Background Systemic juvenile idiopathic arthritis (SJIA)/Still's disease is a rare form of chronic arthritis in pediatrics. The patient perspective of living with the disease is not well understood, particularly among adolescent age patients.
Objectives The objective was to understand the adolescent SJIA experience as shown by their own social media posts.
Methods English posts from SJIA patients were reviewed on public social media sites.
Results 71 posts with a date range of 2009–2015 on 15 sites were reviewed in Nov 2015. 24 unique authors were identified: 17 SJIA patients (40 posts) and 7 mothers of SJIA patients (12 posts). Patients were aged 13–20 years. Several patients posted about similar diagnostic experiences marked by 5 stages: (1) misunderstood with their pain and fatigue being overlooked until a crisis occurs, (2) dismissed as “fakers”, where their initial misdiagnosis is often “growing pains” or “fake pains”, (3) misdiagnosis, often as cancer, when the symptoms acutely worsen (4) testing stage that leads to an SJIA diagnosis, and (5) focus on the difficulties of dealing with a chronic invisible disease where they feel ashamed of their arthritis and distressed at being different from their peers. Many adolescent patients, looking back at the onset of the disease when they were children, describe themselves as a “sleeping child” rather than the typical active, playing child. Patients describe trying to hide their illness from friends, but express their concerns more openly online. Patients also describe anger directed at SJIA which is described as a powerful external enemy attacking their body, using terms like “bulldozer,” “dragon”, and “monster'.' Many posters used superhero language or imagery in their social media posts to help them “fight” the disease and their struggle. Mothers of SJIA patients also used warrior-child imagery and language in their posts. Some SJIA patients also posted about the risk of death, or shared stories about other SJIA patients who died which is a distinct difference from non-SJIA patients. Many patients also have adopted the term “spoonie” to describe themselves as living with a chronic disease, a term that originated in the autoimmune community to refer to how people with chronic conditions manage their energy throughout the day. Only the older teenagers used the term Still's.
Conclusions Adolescent SJIA patients posted openly about the difficulties of their disease causing them to be different from their healthy friends, whereas in the real world they tried to minimize or hide the effects of their disease. They frequently used superhero words and images in posts in describing their fight for health. Physicians can use these insights when counseling adolescent SJIA patients to provide a narrative that meshes with the patients' worldview and perhaps, by speaking a similar language, could increase treatment adherence.
Disclosure of Interest R. Modica: None declared, K. Lomax Employee of: Novartis Pharmaceuticals Corp, P. Batzel: None declared, A. Cassanas: None declared, M. Elder: None declared