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Hidden Diagnoses Impact: Unveiling EDS, CCI, and other undiagnosed or underdiagnosed conditions - Part 1: Unveiling the Unseen: Aella's Fight for Diagnosis Amidst Medical Gaslighting

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

Hidden Diagnoses Impact: Unveiling EDS, CCI, and other undiagnosed or underdiagnosed conditions

05/21/24 • 55 min

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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 Misdiagnosis
    • Aella 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 Diagnosis
    • Aella 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.

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05/21/24 • 55 min

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Hidden Diagnoses Impact: Unveiling EDS, CCI, and other undiagnosed or underdiagnosed conditions - Part 1: Unveiling the Unseen: Aella's Fight for Diagnosis Amidst Medical Gaslighting

Transcript

00:00:00:00 - 00:00:43:04
Amy (Host)
Welcome to Occult Awareness where we illuminate the unseen challenges in health care. I am your host, Amy White, and each episode we explore twisting paths to diagnosis and challenges faced by those with condition that don't show up at the standard checkup for EDS, CCI, and beyond. We are here to bring you stories from those on the complex journey towards diagnosis.
00:00:43:06 - 00:01:17:15
Amy (Host)
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