Chapter 21: What Do Patient Advocates Do?

How You Can Become An Advocate, Too.

A Guide To Surviving American Healthcare was designed to teach you how to protect yourself and your loved ones in any medical encounter. If you continue to follow these steps, you now have the tools –– and confidence –– to advocate as a patient and a caregiver. Congratulations!

But sometimes knowledge and self-assurance aren’t enough. When my first major diagnostic odyssey happened, I spent four years in full body pain searching for an answer. I had some of the tools but not enough to be a relentless advocate for myself. My daily nonstop pain robbed me of the energy, mental bandwidth and patience needed to get –– and recognize –– an accurate diagnosis. It took every ounce of energy to get out of bed in the morning, get my elementary kid off to school with his paper bag lunch, walk the dog and then crawl up the stairs and back into bed. Often, I didn’t make it past the den. I got a diagnosis eventually, after a lot of setbacks, dismissals, gaslighting, false prophets and condescension.

W…