Men's experiences of living with ankylosing spondylitis: a qualitative study

The majority of patients with ankylosing spondylitis (AS) are male, although potential gender differences have not been investigated in relation to disease management. Moreover, men's perceptions of experiencing AS have not been reported in the literature.

This study sought to develop an understanding of how men experience AS and the challenges related to living with AS as a chronic disease.

A purposive sample of 13 men diagnosed with AS, with a median age of 44 years (range 32-58) was recruited from a rheumatology outpatient clinic. The median duration of disease was 12 years (range 0.3-28 years), and the median time from the first symptom to final diagnosis was seven years (range 2-20 years). Semi-structured interviews were conducted using an interview guide, and the interviews were analysed using content analysis inspired by Graneheim qualitative methodology.

The analysis revealed four categories: (1) 'Approaching a diagnosis'; (2) 'Ill in a social context'; (3) 'Challenged as a man'; and (4) 'The importance of remaining physically well'. Based on these categories, the overall category of 'An invisible companion for life' emerged, which captures the experience of living with an invisible, life-long disease.

These findings demonstrate that AS impacts men's perceptions of themselves as men, relationships as a partner and father, social lives, and masculine identity. Physical activity was highlighted as an important part of being a man, and not being able to exercise challenged the men's masculine identity.