Patient experience and diagnostic odyssey
Diagnosis itself can be traumatic — the 2025 phenomenological record
establishedfindingstrata converge
The 2025 BMJ phenomenological study (n=9, in-depth interviews) describes an "endless struggle" marked by uncertainty, dismissal, and medical gaslighting — and urges trauma-informed care at the diagnostic encounter itself. The psychiatric-label misdiagnosis burden is documented alongside it.
| Subtype scope | hEDS, HSD |
|---|---|
| Date | 2025 |
| Criteria era | international-2017 |
| Reviewed | 2026-09-16 |
Evidence
clinicalcohort study
registryregistry analysis
Anxiety and depression were the most-common pre-EDS alternative diagnoses in the registry survey.