{"paper_id":"bfaedc6b-b22b-4796-b90c-496cb4f1013f","body_text":"1 of 11Anthropology of Work Review, 2025; 46:e70005\nhttps://doi.org/10.1111/awr.70005\nAnthropology of Work Review\n SPECIAL ISSUE  Laboring from Ex-Centric Sites: Disability, Chronicity, and Work\nRESEARCH ARTICLE OPEN ACCESS\n“Activism Was a Survival Strategy”: Chronic Illness and the \nPower of Endometriosis Activism as Work\nAnika König 1  |  Caroline Meier zu Biesen 2\n1Institute of Social and Cultural Anthropology, Freie Universität Berlin, Berlin, Germany | 2Athena Institute, Vrije Universiteit Amsterdam, \nAmsterdam, the Netherlands\nCorrespondence:  Anika König (anika.koenig@fu-berlin.de )\nReceived:  30 March 2024 | Revised:  23 April 2025 | Accepted:  23 April 2025\nKeywords: activism | chronic illness | endometriosis | gender | work\nABSTRACT\nThis article is part of the special issue “Laboring from Ex-  Centric Sites: Disability, Chronicity and Work”, Anthropology of Work \nReview 46(1), July 2025, edited by Giorgio Brocco and Stefanie Mauksch. In this article, we take the example of endometriosis \nactivism to explore the interrelationship between chronic illness, activism, and work. Endometriosis is a life-  limiting condition \naffecting at least one in ten girls and women, and unmeasured numbers of transgender and gender-  diverse people. While most \nstudies emphasize the disease's negative effects on people's paid work, we extend the concept of work to include the unpaid labor \nof activism. Moreover, building on critical analyses of care work and activism, we also illuminate the complex link between endo-\nmetriosis and activism, highlighting both activism's empowering potential and its connection to paid employment. The framing \nof activism as work also reveals the condition's susceptibility to capitalist performance pressures which may negatively impact \nhealth and well-  being, highlighting the broader interplay between activism, political structures, and labor. This article thus \nmakes two key contributions: first, it theorizes activism as an invisible and unpaid form of labor that plays a vital role in shaping \nthe lived experiences, narratives, and public understanding of endometriosis and chronic illness more broadly. Second, it deepens \nour understanding of the multifaceted implications of endometriosis in relation to labor—both paid and unpaid—thereby situat -\ning the condition within broader sociopolitical and economic structures.\n1   |   Introduction\nIn March 2023, the streets of Berlin came alive with passion as \nendometriosis activists, draped in bright yellow and pink, took \nto the pavements for this year's “Endo March.” The rhythmic \nchants and the collective determination painted a vivid picture \nof a community demanding not just awareness but also tangi -\nble change in the political acknowledgement of and approach to \nthe chronic illness endometriosis. The protest march, organized \nby several activist groups, among them End Endo Silence  and \nthe Endo App, wound its way to the Ministry of Health, a sym -\nbol of the bureaucratic fortress the protestors aimed to address \nwith their collective voice. Signs hoisted high, activists carried \nnot just placards but also the weight of years of undiagnosed \npain, ignorance, and medical gaslighting—the invalidation and \ndismissal experienced by sufferers when relating their illness \nduring encounters with medical professionals (Sebring 2021 ).\nSince its establishment in 2014, “Endo March” has grown into a \nglobal movement, with over a 100 organizations, activists, and \nself- help groups from more than 60 countries joining forces. 1 \nIn Germany, it has become the leading endometriosis aware -\nness campaign, aiming to shed light on a disease that has lin -\ngered in the shadows of medical understanding for decades. \nHowever, despite being the most visible, Endo March is not \nthe only awareness campaign or activist endeavor focusing on \nThis is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, \nprovided the original work is properly cited.\n© 2025 The Author(s). Anthropology of Work Review published by Wiley Periodicals LLC on behalf of American Anthropological Association.\n[Correction added on 24 August 2025, after first online publication: The special issue title has been corrected.]\n\n\n2 of 11 Anthropology of Work Review, 2025\nendometriosis. Moreover, while it attempts to join forces with \nmany (inter- )\nnational activist groups, resulting in larger protests \nlike the one described above, the everyday reality of most endo -\nmetriosis activism is usually much less visible and often goes \nunnoticed by the political public. For instance, much of the ac -\ntivism surrounding endometriosis occurs on social media plat -\nforms. In addition to raising awareness, advocating for broader \nrecognition of the disease, and calling for improved medical and \nnonmedical care, a significant portion of endometriosis-\n r\nelated \ncontent on these platforms emphasizes mutual support and the \nsharing of health information (Seo et al.  2025). This content tar-\ngets primarily individuals who either suspect they are affected \nby the condition or have been diagnosed with endometriosis \nrather than the general public. The disease thus often remains \ninvisible to those outside the endometriosis community. In this \narticle, we focus on these latter aspects of endometriosis activ -\nism: the many hours of largely invisible work spent on activism, \nactivists' aims, its impact on activists, most of whom live with \nendometriosis themselves, and activists' own interpretation of \nwhat “activism” is and means, both for themselves and individ -\nuals with endometriosis more generally.\nEndometriosis (or “endo”) is a disease where tissue similar to the \nlining of the uterus grows in other parts of the body and forms \nlesions in various organs, causing a range of symptoms, most no-\ntably chronic inflammation and severe pain. It is estimated to af-\nfect one in ten cis girls and women, and an unknown number of \ntransgender and gender nonconfirming persons as well as cis men \n(Jones  2021).\n2 For many people living with endometriosis, the \ncondition is physically, psychologically, and socially life- l\nimiting, \ncostly to treat, and often highly stigmatized. Among the areas of life \nmost impacted is the realm of work (Krsmanovic and Dean 2022; \nSayer-\n Jone\ns and Sherman  2022; Seear 2009). Accordingly, most \nexisting social, medical, and psychological research investigat -\ning endometriosis and work focuses on the detrimental impact of \nthe condition, in particular chronic pain, and on an individual's \nability to manage pain and succeed in their profession (Armour \net al. 2022 ; Fourquet et al. 2011 ; Soliman et al. 2017 ).\nIn this article, we build on this body of research, but—inspired \nby research on care work (Abel and Nelson 1990; Ferguson  2015; \nMol et al.  2010) and on activism (Willow and Yotebieng  2020)—\nextend the conceptualization of work to also include activism (in \nthis case: endometriosis activism) as a form of unpaid work, for \nwhich we use the term “activism work.” Moreover, rather than \nlimiting our investigation to the debilitating interrelationship \nbetween endometriosis and work, following DelVecchio Good's \nargument about the potential of work to alleviate pain (1994), we \nadditionally shed light on the potential positive outcomes arising \nfrom the intersection of the domains of illness/disease and activ-\nism work. Our research on the intricate relationship between \nthese two domains thus explores how activist engagement in -\nfluences the lived experiences and embodied understanding of \nthis chronic condition among people living with endometriosis. \nWe argue that activism work also has the potential to contribute \nto a more positive experience of chronic illnesses, such as endo -\nmetriosis; for some patients it can even be empowering because \nit increases agency and maintains self-\n e\nfficacy. Moreover, the \nresults of this activist work, for example, political and societal \nacknowledgement of the condition or release of additional fund-\ning for research and treatment, may also positively influence \nthe realm of paid work by improving the structural contexts for \nthose living and working with endometriosis. However, our re -\nsearch also reveals that because of its resemblance with work, \nactivism work risks becoming subject to the capitalist logic of \nperformance pressure with its potential detrimental effects on \nthe course of disease and quality of life. We argue that viewing \nactivism through the lens of work enables researchers to gain \na deeper understanding of the positive and negative impacts of \nhealth activism on people's lives and how this extends beyond \nindividual experiences, permeating into political structures and, \nconsequently, affecting the broader landscapes of paid employ -\nment and overall well-\n b\neing.\n2   |    Navigating Endometriosis and the Labor of \nAdvocacy\nEndometriosis causes a variety of symptoms, ranging from debil-\nitating pelvic and abdominal pain to nausea, painful urination \nor defecation, bowel and bladder problems, pain related to sex -\nual intercourse, reduced fertility or infertility, depression, and \nfatigue. Disease progression involves the gradual escalation of \npain (Ballweg  2003; Mechsner 2021 ). However, despite its major \nimpact on affected people's lives, endometriosis is systematically \nneglected in research and funding. Social research on endome -\ntriosis has shown that this ignorance is strongly linked to the \nframing of the illness as “female,” associating it with historically \ngrounded ideas of “hysteria” (Young et  al.  2018) and “female \nweakness” (Cole et al.  2021). Endometriosis is thus situated in \na long tradition of delegitimization of the bodies and symptoms \nof disease among persons who divert from the cis male “norm” \n(Hudson  2022)—including not only cisgender women but also \ntrans and gender-\n d\niverse people (Jones  2021). Within the med -\nical system, the widespread dismissal of endometriosis contrib -\nutes to delayed diagnosis and acknowledgment of the condition, \nlimited access to care, and as a result, often long-\n t\nerm morbidity \nleading potentially to additional morbidity or disability (Ballard \net al. 2006 ; The Lancet 2024 ).\nSocial science research has shown that the dismissal of endome-\ntriosis is often connected to difficulties—experienced by both \npatients and health professionals—in recognizing symptoms as \n“abnormal” and in portraying sufferers as unable to cope with \nwhat is considered “normal pain” (Bullo  2020).\n3 Navigating \nwhat Lindeman  ( 2023, 20) describes as the “medical mine -\nfield”—including experiences of medical gaslighting—requires \nendometriosis patients to work tirelessly to establish credibility, \nall the while taking care to strike a tone that will have them \ntaken seriously. As many with endometriosis begin experienc -\ning symptoms at the onset of menstruation, gaslighting becomes \ndeeply ingrained in their everyday lives (e.g., the dismissal of \ntheir bodily knowledge can lead to self-\n b\nlame) as well as into \ninteractions with the medical system, creating patterns that are \ndifficult to break (Markovic et  al.  2008). Management of the \ndisease is thus not only achieved through the work of medical \nprofessionals, some of whom indeed provide excellent care, but \nprimarily through patients'—and activists'—own “entrepre -\nneurship” (Guzmen-\n C\narmeli and Rier  2023): that is, through pa-\ntients' self- go\nvernance and the act of becoming experts for their \nown condition (Whelan  2007). This, however, involves a tremen-\ndous amount of work, including efforts to establish credibility \n\n\n3 of 11\n(Werner and Malterud  2003), time spent acquiring medical \nknowledge and expertise (Seear  2009), and the energy invested \nin both medical treatment and nonmedical disease management. \nThis involves numerous encounters with various specialists—\ngynecologists, colorectal surgeons, urologists, physiotherapists, \nreproductive health specialists, or naturopaths—and cycles of \ninvasive treatments as well as time-\n c\nonsuming and expensive \nexperiments to alter diets (Mechsner  2021). As a consequence, \nthe evolving nature of knowledge about endometriosis within \nthe medical community, political circles, and society more gen-\nerally, is largely the result of substantial efforts and activist work \nby people living with the disease.\nThe long-\n t\nerm impact of chronic medical conditions, such as en-\ndometriosis, on patients' lives—an experience anthropologists \nhave termed chronic living (Manderson and Smith-  M\norris  2010; \nManderson and Wahlberg  2020; Wahlberg et  al.  2021)—often \nspans years or even decades. While epidemiologists use “disabil-\nity adjusted life years” to quantify this amount of time (Wahlberg \nand Rose  2015), anthropologists have a long-\n s\ntanding tradition \nof ethnographically documenting the diverse manifestations of \nchronic living and associated pain and contextualizing them with \na view on varying living circumstances and healthcare systems.\nIn the case of endometriosis, the most common element of chronic \nliving is pain. DelVecchio Good et al. ( 1994) and Denny ( 2018) \nemphasize the value of ethnography in understanding pain as it \nhighlights how pain, especially when coupled with uncertainty \n(Denny  2018), shapes daily life in ways that biomedical methods, \nlike pain scales, cannot capture. Ethnographic research, partic -\nularly through an intersectional lens (Macgregor et  al.  2023), \nreveals how pain management intersects with other life aspects, \nsuch as work, in ways that extend beyond the conventional nar -\nratives of stress, dissatisfaction, and the exhausting dimensions \nof work. This approach also delves into the intricacies of coping \nmechanisms.\nBuilding on this scholarship, we suggest that a reevaluation of \nthe multifaceted role work plays for the lived experiences of \nchronic illness and pain among sufferers contributes to a more \ncomprehensive understanding of the dynamics at play in the in -\nterrelationship between chronic living and work. We build on \nDelVecchio Good's  ( 1994) argument that while work can be a \nsource of stress that negatively impacts health and vice versa, it \ncan also help persons suffering from pain to exert control over \nthe disruptions it causes. Accordingly, work does not only have \nnegative effects but, paradoxically, may also serve as both a po -\ntential palliative mechanism or source of distraction, mitigat -\ning the amplification of chronic pain and serving to maintain \nself-\n e\nfficacy and achieve self-  r\nealization, despite the challenges \nposed by chronic pain. We argue that this empowering capacity \nof work also plays a role in the context of endometriosis activ -\nism. We thereby build on a long tradition within medical an -\nthropology of studying and documenting health activism by \npersons with chronic diseases and disability and how this ac -\ntivism impacts the ways in which they experience their condi -\ntion (cf. Garland-\n T\nhomson  2009; Whyte et al.  2013; Willow and \nYotebieng  2020).\nSurprisingly, the two bodies of research on the interrelationship \nbetween chronic illness and work on the one hand and chronic \nillness and activism on the other are remarkably disconnected. \nSocial science research on activism, especially on the study of \nsocial movements, has made such a connection and shown that \nthe boundaries between activism and work can be fluid, for \nexample, where activism is a salaried profession or integrated \ninto professional contexts (e.g., Costa et al.  2021; Valocchi  2013). \nSome anthropologists (e.g., Nading  2013; Cooper  2015) have \nmade similar claims, predominantly with reference to volunteer \nhealth activism. The connection between activism and work has \nalso been studied with a focus on activism for  work, for exam -\nple, with the goal of improving working conditions and access to \nwork (e.g., Durrenberger and Erem 2015 ).\nBeyond these works, anthropology and neighboring disciplines \nhave rarely theorized activism as labor. In her work on Black \nwomen's community activism in the US, feminist economist Nina \nBanks ( 2020) addresses this theoretical and empirical gap by iden-\ntifying the community as a site of production similar to the house-\nhold, thereby equating community activism with domestic labor. \nBanks claims that “this new framework enables us to examine in-\ntersectional linkages across different sites of production—firms, \nhouseholds, and communities—where multiple forms of oppres -\nsion operate in structuring peoples' lives” (2020, 343).\nTwo crucial features support the conceptualization of activism as \nwork: First, the practical tasks involved in activism would unequiv-\nocally be considered as work if performed in professional contexts. \nSecond, activism ideally produces goods and services—a process \nwhich corresponds to the classical economic definition of work. \nAgainst this background, neglecting activism as work undermines \nits significance as a site of production ( 2020, 350, 352). These ob-\nservations can be directly linked to the theorization of unpaid \nwork as invisible work, that receives neither monetary compensa-\ntion nor legal recognition, especially in the form of care or domes-\ntic labor (Fraser and Gordon  1994). From a neo-\n M\narxist feminist \nperspective, it has been shown that care work is overwhelmingly \ngendered as “female” and, especially in domestic settings, usually \nnot valorized as work (Drotbohm and Alber  2015). Based on this \nobservation, several scholars have proposed to extend the concept \nof “work” beyond waged labor to also include invisible  types of \nwork such as emotional labor (Hochschild  1983), domestic labor \n(Abel and Nelson  1990), or care work (Boris and Parreñas  2010). \nMost of these approaches, however, are based on the assumption \nthat work is done for others. Only a few scholars have drawn atten-\ntion to the fact that work can also be done and is necessary in order \nto take care of oneself, as is the case among ill persons who have \nto invest vast amounts of care (including emotional labor) on their \nown bodies and health (Mol et al. 2010).\nAmong people with “unexplained” pain or ignored diseases, the \nwork they need to do on  themselves to manage chronic living is \noften complemented by work for oneself that is, in fact, directed at \nothers. This is particularly the case among medical staff, but also \npersons active in social and work environments. This phenomenon \nhas been demonstrated with regard to various, and particularly \ncontested, diseases, such as ME/CFS (Rogers  2022), fibromyal-\ngia, and also endometriosis (Guidone 2020; Markovic et al.  2008; \nSeear  2014). All these conditions lack complete medical explana-\ntions, are frequently attributed to psychogenic origins, and cannot \nat the time of writing be “objectively” confirmed through fixed \nbiomarkers. Persons with these conditions need to constantly \n\n\n4 of 11 Anthropology of Work Review, 2025\nwork to elucidate their condition, a task that can be particularly ar-\nduous, especially in interactions with medical professionals who \nassume the role of “expert” in contrast to the “lay” patient. Emma \nWhelan ( 2003) characterizes the efforts (in this case: endometri -\nosis) patients must undertake to educate their physicians about \ntheir condition as “boundary work” (cf. Gieryn  1983): the navi -\ngation of what she calls the “expert–lay divide” which is marked \nby competing claims of expertise. This is where activism comes \ninto play—as a mode of engagement that underscores the agency \nof activists within a setting marked by structural constraints \n(Dave  2012; cf. Podgornik-\n J\nakil and Bens  2021). Activism aims \nat changing existing circumstances which, as we show in this \npaper, in turn has the potential to open up new spaces for agency. \nIntriguingly, the time and effort invested by activists are seldom \nacknowledged as work—a fact that is illustrative of the historical \nneglect of unpaid labor as work. In the case of endometriosis ac-\ntivism, the connection between care work and unpaid activism \nis particularly striking as both are inseparably intertwined with \ngender-\n \nrelated expectations.\nBy bringing together these theoretical frameworks and bodies of \nresearch, this article makes two major contributions. On a con -\nceptual level, we expand the theorization of activism to encom -\npass invisible, nonmarket forms of labor, which we consider as \nsites of production similar to those in the market economy (cf. \nBanks  2020) and thereby expand and complicate the conceptu -\nalization of work. On an empirical level, we uncover the complex \ninterrelationship between endometriosis, work, and activism, \nwhich has so far not received much attention in anthropology.\n3   |    Methodology: Exploring Endo Activism \nThrough Patchwork Ethnography\nThis article is the result of our collaborative research on endome-\ntriosis in Germany, initiated in 2020, which seeks to fill the con -\nsiderable gap in social science research on this chronic condition \nwithin the country. Our research commenced with an examina -\ntion of public and political discourses related to this neglected \ndisease, involving the collection and analysis of newspaper arti -\ncles, political statements, press releases, and other material pub-\nlished by various activist groups.\n4 Additionally, we conducted an \nextensive literature review on endometriosis that spans PubMed/\nMedicine databases as well as materials from history, psychol -\nogy, art, medical sociology and anthropology, and feminist and \nqueer studies. Unlike traditional ethnographic research, which \nprimarily relies on uninterrupted long-\n t\nerm participant obser -\nvation and qualitative interviews, we employed the approach \nof “patchwork ethnography” (Günel et  al.  2020), which allows \nfor intermittent ethnographic research and values “fragmentary \nyet rigorous” data. Over the years of our ethnographic encoun -\nter, we witnessed how the endometriosis movement in Germany \nand internationally gained strength. As noted elsewhere (cf. \nHudson  2022 for the UK; Seear  2014 for Australia; Jones  2016 \nfor the US), endo-movement have brought the condition into the \npublic domain and problematized its long-\n s\ntanding cultural and \npolitical invisibility. Activist- l\nobbying by endometriosis sufferers \nand advocacy organizations in various countries has played a \ncentral role in raising awareness of the condition and the needs \nof people with endometriosis in contexts in which formalized \npolicy is absent.\nWith this article we aim to contribute to this body of research by \ninvestigating this development in Germany—a country in which \nsocial science research on endometriosis is almost nonexistent. \nOur research focused on this activism in “real time” by conduct-\ning participant observation at activist events (some of which took \nplace online, due to COVID-\n  a\nnd endometriosis- r\nelated health \nrestrictions) and protest marches. We also monitored the social \nmedia activities of activist organizations and individuals living \nwith endometriosis, even if they did not explicitly identify them-\nselves as activists. Particularly within the realm of social media, \nnumerous individuals who may best be described with the term \n“endo influencers” share posts related to endometriosis without \nexplicitly adhering to an activist agenda, yet their online presence \nyields similar effects. Additionally, in March 2024 we conducted \nthematic interviews with three endometriosis activists/lobbyists \nto explore their views on activism, work, and the condition. To \ncapture different perspectives within endometriosis activism, we \nselected activists with very different activist agendas for these in-\nterviews. All our interviewees are co-\n f\nounders and hold leading \nroles in their respective activist groups. Eli,5 a university student, \nco- f\nounded a queer endometriosis online self-  he\nlp group and \nidentifies as agender. In endometriosis activism, which strongly \nemphasizes the female-\n g\nendered aspect of endometriosis, queer-\nness and gender nonconformity are often ignored. Therefore, we \npurposefully sampled for this criterion. Our second interviewee, \nAlina, is an activist researcher and artist. Alina holds a tenured \nposition at a university and was able to include endometriosis \nactivism in her academic work, therefore connecting these two \ndomains. Here, work and activism are particularly tightly linked \nand as an academic, Alina was able to contribute to our research \nin the three roles of patient, activist, and researcher. Ursula, our \nthird interviewee, is the co-\n f\nounder of a large endometriosis lobby \ngroup and currently a fully funded PhD student. In contrast to \nour other two interviewees, Ursula made a clear distinction be -\ntween activism and lobbying, emphasizing that her volunteer \nwork should be classified as the latter. She viewed activism as a \nform of protest, while lobbying, in her view, is aimed at driving \npolitical change. In this paper, we use this distinction as an emic \nperspective rather than as an academic classification.\nThe interviews lasted between one and one and a half hours \nand, with the consent of our interviewees, we recorded and tran-\nscribed the interviews. We subsequently conducted a thematic \nanalysis and identified three key themes in the interviews: en -\ndometriosis and the workplace, activism as work, and the goals \nof endometriosis activism. We complemented and triangulated \nour interview data with social media content on Instagram\n6 and \nother publicly available data (such as position papers) we had \ncollected since 2020. Some of the interview quotes we use in this \npaper were edited for clarity and conciseness. All interviewees \nreviewed the text before publication.\n4   |    “Will I Always Be Able to Perform This Job \nWith My Chronic Illnesses?”: Endometriosis and \nthe Workplace\nAs mentioned above, one of the primary areas impacted by en-\ndometriosis is an individual's well-  b\neing at work. Scholarship \non the interrelationship between endometriosis and work pre -\ndominantly problematizes the negative effects of the condition \n\n\n5 of 11\non productivity (Fourquet et  al.  2011; Soliman et  al.  2018). \nEndometriosis symptoms, particularly pain and fatigue, can sig -\nnificantly impede concentration and task performance (Armour \net  al.  2022). Studies have shown that affected people reduced \ntheir jobs or even had to give up work entirely due to endometri-\nosis (Fagervold et al. 2009 ).\nThe negative correlation between (paid) labor and endometri -\nosis, health-  r\nelated limitations in career choice, along with the \ninfluence of working conditions on the disease also emerged as \nan important theme in our interviews. Eli, who at the time of \nthe interview was preparing for their final examinations at uni -\nversity, noted:\nWhat first comes to my mind when I think of work \nand endometriosis is the paid work that is affected and \nimpeded by it. Every time I read job advertisements, I \nthink, does it say anything about working from home, \ndoes it say anything about minimum attendance \nand stuff like that? I read job advertisements in a \ncompletely different light because I must constantly \nask myself, will I always be able to perform this job \nwith my chronic illnesses?\nAlina emphasized the gratitude she felt for the support and \nsympathy received from her team at the university, whose \nmembers are aware of her condition. She reflected on her past \nexperiences, noting: “I myself had issues related to different \nworkplaces that I worked at in the past because I was getting \nsick too often.” Indeed, her friend, with whom she co-\n f\nounded \nthe activist group, had to resign from her paid job because her \nendometriosis has become too severe.\nHowever, our empirical data suggest that there is also a nega -\ntive effect in the opposite direction: work and especially stress \nmay contribute to a worsening of the condition. This observation \nis in line with a quantitative study conducted by the German \n“Endometriosis Association” (Endometriose-\n V\nereinigung \nDeutschland e.V.) in 2022 with 2293 respondents, all of whom \nhad a surgically confirmed diagnosis of endometriosis  ( 2022). \n44.5% of the respondents claimed that their endometriosis symp-\ntoms emerged or worsened because of their work. An additional \n28% claimed the same, but stated that their symptoms improved \nor even disappeared when they were given the flexibility to ap -\npropriately react to their health problems (such as working from \nhome or flexible working hours). Accordingly, almost two thirds \nof survey respondents reported a negative impact of work on \nthe experience of endometriosis, while also emphasizing that \nchanges in working conditions, such as a generous policy re -\ngarding sick leave, adjusted physical demands, and the possibil -\nity to lie down, are seen to be helpful resources for professional \nperformance and substantially contribute to their well-\n b\neing. \nRemarkably, the detrimental effects of work on endometriosis \nhave, apart from the above survey, been almost completely ig -\nnored by existing research, with only very few studies touching \non this topic through investigation into the negative impact of \nstress on the condition (e.g., Reis et  al.  2020). This is a major \nresearch gap, which we address in this paper; however, we also \nshow how urgently the area demands more extensive research. \nFor example, Ursula explained how work can negatively affect \nher condition:\nWith my endometriosis, stress worsens the pain. In \nweeks where I feel I can't cope with all of it, with my \nPhD thesis or my endometriosis [volunteering] work, \nor in weeks where both are labor-\n i\nntensive, it may \nhappen that my pain gets worse.\nConcerns about potential job loss due to recurrent illness and \nthe resulting financial strain, as well as worries about the neg -\native impact of the condition on their health have been shown \nto be common issues among people with endometriosis globally \n(Fourquet et al.  2011; Nnoaham et al.  2011). As the above sur -\nvey results and a study covering the entire German-\n s\npeaking \nregion (Sperschneider et  al.  2019) well illustrate, this is also \nevident among people living with the condition in Germany. \nOur research showed that this leads to an immense need for \ninformation and support concerning work and endometriosis. \nFor example, Eli highlighted participants' wish to discuss this \ntopic during almost every bi-\n m\nonthly meeting of their queer \nself- h\nelp group. Discussions in social media, patient workshops \nin rehabilitation centers, and counseling demanded from and \nprovided by endometriosis activist groups confirm this obser -\nvation. Remarkably, this need persists despite legal protection \nagainst dismissals based solely on health issues and the legally \nmandated eligibility of chronically ill and disabled persons to \nreceive appropriate support in Germany. However, both as -\npects are contingent upon the formal recognition of a person's \n“disability status” (degree of disability: Grad der Behinderung, \nGdB) according to the “Severe Disability Pass Regulation” (cf. \nEndometriose-\n V\nereinigung Deutschland e.V.,  n.d.). While indi -\nviduals with severe endometriosis are entitled to this disability \nstatus, the process is lengthy and can be difficult to perform as \nit involves the detailed disclosure of one's medical condition for \nassessment by an authorized health professional. Furthermore, \naccording to activists the status is also frequently denied by the \nauthorities. This also happened to Eli:\nI applied for GdB and everything that can go wrong \nwent wrong. I am now conducting my first judicial \nprocedure because the authorities have completely \nmisjudged endometriosis. I'm going to address this in \none of our upcoming [self-\n h\nelp group] meetings and \nshare my experience because this is a really big topic \nand there is a lot of ignorance among the authorities.\nThe degree of disability is quantified in steps of 10, ranging from 10 \nto 100. This scale determines the level of support and special-\n n\needs \naccommodations for which a person is eligible for (e.g., additional \nleave, shortened working hours, or the option to work from home). \nHowever, the “Severe Disability Pass,” which entitles its holder \nto support, is often only granted temporarily. After a patient has \nhad surgery, the degree of disability may be reduced or retracted \nentirely, resulting in the revocation or nonrenewal of the pass. \nMoreover, assessing the degree of functional impairment caused \nby endometriosis poses challenges, as pain is not universally ac -\nknowledged as a gauge of functional impairment and the extent \nof visible endometriosis does not consistently align with symptom \n\n\n6 of 11 Anthropology of Work Review, 2025\nseverity. Accordingly, functional impairment cannot be objectively \nmeasured for endometriosis, a problem with high potential of re-\nsulting in a recognized degree of disability which understates the \nimpairment experienced by people living with the condition in \ntheir everyday lives (Mechsner 2023).\nResearch has also shown that disclosing one's disability status can \nhave tangible disadvantages in the workplace, such as discrimi -\nnation in recruitment or promotion processes, as well as a height-\nened risk of being recommended for early retirement (Soliman \net al.  2018). Despite strong legislation in Germany, empirical data \nshow that this problem persists here as well. Workplace counseling \nby social law specialists in German rehabilitation clinics strongly \nfocuses on this topic, and reports by individuals with endome -\ntriosis on the problems they encountered in their professional \nlives confirm this observation (Meier zu Biesen  forthcoming). \nNeoliberal expectations regarding productivity, and availability \ncan further exacerbate the pressure faced by those with endome-\ntriosis, as has been shown for chronic illness and disability more \ngenerally (Wendell 2001).\nThe characterization of endometriosis as a “female” disease which \nis connected to organs linked to sexuality and reproduction may \nfurther exacerbate the hesitation to disclose the condition at the \nworkplace, as noted by Ursula:\nThere are many topics that are socially taboo, \nmenstruation and female sexuality and things like \nthat, which many people don't necessarily want to \ndiscuss with their employers or simply don't want \neveryone to know.\nA representative study on work-\n s\npecific stress in endometriosis \n(Sperschneider et al.  2019) confirmed the observation that people \nwith endometriosis often conceal their condition for reasons rang-\ning from the belief that endometriosis is too personal to share, to \nconcerns about potential job loss or not being taken seriously. \nTo regain and sustain productivity, people with endometriosis \nmay need to allocate leisure time to recover from endometriosis \nsymptoms (Grogan et al.  2018). This interplay between stigma -\ntization, health concerns, misinformation about endometriosis, \nworkplace dynamics, and legal considerations underscores the \nmultifaceted challenges faced by people with endometriosis as \nthey navigate the intersection of chronic illness and professional \nlives.\n7 Workplaces are rarely targeted as spaces of intervention, \nas many people with endometriosis fear professional repercus -\nsions, such as job loss, if they openly advocate for their cause \n(Krsmanovic and Dean  2022). As a result, they channel their ac-\ntivism into external arenas, avoiding direct confrontation within \ntheir places of employment. This separation reinforces a divide \nbetween two forms of labor: income-\n g\nenerating work and activ-\nism. Rather than demanding that their workplaces acknowledge \nand accommodate their condition, their activism takes an indi -\nrect form—one that does not directly challenge institutions but \ninstead translates into unpaid, yet essential, labor. This observa -\ntion underscores our broader argument that activism operates as \na form of work shaped by structural constraints and the neces -\nsity of strategic self-\n p\nreservation.\n5   |    “The Work Is Still the Same”: Activism as Work\nWhether in the workplace, interactions with health professionals \nand administration, or in their everyday lives, people with endome-\ntriosis often find themselves in encounters with others unaffected \nby the condition and who, in many cases, have no knowledge of it. \nEducating one's surroundings (e.g., family, friends, or colleagues) \nabout the condition and its impacts demands considerable effort, \ndedication, and labor. This is also where activism comes into play. \nHowever, endometriosis activism in Germany comprises a wide \nspectrum of activities with diverse goals and target audiences. \nWhat unites these activities is the tremendous amount of time and \nlabor invested by activists. While our interviewees clearly distin-\nguished between the labor they undertake as volunteers and the \npaid work they do (or anticipate doing in the future), throughout \nall our interviews, the boundary between these two realms be -\ncame increasingly blurred. Eli's experience illustrates this:\nI don't see activism directly as work, but rather as, yes, \nI somehow have to do this to improve the situation \nfor myself and other people. But when I do activist \nthings, it still feels like work afterwards.\nThe perception of unpaid and often invisible activities as not being \nequivalent to work has been extensively examined in the scholarly \ndiscourse on care work (Finch and Groves  1983; Gardiner  2000). \nThe activism work undertaken by our interlocutors as volunteers, \ntheir personal perspectives on activism work, and how it is per -\nceived by outsiders bear striking resemblance to unpaid care work. \nAn important aspect of this is the sense that the work needs to be \ncarried out, even if it is not paid:\nI think, originally, there was a gap somewhere, \nso when we started the project, there was or still is \nnothing comparable in that sense […] So there was a \ngap and I think I'm generally quite a political person \nand I would say that there are, or can be, many \nchallenges that those affected [by endometriosis] \nexperience in their everyday lives. Things like \ncounseling and self-\n h\nelp provide good support. But \njust because I, as an affected person, regularly attend \nmy local support group meetings, the healthcare \nsystem won't change. But that's what we need. The \nsupport on an individual level is simply not enough \nto make a real long-\n t\nerm difference and that's why we \n[founded the lobby group].\nAt the same time, the activities our interviewees described \nthemselves performing for the purpose of activism are tasks \nthat would be unquestionably recognized as work in other (pro -\nfessional) contexts. These tasks included social media manage -\nment, networking, e-\n m\nail correspondence, attending meetings \nand conferences, writing position papers, developing guide -\nlines, and managing human resources. Alina claimed: “It's all, \nit is really about strategy making, content management, content \ncreation, research, you know, so it's all definitely labor.”\n\n\n7 of 11\nEli described similar tasks by using a recent example:\nFor example, I created a post for the start of Endo \nMarch on March 1, [2023], which our Instagram \naccount published together with a very important \nendo content creator. I spent a long time working on \nthis post and subsequently calculated the working \nhours. Or, in my case, study hours for my degree. \nAnd I spent more than two full working days creating \nthis post, incorporating the corrections, designing \nthe graphics, and also exchanging ideas with people \nagain and again. And the post also provoked negative \nreactions, that was to be expected. So, this also \ninvolves a lot of follow-\n u\np work in terms of managing \ncomments. In other words, even after I created this \npost, I was still busy logging in to Instagram for four \ndays to check if anyone had commented, and if I \nneeded to respond. I felt like it was an obligation, like \nit was my job.\nThey concluded: “I feel a bit like a manager or CEO of the self-\n \nh\nelp group.” Ursula's description of her volunteer work supports \nthis view:\nMy activities for the strategy work are partly about \ndrafting and writing papers, doing background \nresearch for our papers and those given to us by others \nfor review. And writing to politicians on different \npolitical levels. We work from local politics to state \npolitics, federal politics, Europe, and are negotiating \non the level of the WHO. That means from the bottom \nto the very top. In other words, it's much about writing \ne-\n m\nails, […] making requests for conversations.\n[…] Then it often happens that political parties or\nindividual politicians are interested in our work.\nThen we have to make preparations, revise things\nagain. When political parties want to submit motions\nin parliament, they end up with us, we revise them,\nand while we wouldn't call it that [work], in principle\nthat's what it is. […] I also liaise and communicate\nwith other endometriosis associations from other\ncountries. I do volunteer management, which means\nthat if people are interested in joining our team,\neverything that has to do with political work ends\nup with me […], onboarding of new people and who\nworks in which projects and so on. Even the work in\nvolunteer management is on a voluntary basis.\nIn the description of her volunteering, Ursula emphasized that \nin German endometriosis activism, political change is under -\ntaken exclusively by people living with the condition and other \nvolunteers. In 2023, this lobbying resulted in the release of pub -\nlic funding of €5 million annually for endometriosis research, \nan achievement that can be exclusively ascribed to the work of \nvolunteers like Ursula. Against this background, it may not be \nsurprising that, unlike Eli, Ursula clearly identified her volun -\nteering as work:\nI don't know if everyone in my team would say this, but \nfor the people who are heavily involved in policy work \nright now, in political networking, it's several hours \na week that go into it, it's a lot of weekends that go \ninto it and it's definitely work because it is something \nthat I would get paid for, if we had the money. But we \ndon't have it. Nevertheless, the work is still the same, \njust because I can't really make a financial profit here \ndoesn't mean that I don't see it as work.\nIts resemblance to work makes endometriosis activism also sus -\nceptible to neoliberal and capitalist principles of productivity, \nperformance, and exploitation (cf. Wendell  2001). Performance \npressure was a topic Alina problematized by drawing attention \nto the fact that events like Endo March can also create a stressful \nobligation to invest as much time and labor as possible:\nIt's lots of free labor to support others, to do \nactivism, to support yourself, to ensure that you are \na good example, to ensure that you fit into the right \nnarratives, for instance, discussions around the real \ndefinition of endometriosis, and not getting it wrong. \n[…] Especially now during endometriosis awareness \nweek […] I feel that despite us being disabled, we are \nbeing pushed to produce, produce, produce.\n6   |    W orking for the Community, Coping With \nEndometriosis, and Dealing With Performance \nPressure\nEndometriosis activisms represent a collective attempt to act \nupon the medical, political, and social neglect of the condition \nand at the same time provide a platform for collective empow -\nerment and the identification of shared needs and goals. Even \nthough activism can be extremely time-\n c\nonsuming and labori -\nous, for our interviewees, this work serves as an avenue for con -\ntributing to the common good of their community.\nThe goals of activism and the underlying ideal of community were \nthe aspects where our interviewees differed most. Eli's endome -\ntriosis activism arose from the experience that endometriosis, as a \ngendered disease, remains entrenched in heteronormative notions \nof gender and sexuality, thereby excluding all persons who do not \nidentify with the concept of binary heteronormativity. These per-\nsons experience dual neglect: first, as individuals affected by a ne-\nglected disease, and second, as persons whose gendered identity \nfalls outside the conventional framing of the condition. Eli's activ-\nism addresses this dual neglect and aims at creating a safer space \nfor those who identify as LGBTIQ+:\nWe want to offer a safer space to talk about \nendometriosis-\n r\nelated topics such as surgeries, \nrehabilitation, work and career, mental health, \n\n\n8 of 11 Anthropology of Work Review, 2025\nrelationships, hormonal therapy or non-  ho rmonal \ntherapy, without the attributions that are expected \nin the endometriosis world. So that trans, non-  b\ninary \npeople, and every other queer person, can also talk \nabout their specific endometriosis problems […] \nwithout being constantly labelled as a woman or as \nstraight or as allosexual or anything like that, that \nthese harmful assumptions are gone for the time \nbeing, so to speak.\nIn contrast, Alina approached endometriosis from the perspec -\ntive of researcher and artist, or, as she termed it, an “artivist.” \nHer concept of community, which she addressed with her activ -\nism, was more abstract and broader:\nFor me, it started with the research project […] Like \ncreating a community and creating this conversation \naround [endometriosis] art and amplifying the art of \n[other] artists […]. And create some sort of solidarity \nand together think about this transformative justice \nand thinking about the ways we can do things \ntogether, right?\nUrsula, consistent with her preference to be recognized as a lob-\nbyist rather than an activist, concentrates on policy change for \nthe collective benefit of all persons living with endometriosis:\nIt's about scale, the different levels of influence. The \ngoal is to move away from the individual level towards \nthe structural level. To bring about structural change \nin the healthcare system.\nHowever, on an individual level, activism work may also con -\nstitute a coping strategy to confront, alleviate, or escape pain \nand other endometriosis-\n r\nelated afflictions. Moreover, it helps \nactivists to uphold self-  e\nfficacy and attain self-  r\nealization de -\nspite the challenges posed by their disease. For our interviewees, \nactivism thus also contributes to empowerment: they fostered \nconnections within “their” community for mutual support and \njoined forces as part of a “community of purpose,” even if they \ndid not directly benefit from this on an individual level. Ursula \nexplained this sentiment as follows:\nI myself do not benefit from the current changes, such \nas the inclusion of endometriosis in the sex education \ncurriculum, as I am no longer in school. However, \nfor future generations of pupils who may experience \nintense pain during menstruation, it's crucial to \nreceive a simple message: extreme menstrual pain, \nor pain outside of menstruation, is not normal. While \nthis may seem basic, it's essential to communicate \nthis message effectively. Doing so could lead to \nearlier diagnosis, potentially preventing the delays \nexperienced by my generation.\nEli, too, valued connections with their community, in this case \nqueer people with endometriosis. Eli recalled: “It was a lucky \ncoincidence that two queer people were at the rehabilitation \nclinic simultaneously. This coincidence spurred the idea of es -\ntablishing a self-\n h\nelp group.” Accordingly, supporting the queer \ncommunity, creating a safer space for queer people with endo -\nmetriosis and adenomyosis, 8 and making mainstream endome -\ntriosis activism more inclusive were the primary goals of their \nactivism.\nAlina's activism and her sense of belonging to the community \narose from feelings of loneliness and the inability to share her \nexperiences with others following her second endometriosis \nsurgery. During this period, when she was bed-\n b\nound and ex -\ntremely unwell, she found solace in connecting with others:\nFor me, activism was a strategy for survival, because \nI could not connect with anybody else. Digital \nactivism played a significant role, because I was able \nto connect with people all over who struggled with \nsimilar issues, and who were able to empathize with \nme and also support me whenever I needed it.\nIn addition, activism work as a way to connect with one's com -\nmunity and make a positive contribution to it at times also func-\ntions as a “haven from pain,” as DelVecchio Good  ( 1994) has \nshown so convincingly in relation to work. Ursula's description \nis illustrative of the positive potential of work:\nThere are days where I lie on the couch and cannot \nmove. On days like that, it's really difficult to find hope \nbecause everything just sucks, everything hurts. […] \nOn such bad days, this work just makes me personally \nfeel good, because then I can do things like looking at \nWhatsApp messages from the team popping up and I \nthink, it somehow always keeps going. Or I remember \nthings that we've recently achieved.\nThese examples illustrate the multifaceted role of activism: con -\ntributing to the community on the one hand and serving as a \npersonal coping mechanism on the other. Especially when peo -\nple with endometriosis conceptualize it as work—albeit unpaid \nand often invisible—it may also assume qualities akin to paid \nemployment, with both positive and negative implications.\n7   |    Conclusion\nOur research has unveiled an under- e xplored aspect of living with \nendometriosis: the interconnectedness between chronic pain, \nwork, and activism. Taking the example of German endometriosis \nactivism, we redefine activism as a particular kind of work that \nhas a transformative potential for individuals living with chronic \npain, for example, by fostering meaning-\n m\naking and connecting \nindividuals to a community while also enabling them to contribute \nto this community's greater good.\nThe realization that chronic pain and other endometriosis-\n r\nelated \nimpairments not only limit but also reshape one's capacities to \nengage in social and political participation, thereby contributing \n\n\n9 of 11\nto community- b uilding among people with endometriosis, under-\nscores the interplay between health and broader societal dynam-\nics. This expanded perspective challenges conventional narratives \nthat predominantly focus on the negative aspects of work. Our \nempirical findings indicate that individuals with endometriosis \nperceive their activism in this light. For our interviewees, the expe-\nrience of living with chronic pain and often invisible physical lim-\nitations was a motivation to “work” as activists—a kind of work \nthat helped them to actively deal with their individual suffering \nbut also laid the foundation for a political movement addressing a \ncondition that remains surprisingly under-\n r\nesearched. The recog-\nnition of this activism as a specific form of labor is largely absent \nin academia and, similarly, within activism and society at large. \nTherefore, our research contributes to a more nuanced under -\nstanding of the experiences of people living with chronic illness, \nthe multifaceted role of work in their lives, and the impact their \nactivism work has on their individual lives, their community, and \nsociety more broadly.\nThis comprehensive perspective is mirrored in the three different \ndomains outlined above, as becomes evident, for example, in the \n“work” metaphors and vocabulary used by our interviewees illus-\ntrating the tension between benefits and costs people with endo-\nmetriosis must navigate in both the worlds of work and activism. \nThis approach also encourages a deeper appreciation of the multi-\nfaceted nature of chronic pain and advocates for a more holistic ap-\nproach to addressing its challenges. By broadening the definition \nof work to include unpaid activities and exploring activism's role as \na form of work, we have uncovered a nuanced interplay between \nendometriosis and broader societal engagement. The theorization \nof care work and activism has allowed us to unlock the empow -\nering potential inherent in activist engagement and its profound \ninfluence on the lived experiences of those navigating the com -\nplexities of endometriosis, as well as broader societal engagement, \noccasionally influencing policy changes.\nAcknowledgments\nWe wish to express our deep gratitude to the activists who tirelessly \nadvocate for endometriosis awareness and to those living with the \ncondition. Their courage in sharing personal experiences has been \nvital to deepening public understanding, and their openness and gen-\nerosity have made this research possible. We also extend our sincere \nthanks to the editors and anonymous reviewers of this Special Issue \nfor their thoughtful and constructive feedback on earlier drafts of this \narticle. A previous version of this article was presented at the German \nAssociation of Social and Cultural Anthropology Conference in July \n2023, Contested Knowledge: Anthropological Perspectives, during the \nworkshop “Laboring from Ex-Centric Sites: Disability, Chronicity, \nand Work,” organized by Stefanie Mauksch and Giorgio Brocco. We \nare grateful for the insightful comments and discussion that emerged \nfrom that context. Finally, we thank Dr. Gabrielle Robilliard-\n Wit\nt for \nher invaluable assistance with language editing. Open Access funding \nenabled and organized by Projekt DEAL.\nEndnotes\n 1 F or more details, see the movement's website https:// endom arch. org/ .\n 2 W e employ the terms “women” and “women's health” when contextually \nsuitable but do acknowledge the gender essentialist implications of these \nterms (cf. Guidone  2020; Jones  2021). In other instances, we use “endo \npatients” or “people with endometriosis” as an inclusive designation.\n 3 R ecognition is also particularly difficult for BIPOC (Black, Indigenous, \nand People of Color) patients, who have been shown to be treated by \nphysicians as less reliable narrators of pain experiences than white \npeople (Bougie et al. 2019 ; Jones  2021).\n 4 T o protect our interviewees, we have decided to not disclose the names \nof the groups with whom we interacted.\n 5 A ll names are pseudonyms and we removed or changed all identifying \ninformation.\n 6 W e limited our review of social media content to Instagram because we \nobserved that in Germany, this is currently the most used platform for \nendometriosis activism. While some social research investigates both \nFacebook and Instagram (e.g., Holowka  2022), among the three activ-\nist groups we chose our interviewees from, only one has a Facebook \npage whereas all three actively post content on Instagram. 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