Endocrine Abstracts

Background: Medical research suggests individuals with KS are visibly different and likely to be affected by their appearance. This can be associated with increased social stigma and increased psychological morbidity. This can undermine an already fragile self esteem, potentially increasing the risk of social isolation, resulting in further psychological distress. This study qualitatively explored the experiences of men living with a diagnosis of KS.

Method: A variety of qualitative data was collected. Semi-structured interviews were carried out conducted in either a one to one situation (n=8); a focus group (n=6); or via email (n=4). Interviews were audio recorded and transcribed verbatim. In addition responses to open ended questions from the KSA impact survey (n=62) were analysed alongside the interview transcripts using inductive thematic analysis.

Results: While the analysis identified two major themes: ‘diagnosis’ and ‘who am I?’, the focus here will be on the theme of ‘who am I?’ Men talked about their experiences of having KS in terms of not feeling or appearing normal. They talked about their unusual sexuality and how, for some, this could vary daily. This was reinforced by their perceived physical and emotional differences, but also from the negative and often humiliating comments from others. During adolescence this was particularly pertinent, where bullying was a common experience. The cumulative effect of these interactions with others was reduced relationship opportunities and social isolation.

Conclusion: Men with KS describe themselves as visibly different, experiencing increased social stigma and psychological morbidity threatening their self esteem and resulting in social isolation. The provision of psychological support and early intervention is strongly recommended.