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“我不是那种爱抱怨一切的女人”:慢性疼痛女性关于自我与羞耻的患病经历

'I am not the kind of woman who complains of everything': illness stories on self and shame in women with chronic pain.

作者信息

Werner Anne, Isaksen Lise Widding, Malterud Kirsti

机构信息

Centre for Women's Studies and Gender Research, University of Oslo, P.O. Box 1040 Blindern, N-0315 Oslo, Norway.

出版信息

Soc Sci Med. 2004 Sep;59(5):1035-45. doi: 10.1016/j.socscimed.2003.12.001.

Abstract

In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was conducted with in-depth interviews including a purposeful sampling of 10 women of varying ages and backgrounds with chronic muscular pain. The women described themselves in various ways as 'strong', and expressed their disgust regarding talk of illness of other women with similar pain. The material was interpreted within a feminist frame of reference, inspired by narrative theory and discourse analysis. We read the women's descriptions of their own (positive) strength and the (negative) illness talk of others as a moral plot and argumentation, appealing to a public audience of health personnel, the general public, and the interviewer: As a plot, their stories attempt to cope with psychological and alternative explanations of the causes of their pain. As performance, their stories attempt to cope with the scepticism and distrust they report having been met with. Finally, as arguments, their stories attempt to convince us about the credibility of their pain as real and somatic rather than imagined or psychological. In several ways, the women negotiated a picture of themselves that fits with normative, biomedical expectations of what illness is and how it should be performed or lived out in 'storied form' according to a gendered work of credibility as woman and as ill. Thus, their descriptions appear not merely in terms of individual behaviour, but also as organized by medical discourses of gender and diseases. Behind their stories, we hear whispered accounts relating to the medical narrative about hysteria; rejections of the stereotype medical discourse of the crazy, lazy, illness-fixed or weak woman.

摘要

在本研究中,我们探讨了慢性疼痛女性疾病叙述中的自我与羞耻问题。我们关注她们故事中的这些问题是如何根据性别和疾病的文化话语形成的。我们进行了一项定性研究,采用深度访谈,有目的地抽取了10名年龄和背景各异、患有慢性肌肉疼痛的女性。这些女性以各种方式将自己描述为“坚强”,并表达了对谈论患有类似疼痛的其他女性疾病的厌恶。材料在女性主义参照框架内进行解读,受到叙事理论和话语分析的启发。我们将女性对自身(积极的)力量的描述以及对他人(消极的)疾病谈论视为一种道德情节和论证,向卫生人员、公众和采访者这一公共受众发出呼吁:作为情节,她们的故事试图应对对自身疼痛原因的心理及其他解释。作为表现,她们的故事试图应对她们所报告遭遇的怀疑和不信任。最后,作为论证,她们的故事试图让我们相信她们疼痛的真实性和躯体性,而非想象或心理性的。在几个方面,这些女性构建了一幅符合规范的、生物医学对疾病的期望以及疾病应如何根据作为女性和患病者的性别化可信度工作以“故事形式表演或呈现”的自我形象。因此,她们的描述不仅体现在个体行为方面,还受到性别和疾病医学话语的组织。在她们的故事背后,我们听到了与关于癔症的医学叙事相关的低语叙述;对疯狂、懒惰、疾病缠身或软弱女性的刻板医学话语的拒绝。

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