I talked to Allie Cashel, author and co-founder of Suffering the Silence about her book, the current state of the complicated issues related to Lyme Disease, writing, certainty, and the stress of living with Lyme Disease and all its baggage.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 I talked to Nikki about qualifying and listing for a double lung transplant due to her rare disease LAM. We talk transplant stuff and get Nikki’s insider perspective on the American healthcare system. She actually used to work on the inside of health insurance and has a unique perspective on what the future might hold for the system.Read More
In today’s episode we talk about some of what Soul has been through during faer childhood, including three skin expander surgeries following the removal of a birthmark on Soul’s head. Fae talk about those surgeries, being undermedicated most of that time, finding out about a codeine allergy the hard way, not realizing how traumatic it all was until later, and how that’s complicated the process of transitioning from pediatric to adult care. In today’s bonus episode, we talk about needle phobia and figuring out Soul was autistic late in faer teens.Read More
In this week’s episode, Cara talks to Kirsten Schultz of the blog Not Standing Still’s Disease about her rare condition, Still’s Disease, and where it fits into the picture of autoimmune arthritis. They both make statements in response to last week’s Planned Parenthood attack, and they talk about growing up sick, blogging, what Kirsten hopes to do when she finishes her masters degree in Healthcare Administration, learning to be nice to ourselves, and PTSD.Read More
On this week’s episode of the podcast, Beata talks about being an adoptee with no family health history to rely on, accessible transportation, her work with the NGO Glaucoma Eyes, and getting published in an anthology of adult adoptee stories. She was born in Poland with cataracts, developed glaucoma during childhood, and is now dealing with some autoimmune issues including Hashimoto’s disease.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
In episode 02, Ilana talks about failing alternative medicine, how she manages her career, blogging and her work for Global Genes, the horrors of GI testing, crying in parking lots, and attempting wedding planning while living with a very unpredictable, and very time consuming chronic illness.
She lives with a primary immune deficiency disease, dysautonomia, and gastroparesis.Read More