I talked to Ryan Prior, co-director and producer of Forgotten Plague, a documentary about ME/CFS. I made Ryan hold the microphone because my arm was tired, and he wound up kind of interviewing me a bit. We talked about ME/CFS, POTS, how the two patient populations overlap, and some of the performative aspects of being a patient. I talked about living with and trying to manage POTS, quality of life, and try to answer the question posed by the MedX Studio Space of how to foster disruptive co-creation in healthcare.Read More
CW: eating disorder
In today’s episode I talk to Sofie about her experience in the Norwegian healthcare system as a patient with complex chronic illness. We talk about her experience trying to find a diagnosis that fit her symptoms, how EDS is classified and treated in Norway, and our complicated relationship with weather. In today’s bonus episode, we talk a little more in depth about the interplay between chronic illness and eating disorders, and about the ableism present in many diet communities.
This week’s episode is one to honor Ehlers-Danlos Syndrome Awareness Month, as well as many of the other poorly understood, under-diagnosed conditions that disproportionately affect women, which share May as an awareness month. This episode is actually a re-run of my interview with Rebecca from episode 03, but with an updated introduction and new links on the episode page.Read More
In this week’s episode, Beth talks about the current disability benefits situation in the UK. We talked about the cuts to disability programs, the recent surprise resignation of the mastermind behind many of these cuts, and the NHS approach to pain management—or lack thereof.
In today’s main episode Jen talks about needing regular opioid pain medication at a time when those medications are public enemy number one. We talk about why she needs access to these medications, how we deal with drugs here in the US, how that has created a climate in which we can't have open and honest conversations about drug use, and how challenging it can be to really treat chronic pain. We discuss the important distinctions between addiction, abuse, and dependence, and the many tradeoffs and compromises we often have to make in treating chronic health conditions.Read More
In today’s episode Cara talks to K about what is considered "normal" vs. "disordered" behavior, being non-gender, the intersection of fat hatred, sexism + ableism, embodying the fears of the able bodied, imagined expertise, and the dual reality of self diagnosis—especially for those living with difficult to diagnose conditions.Read More
Cara and Rebecca invite you to challenge some of what you think you know about disability, and the cultural messages we get about what a Disabled Person is. They discuss self advocacy, Rebecca's work toward better accessible transit options for Philadelphia and plans for a queer disability justice project, diversity of disability, and some of the social and economic issues that face the chronically ill and people with disabilities. At the end they talk about what they worry about, SSDI, and Imposter Syndrome.Read More
Becca talks about having Giardia as an infant, traveling with an unpredictable chronic illness, having brain surgery—twice, the wonders of high sodium diets, and her video game web series, Millennial Fair.
She lives with Ehlers-Danlos Syndrome, Arnold Chiari Malformation, and POTS.Read More
In today’s episode, Rebecca talks about the ups and downs of EDS, their long and winding diagnostic process, working 10x as hard to be half as healthy as everyone else, and redefining their value while not being able to work a paying job.
Next week I’ll be posting part two, where we talk about Rebecca’s advocacy work toward accessible transportation in Philadelphia, some of the social and economic issues facing the chronically ill and people with disabilities, reconceptualizing disability internalized ableism, and diversity of disability.
They live with Ehlers-Danlos Syndrome (EDS), dysautonomia including POTS, Mast Cell Activation Syndrome, gastroparesis, and several other diagnoses.Read More