A qualitative analysis of psychological distress in hidradenitis suppurativa

Background Hidradenitis suppurativa (HS) can negatively impact on patients' quality of life and is associated with a higher risk of depression, as well as difficulties in employment and relationships. Objectives This study sought to evaluate the lived experience of psychological distress in HS. Methods Structured interviews were conducted with 12 participants. These were later transcribed and analysed using thematic analysis. The transcripts and analysis were reviewed by an independent researcher. Results The results indicated that there were three main themes: shame, pain and coping mechanisms. Participants indicated that their feelings of shame were due to disgust at their symptoms. They feared that others would be disgusted if their symptoms were obvious. Participants reported feeling invalidated when others did not understand the severity of their pain. Additionally, they reported that pain left them with a sense of powerlessness over their own bodies. Regarding coping mechanisms, adaptive strategies included social support while maladaptive strategies included social withdrawal. Conclusions These findings are discussed in the context of the existing research on shame, chronic pain and psoriasis. The implications for psychological support for individuals with HS are evaluated. Additionally, the limitations of this study are considered and recommendations for future research are given. This study has highlighted that feelings of shame and physical pain are associated with psychological distress in HS.