‘Reimagining a self’: an evocative autoethnography of living alongside Myalgic Encephalomyelitis(ME), 2020, Farrell Delaney

[Dolphin]

‘Reimagining a self’: an evocative autoethnography of living alongside Myalgic Encephalomyelitis(ME)
Orlagh Farrell Delaney RGN, MA

A thesis submitted to Maynooth University in fulfilment of the requirements for the degree of Doctor of Philosophy in the Faculty of Social Sciences Department of Applied Social Studies

http://mural.maynoothuniversity.ie/..._Delaney_PhD_FINAL_submission_APRIL_2020_.pdf

ABSTRACT

This doctoral thesis research aims to explore and explain the day to day realities of living long term with Myalgic Encephalomyelitis (ME). ME is an acquired complex disorder characterised by a variety of symptoms affecting multiple systems of the body. Marked fatigue and weakness, sickness, cognitive dysfunction and symptom flare-up can follow any physical or cognitive exertion. ME is a chronic and disabling disorder and severe or moderately severe cases can leave patients bed or house bound. It is estimated that there are 12,000 people with ME in Ireland and an estimated 17 to 24 million sufferers worldwide. Despite this there is a dearth of research on the experience of living with ME.

I have lived with moderately severe ME for the last 16 years. Utilising autoethnography as a methodology and drawing on multidisciplinary social science theory, I aim to tell the story of my own lived experiences of the illness, and how I sought to reimagine a ‘self’ or a life living alongside the illness, that could still be considered a good life. Autoethnography is an autobiographical genre of writing and research, that displays multiple layers of consciousness connecting the personal to the cultural. Autoethnography uses the researcher’s experience as primary data and in this thesis I utilise field notes kept over the years, journal entries, photography and my own poetry.

The data is presented as a series of four narratives. These narratives are then analysed using three interrelated conceptual and theoretical frameworks. The first is an original conceptual framework, ‘The Struggle Cycle’, designed for this study. It draws on and integrates two others: Witkin’s (2014) Four Conditions Facilitative of Transformative Change, and the Buddhist philosophy of the Four Noble Truths. Too often people with illness are the passive subjects of investigation by researchers who do not have experience of illness. An autoethnographic approach helps to redress this imbalance and generate unique insights.

I intend that my study will help those who live with ME to reflect on and understand their own experiences, and will help to inform medical professional and other support services dealing with ME, as well as the general public and those who share their lives with people affected with ME, who can often struggle to understand. The insights generated could also apply to many other chronic illnesses. ii A

 

[Tia]

Looks interesting. Not sure I've got the energy to read it all but I like the sound of it. Will bookmark it.

 

[ME/CFS Skeptic]

Thanks for posting.

Unfortunate that it's soo long, won't be able to read it I'm afraid.

 

[Skycloud]

It looks interesting, being based around the documentation of one person’s ME experience, but I don’t have the cognitive energy to read it.

From page 3

Too often people with illness are the passive subjects of investigations by researchers who do not have experience of illness. An autoethnographic approach can help to redress this imbalance and generate unique insights (Ettore 2010). My primary data in this thesis is drawn from some field notes but principally from journal entries kept over the course of my illness. The early years of illness, from 2002 to 2008, are presented as vignettes written from field notes and from journal entries. A narrative gap between 2009 and 2013 is identified as a result of relapsed illness following a lengthy divorce. Vignettes describing memories of events relevant to this timeframe are presented. Journal entries cover the period of 2014 to late 2018. The journal entries are written in narrative form, in the first person voice and are by their nature evocative. I also include my own photographs as data in this thesis. I received a gift of a small, light digital camera in 2009 which lived constantly in my pocket and I began capturing moments in time. Often, over the many years of my illness, my only capacity to record a moment or a fleeting story, was to capture it in a photograph. In 2015 an unwanted iphone replaced the camera in my pocket and captured moments in time from then to 2018. Finally, I include poetry in this thesis and the majority of it is my own poetry written over the course of my illness.

Chapter 2 briefly looks at the history, definitions and severity levels, , prevalence. The author makes a distinction between ME and CFS, and also looks at the psychiatric psychogenic view. Also recent research, and the physiological view of possible causes, and hypothetical theories, and management. Also the contentious nature of the illness and the consequences of all this on pwME.

And that’s as far as I will look.

 

[Peter T]

Too much for me to read in one go, but I did jump forward to the Conclusion, which is more of a summary:

CHAPTER 13 CONCLUSION

Using an autoethnographical method, this thesis describes the lived experiences of Myalgic Encephalomyelitis (ME) a chronic, invisible and contested illness. The research asks if it is possible to reimagine a ‘self’ that could find a way to live a good life living alongside such an illness? This autoethnography shows that with assisted transformative processes it is possible to do so.

In Chapter 2, ME is described as an acquired, complex disorder characterised by a variety of symptoms, principally extreme fatigue or malaise following exertion lasting six months or longer (Caruthers et al. 2011). ME is revealed as a chronic, invisible, contested illness (Blease et al, 2016) with a global prevalence of 17-24 million sufferers (www.meaction.net). To date there are no laboratory or diagnostic tests to identify ME, and no cures or treatments (Green et al 2015). However of greatest relevance to this thesis is that ME is considered a contested illness. A contested illness is a disorder that is considered medically suspect because it is not associated with any known physical abnormality (Conrad & Barker 2010). The legacy of this contested nature is that the ME patient’s credibility is undermined and as a result diagnosis and adequate treatment and support are delayed. It is the contested and unsupported nature of the illness that is most burdensome to the ME population. The literature review reveals that the majority of research into ME is biomedical in origin and that there is a dearth of research into the actual long term lived reality of this illness.

Chapter 3 reveals the methodological design of this thesis to be an autoethnography. Utilising an evocative autoethnogaphical method proved to be the most beneficial method for my research questions which sought to examine the physical and emotional challenges faced daily while living alone with a chronic and unsupported illness, yet trying to stay well, maintain dignity and find a sense of purpose. As my personal journal entries were the main data source in the writing of this autoethnography, I consciously used my identity and my experience as my epistemology (Hermann-Wilmarth & Bills 2010). As added creative strands, I included my own photography at the end of the narrative section to serve as small capturings of my daily life. The evolution of the narratives when put under analysis revealed a ‘poetic dimensionality’ (Bochner, 2005) so it proved effective to include my own poems as they related to the narratives. The narratives, photographs and poetry contributed in this autoethnography to the exploration of the ‘two selves’ that Bochner advises should be included in an autoethnography: the ‘self’ the writer was then and the ‘self’ the writer has become as a result of the transformative ‘crisis’ (2000).

An original conceptual framework, the ‘Struggle Cycle’ traced the circular movement the transformative process took, moving from struggle through surrender through seeing to sanctuary, where the old attachments to struggle ended. Witkin’s (2014) Four Conditions Facilitative of Transformative Change, and the Buddhist philosophy of The Four Noble Truths were also employed as conceptual frameworks. The three frameworks were successful companions in identifying and mapping the trajectory of the transformative process and explicating the emergent concepts and exemplars that were instrumental in that transformation, or reimagining of a self.

The data in this autoethnography is presented as four highly evocative narratives that span the length of the illness (16 years) and document the daily experiences and challenges of living alone with a chronic, invisible contested illness such as ME, that tips repeatedly from relapse to respite. The narratives simultaneously reveal a solitary life in a remote rural environment living alongside rescued animals and guided by a Buddhist philosophy.

Analysing these narratives reflexively, resulted in the identification of the recurrent themes of voluntary simplicity and authenticity, enoughness, compassion, harmless living (ahimsa) reverence for nature, reciprocal gratitude and Zen mind. The further exploration of these concepts in parallel with the utilisation of the aforementioned theoretical frameworks and the autoethnographical methodology used, mapped out the trajectory of the transformative process and answered in the affirmative the research questions. It was possible to reimagine a self living alone alongside a chronic invisible contested illness, and such a life could be considered a good life.

This autoethnographical research thesis was reliant on the study of my ‘self’ and my own lived experience of ME, with the aim of bringing previously silenced perspectives to the forefront. It was necessary therefore that my autoethnography be a critically reflexive self-study and narrative inquiry, systematically constructed and reviewed to allow for the findings of a ‘single case’ to be transferable to similar contexts (Bochner, 2000) and to have utility and social relevance. It also provided an opportunity to ‘write to right’ or to write to highlight the misunderstandings that have been attached to ME as a contested illness, which I view as a social injustice.

The original contribution to knowledge of this thesis was the writing of an evocative autoethnographic account of living with moderate ME, which spanned the length of the illness (16 years), and despite the contested and pessimistic nature of the illness, sought to reimagine and transform a ‘self’ that without the need to transcend the illness, endeavoured to find a way to live a good life. To date there have been no such autoethnographic accounts written about ME.

Consequently in increasing awareness of the realities of ME at an academic level there is the potential for discussion and change. This work can inform medical professional and other support services dealing with ME sufferers. This work can inform the general public and those who share their lives with people who live with ME. It is hoped that this work will help others who live with ME to reflect on and understand their own experiences. In ‘writing to right’ in this thesis and to correct the injurious effects of the contested nature of ME, I hope to reduce the burden of the ‘credibility work’ that exhausts an already exhausted minority.

An original contribution to knowledge was also made at a methodological level by submitting an evocative autoethnography that included original poetry and photography at a doctoral dissertational level.

Completing this evocative autoethnography afforded me the added benefit of turning an extremely difficult set of experiences and circumstances to creative and constructive purposes for my own benefit and it is hoped for the benefit of others. The vulnerability of revealing oneself in this thesis to such a degree and the expectation of criticism of one’s deepest being (Ellis 1999) has been a reality in the writing of this research. An element of courage and commitment to the cause was required. It is in the spirit of resourcefulness, helpfulness and usefulness that this autoethnography has been written and in the desire, as Audre Lorde suggests, not to waste the pain.

 

[chrisb]

I suspect that most people with moderate ME would struggle to read that, let alone research or write it.

 

[Trish]

I suspect that most people with moderate ME would struggle to read that, let alone research or write it.

I think that depends on the individual's particular symptom mix. I can see someone with severe brain fog would struggle, but I can imagine someone with moderate ME managing to do it little bits at a time spread over several years. We'll done to the author for the achievement.

A PhD is expected to take at least 3 years for someone healthy working full time on it, and to be built on a foundation of already studying the subject area at undergrad level.

 

[NelliePledge]

Well done to the author. I get that it is an academic piece and the language is pitched at their academic tutors for the purpose of getting a PhD this isn’t a criticism of the individual but my reaction is always why can’t these groups use straightforward language.

 

[Haveyoutriedyoga]

Thanks for sharing this, looking forward to reading it

 

[hibiscuswahine]

Thanks for sharing, very evocative. Quite dense reading as expected for a dissertation but like the underpinnings, will take some time to read and digest. Don’t often find things that reflect my journey and life philosophy.