Life according to ME: Caught in the ebb-tide

Abstract

In this article, we explore the role of 'place' in shaping people's illness experiences through a data-led inductive case-study based on experiential data from people living with myalgic encephalomyelitis (ME) in Norway. Our main aim is to understand how they experience, interpret and attach meaning to various places in which they reside, and how they construct the course of a life influenced by chronic illness. The study is based on stories containing photographs and written texts, received from 10 women and men. In their stories, they describe those places where they experience their illness in the least and most taxing ways. Through a narrative and photographic analysis of their stories, we explore how they perceive the relationship between place and illness as experienced, managed and endured. Our analysis is based on a placesensitive sociology, in which we approach place both as physicality and a symbolic construction. The participants describe how a wide range of places are intimately linked to their illness experiences, and they interpret these links by referring to both physical and symbolic factors. They describe their lives in terms of a need for equilibrium between activity and rest. Risk is a strong underlying theme: whatever they do, they risk losing something. Most of all, the participants describe how they are looking for places to escape to and from. Places to escape to are those places where privacy and peace can be found, which primarily revolve around being at home.Places to escape from are those places that make their energy 'slowly ebb away'.2

“I Do Not Really Belong Out There Anymore”

“…The study presented in this article is part of a larger, 6-year research project aiming to explore the experiences of people with ME through a broad range of data capturing methods, including patient experiences (Lian & Hansen, 2015), illness experiences (Lian & Rapport, 2016), online debates (Lian & Nettleton, 2014), and changing medical constructions (Lian & Bondevik, 2015). A reference group consisting of representatives of patient organizations and doctors is connected to the project to advise the research team.…”

Care in place: A case study of assembling a carescape

“…, Milligan , , Twigg ). Others include the spatiality of nursing (Andrews , Liaschenko , Malone ), therapeutic landscapes (Gesler , Williams ), rural care (Cutchin , Milligan ), chronic illness (Lian and Rapport ), women's health (Mahon‐Daly and Andrews , Moss and Dyck ), wellbeing (Wiles et al . ), voluntarism (Milligan , Milligan and Conradson ), patient safety (Mesman 2011), and gerontology (Andrews et al .…”

Women’s Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The “Lives at Risk Study”

“…Face-to-face Bio-photographic elicitation interviews were undertaken with all participants (Rapport, Doel, & Elwyn, 2007). The method has been used extensively by this team and reported previously (Lian & Rapport, 2016; Rapport et al, 2009b; Rapport, Doel, & Wainwright, 2008), derived in part from the photo-elicitation work of Radley and Taylor (2003), which was conducted in a hospital setting (Radley & Taylor, 2003). Bio-photographic elicitation uses photographs and other visual data as stimuli for interviews (Harper, 2002).…”