Invisibility and diagnosis stigma: disabling factors for female adults with myalgia encephalomyelitis (ME)/chronic fatigue syndrome (CFS) in a small-scale qualitative study in England

Abstract

Purpose Female adults diagnosed with myalgia encephalomyelitis (ME) and chronic fatigue syndrome (CFS) often are marginalised because their condition is not fully recognised by medical and health-care systems. The purpose of this small-scale study was to explore the lived experiences of adult females with ME/CFS in England in relation to contributing factors that impact their occupational participation. Design/methodology/approach A qualitative study design using semi-structured interviews was used with nine female adult participants who were selected using a purposive sampling method. A Thematic Networks tool was used to analyse data. Findings Four organising themes were identified: impairment-, person-, environment- and society-related factors. Two global themes, invisibility and diagnosis stigma, were identified as the overarching issues that female adults with ME/CFS face in occupational participation. Originality/value Many of the issues that contribute to lack of participation by this population are associated with environmental factors which are secondary to their illness.