Investigating liminality in the lived experiences of young adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Toller, L
University of Exeter
PhD in Sociology
[Line breaks added]
Abstract
This study investigates the lived experiences of young adults (aged 18-25) with ME/CFS through the conceptual lens of liminality. It explores how the different liminal states of a transitional life stage, contested illness, chronic illness and fluctuating symptoms overlap to result in a complex illness experience. It also investigates how these young adults experience and negotiate the in/visibility of their illness in relation to socio-cultural expectations, public/private settings and fluctuating symptoms.
Although some research has investigated illness experiences using this concept, it has tended to focus on liminality stemming from illness as either contested or chronic; this thesis extends the focus by combining the two, as well as considering symptom experience and life stage as further dimensions of liminality for young adults experiencing chronic illness, specifically a highly contested and fluctuating one.
The design of my study was qualitative, combining verbal and visual methods, aiming to capture the everyday, often unseen and ‘boring’ aspects of life with chronic illness. I used episodic interviews, participant-generated photographs, and photo elicitation interviews with 19 young British adults diagnosed with ME/CFS. The study design was deliberately flexible to make participation accessible to both the chronically ill participants and researcher (myself).
The analysis encompassed both narrative and thematic aspects. I provide a narrative analysis of two case studies highlighting issues and experiences present across the data set: that the misfit between young adulthood and illness was significant, and that they experienced multiple forms of sustained liminality due to their transitional life stage, fluctuating symptoms, the temporal fixation of the ‘temporary’ state of illness, and strategies enabling movement between the worlds of health and illness.
My thematic analysis identified three main themes. The first centres on the ab/normality of the ill body, which caused participants to experience the liminalities of being set apart with (bodily) norms suspended, and being betwixt and between health and illness. I argue that responses to ME/CFS can be seen as ways to negotiate its liminality, and suggest two novel forms of delegitimation – the complete dismissal of symptoms and the narrative ‘restitutionalisation’ of chronic illness into a temporary condition – that offer a more nuanced picture of negative responses.
The second theme focuses on the shifting in/visibility of illness, drawing out ways it became visible at certain times, in certain places, to certain people, providing another example of betwixt and between liminality.
The final theme explores the intersection of life stage and illness, highlighting this as significant to participants’ experiences. Illness disrupted their ability to meet idealised life stage norms and achieve milestones; this could lead to becoming stuck in the transition to adulthood, exclusion from the ‘normal’ world, and shifting between worlds of health and illness.
This study contributes to the literature on contested illness, highlighting the significance of life stage in illness experiences. Findings also develop previous work on contested and chronic illness by expanding the concept of liminality, showing that young adults with ME/CFS inhabit a complex web of simultaneous and shifting liminal states stemming from their life stage, illness symptoms and characteristics, and the perceptions of others.
I conclude that a model of multiple liminalities, drawing together varied experiences and elements, can help build a richer picture of life as a young adult with ME/CFS. I also argue that the novel combination of episodic interviews and participant-generated photos offered access to normally unseen parts of life, suggesting that this offers a valuable way for future research to ‘see’ more of life with chronic illness.
Link (Thesis) [Under embargo]
Toller, L
University of Exeter
PhD in Sociology
[Line breaks added]
Abstract
This study investigates the lived experiences of young adults (aged 18-25) with ME/CFS through the conceptual lens of liminality. It explores how the different liminal states of a transitional life stage, contested illness, chronic illness and fluctuating symptoms overlap to result in a complex illness experience. It also investigates how these young adults experience and negotiate the in/visibility of their illness in relation to socio-cultural expectations, public/private settings and fluctuating symptoms.
Although some research has investigated illness experiences using this concept, it has tended to focus on liminality stemming from illness as either contested or chronic; this thesis extends the focus by combining the two, as well as considering symptom experience and life stage as further dimensions of liminality for young adults experiencing chronic illness, specifically a highly contested and fluctuating one.
The design of my study was qualitative, combining verbal and visual methods, aiming to capture the everyday, often unseen and ‘boring’ aspects of life with chronic illness. I used episodic interviews, participant-generated photographs, and photo elicitation interviews with 19 young British adults diagnosed with ME/CFS. The study design was deliberately flexible to make participation accessible to both the chronically ill participants and researcher (myself).
The analysis encompassed both narrative and thematic aspects. I provide a narrative analysis of two case studies highlighting issues and experiences present across the data set: that the misfit between young adulthood and illness was significant, and that they experienced multiple forms of sustained liminality due to their transitional life stage, fluctuating symptoms, the temporal fixation of the ‘temporary’ state of illness, and strategies enabling movement between the worlds of health and illness.
My thematic analysis identified three main themes. The first centres on the ab/normality of the ill body, which caused participants to experience the liminalities of being set apart with (bodily) norms suspended, and being betwixt and between health and illness. I argue that responses to ME/CFS can be seen as ways to negotiate its liminality, and suggest two novel forms of delegitimation – the complete dismissal of symptoms and the narrative ‘restitutionalisation’ of chronic illness into a temporary condition – that offer a more nuanced picture of negative responses.
The second theme focuses on the shifting in/visibility of illness, drawing out ways it became visible at certain times, in certain places, to certain people, providing another example of betwixt and between liminality.
The final theme explores the intersection of life stage and illness, highlighting this as significant to participants’ experiences. Illness disrupted their ability to meet idealised life stage norms and achieve milestones; this could lead to becoming stuck in the transition to adulthood, exclusion from the ‘normal’ world, and shifting between worlds of health and illness.
This study contributes to the literature on contested illness, highlighting the significance of life stage in illness experiences. Findings also develop previous work on contested and chronic illness by expanding the concept of liminality, showing that young adults with ME/CFS inhabit a complex web of simultaneous and shifting liminal states stemming from their life stage, illness symptoms and characteristics, and the perceptions of others.
I conclude that a model of multiple liminalities, drawing together varied experiences and elements, can help build a richer picture of life as a young adult with ME/CFS. I also argue that the novel combination of episodic interviews and participant-generated photos offered access to normally unseen parts of life, suggesting that this offers a valuable way for future research to ‘see’ more of life with chronic illness.
Link (Thesis) [Under embargo]
