Perspectives of Time and Occupation: Experiences of People with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling condition that disrupts the normal rhythms and activity patterns of daily life. Although temporal dimensions such as time use, tempo and temporality have an important relationship to occupation there has been limited study of these factors within CFS/ME. This qualitative study explored how people with CFS/ ME perceived the relationship between time and occupation through the experience of their illness. A social constructivist approach to grounded theory involving in-depth interviews with 14 participants, recruited through a specialist service in the UK, revealed emerging concepts of accelerating time before illness, with a focus on imminent tasks. During illness actions slowed, but contrasted with the experience for some participants of time disappearing. As participants adjusted to the condition there was a greater focus on being present and consciously slow, as a sense of control within time emerged. These findings suggest that further consideration is given to the broader aspects of time and rhythm within occupational science, evolving from the current clock time perspective to incorporate event time and resynchronisation of occupational balance.

Experiences of daily activity in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their implications for rehabilitation programmes

“…Participants also had difficult matching their capacity for activity with their expectations, having developed a norm of high activity prior to illness. Therefore, using activity diaries may be helpful in enabling people to align time to activity [55]. However, if underlying beliefs about activity are not addressed then these may be experienced as frustrating, as Ann felt this illustrated her lack of activity in comparison to past levels.…”

Synchronisation: Co-ordinating Time and Occupation

“…Furthermore, adjusting the tempo of action and matching time allocation and task performance can be used to diminish time pressure and support the sustainability of occupations (Pemberton & Cox, 2013). Synchronisation also recognises the importance of temporality and narrative, giving time to grieve for a past active identity and transition to new values and future vision, more congruent with continuing wellbeing.…”

“…Wilcock (1999) previously proposed that there is a present day imbalance in doing, with some people doing too much, and that harmony is needed between doing well, well-being and becoming healthy. We have shown that disruptions of time use, tempo and temporality are experienced by people with chronic fatigue (Pemberton & Cox, 2013). Others have identified that there is increasing time pressure as every moment of the day fills with constant activity (Larson & Zemke, 2003;Roxburgh, 2004) and increasing speed (Darier, 1998;Tranter, 2013).…”

Water: A Useful Metaphor for Occupation

“…In a study of individuals with chronic fatigue syndrome, participants used the metaphor of 'burning the candle at all four ends' to describe their experience of the illness, the role of time, and their need to participate in occupations with a new, conscious slowness (Pemberton & Cox, 2013). Wright-St Clair (2003) found that participants used metaphor as a tool to create and express meaning through rich imagery, which helped them to transform both their illness and their illness experience following a diagnosis of multiple sclerosis.…”