‘The letting go, the building up, [and] the gradual process of rebuilding’: Identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome

Abstract

The aim of this study was to explore the phenomenon of identity change and subsequent post-traumatic growth (PTG) in individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Ten participants (average illness duration 7.4 years) were interviewed (average length, 79 minutes) via a semi-structured interview schedule and verbatim transcriptions were analysed with interpretative phenomenological analysis. The four superordinate themes revealed were 'comparisons of past to present self: "you have to be someone else, and you have to live with that''', 'the effect of social isolation on identity and subsequent insights into others' behaviours', 'contemplation of future and identity: ''where do I go from here?"', and 'PTG: "the letting go, the building up, [and] the gradual process of rebuilding"'. These themes outlined the experiences of those with ME/CFS as they underwent changes in identity due to the limitations the condition imposed on activities and roles, understanding others' behaviours after a period of isolation, the comparison of the past self with the present self and finally, the positive growth that was noted by two of the interviewees with regards to a new 'true' self. Despite the distressing and unpredictable nature of ME/CFS, it appears that individuals with this disorder can experience personal growth.

‘Betwixt and between’; liminality in recovery stories from people with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)

“…The lived experience of ME/CFS has been detailed in previous work (Anderson et al 2014) but there is so far no published material on the lived experience of recovery from the syndrome. While Arroll and Howard (2013) have characterised the process of living with ME in the longer term as 'post-traumatic growth', so far research has tended to focus on symptoms which persist and whose severity continues unabated. The contested and variable nature of the condition means compiling recovery data is problematic, so for those whose symptoms eventually abate, the ambiguity of their status is deepened.…”

Posttraumatic Growth in Individuals With Chronic Illness: The Role of Social Support and Meaning Making

“…Posttraumatic growth (PTG) is a process whereby individuals show positive personal growth after experiencing a significant life‐altering event or circumstance (Rogan, Fortune, & Prentice, ). Scholars have begun to examine PTG for individuals living with a variety of chronic illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome (Arroll & Howard, ), HIV/AIDS (Amos, ; Sherr et al, ), stomach cancer (Sim, Lee, Kim, & Kim, ), and acquired brain injury (Rogan et al, ). Continued research surrounding PTG is all the more relevant when considering the potential for positive emotional and physical health benefits as a result of experiencing such growth.…”

“…Given the dearth of research exploring PTG, Sherr and colleagues () made a call for more evidence‐based research surrounding this topic. Individuals with chronic illness have identified the impact of social isolation (Arroll & Howard, ) and social support (Adams, ; Livneh & Antonak, ) on coping and their personal growth process. Besides social factors, Powell, Gilson, and Collin () identified meaning and purpose as significant predictors of PTG.…”

Acceptance and identity change: An interpretative phenomenological analysis of carers’ experiences in myalgic encephalopathy/chronic fatigue syndrome

“…Acceptance has been 35 described as a long and difficult journey for ME/CFS patients, but it makes life easier 36 once reached (Edwards, Thompson and Blair, 2007). Part of this involves 'letting go' of 37 old identities and accepting new selves (Arroll and Howard, 2013;Dickson et al, 2008). 38…”

“…Data were analysed using interpretative phenomenological analysis (IPA; Smith, 2004). IPA has been used successfully to explore attitudes and experiences of ME/CFS patients (Arroll and Howard, 2013;Arroll and Senior, 2008;Dickson et al, 2007). IPA has been described as particularly useful to provide insight into complex, ambiguous and emotionally laden subjects (Osborn and Smith, 1998), making it an appropriate method to explore caring experiences in this stigmatised chronic condition.…”