This project was produced for the 2016 Stanford Medicine X ePatient Storyteller Track: I am an artist, health advocate and podcaster who has lived with complex chronic illness, and the chronic uncertainty that comes along with it, for more than two decades. As someone juggling multiple invisible illnesses, much of my work has been about visibility, and making visible what has previously been unseen. In my attempts to seek diagnoses and validation, I have used many of the quantitative symptom tracking apps that have been available for iOS in recent years. The Instagram account, @bimpsegetsweird, is my attempt at qualitative self tracking to better capture my quality of life, which has too often been underrepresented in other self tracking data.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
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
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
Friend of the podcast Abby Norman (from episode 16) and I got together to debrief about the Endometriosis Foundation of America conference we attended. We actually didn't wind up talking about it much (sorry), but we covered some of it, what patients really need until there's more consensus on how to treat the condition, medical debt, menstrual stigma, bleeding on things, personal care, and living with chronic fatigue.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 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
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
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
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
This week’s episode is a solo show; Cara talks about her period problems, but don’t let that discourage you from listening to this one, she doesn’t even get too graphic about it! She talks about the stigma surrounding menstrual health, and why we need to talk about this stuff more. Cara also explains the difference between PMS and PMDD, and what living with PMDD has been like for her. So grab your snacks and your heating pad, and curl up and listen.Read more
This week’s episode is part two of Cara's conversation with Kirsten Schultz, the guest from episode ten. They talk about how and why Kirsten started the Twitter hashtag #ChronicSex as a safe space to talk more openly about self-care, self-love, sexuality, and intimacy in the context of chronic illness. Cara talks about what she hopes to do with the show in the coming year, and a bit about the difference between gender and sexual orientation. They also talk about their own experience with these topics, and touch on physical therapy and more patient advocacy.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
On this week’s episode, Cara talks to Dior Vargas, Latina feminist mental health activist, about her experiences with depression, suicide rates, and her People of Color with Mental Illness photo project. In honor of Festivus, Cara airs some grievances about medication and its place in our culture, and the false division between mental illness and physical illness. She talks about the Feats of Strength required to make it through the holiday while living with chronic illness, and they discuss getting help, media representation, and how Dior got invited to the White House.