Figure 1.

Social media posts from patients with SJIA or their caregivers regarding the experience of diagnosis through 5 phases.

Notes: (A) Early prediagnosis: patients and their families misunderstood their pain and fatigue, overlooking the problems until a crisis occurred; (B) first misdiagnosis: patients were dismissed as “fakers,” where their initial misdiagnosis was often “growing pains” or “fake pains”; (C) second misdiagnosis: misdiagnosed often as cancer, when the symptoms acutely worsened; (D) tests: confirmatory tests that lead to an SJIA diagnosis; and (E) cognitive identity: focus on the difficulties of dealing with a chronic invisible disease where patients feel ashamed of their arthritis and distressed at being different from their peers.

Abbreviations: JIA, juvenile idiopathic arthritis; SJIA, systemic juvenile idiopathic arthritis.