The Joy Tax Podcast
The Joy Tax Podcast is a conversation series for parents and caregivers raising a child or teen with complex, chronic conditions, such as dysautonomia, ME/CFS, Long COVID, PANS/PANDAs, MCAS. The normal parenting wisdom doesn’t fit the situations we are living through. This is a forum to share, affirm, and learn from each other. It's also a window for allies to listen in and gain deeper insight into the world we inhabit."
The show is named for one of the key symptoms of ME/CFS: post exertional malaise or PEM, or what our family calls “joy tax” which is simply a worsening of symptoms after physical, cognitive, emotional, or social exertion. Sometimes, the resulting crash can be mild, while at other times, it can lower a person’s baseline for weeks, months, or even years.
This podcast is not a substitute for medical guidance. We don't endorse specific treatments, and we encourage you to always talk to your healthcare provider before making any medical decisions.
If you have questions, comments, or are interested in appearing on the show, please email: joytaxpodcast@gmail.com
Listen on:
Episodes
5 days ago
5 days ago
Sallie Rediske discusses pacing with kids and teens, the damages caused by the PACE trial, and what it was like to navigate ME/CFS since childhood--long before she had a diagnosis or language for what she was experiencing. She also describes the fears families face when they are accused of being complicit in their child's illness. Sallie holds a Master of Physical Therapy and had a robust private practice before her health challenges forced a medical retirement. She is a wealth of knowledge and a fierce advocate for people living with ME/CFS.
Chapters:(Times approximate)00:00 Introduction to ME-CFS and Personal Stories02:11 Growing Up with ME-CFS: Sallie's Journey11:05 Pacing and Post-Exertional Malaise Explained18:27 Recognizing PEM in Children33:49 Pacing Strategies for Parents and Children41:03 Coping with Anxiety and Expectations in Parenting47:33 Neural Retraining: Perspectives and Concerns
Resources:The Workwell Foundation: https://workwellfoundation.org/resources/
Bateman Horne Center ME/CFS Guidebook: https://batemanhornecenter.org/education/mecfs-guidebook/
Rate of Perceived Exertion: https://static.wixstatic.com/media/83510c_123a4edf51014a528623573fe344d119~mv2.png/v1/fill/w_980,h_1307,al_c,q_90,usm_0.66_1.00_0.01,enc_auto/83510c_123a4edf51014a528623573fe344d119~mv2.png
Works authored by Sallie Rediske:
Physical Therapy Must Catch Up-Teaching ME/CFS is No Longer an Option:https://batemanhornecenter.org/physical_therapy_must_catch_up/
Clinical Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a Curriculum Thread to Meet Accreditation Standards in Physical Therapy Education: https://nsuworks.nova.edu/ijahsp/vol24/iss1/1/
If you have questions or would like to share your experience on the podcast, please email Mercedes at joytaxpodast@gmail.com
Some of the resources Sallie discusses are available as PDFs. I am happy to email them to listeners upon request.
Produced by NAST Studios.
Wednesday Jan 07, 2026
Wednesday Jan 07, 2026
Becky Diamond is the mom of a son with Long COVID. In this conversation, she talks about the reality of isolation, the ongoing work of advocating for her teen, and what it means to be a "good mother" in impossible circumstances. Becky Diamond is an adjunct professor for NYU, a contributing writer to Psychology Today, and a former war reporter.
You can find her articles here: https://www.psychologytoday.com/us/contributors/becky-diamond
Monday Jan 05, 2026
Monday Jan 05, 2026
Suzan Jackson is a seasoned voice of wisdom for parents raising kids with ME/CFS and related illnesses. In this conversation, she shares what it was like to be diagnosed with ME/CFS, and then shortly thereafter to have both of her sons begin exhibiting symptoms. She offers parents valuable insights on navigating school systems, the complexities of gratitude, and the thrill of watching her kids grow into adulthood. This conversation is a necessary reminder of the underlying hope for all kids and families living with chronic, energy-limiting conditions.
Suzan Jackson's blogs, media, and book: Finding a New Normal: Living Your Best Life with Chronic Illness is available at www.suzanjacksonbooks.com
www.suzanjackson.com
www.livewithcfs.blogspot.com
/ suzanljackson
/ livewithmecfs
/ livewithmecfs
/ suejacksonde
Produced by NAST Studios: naststudios.com