Life according to ME: Caught in the ebb-tide

[Dolphin]

Life according to ME: Caught in the ebb-tide

1. Olaug S Lian⇑
   1. University of Tromsø – The Arctic University of Norway, Norway
2. Frances Rapport
   1. University of Tromsø – The Arctic University of Norway, Norway; Macquarie University, Australia

1. Olaug S Lian, Department of Community Medicine, Faculty of Health Sciences, University of Tromsø – The Arctic University of Norway, 9037 Tromsø, Norway. Email: olaug.lian@uit.no

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 place-sensitive 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’.

• chronic illness and disability
• experiencing illness and narratives
• illness behaviour

 

[Dolphin]

I have read this now.
I found it sympathetic: I think there is nothing in it that I would disagree with.

I didn't find there was too much jargon in it or that it was too difficult to read; on occasion I have found sociological pieces difficult to read. It may have that the first language of the authors is presumably not English.

The results section in particular is quite easy to read.

I am not sure there was anything earth-shatteringly new to me but then I have been reading people describe their lives with ME for 22 years. There may be value in having it published in the journal so that it can be quoted.

 

[Dolphin]

Being ‘at home’. Most participants describe being inside the home – meaning the place where they live – as the least burdensome place for them to be:

I am largely housebound because it is at home that I can get most rest. (W5)

At home. Everything is arranged to make things easier for me – physically, mentally and interpersonally. (M2)

I experience my illness as least taxing when I am at home with myself … In the winter-season, when it becomes difficult to move outside, I almost hibernate inside the house. (W1)

 

[Dolphin]

Ambiguity and risk. Being at home is described by participants as the least taxing place for them to be, but this notion is not without an inherent ambiguity:

I spend most of my time at home … being quietly at home causes the least physical and sensory strain, while mentally it can make me restless and depressed if I remain alone for a long time. (W4)

The sofa corner represents my everyday life, where I feel normal. At the same time it represents a life which, when seen through the eyes of others, seems anything but normal. (W3)

 

[Dolphin]

Although being home is the least taxing place for them to be, they describe this place ambiguously (as they do with most of the places they describe). Being at home to protect themselves from physical and sensory strain is something they have to do, but being alone at home for long periods of time can also be straining because it is, in a sense, a solitary confinement. They portray home as a sanctuary, but also as a ‘cave’.

 

[Dolphin]

The balancing act

A vital part of their attempts to adapt to their challenging situation is to constantly search for the right balance between activity and rest, excitement and peace. Rest is not a pleasure, but a necessity. Finding the right balance and timing is difficult, and failing to do so means that ‘it’s time to pay’. Uncertainty and risk are strong underlying themes: whatever they do, they risk losing their hard-earned energy, and thereby their freedom (if their timing is not right, and they go ‘against the flow’). While reflecting on these risks, they reminisce on their past and hope for a better future.

 

[Dolphin]

Similarly, Jarrett (2000) has described the length that people experiencing chronic illness are willing to go to in order to find the balance between living a life and living an illness (Jarrett, 2000).

 

[Sasha]

I'm just thrilled to discover that there's the Arctic University of Norway!