{"podcast":{"title":"Make Visible: ME/CFS, Long Covid, POTS, EDS, Fibro & MCAS Explored","slug":"make-visible-chronic-illness-explored-7015207","podcast_index_feed_id":7015207,"rss_url":"https://feed.podbean.com/madevisible/feed.xml","website_url":"https://madevisible.podbean.com","image_url":"https://pbcdn1.podbean.com/imglogo/image-logo/19258195/MakeVisible_artwork2000_nwhgpv.jpeg","author":"Visible with Emily Kate Stephens","episode_count":40,"summary":"Shining a light on complex chronic illness. Journalist Emily Kate Stephens discusses the latest research and insights with the world’s leading experts, scientists and healthcare professionals. Including ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, and more, we delve into living with energy-limiting, invisible illness.","last_synced_at":"2026-07-25T06:20:50.842452+00:00","page_url":"https://stenobird.com/podcast/make-visible-chronic-illness-explored-7015207"},"episode":{"title":"#33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes","slug":"33-hypermobile-ehlers-danlos-syndrome-heds-undiagnosed-for-23-years-with-dr-lucy-foulkes","published_at":"2026-05-01T19:51:11+00:00","page_url":"https://stenobird.com/podcast/make-visible-chronic-illness-explored-7015207/33-hypermobile-ehlers-danlos-syndrome-heds-undiagnosed-for-23-years-with-dr-lucy-foulkes","show_page_url":"https://stenobird.com/podcast/make-visible-chronic-illness-explored-7015207","url":"https://madevisible.podbean.com/e/33-undiagnosed-hypermobile-ehlers-danlos-syndrome-heds-for-23-years-with-dr-lucy-foulkes/","audio_url":"https://mcdn.podbean.com/mf/web/bk2zq97eyjcsfm23/Visible_S1_Ep33_Lucy_Foulkes.mp3","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).","meta_description":"For 23 years, Dr Lucy Foulkes lived with chronic pain, migraines, endometriosis, and unexplained symptoms. She saw neurologists, rheumatologists, urologis…","key_points":[],"chapters":[],"topics":[],"duration_seconds":4394,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/make-visible-chronic-illness-explored-7015207/episodes/33-hypermobile-ehlers-danlos-syndrome-heds-undiagnosed-for-23-years-with-dr-lucy-foulkes/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"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","description":"Read the agent-friendly Markdown representation of this episode resource."}]}}