When the Patient Is Left to Connect the Dots

After unexplained facial and neck pain escalated into debilitating migraines and widespread symptoms, Monica Dubeau spent 20 months navigating 111 medical appointments with 26 specialists across four states and two countries before receiving a diagnosis of craniocervical instability. Further evaluation revealed Chiari malformation, tethered cord syndrome, and hypermobile Ehlers-Danlos syndrome—a connective-tissue disorder that she says helped explain a constellation of problems previously treated separately. Drawing on her career in governance, risk, and audit, Dubeau approached her medical journey as an investigation, tracking symptoms, test results, care providers, and patterns across health systems. Dubeau, patient advocate and founder of YouMightBeAZebra.com, discusses how her professional background helped her investigate her own case; why she views brief clinical visits and fragmented care as systemic failures; and what health systems, insurers, clinicians, and policymakers could do to shorten the road to a diagnosis for people with rare diseases.