The Dysunderstood Podcast
Dysunderstood exists to share stories and and foster community of the dysunderstood- those living with complex, misunderstood, chronic illness. The Dysunderstood podcast provides a platform to patients, providers and the community collectively working towards increased understanding of infection-associated conditions like dysautonomia, Long Covid, ME/CFS, chronic lyme, and more. Guests share their lived experience, knowledge, and hopes for the future of this community. The Dysunderstood Podcast host, Ella Eastin, created the Dysunderstood platform after her own experience with disabling, chronic illness that ended her professional swimming career and drove her to pursue a career in medicine.
Episodes
Meet Sarah- she’s navigating life with POTS, MCAS, and Autism. She has entrenched herself in advocacy and the disability community, providing many recommendations to learn more about bias and the medical system. Topics we discuss include appointment fatigue, fat phobia, chronically ill women/minorities and more. Tune in to hear her story, approach to living with chronic illness, and recommendations for sources of educatio...
James, our first male patient guest talks about his experience with Long COVID POTS, his perspective changes and managing life with a great sense of humor in the face of disabling illness. James insightfully provides several metaphors to describe his experience.
Topics:
- Connecting with other patients and the power of strangers with shared experiences
- Impact of Long COVID, POTS on relationships
- Challenges faced, mis...
Olga, a proud mom of two with POTS, openly shares her journey to diagnosis, the challenges of balancing parenthood and chronic illness. She discusses the small victories that have helped her regain some strength and control over her life with an unpredictable condition. Her conversation with Ella touches on navigating healthcare, talking to children about chronic illnesses (including role playing emergency scenarios), and fostering...
Ella talks with Dr. Bruce Feldstein, a former emergency medicine physician who, after a disabling injury, transitioned into spiritual care at Stanford as a chaplain. They discuss themes of identity, the desire for control, and navigating life's uncertainties. Ella also shares her journey of acquiring a chronic illness, the motivation behind the Dysunderstood platform, and the importance of community, acceptance, and resilience in ...
Season 2's first community story is shared by Samantha Pearson, a Stanford University swimmer diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and long COVID after experiencing prolonged symptoms post-COVID infection. Sam shares her journey through the onset of debilitating symptoms, challenges with diagnosis, and her eventual path to finding answers. We discuss the importance of patient advocacy, mental he...
Dr. Peter Rowe speaks about his pioneering work in identifying and treating ME/CFS, dysautonomia, and hypermobility in patients, including insights into long COVID, emphasizing his dedication to advancing medical understanding and patient care through research, advocacy, and a holistic approach to complex chronic illnesses.
Want to hear more from Dr. Rowe?
Diana, the first Dysunderstood community author, shares her life-changing journey, starting from a POTS and MECFS diagnosis during her collegiate swimming career, to pursuing her law degree and the ups and downs in between. Diana discusses the importance of relationships, advocating for herself, and balancing everything with her chronic illness.
Want to hear more from Diana ? Find her Dysunderstood blog: "You&...
Daniela, after years of managing undiagnosed illnesses during her teen years, begins her true healing process, embracing a holistic approach and the mind-body-spirit connection. We discuss challenges and triumphs of navigating life, education, and personal growth amidst ongoing chronic illness, highlighting the importance of a supportive community and personal resilience.
Want more background ? Find Daniela's Ful...
Christine Reed- Author, Adventurer, and Athlete with POTS- discusses her journey towards self-acceptance, empowerment through outdoor activities, her experience reaching a POTS (Postural Orthostatic Tachycardia Syndrome) diagnosis, and balancing different aspects of her identity.
To read or listen to Christines's original story she shared with Dysunderstood, visit Keep Moving Forward.
Find us all on Instagram: @dysunderst...
A vulnerable discussion with Taylor about defying limits and creating new dreams in the face of new challenges- living with disability, Ehlers Danlos Syndrome and POTS.
Find us all on Instagram: @dysunderstood
TikTok: @dysunderstood
Thank you to all of our partners for making this possible. We work tirelessly to elevate the voices of the dysunderstood.
For a transcript of this episode, click he...
A heartfelt conversation with Jackie on managing motherhood, Hypermobile Ehlers-Danlos Syndrome, and POTS.
To read or listen to Jackie's original story she shared with Dysunderstood, visit Awareness is the Answer.
Find us all on Instagram: @dysunderstood
TikTok: @dysunderstood
Thank you to all of our partners for making this possible. We tirelessly continue to elevate the voices of the dysund...
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