Mystery Diagnosis: 20 Years of Not Being Believed
From Speak Up For Your Health by Archelle Georgiou, MD
February 24, 2026 · 33 min
About this episode
Eva Minkoff shares her 20-year journey to a diagnosis of Ehlers-Danlos syndrome and the challenges of being believed in the healthcare system.
What happens when it takes 20 years to get the right diagnosis — and along the way, doctors (and even your family) don’t always believe you? In this episode, we explore Eva Minkoff’s delayed diagnosis, the reality of invisible illness, and the emotional toll of not being seen in the healthcare system. Eva shares her journey to being diagnosed with Ehlers-Danlos syndrome, a connective tissue disorder that causes chronic joint pain, dislocations, and fatigue. Her symptoms began when she was a young ballet dancer. But for nearly two decades, she lived in diagnostic limbo — receiving partial answers, normal test results, and, at times, skepticism from both clinicians and family members. The lessons from this episode go beyond one rare condition: Answers matter — even when they’re not good news. If you feel dismissed, it’s okay to keep looking. Being believed can be as powerful as being diagnosed. Live by your own owner’s manual — and teach your children to do the same. How to follow Eva Minkoff: Instagram: @Life_Of_Eves LinkedIn: linkedin.com/in/evalana Website: https://boldbeing.co/ Connect with Archelle Subscribe to the ArcHealth newsletter Follow Archelle's Substack
People in this episode
Host: Archelle Georgiou, MD
Guest: Eva Minkoff
Topics covered
- diagnosis
- invisible illness
- healthcare system
- chronic pain
- patient experience
Keywords
- diagnosis
- Ehlers-Danlos syndrome
- chronic pain
- invisible illness
- healthcare
Mentioned in this episode
Books & works: Ehlers-Danlos syndrome
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