Hidden Diagnoses Impact: Unveiling EDS, CCI, and Beyond

Amy Wang-Hiller

Hidden Diagnoses Impact Podcast shares stories from people living with EDS, CCI/AAI, tethered cord, brainstem involvement, and other neuro-complex conditions often delayed or dismissed in care. Hosted by violinist and advocate Amy Wang-Hiller and produced by InclusiVibe Foundation, we explore medical gaslighting, trauma-aware care, disability, and how to rebuild life and identity. Conversations with patients, clinicians, and advocates turn lived experience into insight and hope.

Episodes

  1. Medical Dismissal, Diagnostic Trauma, and Patient Self-Doubt with Dr. Colin Halverson | HDI Podcast

    08/13/2025

    Medical Dismissal, Diagnostic Trauma, and Patient Self-Doubt with Dr. Colin Halverson | HDI Podcast

    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 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!

    56 min
  2. Redefining Recovery: Christina’s Journey Living with EDS and Its Hidden Challenges

    10/30/2024

    Redefining Recovery: Christina’s Journey Living with EDS and Its Hidden Challenges

    Send us a text 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:  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!

    2h 4m
  3. Patient Advocacy in Need: Kiera’s Dual Journey as a Public Health Scholar and Patient

    08/01/2024

    Patient Advocacy in Need: Kiera’s Dual Journey as a Public Health Scholar and Patient

    Send us a text 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!

    1h 9m
  4. Arlen's Journey: Seeking Treatment for Rare Genetic Conditions in the U.S.

    06/30/2024

    Arlen's Journey: Seeking Treatment for Rare Genetic Conditions in the U.S.

    Send us a text In this episode of the Occult Awareness podcast, we sit down with Arlen, who shares her compelling journey through the healthcare system with multiple rare genetic conditions, including Ehlers-Danlos Syndrome (EDS). Arlen's story is a testament to resilience, advocacy, and the challenges faced by those with rare and complex medical conditions. Early Symptoms and Misdiagnoses:Arlen’s lifelong battle with various symptoms started in childhood.Initial misdiagnoses and the impact on her daily life and education.Living with Ehlers-Danlos Syndrome:Detailed symptoms and the progressive nature of EDS.The impact of EDS on Arlen’s mobility and daily activities.Complex Comorbidities:The discovery of additional conditions like myalgic encephalomyelitis (ME), POTS, and others.The interconnectedness of these conditions and their compounded effects on health.Navigating Treatment and Care:The struggle to find knowledgeable and compassionate healthcare providers.The importance of a supportive medical team and the role of international healthcare systems.Challenges in the Healthcare System Outside of the U.S and in the U.S.:More time spent on patients but Lack of Knowledge in Complex Conditions  Difficulty with getting care in hospital settings without insurance. Personal Advocacy and Community Support:Arlen’s efforts to raise awareness about EDS and related conditions.The significance of community and support networks in managing chronic illnesses.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!

    1h 19m
  5. Unveiling Hidden Truths in Healthcare: The Stem Cell Dilemma - Occult Awareness Bonus Episode

    06/24/2024

    Unveiling Hidden Truths in Healthcare: The Stem Cell Dilemma - Occult Awareness Bonus Episode

    Send us a text Join us for this enlightening bonus episode of Occult Awareness, where we delve deeper into the complexities of the healthcare system. After our last in-depth discussion, our guest shared some additional critical insights that we couldn't keep to ourselves. In this episode, we explore the controversial world of alternative and complementary treatments, the role of financial gain in medical research, and the promising yet restricted field of stem cell therapy. Discover the real challenges faced by patients seeking innovative treatments and the systemic barriers that hinder progress. 📌 Key Topics Covered: - The potential and limitations of alternative cancer treatments. - The financial motivations behind medical research and treatments. - Personal stories highlighting the impact of systemic healthcare issues. - The debate around stem cell therapy and its accessibility. 🌟 Special Guest: Mark Metallica shares his profound experiences and perspectives on navigating a profit-driven healthcare system. 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!

    21 min
  6. Exploring Holistic Health: Insights from Licensed Professional Counselor Mark Michalica on Chronic Illness and Trauma

    06/07/2024

    Exploring Holistic Health: Insights from Licensed Professional Counselor Mark Michalica on Chronic Illness and Trauma

    Send us a text In this episode of Occult Awareness, we welcome Mark, a licensed professional counselor and health advocate, to discuss the complex interplay between chronic illness, trauma, and holistic health approaches. Mark shares his journey as both a professional and a patient, offering valuable insights into the limitations of the medical model and the importance of viewing health holistically. Key Discussion Points: Mark's journey into counseling and his experiences with chronic health issues.The role of holistic approaches in managing chronic illness.Understanding the medical model and its limitations.The impact of trauma on physical and mental health.The importance of looking at the body and mind as interconnected systems.Challenges faced by patients with undiagnosed or misdiagnosed conditions.The need for greater collaboration and open-mindedness in the healthcare field.This episode aims to illuminate the often-overlooked aspects of patient care and advocate for a more integrative approach to health and wellness. Join us for an enlightening conversation that bridges the gap between traditional medical practices and holistic health philosophies. 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!

    1h 1m
  7. Part 2: Systemic Failures and Hidden Diagnoses: Dr. Hillary Merry’s Advocacy

    06/02/2024

    Part 2: Systemic Failures and Hidden Diagnoses: Dr. Hillary Merry’s Advocacy

    Send us a text In Episode 5, Part 2 of Occult Awareness, Dr. Hillary Merry continues her deep dive into the critical issues of Craniocervical Instability (CCI) and systemic medical neglect.  Part 2 of the conversation, Dr. Hillary Merry continues to uncover the hidden flaws in the medical system, focusing on how often critical tests are dismissed, and the consequences this has on patients with conditions like Craniocervical Instability (CCI). She highlights the systemic negligence that leads to misdiagnosis and even tragic outcomes, sharing stories of patients who have been failed by the healthcare system. Key points discussed in this episode include: The pervasive game of telephone in medical record-keeping.The systemic issues cause doctors to avoid certain tests.Real-life impacts of dismissing patient symptoms.Dr. Merry’s personal motivation and advocacy work.This eye-opening episode is a must-listen for anyone interested in understanding the deep-seated issues within our healthcare system and the importance of advocating for unheard voices. 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!

    1h 4m
  8. Part 1 of Dr. Hilary Merry’s Journey with EDS: Navigating the Healthcare System as a Veterinarian

    05/29/2024

    Part 1 of Dr. Hilary Merry’s Journey with EDS: Navigating the Healthcare System as a Veterinarian

    Send us a text In this episode of Occult Awareness, we explore the personal and professional life of Dr. Hilary Merry, a veterinarian who has bravely faced the challenges of living with Ehlers-Danlos Syndrome (EDS) and multiple comorbidities.  In part one, Dr. Merry shares her journey from experiencing early symptoms as a child to receiving a formal diagnosis at the age of 27. She opens up about the struggles and triumphs of navigating a healthcare system that often overlooks complex conditions, offering listeners a rare glimpse into the realities faced by those with invisible illnesses. Additionally, Dr. Merry provides unique insights from her veterinary profession, highlighting parallels and contrasts between diagnosing complex conditions in animals versus humans. Introduction to Dr. Hilary Merry and her medical backgroundEarly symptoms and childhood experiences with undiagnosed EDSThe long path to diagnosis and the impact on her personal and professional lifeNavigating the healthcare system: struggles with being heard and believedThe role of comorbidities in complicating diagnosis and treatmentThe psychological toll of living with a chronic, invisible illnessAdvocacy and the importance of self-education and persistence in seeking careThe intersection of veterinary and human medicine in understanding complex conditionsHow veterinary medicine approaches diagnostic challengesComparisons between veterinary and human diagnostic processesInsights from veterinary practice that could benefit human healthcareAdvice for others facing similar health journeys and the significance of support networksTune in to hear Dr. Merry's inspiring story and gain insights into the intricacies of managing life with EDS and other complex health conditions, enriched by her dual perspective as both a patient and a veterinary professional. 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!

    1h 2m
  9. Part 2 Aella's Story Continues: Advocacy and Challenges in Chronic Illness

    05/25/2024

    Part 2 Aella's Story Continues: Advocacy and Challenges in Chronic Illness

    Send us a text In this episode of the "Occult Awareness" podcast, host Amy dives deeper into Aella's journey, exploring the complex and often frustrating realities of living with a chronic illness. From misdiagnoses and systemic healthcare issues to the everyday challenges faced by those with Ehlers-Danlos Syndrome (EDS) and other connective tissue disorders, Aella shares her experiences with raw honesty and courage. Join us as we discuss: The impact of stigmatization and misdiagnosis in the healthcare systemThe importance of advocacy and self-advocacy for chronic illness patientsAella's personal experiences with various medical professionals and therapiesThe struggle for accessible housing and adequate support programsThe necessity for better understanding and care for chronic illnessesThis episode not only sheds light on the systemic issues within healthcare but also highlights the resilience and determination of individuals like Aella. Tune in for an insightful conversation that aims to inspire and inform both patients and healthcare professionals alike. 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!

    1h 26m
  10. Part 1: Unveiling the Unseen: Aella's Fight for Diagnosis Amidst Medical Gaslighting

    05/21/2024

    Part 1: Unveiling the Unseen: Aella's Fight for Diagnosis Amidst Medical Gaslighting

    Send us a text In this gripping episode of Occult Awareness, Aella Askew bravely shares her harrowing journey through a maze of undiagnosed chronic illnesses and medical gaslighting. From a childhood filled with pain and dismissed symptoms to a life-altering spine injury, Aella's resilience shines through as she fights for answers and validation. Join us as we delve into the complexities of invisible illnesses, the power of self-advocacy, and the importance of finding community and support.  Childhood and the Circus Aella Askew, a woman with Ehlers-Danlos syndrome (EDS) and other chronic illnesses, shares her lifelong struggle with pain and medical invalidation. Aella's journey took an unexpected turn when she joined the circus, where she found a sense of belonging among fellow misfits. However, her physical ailments worsened over time, leading to her semi-retirement in 2018.A Life-Altering Injury While working as a metal fabricator, Aella sustained a severe spine injury exacerbated by a chiropractor's mishandling, leaving her hospitalized and homeless.Aella describes her struggles after the injury, including homelessness, reliance on Medicaid and disability benefits, and the challenges of finding affordable housing. Medical Gaslighting and MisdiagnosisAella discusses her experiences with medical invalidation and misdiagnosis.Aella talks about her advocacy efforts and how she became her own "mama bear" in seeking answers and support. She discovered the importance of community and connected with others with EDS, learning about ring splints and other resources.PANS/PANDAS DiagnosisAella shares her various diagnoses, including PANS/PANDAS, a neuroinflammatory disorder that can cause a range of symptoms. She discusses the cause of her PANS/PANDAS and the challenges of managing its symptoms, such as OCD, rage attacks, and tics.Ongoing Challenges and Medical Gaslighting Aella expressed her frustration with the medical system and the lack of understanding and validation she receives from doctors. She details specific instances of being dismissed and misdiagnosed, highlighting the impact this has on her mental and emotional well-being.Living with Chronic Pain and its Impact on Daily Life Aella discusses the difficulties of finding effective treatments and the constant struggle to manage her symptoms. She also shares her experiences with physical therapy and the limitations she faces due to her condition. Don't miss this eye-opening conversation that sheds light on many's unseen struggles. 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!

    55 min
  11. Navigating the Maze of Rare Conditions: Why Sharing Our Stories Matters

    05/02/2024

    Navigating the Maze of Rare Conditions: Why Sharing Our Stories Matters

    Send us a text In this deeply personal episode, join Amy as she shares her harrowing journey through a labyrinth of medical mysteries that span years of misdiagnoses and ineffective treatments. From the initial shocking symptoms following a float tank session to the life-altering diagnosis of Ehlers-Danlos Syndrome and related complications, Amy's story is one of resilience and relentless pursuit of answers. Delve into her experiences with sudden paralysis, chronic pain, mental health crises, and the ongoing struggles with the healthcare system's overlook of rare conditions. Her narrative sheds light on the critical need for awareness, proper diagnosis, and the emotional toll of living with misunderstood illnesses. Amy's voice brings to life the silent battles many face but few hear about, calling for a shift in how we perceive and treat the unseen. Hashtags: #RareDiseaseAwareness #MedicalMystery 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!

    1h 29m
  • 11 Episodes

Ratings & Reviews

5
out of 5
2 Ratings

About

Hidden Diagnoses Impact Podcast shares stories from people living with EDS, CCI/AAI, tethered cord, brainstem involvement, and other neuro-complex conditions often delayed or dismissed in care. Hosted by violinist and advocate Amy Wang-Hiller and produced by InclusiVibe Foundation, we explore medical gaslighting, trauma-aware care, disability, and how to rebuild life and identity. Conversations with patients, clinicians, and advocates turn lived experience into insight and hope.

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