Episode 01 - Dysauto-whatta?! w/ Lauren Stiles: Founder and President of Dysautonomia International, Lauren Stiles, talks about her long diagnostic process, misdiagnoses, diagnostic delay, and gives us a crash course on just what dysautonomia is. We talk about the research her organization has funded, their annual patient conference, and how exciting it is to get in a room with 400 other people who get it, don’t think you’re crazy, and might even share their Gatorade with you.
Episode 06 - Accessibility Means More Than Ramps - Part Two: We 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. Rebecca talks about self advocacy, diversity of disability, their work toward better accessible transit options for Philadelphia and plans to start a queer disability justice project, as well as some of the social and economic issues that face the chronically ill and people with disabilities.
Episode 11 - What a Pain w/ Jill Fancher PhD: Dr. Jill talks about her experience as a pain psychologist who lives with chronic pain herself from autoimmune arthritis. We talk about how she came to study pain, the devastation of being stuck in diagnostic limbo, stigma, existing in the liminal space between patient and provider, and the feedback loop between chronic pain, anxiety, and depression. The episode-specific resources page includes vocabulary and resources from this episode.
Episode 17 - It's 'Just' Stress: Cyrena talks about the link between stress and biology, epigenetics, the limitations of scientific knowledge and science communication, and the indelicate habit so many doctors have of telling patients their mysterious symptoms are “all in their head.” A patient with both Bipolar Disorder and Lupus, Cyrena recently passed her PhD dissertation defense on research in inflammatory markers in adults who experienced early life stress.
Episode 19 - Keep Telling It and Keep Telling It: Storyteller and Artistic Director of The Story Collider, Erin Barker, talks about her experience with Interstitial Cystitis and Vulvodynia, some of the the uncomfortable social situations her condition has put her in, being the weird girl at work, and the magic of Botox. In the bonus episode we talk about podcasting and sharing our stories, Erin's work with The Story Collider and The Moth, and the somewhat unorthodox relationship she developed with her faith during some of the darker times in her experience with IC and Vulvodynia.
I told a story at The Story Collider's August show at The Wild Project, during Idea Distillery's Festival of the Unknown, which was featured on their recent Valentines Day episode of The Story Collider podcast.
Episode 21 - One Thing After Another: Heather talks about developing post traumatic stress symptoms after medical experiences related to her complex chronic illness. In the 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. We 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 with a few Grey’s Anatomy spoilers—but nothing from the current season.
Episode 32 - What is This Life?: Suffering the Silence co-founder, Erica Lupinacci, talks about her health advocacy with HIV/AIDS and through STS, her own experience living with Lupus, media portrayal of chronic illness and disability, challenges she’ll face as an actor with a disability, illness on social media, the nightmare of American health insurance, doing everything right and still being sick, and traveling with an unpredictable illness.
Episode 33 - Allie Cashel on Suffering the Silence: Author and co-founder of Suffering the Silence, Allie Cashel, talks 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.
Episode 37 - Happy Birthday, Baby!: It’s our first birthday episode! I decided to do something a little different with it, and asked my oldest friend Casey to interview ME. We talk about why I started the podcast, what the experience of producing it has been like, how it’s been different than what I expected to do, and what might be in store for year two.
Special Episode for MedX 2016 - The Stories We Tell: Created for the 2016 Stanford Medicine X ePatient Storyteller Track, The Stories We Tell features a handful of MedX ePatients on sharing their own stories and the delicate balance of telling the stories of others. These conversations touched on themes of identity, privacy, patient experience, using technology to find connection, and ways in which we’re trying to compensate for the many deficits that exist in our healthcare system through that connection and storytelling.