Hidden disabilities in patients with autoimmune rheumatic disease: an invisible barrier to daily functioning and...

Patients with autoimmune rheumatic disease (ARD) frequently experience invisible yet disabling symptoms, including chronic pain, fatigue, mobility issues, sensory impairments, and cognitive dysfunction. These hidden disabilities can hinder daily functioning, particularly in accessing healthcare via public transportation. This study explored real-life experiences of patients with ARD, focusing on how their condition affects daily life and perceptions of public transportation accessibility for hospital visits in Jakarta.

A qualitative study using focus group discussions was conducted in May 2024 with 14 patients with ARD aged 18 to 60 years who regularly used public transportation in Jakarta. All participants had nonvisible disabilities. Individuals using mobility aids, holding disability identifiers, or pregnant were excluded.

The primary theme focused on participants' perceptions of their disease and treatment, highlighting the impact on daily life, unpleasant hospital visit experiences, and coping attitudes. The second theme focused on accessibility of public transportation, emphasising issues with difficulties in using public transportation, infrastructure, and personnel awareness. Third, participants discussed the importance of identifiers for hidden disabilities, including methods for identification, disability groups categorisation, and attitudes towards advocacy efforts for hidden disability.

Hidden disabilities profoundly affect patients' with ARD daily lives, particularly their ability to navigate public transportation. Patients with ARD were not regarded as a priority group in public transportation, which hindered their access to healthcare facilities. Introducing identifiers for individuals with hidden disabilities can enhance public awareness and improve accessibility, supporting better traveling experiences in public transportation for this group.