‘That was my old life; it's almost like a past-life now’: Identity crisis, loss and adjustment amongst people living with Chronic Fatigue Syndrome
Open accessAbstract
Individual in-depth interviews were conducted with 14 people with Chronic Fatigue Syndrome (CFS). The interviews centred on the experience of living with the condition from the participants' own perspectives. All interviews were transcribed verbatim and were analysed using Interpretative Phenomenological Analysis. Three inter-related themes were presented: 'Identity crisis: agency and embodiment'; 'Scepticism and the self' and 'Acceptance, adjustment and coping'. Participants reported an ongoing sense of personal loss characterised by diminishing personal control and agency. An inability to plan for the future and subsequent feelings of failure, worthlessness and insignificance ensued. Scepticism in the wider social environment only heightened the consequential identity crisis. The importance of acceptance for adjusting to a life with CFS was highlighted. The findings are discussed in relation to extant literature and issues for health psychology are raised.
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Acceptance is associated with better mental health-related quality of life (MQoL) in chronic illnesses including CFS.
“cross-sectional studies indicate that acceptance plays a role in adjustment to chronic illnesses, amongst which CFS and that acceptance has been found to be associated with a better mental health-related quality of life (MQoL) [17, 27, 29-31].”
From Cognitive behavior therapy in patients with chronic fatigue syndrome: The role of illness acceptance and neuroticism. (2013) · cites this paper as [30]
Non-accepting cognitions seem to lead to maladaptive activity patterns in patients with CFS, which results in increased fatigue, frustration and a negative QoL.
“non-accepting cognitions seem to lead to maladaptive activity patterns in patients with CFS which results in increased fatigue, frustration and a negative QoL [30-31, 40-41]”
From Cognitive behavior therapy in patients with chronic fatigue syndrome: The role of illness acceptance and neuroticism. (2013) · cites this paper as [30]
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- Authors
- Dickson, A., Knussen, C., & Flowers, P.
- Affiliations
- Edinburgh Napier University (GB)
- Glasgow Caledonian University (GB)
- Corresponding author
- Dickson, Adele
- Venue
- Psychology & Health
- Publisher
- Informa UK Limited
- Published
- 2008-05
- Volume
- 23
- Issue
- 4
- Pages
- 459-476
- ISSN
- 0887-0446 (ISSN-L)
- 1476-8321
- OpenAlex
- W2135749026
- Cited by
- 112
- References
- 81
- Citations by year
- 2026: 6 · 2025: 6 · 2024: 2 · 2023: 4 · 2022: 7 · 2021: 7 · 2020: 8 · 2019: 14 · 2018: 7 · 2017: 4 · 2016: 8 · 2015: 7 · 2014: 4 · 2013: 5 · 2012: 5
- FWCI
- 4.20
- Type
- journal article
- Language
- en
- Open access
- Licence
- cc-by
- Locations
- Psychology and Health (publishedVersion)
- PubMed (publishedVersion)
- ResearchOnline (acceptedVersion)
- Edinburgh Napier Research Repository (Edinburgh Napier University) (submittedVersion)
- Edinburgh Napier Research Repository (Edinburgh Napier University) (submittedVersion, cc-by)
- ResearchOnline (Glasgow Caledonian University) (submittedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Fibromyalgia and Chronic Fatigue Syndrome Research
- Social Sciences › Psychology › Developmental and Educational Psychology › Identity, Memory, and Therapy
- Health Sciences › Medicine › Psychiatry and Mental health › Psychosomatic Disorders and Their Treatments
- Keywords
- chronic fatigue syndrome, identity crisis, embodiment, agency, personal loss, acceptance, coping, adjustment, personal control, lived experience, health psychology
- MeSH terms
- Adaptation, Psychological, Adult, Aged, Female, Humans, Identity Crisis, Male, Middle Aged, Social Environment, Fatigue Syndrome, Chronic, Qualitative Research, Young Adult
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