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The 'I' in Fibromyalgia: The Construction of Academic Identity Under the Influence of Fibromyalgia

Brown, Nicole (2020) The 'I' in Fibromyalgia: The Construction of Academic Identity Under the Influence of Fibromyalgia. Doctor of Philosophy (PhD) thesis, University of Kent,. (KAR id:80066)


Fibromyalgia is a condition that is characterised by chronic, wide-spread pain, fatigue, sleep disturbances, cognitive dysfunctions, often described as "brain fog" or "fibro fog", increased sensitivity and psychological disorders. As there are currently no unique identifiers or biomarkers to diagnose fibromyalgia and symptoms are very changeable, the condition is contested amongst the general public but also amongst medical professionals. Despite increasing interest in socio-cultural factors interacting with the sociomatic qualities of fibromyalgia there is as of yet no exploration of fibromyalgia within the context of the contemporary, neoliberal higher education sector. This research investigates the interrelationship of fibromyalgia symptoms, the precarious working conditions in academia and academic identity. At the same time, the study examines the impact of metaphors, creative and arts-based approaches on understanding individuals' experiences.The research was designed as an interpretivist study that emphasised the bodily, sensory and embodied. To this end, identity boxes were introduced as a new field instrument to gather data in two out of the study's four phases. Across the four phases of the study 16 non-academic participants and 28 academic participants were recruited. Data collection was seen as a process of interactions between researcher and participants. Consequently, during data collection participants were encouraged to deploy their preferred methods of reflection and communication in addition to more traditional interviews. As a result, data sets are varied and very personal, which allowed for flexibility also where illness fluctuations were concerned. The difficulty with researching fibromyalgia was the changeability of the illness and trying to capture all variations holistically. The focus on developing appropriate research methods was therefore key to unlocking the doctoral research. The use of metaphors and materials alongside the many forms of expressions provided insight into the fibromyalgia experience in unprecedented ways.Findings show that for the non-academic participants, fibromyalgia represents the loss of a previous self, of employment and in some instances of relationships, whilst also representing gains, as individuals felt more tolerant, empathetic, patient and compassionate. Fibromyalgia in this sense is equated with personal growth. For the academic participants, however, there was no silver lining to be found in and with fibromyalgia. Consequently, academics' narratives were narratives of resistance against the condition and the associated stigmatisation and marginalisation. Theseivnarratives were also evident in how academic individuals engaged in active bodywork in order to cope with fibromyalgia symptoms but also to consciously control their public academic identity. Against the backdrop of the precarious working conditions and highly pressurised environment in academia fibromyalgia emerged in its somatic quality as a physical manifestation of tensions academics experience. At the same time, academics exhibited perfectionist tendencies, which made them more prone to developing fibromyalgia symptoms. And yet, for academics the academic lifestyle and work in academia were so internalised and ingrained in their personalities, that they did not see any alternatives to being academics.Drawing on the data presented, this thesis argues that academics in the neoliberal university feel trapped between their personal values and norms, their own character traits and the need to comply with external forces such as rules and regulations, practices and policies forever demanding higher levels of efficiency, excellence and productivity. The problem with contemporary academia in this context is that it appears to offer flexibility and autonomy, but in reality, works with and through pressurising individuals into compliance in return for the prospect of potential job security, for example. This setting then does not allow academics to appear weak or ill, so that individuals feel they cannot be open and honest about their personal health. On a personal level academics struggle with the fibromyalgia diagnosis and its meaning as a stigmatising condition and therefore academics actively employ mechanisms and strategies in order to resist marginalisation processes and discourses. The management of fibromyalgia and its bodily symptoms is therefore a private and strongly controlled affair that invariably but involuntarily spills over into the academic's public life.

Item Type: Thesis (Doctor of Philosophy (PhD))
Thesis advisor: Wilkinson, Iain
Thesis advisor: Leigh, Jennifer
Uncontrolled keywords: fibromyalgia, creative research, creative methods, arts-based research, arts-based methods, illness, health and illness, wellbeing, higher education, disability, academic, identity
Subjects: H Social Sciences
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research
SWORD Depositor: System Moodle
Depositing User: System Moodle
Date Deposited: 14 Feb 2020 11:10 UTC
Last Modified: 14 Feb 2023 00:00 UTC
Resource URI: (The current URI for this page, for reference purposes)

University of Kent Author Information

Brown, Nicole.

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