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

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 system
• The importance of advocacy and self-advocacy for chronic illness patients
• Aella's personal experiences with various medical professionals and therapies
• The struggle for accessible housing and adequate support programs
• The necessity for better understanding and care for chronic illnesses

This 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.

Chapters

• 0:00 Recap: Discussion on high functioning and initial health issues.
• 0:49 Teaser: FND treatment were mean for Connective Tissue Disorder
• 1:17 Systemic Issues in Patient Care
• 2:45 Good doctor experience and MCAS diagnosis
• 6:50 Struggles with the healthcare system and inappropriate doctor responses
• 11:49 Cervical Collar Housing and TCL Support Programs
• 19:25 Restrictions on savings and ownership for disabled individuals.
• 20:50 Miscommunications and ineffective therapeuti c techniques.
• 23:35 Discussing dystonia and other symptoms
• 28:20 Next step plan for further diagnostic imaging and consultation
• 29:02 Lack of proper imaging and dynamic imaging
• 32:39 Issues with Current Medical Practice & over diagnosing FND
• 35:16 Refusing Depression Screener and Why
• 47:03 Aella's EDS Diagnosis Story
• 52:24 Next Step of Medical Diagnosis and Funding
• 57:09 Reflection on the journey and future steps.
• 1:01:49 Further Conversation about PHysical Doctor on Mental Health Diagnosis
• 1:06:21 Hope for Changes & Self Advocacy
• 1:09:10 Patient relations, success in self-advocacy, affords with chronic illnesses
• 1:16:51 Final thoughts and gratitude for the support and future care.