Tag: identity

“I would love to say it’s the fatigue but honestly it’s not”: Into Adulthood with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a debilitating and poorly understood condition which interferes with adolescents’ typical development. This study aimed to explore the experience of transitioning into adulthood from the perspective of adolescents and young adults (16-25yo) with CFS/ME.

Thirteen young people recruited through a community allied health clinic in Victoria, Australia, participated in semi-structured interviews. Interviews were analysed using reflexive thematic analysis and produced the following themes: Independence: a different path or an inaccessible adulthood? Identity: who could I have been? Isolation and disconnection: being with people but not being like them.

Our analysis of these themes suggests several avenues to support young people with CFS/ME and their families. Mental health professionals may have a specific role in helping foster assertiveness and confidence, assisting identity exploration and understanding, and supporting families in helping their adolescent to continue to develop psychologically.

Source: Tenhave, A., Bognar, R., & Sidis, A. (2025). “I would love to say it’s the fatigue but honestly it’s not”: Into Adulthood with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Psychology, Health & Medicine, 1–19. https://doi.org/10.1080/13548506.2025.2495891 https://www.tandfonline.com/doi/full/10.1080/13548506.2025.2495891 (Full text)

Using Communities of Practice Theory to Understand the Crisis of Identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

Abstract:

Objective: To explore the crisis of identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) through the lens of Communities of Practice.

Methods: A closed Facebook group was created to gather qualitative data from participants diagnosed with CFS/ME (n = 22). Data were analysed using a theoretical thematic analysis.

Results: The current research revealed the reality of enabling and disabling communities in the lived experience of CFS/ME and the role of participation in developing empowered identities. Learning how to be alongside CFS/ME aligned with participants’ experiences of purpose and meaning. New identities may be developed which are not centrally defined by loss or stigma.

Discussion: Participation in supportive communities enables CFS/ME identities to emerge as a platform for positive change. Engaging with the CFS/ME virtual community may be a way for both families and health professionals to reflect on current practice.

Source: Murray R, Turner L. Using Communities of Practice Theory to Understand the Crisis of Identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Chronic Illn. 2021 Dec 6:17423953211064989. doi: 10.1177/17423953211064989. Epub ahead of print. PMID: 34866419. https://journals.sagepub.com/doi/10.1177/17423953211064989 (Full text)

From a lived body to a medicalized body: diagnostic transformation and chronic fatigue syndrome

Abstract:

This paper addresses the diagnostic dilemma posed by chronic illness that offers no demonstrable evidence of serious physical disorders or pathology. Is a diagnosis such as chronic fatigue syndrome (CFS) disabling because it encourages people to identify with it? Does it become a self-fulfilling prophecy? In providing people with a name, and thus allowing them to confirm the legitimacy of their suffering, a diagnosis of CFS may help them to relate to their world and, hence, facilitate their recovery.

One of the most relevant questions pertaining to a diagnosis of CFS concerns how people deal with suffering when it does not come with a biomedically established pathology. I draw upon material provided by 21 men and women diagnosed with CFS. My analysis concerns the ambivalence involved in the diagnostic process and its implications for the relationship between self-identity and chronicity.

Comment in: Transformations and reformulations: chronicity and identity in politics, policy, and phenomenology. [Med Anthropol. 2001]

 

Source: Sachs L. From a lived body to a medicalized body: diagnostic transformation and chronic fatigue syndrome. Med Anthropol. 2001;19(4):299-317. http://www.ncbi.nlm.nih.gov/pubmed/11800317

Chronic illness — a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia

Abstract:

BACKGROUND: People with chronic illnesses often suffer from identity-loss. Empirical research concerning patients with chronic fatigue syndrome (CFS) or fibromyalgia has not, however, adequately addressed the consequences of these illnesses for identity.

AIM: The aim of this article is to describe how women with CFS and fibromyalgia create new concepts of identity after the onset of illness, and how they come to terms with their newly arisen identities. I aim to illuminate the biographical work done by these individuals, which includes a re-evaluation of their former identity and life. This process is illustrated by the following themes: An earlier identity partly lost and Coming to terms with a new identity.

METHOD: The study is based on interviews with 25 women in Sweden, 12 with the diagnosis of CFS and 13 diagnosed with fibromyalgia. A grounded theory orientated approach was used when collecting and analysing the data.

FINDINGS: The main findings are that: (1) the illnesses can involve a radical disruption in the women’s biography that has profound consequences for their identity, particularly in relation to work and social life, (2) biographical disruptions are partial rather than total, calling for different degrees of identity transformation, (3) many of the women also experience illness gains in relation to the new identity.

CONCLUSIONS: Thus, the biographical disruption and illness experience comprised both losses and illness gains that had consequences for identity.

 

Source: Asbring P. Chronic illness — a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia. J Adv Nurs. 2001 May;34(3):312-9. http://www.ncbi.nlm.nih.gov/pubmed/11328436