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
Today's episode is actually a "rerun" of one of my favorites from last year to mark Trans Day of Visibility. More new episodes to come soon, but I'm still recovering from the AHCA whirlwind. S. Leigh Thompson talks about the hurdles to diagnosis he's faced as a trans person with complex health issues, healthcare insecurity, getting around the city with mobility limitations, and navigating society with invisible disabilities.Read More
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
I talked to this week’s guest, Kate Kenfield MPH, for so long we have two full episodes for your listening pleasure. We talk about about her work as a freelance sex educator including her recent west coast teaching tour and founding Sex Geekdom, the stigma surrounding sexually transmitted infections and disclosure, and the difficulty of making new friends as a grownup. We also compare notes about living with Chronic Migraine and our attempts at managing the condition, migraine literacy among doctors we’ve seen, and regularly sticking needles in our heads because that’s somehow preferable to the migraines. We discuss New York’s restrictive medical cannabis program, harm reduction and empathy, linguistic precision and Kate's Tea & Empathy workshops.Read More
In today’s episode, I talk to Keah Brown about her writing, growing up disabled with an able bodied twin sister, visibility and intersectionality, learning to be nice to ourselves, not seeing herself as a black disabled woman represented in media, and what Keah plans to do about it.Read More
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
In today’s episode I talked to Erica Lupinacci about her health advocacy with HIV/AIDS and through Suffering the Silence, her own experience living with Lupus, media portrayal of chronic illness and disability, challenges she’ll face as an actor with a disability, doing everything right and still being sick, illness on social media, the nightmare of American health insurance, and traveling with an unpredictable illness.Read More
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 today’s episode, Alex talks about his experience with Hypertrophic Cardiomyopathy, having open heart surgery at 16, almost dying a couple times, his work in assisted living, and—my favorite topic—death in our death phobic culture. In the bonus episode he answers my Big Healthcare Question, and we talk about all of my arrhythmias and my own heart mysteries.Read More
In today’s episode, S. Leigh Thompson talks about the hurdles to diagnosis as a trans person with complex health issues, healthcare insecurity, getting around the city with mobility limitations, and navigating society with invisible disabilities. In the bonus episode we talk intersectionality, the spectrum of ability and access, disclosure, hormones, and the potential for allyship between the the trans and disability communities.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 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
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 this week’s episode storyteller and senior producer of The Story Collider podcast, 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.Read More
On today’s episode, writer Abby Norman talks about her experience with Endometriosis, how difficult it can be to get it diagnosed, having others value her fertility and the satisfaction of her male sexual partners above her own health and quality of life, and the book deal she just signed to write about it. Episode 16 picks up Abby’s story a few years into her experience with Endometriosis, but today's bonus episode is her story of when it all started.Read More
In this week’s episode, Cara talks to former med student and current PhD candidate Cyrena about her experience pursuing higher education in the biomedical sciences, other ways to pursue related interests, what it’s been like to deal with both Bipolar Disorder and Lupus along the way, and the systemic ableism baked in to medicine and medical education.Read More
I am so, so excited to bring you this week’s episode of the podcast—and for those of you living with chronic pain, I think you’re really going to enjoy this one too. I talked to Jill Fancher PhD, a pain psychologist who lives with chronic pain herself. We talked 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.
Cathy talks about grief (especially denial), The Spoon Theory, parenting with chronic illness, how her condition has affected her music career, and what it’s like to be “one of the lucky ones,” by having definitive disease markers in her blood. Cara makes an impassioned plea for you to get a flu shot this year, and Cathy shares two songs that she wrote while processing the grief of her illness. She lives with Rheumatoid Arthritis, Sjögren’s Syndrome, POTS, complex chronic headaches, and Interstitial Cystitis.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