Stigma and the delegitimation experience: an interpretative phenomenological analysis of people living with chronic fatigue syndrome

Individual in-depth interviews with 14 people with chronic fatigue syndrome (CFS) were conducted, focusing on the experience of living with CFS. The interviews were transcribed verbatim and were analysed for recurrent themes using interpretative phenomenological analysis (IPA). Here we present two inter-related themes: "Negotiating a diagnosis" and "Negotiating CFS with loved ones". Participants reported delay, negotiation and debate over diagnosis: further, they perceived their GPs to be sceptical, disrespectful and to be lacking in knowledge and interpersonal skills. However, participants found delegitimising encounters with their partners more difficult to deal with. Participants viewed such delegitimation as a form of personal rejection; they were hurt by their loved ones' reactions and subsequently pondered the price of love, respect and friendship. The findings are discussed in relation to extant literature, and recommendations for future research are suggested.