precision, whose pain gets believed, whose gets dismissed, whose gets a name and whose doesn’t. It’s angry in the way that thoroughly researched books earn the right to be. The book that proves the system’s failure isn’t your imagination either.
Unrest — Jennifer Brea, 2017
Brea was a Harvard PhD student when her body stopped working. Doctors told her it was psychological. She picked up a camera and started filming from bed. The documentary she made is part memoir, part investigation, part act of defiance against a medical system that responds to pain it can’t name by pretending it doesn’t exist. It’s the most precise film about the experience of being sick and not believed.
GREY Area — Little Simz, 2019
Simz made an album about living between categories, too much for some rooms, not enough for others, never quite legible to the systems that claim to measure you. It’s controlled, fierce, and full of the energy of someone who stopped waiting for permission to be taken seriously. The sound of existing in the unnamed space and refusing to disappear from it.