Episode
#33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes
- Published
- May 1, 2026
- Duration seconds
- 4394
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Summary
For 23 years, Dr Lucy Foulkes lived with chronic pain, migraines, endometriosis, and unexplained symptoms. She saw neurologists, rheumatologists, urologists, and physiotherapists. Nobody connected the dots. Then a stranger’s Instagram message led her to a diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS). Dr Foulkes brings a rare dual perspective: an Oxford psychologist who researches diagnosis and mental health language, and a patient who spent two decades undiagnosed. If you live with unexplained chronic pain, fatigue, migraines, MCAS, POTS, endometriosis, or hypermobility — this episode is for you. We cover: - The siloed medical system and why it fails complex chronic illness patients - Dr Foulkes’ 23-year diagnostic journey through hEDS, chronic migraine, and endometriosis - The Beighton Scale, hEDS and Hypermobility Spectrum Disorder (HSD), and the changing diagnostic criteria in 2026 - The mental load of rationing medication, energy, and life itself - Self-diagnosis: danger or necessity? - Why diagnosis can feel like relief, not a sentence - Practical strategies for living well within chronic illness - Identity versus illness About Lucy Foulkes Dr Foulkes is an academic psychologist at the University of Oxford, and author of Coming of Age: How Adolescence Shapes Us (2024) and What Mental Illness Really Is… And What It Isn’t (2021).