Research Unit of General Practice, Department of Public Health, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark.
Department of Gynaecology and Obstetrics, University Hospital of Zealand, Roskilde, Denmark.
Sociol Health Illn. 2019 Jun;41(5):950-964. doi: 10.1111/1467-9566.12875. Epub 2019 Feb 10.
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.
疾病故事是理解患者癌症观点的主要分析方法。然而，很少有研究关注子宫内膜癌的故事。本研究采用人种学方法，通过参与观察和对 18 名丹麦子宫内膜癌女性的访谈，对普遍存在的故事以及女性对这些故事的反应方式进行了研究。本文的分析重点关注两个典型案例，这些案例提出了与患病经历相关的一系列问题。研究结果表明，被诊断、治疗和治愈的经历中，幸运的感觉是核心，这与医疗保健专业人员通过可治愈/不可治愈、轻微和温和/侵袭性和残酷、激进/非激进的概念来描述子宫内膜癌的方式有关。借鉴“苦难等级”的概念，我们举例说明了女性如何倾向于将自己的苦难经历与他人的苦难经历进行比较，导致一些女性认为自己没有正当的理由引起关注，也没有寻求帮助和支持，尽管她们身体和心理都受到了负面影响。因此，幸运的感觉与矛盾感交织在一起。最后，我们讨论了苦难是如何在道德背景下产生的，这表明我们谈论癌症的方式可能会使一些经历难以言说。这需要临床医生更加关注癌症的多样化叙事。
