Parallel worlds and personified pain: A mixed‐methods analysis of pain metaphor use by women with endometriosis

Abstract

Objectives. Endometriosis is a long-term condition in which endometrial-like tissue grows outside of the womb, causing intense chronic pain. Previous work has demonstrated the physical and emotional impact on women who live with endometriosis, and metaphors can play an influential role in communicating the experience of pain, but there exists little understanding of the role and impact of such language for women with endometriosis. Design. A qualitative, semi-structured interview design. Methods. Conceptual Metaphor Theory (CMT) and Interpretative Phenomenological Analysis (IPA) were utilized in a mixed-methods study to examine the prevalence, types, and meaning of metaphors and metaphor use as a health communication strategy. Twenty-one women aged between 23 and 53 years (mean age 36.1 years) with endometriosis took part in audio-recorded interviews. Results. The women reported experiencing symptoms for an average of 11 years before receiving a formal diagnosis of endometriosis, and the mean age of diagnosis was 27.6 years. Seven distinct conceptual metaphors were identified in 221 metaphorical expressions used across all participants, with most common ones referring to pain as physical properties of elements such as temperature and pressure, physical damage, and an external attacker. IPA revealed three themes pertaining to the feeling of vulnerability and helplessness, pain being incomprehensible, and a drive to manage and conceal pain simultaneously. Conclusions. This study demonstrates the power of language in facilitating understanding and empathy in the listener, alongside the challenge of communicating endometriosis pain to others. Imagery-based techniques may assist in adaptation to, interpretation, and acceptance of pain to reduce pain-related distress. Statement of contribution What is already known on this subject? Endometriosis is a debilitating gynaecological condition causing incapacitating pain that is reportedly difficult to describe. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Addressing Challenges in Endometriosis Pain Communication Between Patients and Doctors: The Role of Language

“…Many women used similes, metaphors comparing an abstract concept to a concrete one but the conceptual connection is purposefully marked (e.g., “like,” “as if”) for rhetorical effect ( 19 ), to describe their pain. In using such metaphorical language, mostly including violence [e.g., ( 10 )], women attempt to indicate not only quality and severity, but also the physical and psychological impact of their pain ( 20 ).…”

“…Effective communication of pain is collaborative work between patients and doctors. The use of metaphors can improve practitioner-patient communication [e.g., in relation to other serious health conditions, see ( 24 )] and help patients interpret, accept and adapt to pain as a coping mechanism ( 20 ). Therefore, further investigation is needed into the effective use of metaphor to enhance patient-practitioner communication of endometriosis related pain in general practice care as well as into improving GPs' understandings of common metaphors employed by women living with the condition.…”

Mediating Pain: Navigating Endometriosis on Social Media

“…Patient narratives, descriptors, or metaphors can also be useful for showing how people with endometriosis experience, feel, and understand their pain. For example, in a study by Stella Bullo and Jasmine Heath Hearn, 21 women described their endometriosis with metaphors that represented it as an external agent controlling their experiences, showing that they generally felt a helplessness and lack of control surrounding their disease ( 66 ). While patient representations are never perfect examples of endometriosis, the intense, affective, or fragmented metaphors that people use to describe their endometriosis can often reveal the emotional and physical toll of the disease better than the description itself.…”

Assessing Pain Research: A Narrative Review of Emerging Pain Methods, Their Technosocial Implications, and Opportunities for Multidisciplinary Approaches

“…Additionally, a number of content-related features from spoken and written language have also shown potential in assessing pain intensity, emotional pain severity, pain-related emotions, and changes in perceived qualia; these features have included personal pronoun usage, sentiment, verbosity, and psycholinguistic structure of words ( 99 – 106 ). Other aspects of the pain experience—such as quality of life metrics, pain interference, and even diagnostic category—have been evaluated using higher-level linguistic features, such as metaphor usage ( 107 – 109 ). Quantitative language metrics like these might be able to serve as an alternative to numeric ratings or as “proxies” of pain intensity or quality.…”