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
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
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
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
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
We are launching the In Sickness + In Health blog ahead of Invisible Illness Awareness Week 2015. We will be participating in #iiw15 here on the blog and on social media throughout September in the run up to the official awareness week.Read More