Living with a fluctuating illness of ankylosing spondylitis: a qualitative study

To examine the relationship between illness fluctuations and how people with ankylosing spondylitis (AS) adapt to everyday life situations.

Twelve respondents, 8 women and 4 men, age 30-59 years with an AS duration of 6 months to 40 years participated in qualitative interviews. They were asked to give examples of how they lived their everyday life during good and bad times of illness. The text analyses consisted of familiarization with the content, identifying and coding meaningful statements, sorting them into categories, and condensing themes.

Three different types of situations for those living with AS emerged from the analysis: ordinary life, slowed-down life, and disrupted life. Ordinary life included managing symptoms by incorporating motion into everyday life routines and adjusting tasks in work situations, sports activities, home life, and social activities. During slowed-down life, an acute or insidious onset of stiffness and fatigue occurred that could be reversed by slowing down ordinary life for a period of time. During disrupted life, the respondents were unable to cope with everyday life because of inexplicable and unmanageable intense, localized, or distributed pain.

By examining the relationships between illness and what people do to recover, 3 different life conditions were found: ordinary life, slowed-down life, and disrupted life. Living with AS requires a continuous but varying process of normalization of symptoms and everyday life within the framework of these 3 illness conditions.