‘I’m not complaining because I’m alive’: Barriers to the emergence of a discourse of cancer-related fatigue

Abstract

Objective: Cancer-related fatigue (CRF) is a potentially chronic condition that is inadequately discussed, diagnosed and treated. This study examined the factors that contribute to the absence of a discourse of CRF.

Method: A thematic discourse analysis was carried out on the ‘additional comments’ left by 73 fatigued cancer patients and survivors as part of a questionnaire study on CRF.

Results: The findings indicated that conflict between patients’ own conceptualisations of CRF and those of family/friends and/or medical professionals hampers social and medical dialogue of CRF. Fatigue forms a part of patients’ ongoing cancer identity even after cancer treatment has been completed; however, because of the dominance of wider social discourses on recovery from illness and cancer survivorship, others fail to recognise individual narratives of CRF when these deviate from or oppose such established discourses. Furthermore, the development of a discourse of CRF is actively obstructed because the enormity of cancer invalidates and overshadows patients’ postcancer experiences.

Conclusion: ‘Additional comments’ are a rich source of data that can give insight into issues facing patients. Beyond the lack of recognition, support and interventions available for CRF, broader discourses of health, illness and cancer hamper communication regarding this side effect.

Keywords:

• fatigue
• cancer
• illness experience
• survivors
• social support
• qualitative research

Acknowledgements

We would like to acknowledge the financial support received for this research from The Irish Research Council for Science, Engineering and Technology (IRCSET) ‘Embark Initiative’ and the Irish Cancer Society. We would also like to acknowledge the help and support of the following cancer associations: Arc Cancer Support Centre, Arklow Cancer Support group, Bray Cancer Support Group, Cancer Information and Support Centre Midwestern Regional Hospital, Cork ARC Centre, Greystones Cancer Support Centre, HOPE Cancer Support, Inis Aoibhinn Cancer Care West, Kerry Cancer Support Group, Lakelands Area Retreat and Cancer Centre (LARCC), The Lymphoma Association, Mayo Cancer Support Association, Newbridge Myeloma Support Group, Ovacome, The Prostate Cancer Charity, Roches Hair Solutions, Sligo Cancer Support Centre, SPARC Letterkenny, Suaimhneas, and the Tuam Cancer Care Support & Information Centre.