EPISODE · May 1, 2026 · 1H 13M
#33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes
from Make Visible: Chronic Illness Explored · host Visible with Emily Kate Stephens
STORIES: Undiagnosed Hypermobile Ehlers-Danlos Syndrome (hEDS) | Chronic Pain, Diagnosis & Living with Complex Chronic Illness For 23 years, Dr Lucy Foulkes has lived with chronic pain, migraines, endometriosis, joint hypermobility, and a cycle of unexplained symptoms. She was seen by neurologists, rheumatologists, urologists, gynaecologists, physiotherapists, and nutritionists. Nobody connected the dots. Then last year, a stranger's Instagram message changed everything, and finally led her to a diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS). In this episode of Make Visible, Dr Foulkes brings a uniquely powerful dual perspective: an Oxford psychologist who researches diagnosis, self-diagnosis, and mental health language, and a patient who spent over two decades undiagnosed. If you are living with unexplained chronic pain, fatigue, migraines, MCAS, POTS, endometriosis, hypermobility, or you have ever been told that your symptoms don't add up, this episode is for you. In this episode we cover: The siloed medical system that treats symptoms in isolation, and why it consistently fails complex chronic illness patients Dr Foulkes' 23-year diagnostic journey through hEDS, chronic migraine, endometriosis, and more The Beighton Scale and how hEDS and Hypermobility Spectrum Disorder (HSD) are assessed, and the potential change in diagnostic criteria in late 2026 The mental load of living with chronic illness: rationing medication, energy, and life itself Self-diagnosis in chronic illness and mental health: danger or necessity? Why diagnosis can feel like relief, not a sentence Practical strategies for living well within the limits of chronic illness Identity versus illness: how not to let your condition become who you are About Lucy Foulkes Lucy Foulkes is a Research Fellow in Psychology at the University of Oxford, specialising in adolescent mental health and social development. She is the author of Coming of Age: How Adolescence Shapes Us (2024) and What Mental Illness Really Is… And What It Isn't (2021). Her essay ‘Welcome To My Body’ is available to read here. Interested in taking part or sharing feedback on Make Visible? Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health
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What this episode covers
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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#33 Hypermobile Ehlers-Danlos Syndrome (hEDS) undiagnosed for 23 years with Dr Lucy Foulkes
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