CW: eating disorder Read More
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 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
CW: Suicide 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
Below is a list of links to organizations close to my heart, that I recommend giving to this #GivingTuesday. You can also find many more organization on our Resources page. Of course, if you wanted to make a NON tax deductible contribution to something you can always give to In Sickness + In Health! You can also help us out without money by rating and reviewing us on iTunes, which helps other people find the show, and helping spread the word by telling people you know about us and sharing the show on social media. Read More
Christopher Snider, my guest from episode 07 of the podcast, had me on his podcast, Just Talking, this week. He caught me on a surprisingly lucid day, and I talk all about Ehlers-Danlos Syndrome (EDS), my diagnostic process, and starting my own show. 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
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 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
One of the challenges of living with complex chronic illness is that when one thing goes wrong, an avalanche of problems is soon to follow. At least that's been my experience, just about every single time I get what I call "regular people sick." This includes things like colds, the flu, sinus infections, and my recent nemesis, the stomach virus. A stomach virus that showed up just in time to help my dysautonomia make me very aware of it for Dysautonomia Awareness Month, and the two year anniversary of a medical procedure that was supposed to be simple and routine, but turned out to be anything but routine and simple. Read More
I spend a lot of my time encouraging my loved ones and others to take their health and their symptoms seriously. Sadly, I have a really hard time taking my own advice. Two weeks ago I started experiencing a lot of disruptive GI symptoms that I attributed to increased stress. By this weekend those symptoms hadn't stopped, and I still didn't really do anything about it. I resolved to continue ignoring it so I could attend a conference in Philadelphia that I had bought a ticket to and booked accommodations for at a time when I was feeling much better than I have been for the last few weeks. Read More
Unfortunately, a lot of people still have never heard of dysautonomia, or the various conditions that fall under its umbrella. Dysautonomia is a blanket term that covers conditions resulting in autonomic dysfunction. Your Autonomic Nervous System is responsible for a lot of the things that are supposed to happen in your body automatically; things like your heart rate, blood pressure, body temperature, sending your blood to where your body needs it the most at any given time, and can affect just about any system in the body. For many with autonomic disorders, it can make the simple act of standing up a very dangerous game. Read More
This week's episode of the Dear Friends & Family podcast includes an interview with me! The show is another podcast about chronic illness that's definitely worth checking out. I talked to Lex & Patty about my weird body and starting my own show. You can find the episode on Sticher or iTunes! Read More