Background: Systemic lupus erythematosus (SLE) predominantly affects women, leaving men underrepresented in both research and clinical attention. With male patients comprising only a small proportion of the lupus population, their unique experiences, psychosocial needs, and self-perceptions remain underexplored.

Objectives: To understand the experiences of different aspects of living with lupus in men living with the disease.

Methods: As part of Lupus Europe Swiss Knife survey 2024 programme, a set of specific questions was raised to men with lupus. A total of 182 self-identified men with lupus living in Europe, from 24 countries with an average age of 48.51 (±15.69) took part. Of those 139 (76.3%) declared Caucasian origin, 18 (10%) non-Caucasian and 25 (13.7%) opted not to answer. The survey had a total of 81 questions, 7 of which focused specifically on men’s experiences. Qualitative thematic analysis was conducted on responses for 1 of those 7 answers to explore how lupus affects their self-image as men. Responses were systematically coded and grouped into themes, capturing a range of experiences.

Results: On thematic analysis men reported a distinct set of experiences with lupus. From the 89 respondents who answered the question “how (if at all) your lupus affects your image of yourself as a man” 27% of respondents (n=24) described difficulty fulfilling traditional masculine roles, such as providing for their families, due to fatigue, pain, or other symptoms; as one respondent shared, “I’m no longer able to carry out work that before I’d be happy doing, and it makes me feel less of a man to have to ask for help.” 17% (n=15) reported feelings of diminished self-worth, shame, or embarrassment; one participant stated “I’m no longer a man, just a living being, but dead inside.” 10% (n=9) mentioned changes in physical appearance, including hair loss, weight gain, or skin issues, which negatively affected their self-image, with one respondent stating “I’m not who I was; it’s as if I’ve been ‘reset’ and turned into someone else.”8% (n=7) of participants expressed a loss of connection to their sense of masculinity or self, describing themselves as feeling like a “different person” 7% (n=6) displayed adaptive coping mechanisms, framing lupus as a challenge they work to overcome or integrate into their lives. Interestingly, 26% (n=23) reported that lupus gave a neutral response or said their lupus had no discernible effect on their self-image while 5% (n=4) highlighted concerns about their ability to maintain their health, support their families, or manage future complications.

Conclusion: For 3 out of 4 male lupus patients, lupus significantly impacts their self-image as a man not only through physical symptoms, but also through perceived psychosocial, identity-related challenges or reduced functional capacity. Providing tailored support should be further developed to help male lupus patients navigate this part of their lupus life.

REFERENCES: NIL.

Acknowledgements: NIL.

Disclosure of Interests: None declared.

© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.