Two responses to the same pain, a decade apart

How having the right diagnosis transforms my relationship with my symptoms

“When you hear hoofbeats, think horses, not zebras” — Medical zebra aphorism, coined by Dr. Theodore Woodward, University of Maryland professor, late 1940s

The prolonged search for my diagnosis

Without an overarching diagnosis, each specialist struggled to adequately manage my symptoms — let alone identify their cause.

Because medical schools teach doctors to look for horses, not zebras, many people with hEDS have stories like mine.

The power an answer can hold

Since being diagnosed, I haven’t had any urgent visits, and doctors have been able to order relevant tests and treatments.
Simply adding “hEDS” to this search eliminated some of the fear-mongering questions Google thought I’d find useful, like “Is heel pain a sign of cancer?”

Ryan received xyr AA in ASL (2019) & is studying Science Journalism for xyr BA (Evergreen State, 2021). Xe is an Autistic, queer, non-binary crip.

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