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: 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, Chelsea talks about her long term mystery symptoms doctors labelled an unknown rare disease, her complicated relationship with shunts placed to relieve intracranial pressure, her recent Lyme Disease diagnosis that may or may not explain everything, and the lack of knowledge and research that makes that still unclear.Read More
Monday February 29th is Rare Disease Day 2016, and we're getting the party started early with a special bonus episode of the podcast, honoring the occasion. It's our first clip show!Read More
In this week’s main episode, Cara talks to Heather about developing post traumatic stress symptoms after the medical experiences related to their chronic illnesses. In today’s bonus episode, they talk a bit about some of the therapies that have been studied as treatments for PTSD, including Heather’s experience with EMDR. They also talk about rates of PTSD among survivors of different kinds of traumatic events, and how it is often portrayed in the media, which comes witha few Grey’s Anatomy spoilers, though nothing from this current season.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 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
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