From illness to belonging: dynamics of autoimmune experience in an Indonesian online community

Abstract

This dissertation investigates how people living with autoimmune illness construct and reconstruct their experiences of illness through participation in an online community in Indonesia. Using a cyberphenomenological approach, the study explores how lived experiences, social interactions, and shared meanings develop within the Cantik2autoimun community on TikTok and WhatsApp. Data were generated through in-depth interviews with eight people living with autoimmune illness, digital observation, and analysis of community interactions. The findings show that participation develops through interconnected processes of entry and awareness, emotional bonding, knowledge circulation, reconstruction of the meanings of illness and remission, identity and agency formation, community governance and ethics, and transformation of quality of life. The study demonstrates that online communities are not merely spaces for exchanging health information but also social and intersubjective environments in which people reconstruct the meaning of illness, develop belonging, exchange experience-based knowledge, and build agency. The research contributes to understanding how digital communities reshape experiences of chronic and often invisible illness in contemporary Indonesia.