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

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