Fragile Rights: Ehlers-Danlos, Invisible Pain, and the System That Fails

In this raw and essential conversation, host Keith Murfee- DeConcini sits down with poet and author Jessica MacLean. Jessica shares her lifelong journey navigating Ehlers-Danlos Syndrome (EDS) and spina bifida occulta—invisible conditions that affect every system in her body. From experiencing her first migraine at age seven to surviving a literal broken back caused by a simple change in position, Jessica details the profound physical toll of living with a tissue connectivity disorder. The discussion takes a harrowing turn as Jessica recounts her recent experience being "wrongfully Titled" (Title 36), a legal process that stripped her of her rights and placed her in a psychiatric facility ill-equipped to handle her complex medical needs. We explore the dangerous gap between mental health protocols and physical disability awareness, the trauma of medical institutionalization, and how the "positive vibes only" expectation from society ignores the reality of chronic suffering. Despite the systemic failures and constant pain, Jessica shares how she finds sanctuary in the creative community of Prescott, Arizona—using poetry, music, and the wildlife in her yard to find "wild care where there is no cure."