How to Categorise Disease? Endometriosis, Inflammation, and ‘Self Out of Place’

Andrea Ford
In: Medicine Anthropology Theory · 2024 · vol. 11(1) , pp. 1–12 · doi:10.17157/mat.11.1.7390 · W4393006505
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⚙ AI-generated summary by claude@2026-06, 2026-06-22 ⓘ

This paper describes fieldwork exploring how endometriosis is reconceptualized as a systemic disorder and how lived experiences challenge ingrained ideas about bodily systems and relations.

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This Field Note examines how endometriosis is being reconceptualized from a primarily gynaecological disorder toward a systemic disorder, including potential endocrine, neural, and immune involvement, drawing on pandemic-era in-depth interviews with patients and clinicians around Edinburgh, Scotland. It reports on the socio-cultural context shaping these shifts and argues that endometriosis challenges established ways of categorizing bodily systems, which are reflected in healthcare design. A central conceptual contribution is to frame immune-related aspects of endometriosis via “self-out-of-place,” moving beyond older self-versus-non-self and self-attacking-self models. The paper is based on qualitative fieldwork and does not provide new diagnostic or treatment outcomes. This paper is centrally about endometriosis — it focuses on how inflammation and immune logics are used to reframe endometriosis as a systemic “self out of place” condition.

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Abstract

Endometriosis is a condition where tissue similar to the uterine lining develops outside the uterus; it ‘bleeds’ during periods, forms lesions, and causes chronic pain. Despite affecting around 10% of menstruating people, its aetiology is poorly understood, and diagnostics and treatments are highly inadequate. Current efforts to reconceptualise the disease generally centre around inflammation. In this Field Note I describe my fieldwork during the pandemic, which was largely based on in-depth interviews with patients and clinicians in and around Edinburgh, Scotland. This research interrogates the socio-cultural context in which endometriosis is changing from a ‘gynaecological disorder’ to a ‘systemic disorder’ implicating the endocrine system (a ‘hormonally driven condition’), the neural system (‘neuropathic pain’) and/or the immune system (an ‘inflammatory condition’). It explores how the lived experience of endometriosis challenges ingrained ways of thinking about the body and bodily ‘systems,’ which are reflected in the design of healthcare systems. Considering endometriosis alongside changing conceptions of immune response invites thinking beyond self-versus-non-self (as in older concepts of immunity), and self-attacking-self (as in auto-immune conditions), to something like ‘self-out-of-place,’ simultaneously calling into question the suitability of our social and material relations.
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Field Notes Vol. 11 No. 1: The Immune System, Immunity and Immune Logics How to Categorise Disease? Endometriosis, Inflammation, and ‘Self Out of Place’ - Submitted - 29 August 2022 - Published - 15-03-2024 Abstract Endometriosis is a condition where tissue similar to the uterine lining develops outside the uterus; it ‘bleeds’ during periods, forms lesions, and causes chronic pain. Despite affecting around 10% of menstruating people, its aetiology is poorly understood, and diagnostics and treatments are highly inadequate. Current efforts to reconceptualise the disease generally centre around inflammation. In this Field Note I describe my fieldwork during the pandemic, which was largely based on in-depth interviews with patients and clinicians in and around Edinburgh, Scotland. This research interrogates the socio-cultural context in which endometriosis is changing from a ‘gynaecological disorder’ to a ‘systemic disorder’ implicating the endocrine system (a ‘hormonally driven condition’), the neural system (‘neuropathic pain’) and/or the immune system (an ‘inflammatory condition’). It explores how the lived experience of endometriosis challenges ingrained ways of thinking about the body and bodily ‘systems,’ which are reflected in the design of healthcare systems. Considering endometriosis alongside changing conceptions of immune response invites thinking beyond self-versus-non-self (as in older concepts of immunity), and self-attacking-self (as in auto-immune conditions), to something like ‘self-out-of-place,’ simultaneously calling into question the suitability of our social and material relations. Downloads Download data is not yet available.

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endometriosis

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