At just 16 years old, Jonelle was hit by a drunk driver and suffered a broken neck. The only reason she survived is that a friend was driving behind her and rushed to her aid, holding her head in proper alignment to open the airway that had been cut off. After being life flighted to the hospital, Jonelle’s doctors were astonished that she not only survived her injuries, but did not suffer permanent paralysis. An even greater shock would come in her 20s, when Jonelle’s neck was broken a second time in another car accident. This would lead to several surgeries, leaving Jonelle with a poorly understood condition called complex regional pain syndrome (CRPS).
In episode 42 of the Major Pain podcast, Jonelle shares her incredible story of survival and subsequent pain journey. CRPS is not widely known among doctors, often leading to misdiagnosis and improper care. It is characterized by intense pain localized around the site of injury or surgery, disproportionate to the injury in both severity and it’s long-lasting nature. Patients face extreme difficulty in not only managing symptoms, but advocating for care in a system that often disbelieves their situation due to a lack of CRPS awareness. Jonelle shares stories of shocking negligence from multiple doctors, as well as deeply personal reflections on her difficult path. Jonelle has turned to activism through her work with the National Pain Council, helping other chronic pain sufferers get the care they deserve. She has learned a great deal about self-advocacy, and finding joy on the other side of trauma.
This week Jesse participated in a panel discussion on Invisible Disabilities with the ConnecTra Society. You can watch the archived live stream here: https://www.youtube.com/watch?v=mxM4GqjpHUM
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast