When doctors don't know what's wrong

In 1980, 25-year-old Louise Proctor was walking up a hill during her lunch break in rural Kentucky when she felt an excruciating pain and a bizarre sensation—her legs felt like they were turning to stone, freezing in place so she couldn't take another step. That moment launched a decades-long medical mystery that would eventually reveal deep problems with how the healthcare system handles diagnosis, and point toward possible solutions.

Louise's doctors initially told her she needed more exercise or had early arthritis. Prescribed medications had no effect. The pain grew worse, and the distance she could walk without agony shrank. For decades, she felt nobody believed her. She otherwise appeared healthy, and when she needed accommodations—a wheelchair at the airport—people looked at her like she was exaggerating. Meanwhile, her infant daughter Suzanne was diagnosed with cystic fibrosis, a fatal disease with few treatment options at the time. When Suzanne died as a young teenager, the tragedy came with a stark contrast: the diagnosis gave her community a framework for understanding and support. Louise had no such framework for her own suffering.