CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Recognizing Endo: How Gender and Recognition Shape Experiences of Endometriosis
Stockholm University, Faculty of Humanities, Department of Ethnology, History of Religions and Gender Studies.ORCID iD: 0000-0001-7059-6565
2026 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Endometriosis is a common and painful condition affecting millions worldwide. In recent years, it has also emerged as a site of gender justice struggles. This thesis offers an empirically informed phenomenology of this frequently overlooked condition, interpreting patients’ experiences and demands for change as a contemporary struggle for recognition.

Based on in-depth interviews with 15 individuals in Sweden diagnosed with endometriosis, the study aims to deepen the understanding of how gendered dynamics and processes of recognition shape lived experiences of the condition. The analysis draws on the Hegelian concept of recognition, primarily as developed in Axel Honneth’s recognition theory, to examine how recognition shapes relations to self and others and motivates struggles for change. Approaching endometriosis as the phenomenon of “endo,” the thesis develops empirically informed concepts that capture its characteristic manifestations in the interviewees’ lifeworlds. These concepts are elaborated across three articles.

The first article (I) introduces the notion of endo time, analyzing how the recognition of endo appears as a specific orchestration of time, in experiences of waiting time, cyclical or chronic time, and sedimented time. The second article (II) develops the concept of endo episteme, examining how recognition and everyday epistemic practices shape the journey to diagnosis and treatment, including the processes of becoming a knower, becoming a patient, and becoming knowledge. The third article (III) articulates endo politics, exploring how quests for diagnosis and treatment evolve into a struggle for recognition that involves developing a fighting spirit, becoming a “we,” and struggling to be included.

Through these themes, the dissertation makes both empirical and theoretical contributions to gender studies, endometriosis research, and contemporary philosophical debates on gender and recognition.

Place, publisher, year, edition, pages
Stockholm: Department of Ethnology, History of Religions and Gender Studies, Stockholm University , 2026. , p. 142
Keywords [en]
chronic illness, endometriosis, gender, phenomenology, recognition
National Category
Gender Studies
Research subject
Gender Studies
Identifiers
URN: urn:nbn:se:su:diva-253040ISBN: 978-91-8107-526-7 (print)ISBN: 978-91-8107-527-4 (electronic)OAI: oai:DiVA.org:su-253040DiVA, id: diva2:2043001
Public defence
2026-04-17, Hörsal 2, Hus 2, Albano, Albanovägen 18, Stockholm, 13:00 (English)
Opponent
Supervisors
Available from: 2026-03-25 Created: 2026-03-03 Last updated: 2026-03-18Bibliographically approved
List of papers
1. Endo Time: Endometriosis and the Flow of Recognition
Open this publication in new window or tab >>Endo Time: Endometriosis and the Flow of Recognition
2024 (English)In: Hypatia, ISSN 0887-5367, E-ISSN 1527-2001, Vol. 39, no 2, p. 423-443Article in journal (Refereed) Published
Abstract [en]

The relation between time and gender has been extensively discussed in feminist theory, from Simone de Beauvoir to recent studies of queer temporality and crip time. In this article, I explore gender as “lived time” in relation to a pressing feminist issue: social recognition of the chronic illness endometriosis (endo). Based on my interviews with individuals diagnosed with endo, I argue that lived time can be studied by approaching becoming as a dynamic process or flow of recognition, creating certain temporal patterns in the lifeworld. I propose the concept of “endo time” as a phenomenological conception of the lived time of endo. I identify three temporal patterns that characterize endo time: waiting time (I), cyclical or chronic time (II), and sedimented time (III). The analysis contributes to feminist philosophy by detailing how gender appears as a specific orchestration of time. Because of its connection to feminized pain and menstrual flow on the one hand and social recognition on the other, endo presents an illuminating case for exploring the relation between gender, recognition, and lived time.

National Category
Gender Studies
Research subject
Gender Studies
Identifiers
urn:nbn:se:su:diva-227854 (URN)10.1017/hyp.2023.116 (DOI)001192297600001 ()2-s2.0-85190141686 (Scopus ID)
Available from: 2024-03-29 Created: 2024-03-29 Last updated: 2026-03-03Bibliographically approved
2. Endo Episteme: Epistemic Injustice and the Misrecognition of Endometriosis
Open this publication in new window or tab >>Endo Episteme: Epistemic Injustice and the Misrecognition of Endometriosis
2024 (English)In: Feminist Philosophy Quarterly, ISSN 2371-2570, Vol. 10, no 4, article id 16491Article in journal (Refereed) Published
Abstract [en]

The process of gaining recognition and treatment for a medical condition involves multiple stages where knowledge is negotiated along the way. This is particularly true for endometriosis, or “endo,” a chronic condition affecting one in ten menstruating individuals. In this article, I present a phenomenology of key epistemic practices involved in the journey toward knowledge about endo, based on interviews with fifteen individuals diagnosed with endometriosis in Sweden. These lived practices constitute what I call endo episteme and demonstrate how knowledge is gained, negotiated, or lost. Drawing on Miranda Fricker’s notion of epistemic injustice and Axel Honneth’s theory of recognition, I conceptualize the following practices: comparing-with, expressive uptake, a pedagogy of pain, the struggle for diagnosis, an epistemology of ignorance, and epistemic activism. Together, these practices shape the crucial processes of becoming a knower, becoming a patient, and becoming knowledge in relation to endo. This work contributes to feminist and social philosophy by enriching the frameworks provided by Fricker and Honneth, and it introduces novel concepts to deepen our understanding of the experiences of endo patients. The analysis of endo episteme emphasizes the central role of epistemic practices for the misrecognition of a gendered illness affecting millions worldwide.

Keywords
recognition, chronic illness, diagnosis, endometriosis, epistemic injustice, phenomenology
National Category
Gender Studies
Research subject
Gender Studies
Identifiers
urn:nbn:se:su:diva-245331 (URN)
Available from: 2025-08-05 Created: 2025-08-05 Last updated: 2026-03-03Bibliographically approved
3. Endo Politics: How Identity Obstructs the Recognition of Endometriosis
Open this publication in new window or tab >>Endo Politics: How Identity Obstructs the Recognition of Endometriosis
(English)Manuscript (preprint) (Other academic)
Abstract [en]

For people with endometriosis – a chronic disease commonly known as ‘endo’ where tissue similar to the uterine lining grows outside the uterus – the journey to diagnosis is often challenging. Symptoms are frequently dismissed or normalised, leading to significant delays in diagnosis. In this article, based on interviews with 15 individuals diagnosed with endometriosis in Sweden, I describe and analyse how their quest for diagnosis and treatment manifests as a ‘struggle for recognition,’ which I call endo politics. This struggle carries particular feminist significance, as it involves a prevalent gendered condition that remains underrecognised, underresearched, and undertreated. I argue that this case illuminates central debates in feminist and political theory on the concept of recognition. Leveraging a recent dialogue between Axel Honneth and Judith Butler alongside the interview findings, I examine how to theorise recognition, identity, and their role in social movements. I identify three main themes of endo politics as it appears in the lifeworld of interviewees: developing a fighting spirit, becoming a ‘we,’ and struggling to be included. The analysis ultimately suggests that while identity itself may not be the primary ‘object’ of recognition, social identities can obstruct recognition in the pursuit of diagnosis and treatment of endo.

Keywords
Axel Honneth, identity politics, Judith Butler, recognition theory, social movements
National Category
Gender Studies
Research subject
Gender Studies
Identifiers
urn:nbn:se:su:diva-252986 (URN)
Available from: 2026-03-02 Created: 2026-03-02 Last updated: 2026-03-12Bibliographically approved

Open Access in DiVA

Recognizing Endo(9806 kB)332 downloads
File information
File name FULLTEXT03.pdfFile size 9806 kBChecksum SHA-512
6faaea00fe98ea51fce13bcd4e6e0c8ab449862feb35d4abd2776b32861b003c5478a2e8985b044320e69c229e0f2aa24a7d8d5ecb7c615fca4bc634a48a05f5
Type fulltextMimetype application/pdf

Search in DiVA

By author/editor
Hallström, Ina
By organisation
Department of Ethnology, History of Religions and Gender Studies
Gender Studies

Search outside of DiVA

GoogleGoogle Scholar
Total: 332 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

isbn
urn-nbn

Altmetric score

isbn
urn-nbn
Total: 774 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf