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
Episodes
Brooke Anderson shares her son's recovery story from Long Covid. She talks about her son's journey, the impact of severe chronic illness on the rest of the family, and how good health can feel fragile. She also describes the strain of watching well kids and healthy families, and the devastating isolation she experienced. Now that her family is on the other side, she values her bond with her son and wants to support other families g...
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 pediatrician...
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 g...
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...
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 challeng...
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-di...
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