Feeling lucky: hierarchies of suffering and stories of endometrial cancer in a Danish context

Abstract

Illness stories are a prime analytical way of understanding patient perspectives on cancer. Nevertheless, limited studies have focused on stories of endometrial cancer. An ethnographic study including participant observation and interviews among 18 Danish women with endometrial cancer was conducted to examine prevalent stories and the ways the women responded to them. In this article, the analysis focuses on two exemplary cases, which present a line of issues related to the kinds of experiences that suffering includes. Findings illustrate that feelings of luck were central to the experience of being diagnosed, treated and cured, which was related to the way health professionals framed endometrial cancer as favourable through notions of curable/incurable, trivial and gentle/invasive and brutal, and aggressive/non‐aggressive. Drawing upon the concept of a ‘hierarchy of suffering’, we exemplify how women tended to scale own experiences of suffering against others’, leading some to believe they were not in a legitimate position to draw attention to themselves nor seek help and support, despite adverse physical, psychosocial effects. Thus, feelings of being lucky were intertwined with a sense of ambivalence. We conclude by discussing how suffering arises within a moral context, suggesting that the ways we speak of cancer may make some experiences unspeakable. This calls for increased clinical attention to more diverse narratives of cancer.

Coping strategies among patients with malignant lymphoma– a qualitative study from the perspectives of Swedish patients

“…It points towards a hierarchy of suffering, where patients experience that the social network accepts and understands a high level of suffering of the patient in the treatment phase of the disease, but after completed treatment, this acceptance and understanding decrease. Sidenius et al (2019) also show hierarchies of suffering of cancer patients due the way doctors articulate a cancer diagnosis as 'harmless and easily cured' or seriously, as life-treatening. In these ways, suffering has to be understood in its social context.…”

“…They have been through disease and treatment, which enable both understanding and comparability. Studies show how patients tend to scale their own experiences of suffering against others', which is also called response shift (Breetvelt and Van Dam, 1991;Sidenius et al, 2019). When a person finds confidence in how to comprehend and is able to comprehend, manage and find meaning in the situation, often s/ he can cope by using only her/his inner resources, whereas a person who is unable to find this confidence often needs outer help, for example from friends or healthcare professionals (Antonovsky, 1987).…”

Exploring Strategies for Using Social Media to Self-Manage Health Care When Living With and Beyond Breast Cancer: In-Depth Qualitative Study

“…When women felt a difference between themselves and others, they sought out women in other groups they more closely identified with. Some women identified difficulties with the notion of someone like me when they described experiencing the hierarchy of suffering [51], "whereby some kinds of suffering, pain, and misfortune are perceived as more difficult or signify a somewhat unique, superior source of suffering" (p.953). The hierarchy of suffering was described as invalidating personal experiences, and some women moved away from breast cancer discussions on Twitter and Facebook to actively manage their self-care.…”

Exploring Strategies for Using Social Media to Self-Manage Health Care When Living With and Beyond Breast Cancer: In-Depth Qualitative Study (Preprint)

“…Some women identified difficulties with the notion of someone like me when they described experiencing the hierarchy of suffering [51], "whereby some kinds of suffering, pain, and misfortune are perceived as more difficult or signify a somewhat unique, superior source of suffering" (p.953). The hierarchy of suffering was described as invalidating personal experiences, and some women moved away from breast cancer discussions on Twitter and Facebook to actively manage their self-care.…”