Billie, a lifetime EDS (Ehlers-Danlos Syndrome) veteran with ten years of actively seeking help in the healthcare system, guides us through some basics of surviving severe sickness and loss of ability be it temporary or permanently. Content warning: this content might be hard for some folks, so please give yourself permission to turn it off or take some space from it for a while. We talk about losing the embarrassment around disability and using grieving as an opportunity to move through loss and grief towards exploration of new and interesting parts of the human condition.
My personal feeling is that in some ways we’re explorers getting to navigate uncommonly traversed parts of the human condition. That’s easy for me to say right now when I’m not on the floor of my bedroom crawling towards the toilet with 9 out of 10 pain. It certainly has adjusted who I am and how I relate to my body. It has certainly changed how I process messages from my body. It’s like – when your body texts in all caps, you just get used to it after a while. It’s not that it’s any easier, but you get stronger at breathing and surviving, and in that experience comes a relief of the fear that comes when you’re not sure if you can make it or not.
This session is split into two parts: this episode, and the next one on grief, loss, and having funerals for our abilities. Content warning: this might get graphic. For now, let’s start the conversation about positives, coping, and managing chronic illness here with Billie on Intimate Interactions.