Disputing Diagnoses: The Biopsychosocial Realities of Life with an ‘Invisible’ Rare Disease

Disputing Diagnoses: The biopsychosocial realities of life with an ‘invisible’ rare disease” The concept of "diagnosis" carries different meanings for patients, clinicians, scientists, and advocates, particularly in the context of rare diseases like Ehlers-Danlos Syndromes (EDS), a spectrum of connective tissue disorders characterized by chronic pain. This talk explores the role of genetic testing in symptom validation, the contested boundaries between physical and psychogenic illness, and the sociopolitical consequences of these debates for individuals and communities. By examining how different stakeholders enact and negotiate the meaning of diagnosis, this talk explores the impact of nosological systems on patient identity, biomedical legitimization, and access to care.