Living with complex, poorly-understood medical conditions: Experiences of stigma and shame.
This PhD project is generously funded by Wellcome.
An audio recording of this page can be found below.
My current project focuses on complex, poorly-understood medical conditions: those conditions that can cause severe and disabling symptoms but for which there is currently no accepted biomedical explanation. I want to explore what it is like to live with these symptoms, and I especially want to understand how women with these conditions express experiences of stigma and shame.
The central aim of this research is to understand both the social and somatic (bodily) suffering that women with complex, poorly-understood medical conditions endure. In short, I want to listen attentively and compassionately to the stories that women with these conditions tell and to hear not only what these symptoms feel like, but also how it feels to live with these symptoms in society.
I am studying accounts women themselves have written and published about their own experiences, and I will also interview women who live with these conditions so that I can get a more complete picture of the problems they face. Combining literature (published autobiographies) and interview testimony in this way will, I believe, tell me a lot about how women with these conditions experience stigma and shame, how these experiences feel, and what the causes of this stigma and shame might be.
By analysing accounts of somatic (bodily) and social suffering expressed by women with complex, poorly-understood medical conditions, I hope to be able to propose ways that shame and stigma might be reduced for these patient communities, improving quality of life.
This is a project inspired by my own lived experience, and co-produced in dialogue with my Project Advisory Group (including Elisheva de Lange, Jemma Dane Josiah, Anna Biggs, and Alison Newland), whose insights I value enormously and whose expertise is crucial to the success of my research.
Frequently asked questions
Why are you not looking at men’s accounts of poorly-understood medical conditions?
I would love to be able to hear more about men’s experiences of these conditions – but, unfortunately, this just wasn’t possible within the confines of a three-year project. I hope, however, that this might lead to further research in this area, including into men’s experiences.
Your project looks at shame and stigma. Do you think that poorly-understood medical conditions are caused by emotional distress?
No, definitely not. I am exploring experiences of shame and stigma that occur as a result of living with a complex medical condition. I believe that these experiences of shame and stigma are caused by living with an illness that medicine and society do not fully understand.
What is your academic background? Is this a psychological study?
No, this is not a psychological study. My PhD is in the Medical Humanities: a growing field of academic research underpinned by the belief that the humanities (including literary studies, linguistics and philosophy) can offer unique, valuable insights into experiences of health and illness.
My academic background is in the arts and humanities: I have an undergraduate degree in English and French and a Master’s degree in modern and contemporary English literature. I’ve also recently undertaken training in qualitative health research, during which I learned how to conduct interviews and how to analyse interview transcripts.
Is this study funded instead of biomedical research?
No, my project is funded through a Doctoral Studentship in the Medical Humanities, from the Wellcome Trust. This is dedicated, ring-fenced funding for medical humanities projects – it would never have been used to fund biomedical research.
Where will you publish the results of your research?
I hope to publish the results of my research as academic journal articles, as blog posts and, eventually, as a book. I also expect to present my research at conferences. (All data gathered from interviews will be fully anonymised before my research is published or presented in any format.)
If appropriate, the results of this project may inspire future research projects, and they may be used to develop interventions related to the health conditions studied.
If you are interested in taking part in an interview for this project, please fill out this survey.
I will also post regular updates and reflections on my research on my research blog.