The Joy Tax Podcast

In this episode, Dr. Elham Raker, a pediatrician and mother of a child with Long Covid, sheds light on the complexities of managing chronic illness in children. We discuss advocacy, navigating medical systems, and the emotional journey of families affected by Long Covid. Timestamps 00:00 – Introduction to the podcast and Dr. Raker's background 03:02 – The progression and phases of long COVID in her daughter 07:50 – How pediatricians can better support parents advocating for sick children 11:37 – Building relationships with doctors and understanding limitations in care 14:31 – Obstacles in the healthcare system for chronic illness management 16:28 – What training doctors need for better treating chronic illnesses like long COVID and POTS 18:23 – The role of trial-and-error in treatment and individualized care 23:37 – Community support and crowdsourcing care—pros and cons 27:40 – Screening for post-exertional malaise and its relevance in pediatric care 34:49 – Recognizing red flags, like school avoidance, as warning signs 37:05 – Family dynamics and supporting siblings amidst chronic illness 39:02 – The importance of community and social support networks 41:27 – The work of Long COVID Families advocacy group 49:00 – Moments of normalcy and the ongoing emotional spectrum in chronic illness management 50:52 – The constant hope and resilience needed for families facing long COVID Links https://longcovidfamilies.org/ Produced by NAST Studios. Show Email: [email protected] The content of The Joy Tax Podcast is strictly for informational purposes and should never replace professional medical advice, diagnosis, or treatment from a qualified healthcare provider.

In the previous episode, Kimberly Burwick and I talked about our hopes for the start of the school year. At the start of spring break, we sat down to share how the last six months have unfolded for both of our families. Kimberly Burwick talks about the grief of another year mostly at home, and what it's like to have Child Protective Services show up at your door. I share my delight at my daughter having good school support and my gratitude for a gradually improving baseline. We also share our mutual frustration at people's disbelief that children and teens could be so sick. Produced by NAST Studios. Show Email: [email protected] The content of The Joy Tax Podcast is strictly for informational purposes and should never replace professional medical advice, diagnosis, or treatment from a qualified healthcare provider.

At the start of the school year, Kimberly Burwick and I sat down to talk about our friendship, our hopes, and the judgments parents navigate when raising children with a complex illness. She discusses the value of developing support systems and the importance of ensuring our kids are not forgotten. Kimberly Burwick is an educator and the author of six collections of poetry, including Brightword and Out Beyond the Land. She recently published Human School, an essay about the parallels between her father's polio and her child's Long COVID: https://anotherchicagomagazine.net/2026/01/20/human-school-by-kimberly-burwick/ Produced by NAST Studios.

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 Stories 02:11 Growing Up with ME-CFS: Sallie's Journey 11:05 Pacing and Post-Exertional Malaise Explained 18:27 Recognizing PEM in Children 33:49 Pacing Strategies for Parents and Children 41:03 Coping with Anxiety and Expectations in Parenting 47:33 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 [email protected] Some of the resources Sallie discusses are available as PDFs. I am happy to email them to listeners upon request. Produced by NAST Studios.

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

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