Background: Chronic pain is a central and persistent feature of autoimmune rheumatic diseases, yet quantitative measures often fail to fully capture patients’ lived experiences. Understanding how people describe and live with pain in everyday life is essential for developing patient-centred approaches that address physical, emotional, and social dimensions of disease. Qualitative patient-reported evidence is increasingly recognised as essential for informing patient-centred care, research priorities, and health policy in rheumatology.

Objectives: To explore how adults with autoimmune rheumatic diseases describe their experience of chronic pain, focusing on its persistence, variability, emotional burden, and impact on daily life, sleep, work, and social participation. The study also aimed to identify recurring patterns and language used by patients to describe pain, in order to better characterise its multidimensional nature and inform patient-centred research and care approaches.

Methods: This qualitative study was part of a patient-led survey organised by the Hellenic League Against Rheumatism (ELEANA). Participants completed a structured survey and provided an open-ended written description of their pain experience. Free-text responses were analysed using an inductive thematic analysis, allowing themes to emerge from patient narratives. Themes were not mutually exclusive, enabling individual responses to contribute to multiple domains. A descriptive lexical analysis was additionally conducted to identify frequently used words and expressions related to pain.

Data analysis was conducted iteratively, with ongoing comparison across responses to ensure thematic consistency and depth.

Results: A total of 140 participants provided qualitative responses. Seven main themes emerged: persistent and constant pain; fluctuating intensity and unpredictable flare-ups; limitations in physical functioning and daily activities; sleep disturbance and fatigue; psychological and emotional burden; impact on work and social participation; and experiences of invisible pain and lack of validation. Pain was commonly described as a baseline condition rather than episodic, with participants reporting difficulty planning daily activities due to unpredictability. Functional limitations were frequently linked to reduced endurance and loss of independence. Sleep disturbance and fatigue were closely intertwined with pain, contributing to cumulative physical and emotional exhaustion. Psychological burden included frustration, low mood, anxiety, and emotional vulnerability. Pain was also reported to affect work ability and productivity, as well as social participation, leading to withdrawal and isolation. Many participants described feeling misunderstood or not believed by others, particularly due to the invisibility of pain. Lexical analysis highlighted frequent use of language reflecting both physical and emotional dimensions of pain, reinforcing its multidimensional nature. Pain was rarely described as an isolated symptom. Participants consistently portrayed pain as interacting with other aspects of their condition, contributing to cumulative burden over time. The coexistence of pain with fatigue, sleep disturbance, emotional strain, and functional limitations reinforced a cycle in which pain intensified overall disease impact. Several participants highlighted that the persistence and invisibility of pain affected their interactions with others, influencing perceptions, expectations, and support received in daily life. These findings suggest that pain is experienced not only as a physical sensation but as a continuous, context-dependent process shaping multiple domains of living.

Conclusions: Patient narratives demonstrate that chronic pain in autoimmune rheumatic diseases is a continuous and multifaceted experience extending beyond physical symptoms. Pain shapes daily life, sleep, emotional wellbeing, work participation, and social relationships, often compounded by invisibility and lack of validation. Qualitative patient-reported data provide essential insights that complement quantitative measures and support the integration of patient perspectives into research, clinical practice, and policy to promote more holistic and patient-centred approaches to pain management. These findings highlight the value of qualitative, patient-led research in capturing dimensions of pain that remain underrepresented in routine clinical assessment.

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Acknowledgments: NIL.

Disclosure of Interests: None declared.