# #33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes

Page: https://stenobird.com/podcast/make-visible-chronic-illness-explored-7015207/33-hypermobile-ehlers-danlos-syndrome-heds-undiagnosed-for-23-years-with-dr-lucy-foulkes
Text version: https://stenobird.com/podcast/make-visible-chronic-illness-explored-7015207/33-hypermobile-ehlers-danlos-syndrome-heds-undiagnosed-for-23-years-with-dr-lucy-foulkes.md
Podcast: [Make Visible: ME/CFS, Long Covid, POTS, EDS, Fibro & MCAS Explored](https://stenobird.com/podcast/make-visible-chronic-illness-explored-7015207)
Published: 2026-05-01T19:51:11+00:00
Episode link: https://madevisible.podbean.com/e/33-undiagnosed-hypermobile-ehlers-danlos-syndrome-heds-for-23-years-with-dr-lucy-foulkes/
Audio file: https://mcdn.podbean.com/mf/web/bk2zq97eyjcsfm23/Visible_S1_Ep33_Lucy_Foulkes.mp3
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Duration seconds: 4394

## Resource

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).

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