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
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
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 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, we talk 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 the dissertation defense for her PhD with research in inflammatory markers in adults who experienced early life stress.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.
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
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 episode 01, Lauren talks about her long diagnostic process, misdiagnoses, diagnostic delay, and gives us a crash course on just what dysautonomia is. She is the president of Dysautonomia International, a nonprofit she started in 2012, which has gone on to raise considerable funds for research in a neglected field, and hosts an annual patient-centered conference that doesn’t follow any rules. We talk about that research and the 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.
Lauren lives with Sjogren’s Syndrome and dysautonomia that includes Postural Orthostatic Tachycardia Syndrome (POTS), Inappropriate Sinus Tachycardia (IST), and Neurocardiogenic Syncope (NCS).Read More