The importance of learning from people with lived experiences of eating disorders

Improving eating disorder (ED) care in a meaningful and equitable way requires clinicians and researchers to learn from people with lived experiences (PWLE) of EDs. Thus, epistemic injustice faced by individuals who are denied the right to share their experiential knowledge with professionals is a barrier to improving ED care. The present commentary builds on a two-part article series published last year in the Journal of Eating Disorders, where recommendations for improving ED care are offered from my lived experience and quality improvement (QI) perspective. In this complementary piece, I present examples of lessons that I have learnt since the 2025 article series was written, thereby highlighting the wider importance of learning from PWLE. Specifically, I discuss lessons that I have learnt from ED sufferers diagnosed with borderline personality disorder (BPD), male ED sufferers, and longstanding ED sufferers. The complexity and diversity of their lived experiences lead to the conclusion that all-inclusive ED care models must be built using the precious building blocks of knowledge that PWLE offer us.