Individuals with Ehlers-Danlos Syndromes (EDS) experience chronic pain that consistently has a negative impact on their overall quality of life. Despite the large bodies of evidence supporting this, such individuals still experience doubt and invalidation from clinicians regarding this pain. Such cases of chronic pain are often analyzed from a lens of the individual’s subjective character of experience, that is, the individual’s pain is a private experience, making it difficult to quantify or measure. In this qualitative study, IUCB Assistant Research Professor, Tom Doyle, PhD, Research Assistant, Sam Vershaw, and Faculty Investigator, Colin Halverson, PhD, set out to explore how doubts and invalidations from clinicians can affect the self-perceptions of pain in individuals with EDS.
Despite the claims that pain is a purely private phenomenon, Doyle and team found that their participants’ experiences were affected by certain social dynamics related to epistemic and power asymmetries. These affects were broken down into three major themes: professing pain, normality and pain, and the self-assessment of pain. Each major theme had several subthemes, including “anticipating dismissal,” in which patients preemptively minimized how they expressed their pain, “discovering abnormality,” in which patients altered their pain experiences based on the discovery that their pain was abnormal, and “is the pain real,” in which clinician skepticism lead to patients questioning the validity of their pain. As these findings emphasize that pain is more than just a private phenomenon, it is of the utmost importance that clinicians expand their view of pain to include these sociogenic processes which alter how pain is experienced.
You can read the full study here.