1 min read

My Advocacy Origin Story

A monster is just barely visible at the end of a path through some dark woods.
Photo by Mariusz Słoński / Unsplash

Once upon a time I was a healthy twenty five year old woman with plans of her own, until a monster took a bite out of my left hip. It must have been a delicious hip, because one bite wasn’t enough. It moved on to gnaw on my neck, back fingers, toes, and elbows. 


The monster dug in its fangs to suck away my energy, academic career, and many friendships. Its power waxed and waned, but it was always there.

On my own

Doctors with the best of intentions had pamphlets, pain meds, and a vague faith that exercise and a good life-style would help. None of them could tell me what it would mean to have Ankylosing Spondylitis, an invisible disease that can touch any part of the body. They didn’t tell me how to manage living in a body that looked fine on the outside but felt like the Devil’s Swiss Cheese on the inside. 

Super Powers

A radioactive spider bite turned Peter Parker into Spider Man. I was bitten by an endless stream of repeating patient questions posted in the comments sections of websites for folks dealing with arthritis, lupus, fibromyalgia, and other life-altering illnesses. Many years after my diagnosis the questions remaind the same. A dedicated cadre of patient advocates, social workers, and other helpers do their best to take them on, but this Stubborn repetition demonstrates a fundamental crack that patients and those close to them continue to slip through.