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

Similarities and differences in the experience of fatigue among people living with fibromyalgia, multiple sclerosis, ankylosing spondylitis and stroke

“…Overexertion or being inactive often resulted in bodily discomfort, pain or stiffness. The patients had learnt to avoid such ‘bodily revenge’ by working out alternative strategies for maintaining an ordinary everyday life (Mengshoel ).…”

Fatigue in Ankylosing Spondylitis: Causes, Consequences and Self‐Management

“…Several quantitative studies explored the causality of fatigue, its relationship with disease activity, its impact on function and mental health (Brophy and Calin, ; Calin et al, ; Da Costa et al, ; Jones et al, ; van Tubergen et al, ), seasonal variations (Jones et al, ; Mengshoel, ; van Tubergen et al, ) and diurnal patterns (Jones et al, ). Studies have also focused on the impact of fatigue on quality of life (Mengshoel, ; Ward, ) and work (Barlow et al, ). Fatigue is as an obstacle to exercise (Sundström et al, ), and this can inhibit management programmes.…”

‘Not-Belonging': Illness Narratives of Mexican Patients with Ankylosing Spondylitis

“…The difficulty in establishing a diagnosis-when the patient and his or her family embark on a long journey, going from one physician to another until a diagnosis is obtained-has previously been described as a 'pilgrimage' (Peláez-Ballestas et al 2006). This journey is necessary because diagnosis bestows sociocultural credibility (Mengshoel 2008). When a name (diagnosis) is given to the illness, it gives meaning and sense to suffering, which can then be shared with family members and physicians: ''As for the suffering, or what I feel I have .…”

“…People suffering with AS endure disease symptoms and accompanying disabilities on a daily basis, often with limited resources, highlighting the importance that clinicians understand AS from a sociocultural standpoint. Clinicians are trained to look for 'NOT-BELONGING' AND CHRONIC PAIN IN MEXICO symptoms to control, such as swelling and pain, but they seldom look for the stressful conditions that are related to accompanying disabilities (Mengshoel 2008). Appropriate care requires that clinicians understand how patients experience and try to manage pain, its limitations on their daily living, and the contextual factors that shape their ability to negotiate health services and access care.…”