How do people with autoimmune construct the meaning of illness in online communities?

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Authors: Mufti Fauzi Rahman, Neni Yulianita, Ani Yuningsih, Anne Maryani, Nadia Ushfuri Amini
Cited by: 1

Abstract

Autoimmune diseases have become an increasingly significant global health issue affecting millions of people worldwide. Beyond their biomedical dimensions, these chronic conditions also shape individuals’ psychological, social, and spiritual experiences. This study aims to explore how people with autoimmune diseases construct the meaning of illness through their lived experiences and interactions within online communities. Using a qualitative method with a cyberphenomenological approach, this research was conducted in the online community @cantik2autoimun, which operates on TikTok and WhatsApp Group. Data were collected through digital observation since three months, in-depth interviews with eight participants (patient), and documentation analysis. The data were analyzed using phenomenological thematic coding analysis supported by NVivo 14 software. The findings show that illness is interpreted through multiple meanings, including illness as a test, destiny, a process of life, spiritual reflection, self-acceptance, and experiences of flare and relapse. These meanings are constructed through interactions within the online community, where members share narratives, emotional support, and collective interpretations of illness. The study highlights how digital communities function not only as spaces for information exchange but also as platforms for constructing spiritual and social meanings of chronic illness. Future research may further examine how digital communication shapes coping strategies among individuals living with chronic diseases.

Fields of Study & Subjects

Health Literacy and Information Accessibility Digital Mental Health Interventions Social Media in Health Education

Publication details

Journal / source
العبقري مجلة الثقافة الإسلامية و الإنسانية
Publisher
Universiti Sains Islam Malaysia
Volume
33
Issue
1
Pages
115–128
Publication date
31 May 2026