Patient name: Abby
Friend of the podcast Abby Norman (from episode 16) and I got together to debrief about the Endometriosis Foundation of America conference we attended. We actually didn't wind up talking about it much (sorry! ¯\_(ツ)_/¯), but we covered some of it, what patients really need until there's more consensus on how to treat the condition, medical debt, menstrual stigma, bleeding on things, personal care, and living with chronic fatigue.
Check out Abby's Medium publication, Ask Me About My Uterus, and listen to her first episode + bonus episode about her personal experience with Endometriosis, how difficult it can be to get diagnosed, having others value her fertility and the satisfaction of her male sexual partners above her own health and quality of life, and the book deal she recently signed to write about it all. Her book FLARE will be published by Nation Books.
Listen and subscribe to In Sickness + In Health: A Chronic Illness Podcast wherever you get your podcasts.
What is Endometriosis? from the Endometriosis Foundation of America
My post about the Endofound Patient Awareness Day
It was Lone Hummelshoj of the World Endometriosis Society who gave that great talk about painful sex with Endometriosis
Jhumka Gupta, MPH, ScD had a great talk about framing Endometriosis as a public health and social justice issue, which she also wrote about for the Huffington Post
Find out more about opportunities to participate in research
Endofound’s ENPOWR Project
"How medical debt in the US just got (a little) less scary” from The Guardian
"Kiran Gandhi discusses free-bleeding while running the London Marathon, and using the period as protest” from NYTimes Women In the World
"I'm Chronically Ill and Afraid of Being Lazy” by Esmé Wang on ELLE.com
"But You Look Good: Living with Disbelief of Invisible Illness and Pain” from The Princess in the Tower