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
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
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
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.
This episode is pretty heavy in neuro, psych, and pain terminology, and Dr. Jill was nice enough to help me out with defining those for you. This stuff is interesting, I promise... once you get past all the boring vocabulary stuff, anyway. Also, no one really understands or agrees on how chronic pain happens or should be treated, and there is a surprising lack of good information resources on all this stuff, so take it all with a grain of salt—as Dr. Jill points out in the interview, each person needs to find what works best for them.Read More
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, In Sickness + In Health goes international! I talk to Ariane, an artist and crafter from Vancouver, Canada. She has a number of longterm, complex symptoms, but has yet to get a meaningful diagnosis. Cara describes some of the differences between the American and Canadian healthcare systems, and they talk about the challenges Ariane has faced in the Canadian system, trying to find answers to her long term symptoms, patient burnout, and figuring out how to live life beyond just coping.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
Cara and Rebecca 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. They discuss self advocacy, Rebecca's work toward better accessible transit options for Philadelphia and plans for a queer disability justice project, diversity of disability, and some of the social and economic issues that face the chronically ill and people with disabilities. At the end they talk about what they worry about, SSDI, and Imposter Syndrome.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
Becca talks about having Giardia as an infant, traveling with an unpredictable chronic illness, having brain surgery—twice, the wonders of high sodium diets, and her video game web series, Millennial Fair.
She lives with Ehlers-Danlos Syndrome, Arnold Chiari Malformation, and POTS.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
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
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
I am SO excited to finally be able to share some of what we've been working on. We're releasing a new episode every day this week to honor Dysautonomia Awareness Month. I am SO excited to finally be able to share some of what we've been working on. We've releasing a new episode every day this week to honor Dysautonomia Awareness Month. Each of the episodes are with dysautonomia patients that have different primary diagnoses and stories to share. We looked at dysautonomia in the setting of autoimmune disease, immune deficiency, the genetic condition Ehlers-Danlos Syndrome, and Arnold Chiari Malformation, a structural defect when the brain meets the spine.areness Month. I'll be updating this post as we add the rest of the episodes.Read More