In this powerful episode of Hidden Diagnoses Impact, Dr. Colin Halverson—medical anthropologist and faculty investigator at Indiana University’s Center for Bioethics—joins host Amy Wang-Hiller to unpack the systemic failures facing patients with rare and invisible conditions, particularly Ehlers-Danlos Syndrome (EDS) and craniocervical instability (CCI).

We explore the disturbing impact of medical gaslighting, misdiagnosis, and the psychological toll of repeated clinical dismissal. Dr. Halverson introduces the concept of clinician-associated traumatization and shares research findings showing how dismissal erodes patient trust, fuels self-doubt, and creates barriers to care, especially for younger, disabled, and chronically ill individuals navigating the healthcare system.

Whether you're a patient, clinician, caregiver, or advocate, this episode offers deep insights into how ethical reform and empathetic communication can transform outcomes for those living with rare and misunderstood conditions.

Please follow us on social media @HiddenDiagnosesImpact, watch the video format on YouTube @hiddendiagnosesimpact

Support this podcast and the mission of our forming nonprofit, which aims to raise awareness of complex neurological conditions like CCI and EDS, uplift disabled artists, and spark systemic change in both medicine and the creative world:

https://inclusivibe.betterworld.org/donate

more detail visit: inclusivibe.org

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In this episode of Hidden Diagnosis Impact, Christina shares her powerful journey living with Ehlers-Danlos Syndrome (EDS) and the complexities of navigating a healthcare system that often overlooks rare conditions.

Christina opens up about her early symptoms, the pain of repeated misdiagnoses, and the emotional toll of being dismissed and mischaracterized by doctors. Her story sheds light on the physical challenges of EDS, from spinal instability to brainstem complications. Christina has redefined recovery, seeing it as a continuous process of adaptation and self-care rather than a cure.

Highlights:

YouTube full interview:

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Please follow us on social media @HiddenDiagnosesImpact, watch the video format on YouTube @hiddendiagnosesimpact

Support this podcast and the mission of our forming nonprofit, which aims to raise awareness of complex neurological conditions like CCI and EDS, uplift disabled artists, and spark systemic change in both medicine and the creative world:

https://inclusivibe.betterworld.org/donate

Please leave your review. Your feedback is so valuable to us! And it will help us reach more listeners like you.

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In this episode, we welcome Kiera Chan, a public health PhD student and patient advocate who shares her unique journey through the healthcare system. Kiera combines her professional insights and personal experiences to highlight the challenges of navigating complex medical issues, advocating for off-label treatments, and addressing healthcare disparities.

Please listen to her story and practical advice on empowering patients and improving their quality of life.

• Bridging Personal Experience and Professional Insight:
  • Kiera offers a rare blend of personal health experiences and professional expertise in public health, allowing her to deeply empathize with patients while providing informed advocacy.
• In-Depth Understanding of Healthcare System Flaws:
  • Her academic background enables her to dissect and explain the systemic issues within the healthcare system, making her insights valuable for both patients and policy-makers.
• Research-Driven Advocacy:
  • Kiera’s research on patient dismissal and healthcare disparities provides
• Personal Health Journey:
  • Kiera shares her own experiences with misdiagnosis, navigating the healthcare system, and advocating for herself, providing relatable content for listeners facing similar struggles.
• Public Health Research:
  • She delves into her public health studies, highlighting key findings and their implications for patient care and health policy.
• ·Advocacy Tips and Strategies:
  • ·Practical advice on how patients can advocate for themselves, including tips on dealing with healthcare providers, understanding medical records, and accessing support groups.
• ·Future of Healthcare:
  • Kiera discusses her vision for the future of healthcare, including the need for more patient advocates and systemic changes to support vulnerable patients.

Support the show

Please follow us on social media @HiddenDiagnosesImpact, watch the video format on YouTube @hiddendiagnosesimpact

Support this podcast and the mission of our forming nonprofit, which aims to raise awareness of complex neurological conditions like CCI and EDS, uplift disabled artists, and spark systemic change in both medicine and the creative world:

https://inclusivibe.betterworld.org/donate

Please leave your review. Your feedback is so valuable to us! And it will help us reach more listeners like you.

Thank you for your support!

Support the show