‘My bones won’t break me.’ A reflective topical autobiography exploring the experience of living with premenopausal osteoporosis.

Abstract

Premenopausal osteoporosis is a poorly understood condition in which otherwise healthy, premenopausal women have very low bone mineral density. This makes them susceptible to low trauma fractures that are both painful and debilitating. Being diagnosed with a chronic condition at any age has been shown to have profound psychosocial implications for the individual. A diagnosis of osteoporosis for a premenopausal female is significant as the condition is most commonly associated with postmenopausal women. For a young woman, therefore, the age of diagnosis contrasts markedly from the common cultural paradigm for the condition, with its established health care pathway and support systems. There is a paucity of literature on the patient experience of osteoporosis and literature on the patient experience of premenopausal osteoporosis seems absent altogether. The aim of this study is to explore the experience of living with osteoporosis, as a young active female. Autobiographical methodology was employed utilising a reflective topical autobiographical approach. Data included personal diary and blog entries over a two year period, from pre-diagnosis, to 21 months post diagnosis. This allowed the breadth and depth of the experience of living with premenopausal osteoporosis to be captured through storytelling. Seven reflective themes were produced from the illness experience data: Engagement with the medical profession; information seeking as an educated patient; managing invisibility and disclosure; social interaction; the impact on physical activity; a stranger in a biomedical land; and the emotional journey. The experience of living with premenopausal osteoporosis was found to be a disruptive and dehumanising one. Each element of the experience was impacted upon through the resonance of biographical and emotional echoes from biographical antecedents, such as life experiences, coping resources and personality. These echoes drove the journey through diagnosis and subsequent living with the condition and reinforce the idiographic nature of chronic illness experiences.