Painful subjects: the sociogenic processing of pain in individuals with Ehlers-Danlos syndromes

It is well demonstrated that the chronic pain experienced by individuals with Ehlers-Danlos Syndromes (EDS) has a negative effect on their overall quality of life. Despite this, this population experiences high levels of doubt and invalidation from clinicians regarding the frequency and intensity of their pain. In this qualitative study, we interviewed 39 individuals with EDS in order to investigate how experiencing doubt from clinicians impacted their self-perceptions of pain. Contrary to the claim that pain is a purely private phenomenon, our participants’ experiences were mediated by social dynamics related to epistemic and power asymmetries. These asymmetries affected their willingness to acknowledge their pain to others, to judge it against the experiences of those whom they considered biomedically “normal,” and even to discount the reality of their pain experience. In analyzing these findings, we examine the discursive and intersubjective forces that shape the experience of chronic pain in this population and argue for the expansion of the biopsychosocial model to include these sociogenic processes by which patients rearticulate and reconceptualize their pain to match clinical expectations of “normal” symptoms. • We found that our participants experience of and relationship with their disease-related pain was mediated by social factors, such as the doubt that they encountered from their clinicians. • Clinician doubt regarding pain was found to have a profound impact on one’s personal pain experiences, sometimes causing participants to question the very reality of their pain. • Participant’s pain experiences could be understood to undergo a sociogenic process as outlined by Franz Fanon and Sylvia Wynter.