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
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, 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 today’s main episode Jen talks about needing regular opioid pain medication at a time when those medications are public enemy number one. We talk about why she needs access to these medications, how we deal with drugs here in the US, how that has created a climate in which we can't have open and honest conversations about drug use, and how challenging it can be to really treat chronic pain. We discuss the important distinctions between addiction, abuse, and dependence, and the many tradeoffs and compromises we often have to make in treating chronic health conditions.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 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