The Experience of Body Image in People with Sickle Cell Disease

Abstract

Sickle Cell Disease (SCD) is a significant genetic blood disorder, causing a vast number of possible health complications, with a potentially huge impact on adjustment and quality of life. As with many other chronic illnesses, there has been some interest in the self-concept of people with SCD, and within that on their body image. However, research into body image for those with SCD remains limited in scope, and has frequently imported pre-existing and potentially culturally inapt concepts and measures to do so.

This study, therefore, is an exploratory qualitative project, to look at how people with SCD relate to their bodies and conceive of their body image. Data was collected from online blogs written by people with SCD, with approximately 500 posts collected. Data was analysed in the Reflexive Thematic Analysis framework, using an inductive approach and social constructionist epistemology.

Two themes, with two sub-themes each, were generated by the researcher: ‘The Battle with my body, and how to win it’ including ‘Body, blood, cells, genes as enemy’ and ‘Victory through loving one’s enemy’, and ‘My pain-filled body is unique and central to my identity’ including ‘Identification with the body strengthened by SCD’ and ‘Pain maintains the awareness of SCD’. The findings suggest that there are a range of ways of relating to the body for people with SCD: The body is made a central part of one’s identity through the experience of the illness and that one’s relationship to it can be one of hostility and enmity, but this can develop into one of love and nurture. Clinical implications of these findings could be the development of interventions for those with SCD where this body relating impacts on their well-being, as well as increasing awareness for physical health practitioners and joining up with other love-as-liberation movements.