I talked to Australian Appearance Activist and writer, Carly Findlay, about her experience living with Icthyosis, telling our stories on our own terms, the value of our personal information, identity, and the Australian healthcare system. She also told me about living through my worst nightmare when one of her photos was misused and went viral on Reddit.Read More
CW: death and dying
It’s our first birthday episode! I decided to do something a little different with it, and asked my oldest friend Casey to interview ME. We talked about why I started the podcast, what the experience of producing it has been like, how it’s been different than what I expected to do, and what might be in store for year two.
This project was produced for the 2016 Stanford Medicine X ePatient Storyteller Track: I am an artist, health advocate and podcaster who has lived with complex chronic illness, and the chronic uncertainty that comes along with it, for more than two decades. As someone juggling multiple invisible illnesses, much of my work has been about visibility, and making visible what has previously been unseen. In my attempts to seek diagnoses and validation, I have used many of the quantitative symptom tracking apps that have been available for iOS in recent years. The Instagram account, @bimpsegetsweird, is my attempt at qualitative self tracking to better capture my quality of life, which has too often been underrepresented in other self tracking data.Read More