“Activism Was a Survival Strategy”: Chronic Illness and the Power of Endometriosis Activism as Work

activism | chronic illness | endometriosis | gender | work

This article is part of the special issue “Laboring from Ex- Centric Sites: Disability, Chronicity and Work”, Anthropology of Work Review 46(1), July 2025, edited by Giorgio Brocco and Stefanie Mauksch. In this article, we take the example of endometriosis activism to explore the interrelationship between chronic illness, activism, and work. Endometriosis is a life- limiting condition affecting at least one in ten girls and women, and unmeasured numbers of transgender and gender- diverse people. While most studies emphasize the disease's negative effects on people's paid work, we extend the concept of work to include the unpaid labor of activism. Moreover, building on critical analyses of care work and activism, we also illuminate the complex link between endo- metriosis and activism, highlighting both activism's empowering potential and its connection to paid employment. The framing of activism as work also reveals the condition's susceptibility to capitalist performance pressures which may negatively impact health and well- being, highlighting the broader interplay between activism, political structures, and labor. This article thus makes two key contributions: first, it theorizes activism as an invisible and unpaid form of labor that plays a vital role in shaping the lived experiences, narratives, and public understanding of endometriosis and chronic illness more broadly. Second, it deepens our understanding of the multifaceted implications of endometriosis in relation to labor—both paid and unpaid—thereby situat - ing the condition within broader sociopolitical and economic structures. 1 | Introduction In March 2023, the streets of Berlin came alive with passion as endometriosis activists, draped in bright yellow and pink, took to the pavements for this year's “Endo March.” The rhythmic chants and the collective determination painted a vivid picture of a community demanding not just awareness but also tangi - ble change in the political acknowledgement of and approach to the chronic illness endometriosis. The protest march, organized by several activist groups, among them End Endo Silence and the Endo App, wound its way to the Ministry of Health, a sym - bol of the bureaucratic fortress the protestors aimed to address with their collective voice. Signs hoisted high, activists carried not just placards but also the weight of years of undiagnosed pain, ignorance, and medical gaslighting—the invalidation and dismissal experienced by sufferers when relating their illness during encounters with medical professionals (Sebring 2021 ). Since its establishment in 2014, “Endo March” has grown into a global movement, with over a 100 organizations, activists, and self- help groups from more than 60 countries joining forces. 1 In Germany, it has become the leading endometriosis aware - ness campaign, aiming to shed light on a disease that has lin - gered in the shadows of medical understanding for decades. However, despite being the most visible, Endo March is not the only awareness campaign or activist endeavor focusing on 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. © 2025 The Author(s). Anthropology of Work Review published by Wiley Periodicals LLC on behalf of American Anthropological Association. [Correction added on 24 August 2025, after first online publication: The special issue title has been corrected.] 2 of 11 Anthropology of Work Review, 2025 endometriosis. Moreover, while it attempts to join forces with many (inter- ) national activist groups, resulting in larger protests like the one described above, the everyday reality of most endo - metriosis activism is usually much less visible and often goes unnoticed by the political public. For instance, much of the ac - tivism surrounding endometriosis occurs on social media plat - forms. In addition to raising awareness, advocating for broader recognition of the disease, and calling for improved medical and nonmedical care, a significant portion of endometriosis- r elated content on these platforms emphasizes mutual support and the sharing of health information (Seo et al.  2025). This content tar- gets primarily individuals who either suspect they are affected by the condition or have been diagnosed with endometriosis rather than the general public. The disease thus often remains invisible to those outside the endometriosis community. In this article, we focus on these latter aspects of endometriosis activ - ism: the many hours of largely invisible work spent on activism, activists' aims, its impact on activists, most of whom live with endometriosis themselves, and activists' own interpretation of what “activism” is and means, both for themselves and individ - uals with endometriosis more generally. Endometriosis (or “endo”) is a disease where tissue similar to the lining of the uterus grows in other parts of the body and forms lesions in various organs, causing a range of symptoms, most no- tably chronic inflammation and severe pain. It is estimated to af- fect one in ten cis girls and women, and an unknown number of transgender and gender nonconfirming persons as well as cis men (Jones  2021). 2 For many people living with endometriosis, the condition is physically, psychologically, and socially life- l imiting, costly to treat, and often highly stigmatized. Among the areas of life most impacted is the realm of work (Krsmanovic and Dean 2022; Sayer- Jone s and Sherman  2022; Seear 2009). Accordingly, most existing social, medical, and psychological research investigat - ing endometriosis and work focuses on the detrimental impact of the condition, in particular chronic pain, and on an individual's ability to manage pain and succeed in their profession (Armour et al. 2022 ; Fourquet et al. 2011 ; Soliman et al. 2017 ). In this article, we build on this body of research, but—inspired by research on care work (Abel and Nelson 1990; Ferguson  2015; Mol et al.  2010) and on activism (Willow and Yotebieng  2020)— extend the conceptualization of work to also include activism (in this case: endometriosis activism) as a form of unpaid work, for which we use the term “activism work.” Moreover, rather than limiting our investigation to the debilitating interrelationship between endometriosis and work, following DelVecchio Good's argument about the potential of work to alleviate pain (1994), we additionally shed light on the potential positive outcomes arising from the intersection of the domains of illness/disease and activ- ism work. Our research on the intricate relationship between these two domains thus explores how activist engagement in - fluences the lived experiences and embodied understanding of this chronic condition among people living with endometriosis. We argue that activism work also has the potential to contribute to a more positive experience of chronic illnesses, such as endo - metriosis; for some patients it can even be empowering because it increases agency and maintains self- e fficacy. Moreover, the

of this activist work, for example, political and societal

of the condition or release of additional fund- ing for research and treatment, may also positively influence the realm of paid work by improving the structural contexts for those living and working with endometriosis. However, our re - search also reveals that because of its resemblance with work, activism work risks becoming subject to the capitalist logic of performance pressure with its potential detrimental effects on the course of disease and quality of life. We argue that viewing activism through the lens of work enables researchers to gain a deeper understanding of the positive and negative impacts of health activism on people's lives and how this extends beyond individual experiences, permeating into political structures and, consequently, affecting the broader landscapes of paid employ - ment and overall well- b eing. 2 | Navigating Endometriosis and the Labor of Advocacy Endometriosis causes a variety of symptoms, ranging from debil- itating pelvic and abdominal pain to nausea, painful urination or defecation, bowel and bladder problems, pain related to sex - ual intercourse, reduced fertility or infertility, depression, and fatigue. Disease progression involves the gradual escalation of pain (Ballweg  2003; Mechsner 2021 ). However, despite its major impact on affected people's lives, endometriosis is systematically neglected in research and funding. Social research on endome - triosis has shown that this ignorance is strongly linked to the framing of the illness as “female,” associating it with historically grounded ideas of “hysteria” (Young et  al.  2018) and “female weakness” (Cole et al.  2021). Endometriosis is thus situated in a long tradition of delegitimization of the bodies and symptoms of disease among persons who divert from the cis male “norm” (Hudson  2022)—including not only cisgender women but also trans and gender- d iverse people (Jones  2021). Within the med - ical system, the widespread dismissal of endometriosis contrib - utes to delayed diagnosis and acknowledgment of the condition, limited access to care, and as a result, often long- t erm morbidity leading potentially to additional morbidity or disability (Ballard et al. 2006 ; The Lancet 2024 ). Social science research has shown that the dismissal of endome- triosis is often connected to difficulties—experienced by both patients and health professionals—in recognizing symptoms as “abnormal” and in portraying sufferers as unable to cope with what is considered “normal pain” (Bullo  2020). 3 Navigating what Lindeman  ( 2023, 20) describes as the “medical mine - field”—including experiences of medical gaslighting—requires endometriosis patients to work tirelessly to establish credibility, all the while taking care to strike a tone that will have them taken seriously. As many with endometriosis begin experienc - ing symptoms at the onset of menstruation, gaslighting becomes deeply ingrained in their everyday lives (e.g., the dismissal of their bodily knowledge can lead to self- b lame) as well as into interactions with the medical system, creating patterns that are difficult to break (Markovic et  al.  2008). Management of the disease is thus not only achieved through the work of medical professionals, some of whom indeed provide excellent care, but primarily through patients'—and activists'—own “entrepre - neurship” (Guzmen- C armeli and Rier  2023): that is, through pa- tients' self- go vernance and the act of becoming experts for their own condition (Whelan  2007). This, however, involves a tremen- dous amount of work, including efforts to establish credibility 3 of 11 (Werner and Malterud  2003), time spent acquiring medical knowledge and expertise (Seear  2009), and the energy invested in both medical treatment and nonmedical disease management. This involves numerous encounters with various specialists— gynecologists, colorectal surgeons, urologists, physiotherapists, reproductive health specialists, or naturopaths—and cycles of invasive treatments as well as time- c onsuming and expensive experiments to alter diets (Mechsner  2021). As a consequence, the evolving nature of knowledge about endometriosis within the medical community, political circles, and society more gen- erally, is largely the result of substantial efforts and activist work by people living with the disease. The long- t erm impact of chronic medical conditions, such as en- dometriosis, on patients' lives—an experience anthropologists have termed chronic living (Manderson and Smith- M orris  2010; Manderson and Wahlberg  2020; Wahlberg et  al.  2021)—often spans years or even decades. While epidemiologists use “disabil- ity adjusted life years” to quantify this amount of time (Wahlberg and Rose  2015), anthropologists have a long- s tanding tradition of ethnographically documenting the diverse manifestations of chronic living and associated pain and contextualizing them with a view on varying living circumstances and healthcare systems. In the case of endometriosis, the most common element of chronic living is pain. DelVecchio Good et al. ( 1994) and Denny ( 2018) emphasize the value of ethnography in understanding pain as it highlights how pain, especially when coupled with uncertainty (Denny  2018), shapes daily life in ways that biomedical methods, like pain scales, cannot capture. Ethnographic research, partic - ularly through an intersectional lens (Macgregor et  al.  2023), reveals how pain management intersects with other life aspects, such as work, in ways that extend beyond the conventional nar - ratives of stress, dissatisfaction, and the exhausting dimensions of work. This approach also delves into the intricacies of coping mechanisms. Building on this scholarship, we suggest that a reevaluation of the multifaceted role work plays for the lived experiences of chronic illness and pain among sufferers contributes to a more comprehensive understanding of the dynamics at play in the in - terrelationship between chronic living and work. We build on DelVecchio Good's  ( 1994) argument that while work can be a source of stress that negatively impacts health and vice versa, it can also help persons suffering from pain to exert control over the disruptions it causes. Accordingly, work does not only have negative effects but, paradoxically, may also serve as both a po - tential palliative mechanism or source of distraction, mitigat - ing the amplification of chronic pain and serving to maintain self- e fficacy and achieve self- r ealization, despite the challenges posed by chronic pain. We argue that this empowering capacity of work also plays a role in the context of endometriosis activ - ism. We thereby build on a long tradition within medical an - thropology of studying and documenting health activism by persons with chronic diseases and disability and how this ac - tivism impacts the ways in which they experience their condi - tion (cf. Garland- T homson  2009; Whyte et al.  2013; Willow and Yotebieng  2020). Surprisingly, the two bodies of research on the interrelationship between chronic illness and work on the one hand and chronic illness and activism on the other are remarkably disconnected. Social science research on activism, especially on the study of social movements, has made such a connection and shown that the boundaries between activism and work can be fluid, for example, where activism is a salaried profession or integrated into professional contexts (e.g., Costa et al.  2021; Valocchi  2013). Some anthropologists (e.g., Nading  2013; Cooper  2015) have made similar claims, predominantly with reference to volunteer health activism. The connection between activism and work has also been studied with a focus on activism for work, for exam - ple, with the goal of improving working conditions and access to work (e.g., Durrenberger and Erem 2015 ). Beyond these works, anthropology and neighboring disciplines have rarely theorized activism as labor. In her work on Black women's community activism in the US, feminist economist Nina Banks ( 2020) addresses this theoretical and empirical gap by iden- tifying the community as a site of production similar to the house- hold, thereby equating community activism with domestic labor. Banks claims that “this new framework enables us to examine in- tersectional linkages across different sites of production—firms, households, and communities—where multiple forms of oppres - sion operate in structuring peoples' lives” (2020, 343). Two crucial features support the conceptualization of activism as work: First, the practical tasks involved in activism would unequiv- ocally be considered as work if performed in professional contexts. Second, activism ideally produces goods and services—a process which corresponds to the classical economic definition of work. Against this background, neglecting activism as work undermines its significance as a site of production ( 2020, 350, 352). These ob- servations can be directly linked to the theorization of unpaid work as invisible work, that receives neither monetary compensa- tion nor legal recognition, especially in the form of care or domes- tic labor (Fraser and Gordon  1994). From a neo- M arxist feminist perspective, it has been shown that care work is overwhelmingly gendered as “female” and, especially in domestic settings, usually not valorized as work (Drotbohm and Alber  2015). Based on this observation, several scholars have proposed to extend the concept of “work” beyond waged labor to also include invisible types of work such as emotional labor (Hochschild  1983), domestic labor (Abel and Nelson  1990), or care work (Boris and Parreñas  2010). Most of these approaches, however, are based on the assumption that work is done for others. Only a few scholars have drawn atten- tion to the fact that work can also be done and is necessary in order to take care of oneself, as is the case among ill persons who have to invest vast amounts of care (including emotional labor) on their own bodies and health (Mol et al. 2010). Among people with “unexplained” pain or ignored diseases, the work they need to do on themselves to manage chronic living is often complemented by work for oneself that is, in fact, directed at others. This is particularly the case among medical staff, but also persons active in social and work environments. This phenomenon has been demonstrated with regard to various, and particularly contested, diseases, such as ME/CFS (Rogers  2022), fibromyal- gia, and also endometriosis (Guidone 2020; Markovic et al.  2008; Seear  2014). All these conditions lack complete medical explana- tions, are frequently attributed to psychogenic origins, and cannot at the time of writing be “objectively” confirmed through fixed biomarkers. Persons with these conditions need to constantly 4 of 11 Anthropology of Work Review, 2025 work to elucidate their condition, a task that can be particularly ar- duous, especially in interactions with medical professionals who assume the role of “expert” in contrast to the “lay” patient. Emma Whelan ( 2003) characterizes the efforts (in this case: endometri - osis) patients must undertake to educate their physicians about their condition as “boundary work” (cf. Gieryn  1983): the navi - gation of what she calls the “expert–lay divide” which is marked by competing claims of expertise. This is where activism comes into play—as a mode of engagement that underscores the agency of activists within a setting marked by structural constraints (Dave  2012; cf. Podgornik- J akil and Bens  2021). Activism aims at changing existing circumstances which, as we show in this paper, in turn has the potential to open up new spaces for agency. Intriguingly, the time and effort invested by activists are seldom acknowledged as work—a fact that is illustrative of the historical neglect of unpaid labor as work. In the case of endometriosis ac- tivism, the connection between care work and unpaid activism is particularly striking as both are inseparably intertwined with gender- related expectations. By bringing together these theoretical frameworks and bodies of research, this article makes two major contributions. On a con - ceptual level, we expand the theorization of activism to encom - pass invisible, nonmarket forms of labor, which we consider as sites of production similar to those in the market economy (cf. Banks  2020) and thereby expand and complicate the conceptu - alization of work. On an empirical level, we uncover the complex interrelationship between endometriosis, work, and activism, which has so far not received much attention in anthropology. 3 | Methodology: Exploring Endo Activism Through Patchwork Ethnography This article is the result of our collaborative research on endome- triosis in Germany, initiated in 2020, which seeks to fill the con - siderable gap in social science research on this chronic condition within the country. Our research commenced with an examina - tion of public and political discourses related to this neglected disease, involving the collection and analysis of newspaper arti - cles, political statements, press releases, and other material pub- lished by various activist groups. 4 Additionally, we conducted an extensive literature review on endometriosis that spans PubMed/ Medicine databases as well as materials from history, psychol - ogy, art, medical sociology and anthropology, and feminist and queer studies. Unlike traditional ethnographic research, which primarily relies on uninterrupted long- t erm participant obser - vation and qualitative interviews, we employed the approach of “patchwork ethnography” (Günel et  al.  2020), which allows for intermittent ethnographic research and values “fragmentary yet rigorous” data. Over the years of our ethnographic encoun - ter, we witnessed how the endometriosis movement in Germany and internationally gained strength. As noted elsewhere (cf. Hudson  2022 for the UK; Seear  2014 for Australia; Jones  2016 for the US), endo-movement have brought the condition into the public domain and problematized its long- s tanding cultural and political invisibility. Activist- l obbying by endometriosis sufferers and advocacy organizations in various countries has played a central role in raising awareness of the condition and the needs of people with endometriosis in contexts in which formalized policy is absent. With this article we aim to contribute to this body of research by investigating this development in Germany—a country in which social science research on endometriosis is almost nonexistent. Our research focused on this activism in “real time” by conduct- ing participant observation at activist events (some of which took place online, due to COVID- a nd endometriosis- r elated health restrictions) and protest marches. We also monitored the social media activities of activist organizations and individuals living with endometriosis, even if they did not explicitly identify them- selves as activists. Particularly within the realm of social media, numerous individuals who may best be described with the term “endo influencers” share posts related to endometriosis without explicitly adhering to an activist agenda, yet their online presence yields similar effects. Additionally, in March 2024 we conducted thematic interviews with three endometriosis activists/lobbyists to explore their views on activism, work, and the condition. To capture different perspectives within endometriosis activism, we selected activists with very different activist agendas for these in- terviews. All our interviewees are co- f ounders and hold leading roles in their respective activist groups. Eli,5 a university student, co- f ounded a queer endometriosis online self- he lp group and identifies as agender. In endometriosis activism, which strongly emphasizes the female- g endered aspect of endometriosis, queer- ness and gender nonconformity are often ignored. Therefore, we purposefully sampled for this criterion. Our second interviewee, Alina, is an activist researcher and artist. Alina holds a tenured position at a university and was able to include endometriosis activism in her academic work, therefore connecting these two domains. Here, work and activism are particularly tightly linked and as an academic, Alina was able to contribute to our research in the three roles of patient, activist, and researcher. Ursula, our third interviewee, is the co- f ounder of a large endometriosis lobby group and currently a fully funded PhD student. In contrast to our other two interviewees, Ursula made a clear distinction be - tween activism and lobbying, emphasizing that her volunteer work should be classified as the latter. She viewed activism as a form of protest, while lobbying, in her view, is aimed at driving political change. In this paper, we use this distinction as an emic perspective rather than as an academic classification. The interviews lasted between one and one and a half hours and, with the consent of our interviewees, we recorded and tran- scribed the interviews. We subsequently conducted a thematic analysis and identified three key themes in the interviews: en - dometriosis and the workplace, activism as work, and the goals of endometriosis activism. We complemented and triangulated our interview data with social media content on Instagram 6 and other publicly available data (such as position papers) we had collected since 2020. Some of the interview quotes we use in this paper were edited for clarity and conciseness. All interviewees reviewed the text before publication. 4 | “Will I Always Be Able to Perform This Job With My Chronic Illnesses?”: Endometriosis and the Workplace As mentioned above, one of the primary areas impacted by en- dometriosis is an individual's well- b eing at work. Scholarship on the interrelationship between endometriosis and work pre - dominantly problematizes the negative effects of the condition 5 of 11 on productivity (Fourquet et  al.  2011; Soliman et  al.  2018). Endometriosis symptoms, particularly pain and fatigue, can sig - nificantly impede concentration and task performance (Armour et  al.  2022). Studies have shown that affected people reduced their jobs or even had to give up work entirely due to endometri- osis (Fagervold et al. 2009 ). The negative correlation between (paid) labor and endometri - osis, health- r elated limitations in career choice, along with the influence of working conditions on the disease also emerged as an important theme in our interviews. Eli, who at the time of the interview was preparing for their final examinations at uni - versity, noted: What first comes to my mind when I think of work and endometriosis is the paid work that is affected and impeded by it. Every time I read job advertisements, I think, does it say anything about working from home, does it say anything about minimum attendance and stuff like that? I read job advertisements in a completely different light because I must constantly ask myself, will I always be able to perform this job with my chronic illnesses? Alina emphasized the gratitude she felt for the support and sympathy received from her team at the university, whose members are aware of her condition. She reflected on her past experiences, noting: “I myself had issues related to different workplaces that I worked at in the past because I was getting sick too often.” Indeed, her friend, with whom she co- f ounded the activist group, had to resign from her paid job because her endometriosis has become too severe. However, our empirical data suggest that there is also a nega - tive effect in the opposite direction: work and especially stress may contribute to a worsening of the condition. This observation is in line with a quantitative study conducted by the German “Endometriosis Association” (Endometriose- V ereinigung Deutschland e.V.) in 2022 with 2293 respondents, all of whom had a surgically confirmed diagnosis of endometriosis  ( 2022). 44.5% of the respondents claimed that their endometriosis symp- toms emerged or worsened because of their work. An additional 28% claimed the same, but stated that their symptoms improved or even disappeared when they were given the flexibility to ap - propriately react to their health problems (such as working from home or flexible working hours). Accordingly, almost two thirds of survey respondents reported a negative impact of work on the experience of endometriosis, while also emphasizing that changes in working conditions, such as a generous policy re - garding sick leave, adjusted physical demands, and the possibil - ity to lie down, are seen to be helpful resources for professional performance and substantially contribute to their well- b eing. Remarkably, the detrimental effects of work on endometriosis have, apart from the above survey, been almost completely ig - nored by existing research, with only very few studies touching on this topic through investigation into the negative impact of stress on the condition (e.g., Reis et  al.  2020). This is a major research gap, which we address in this paper; however, we also show how urgently the area demands more extensive research. For example, Ursula explained how work can negatively affect her condition: With my endometriosis, stress worsens the pain. In weeks where I feel I can't cope with all of it, with my PhD thesis or my endometriosis [volunteering] work, or in weeks where both are labor- i ntensive, it may happen that my pain gets worse. Concerns about potential job loss due to recurrent illness and the resulting financial strain, as well as worries about the neg - ative impact of the condition on their health have been shown to be common issues among people with endometriosis globally (Fourquet et al.  2011; Nnoaham et al.  2011). As the above sur - vey results and a study covering the entire German- s peaking region (Sperschneider et  al.  2019) well illustrate, this is also evident among people living with the condition in Germany. Our research showed that this leads to an immense need for information and support concerning work and endometriosis. For example, Eli highlighted participants' wish to discuss this topic during almost every bi- m onthly meeting of their queer self- h elp group. Discussions in social media, patient workshops in rehabilitation centers, and counseling demanded from and provided by endometriosis activist groups confirm this obser - vation. Remarkably, this need persists despite legal protection against dismissals based solely on health issues and the legally mandated eligibility of chronically ill and disabled persons to receive appropriate support in Germany. However, both as - pects are contingent upon the formal recognition of a person's “disability status” (degree of disability: Grad der Behinderung, GdB) according to the “Severe Disability Pass Regulation” (cf. Endometriose- V ereinigung Deutschland e.V.,  n.d.). While indi - viduals with severe endometriosis are entitled to this disability status, the process is lengthy and can be difficult to perform as it involves the detailed disclosure of one's medical condition for assessment by an authorized health professional. Furthermore, according to activists the status is also frequently denied by the authorities. This also happened to Eli: I applied for GdB and everything that can go wrong went wrong. I am now conducting my first judicial procedure because the authorities have completely misjudged endometriosis. I'm going to address this in one of our upcoming [self- h elp group] meetings and share my experience because this is a really big topic and there is a lot of ignorance among the authorities. The degree of disability is quantified in steps of 10, ranging from 10 to 100. This scale determines the level of support and special- n eeds accommodations for which a person is eligible for (e.g., additional leave, shortened working hours, or the option to work from home). However, the “Severe Disability Pass,” which entitles its holder to support, is often only granted temporarily. After a patient has had surgery, the degree of disability may be reduced or retracted entirely, resulting in the revocation or nonrenewal of the pass. Moreover, assessing the degree of functional impairment caused by endometriosis poses challenges, as pain is not universally ac - knowledged as a gauge of functional impairment and the extent of visible endometriosis does not consistently align with symptom 6 of 11 Anthropology of Work Review, 2025 severity. Accordingly, functional impairment cannot be objectively measured for endometriosis, a problem with high potential of re- sulting in a recognized degree of disability which understates the impairment experienced by people living with the condition in their everyday lives (Mechsner 2023). Research has also shown that disclosing one's disability status can have tangible disadvantages in the workplace, such as discrimi - nation in recruitment or promotion processes, as well as a height- ened risk of being recommended for early retirement (Soliman et al.  2018). Despite strong legislation in Germany, empirical data show that this problem persists here as well. Workplace counseling by social law specialists in German rehabilitation clinics strongly focuses on this topic, and reports by individuals with endome - triosis on the problems they encountered in their professional lives confirm this observation (Meier zu Biesen  forthcoming). Neoliberal expectations regarding productivity, and availability can further exacerbate the pressure faced by those with endome- triosis, as has been shown for chronic illness and disability more generally (Wendell 2001). The characterization of endometriosis as a “female” disease which is connected to organs linked to sexuality and reproduction may further exacerbate the hesitation to disclose the condition at the workplace, as noted by Ursula: There are many topics that are socially taboo, menstruation and female sexuality and things like that, which many people don't necessarily want to discuss with their employers or simply don't want everyone to know. A representative study on work- s pecific stress in endometriosis (Sperschneider et al.  2019) confirmed the observation that people with endometriosis often conceal their condition for reasons rang- ing from the belief that endometriosis is too personal to share, to concerns about potential job loss or not being taken seriously. To regain and sustain productivity, people with endometriosis may need to allocate leisure time to recover from endometriosis symptoms (Grogan et al.  2018). This interplay between stigma - tization, health concerns, misinformation about endometriosis, workplace dynamics, and legal considerations underscores the multifaceted challenges faced by people with endometriosis as they navigate the intersection of chronic illness and professional lives. 7 Workplaces are rarely targeted as spaces of intervention, as many people with endometriosis fear professional repercus - sions, such as job loss, if they openly advocate for their cause (Krsmanovic and Dean  2022). As a result, they channel their ac- tivism into external arenas, avoiding direct confrontation within their places of employment. This separation reinforces a divide between two forms of labor: income- g enerating work and activ- ism. Rather than demanding that their workplaces acknowledge and accommodate their condition, their activism takes an indi - rect form—one that does not directly challenge institutions but instead translates into unpaid, yet essential, labor. This observa - tion underscores our broader argument that activism operates as a form of work shaped by structural constraints and the neces - sity of strategic self- p reservation. 5 | “The Work Is Still the Same”: Activism as Work Whether in the workplace, interactions with health professionals and administration, or in their everyday lives, people with endome- triosis often find themselves in encounters with others unaffected by the condition and who, in many cases, have no knowledge of it. Educating one's surroundings (e.g., family, friends, or colleagues) about the condition and its impacts demands considerable effort, dedication, and labor. This is also where activism comes into play. However, endometriosis activism in Germany comprises a wide spectrum of activities with diverse goals and target audiences. What unites these activities is the tremendous amount of time and labor invested by activists. While our interviewees clearly distin- guished between the labor they undertake as volunteers and the paid work they do (or anticipate doing in the future), throughout all our interviews, the boundary between these two realms be - came increasingly blurred. Eli's experience illustrates this: I don't see activism directly as work, but rather as, yes, I somehow have to do this to improve the situation for myself and other people. But when I do activist things, it still feels like work afterwards. The perception of unpaid and often invisible activities as not being equivalent to work has been extensively examined in the scholarly discourse on care work (Finch and Groves  1983; Gardiner  2000). The activism work undertaken by our interlocutors as volunteers, their personal perspectives on activism work, and how it is per - ceived by outsiders bear striking resemblance to unpaid care work. An important aspect of this is the sense that the work needs to be carried out, even if it is not paid: I think, originally, there was a gap somewhere, so when we started the project, there was or still is nothing comparable in that sense […] So there was a gap and I think I'm generally quite a political person and I would say that there are, or can be, many challenges that those affected [by endometriosis] experience in their everyday lives. Things like counseling and self- h elp provide good support. But just because I, as an affected person, regularly attend my local support group meetings, the healthcare system won't change. But that's what we need. The support on an individual level is simply not enough to make a real long- t erm difference and that's why we [founded the lobby group]. At the same time, the activities our interviewees described themselves performing for the purpose of activism are tasks that would be unquestionably recognized as work in other (pro - fessional) contexts. These tasks included social media manage - ment, networking, e- m ail correspondence, attending meetings and conferences, writing position papers, developing guide - lines, and managing human resources. Alina claimed: “It's all, it is really about strategy making, content management, content creation, research, you know, so it's all definitely labor.” 7 of 11 Eli described similar tasks by using a recent example: For example, I created a post for the start of Endo March on March 1, [2023], which our Instagram account published together with a very important endo content creator. I spent a long time working on this post and subsequently calculated the working hours. Or, in my case, study hours for my degree. And I spent more than two full working days creating this post, incorporating the corrections, designing the graphics, and also exchanging ideas with people again and again. And the post also provoked negative reactions, that was to be expected. So, this also involves a lot of follow- u p work in terms of managing comments. In other words, even after I created this post, I was still busy logging in to Instagram for four days to check if anyone had commented, and if I needed to respond. I felt like it was an obligation, like it was my job. They concluded: “I feel a bit like a manager or CEO of the self- h elp group.” Ursula's description of her volunteer work supports this view: My activities for the strategy work are partly about drafting and writing papers, doing background research for our papers and those given to us by others for review. And writing to politicians on different political levels. We work from local politics to state politics, federal politics, Europe, and are negotiating on the level of the WHO. That means from the bottom to the very top. In other words, it's much about writing e- m ails, […] making requests for conversations. […] Then it often happens that political parties or individual politicians are interested in our work. Then we have to make preparations, revise things again. When political parties want to submit motions in parliament, they end up with us, we revise them, and while we wouldn't call it that [work], in principle that's what it is. […] I also liaise and communicate with other endometriosis associations from other countries. I do volunteer management, which means that if people are interested in joining our team, everything that has to do with political work ends up with me […], onboarding of new people and who works in which projects and so on. Even the work in volunteer management is on a voluntary basis. In the description of her volunteering, Ursula emphasized that in German endometriosis activism, political change is under - taken exclusively by people living with the condition and other volunteers. In 2023, this lobbying resulted in the release of pub - lic funding of €5 million annually for endometriosis research, an achievement that can be exclusively ascribed to the work of volunteers like Ursula. Against this background, it may not be surprising that, unlike Eli, Ursula clearly identified her volun - teering as work: I don't know if everyone in my team would say this, but for the people who are heavily involved in policy work right now, in political networking, it's several hours a week that go into it, it's a lot of weekends that go into it and it's definitely work because it is something that I would get paid for, if we had the money. But we don't have it. Nevertheless, the work is still the same, just because I can't really make a financial profit here doesn't mean that I don't see it as work. Its resemblance to work makes endometriosis activism also sus - ceptible to neoliberal and capitalist principles of productivity, performance, and exploitation (cf. Wendell  2001). Performance pressure was a topic Alina problematized by drawing attention to the fact that events like Endo March can also create a stressful obligation to invest as much time and labor as possible: It's lots of free labor to support others, to do activism, to support yourself, to ensure that you are a good example, to ensure that you fit into the right narratives, for instance, discussions around the real definition of endometriosis, and not getting it wrong. […] Especially now during endometriosis awareness week […] I feel that despite us being disabled, we are being pushed to produce, produce, produce. 6 | W orking for the Community, Coping With Endometriosis, and Dealing With Performance Pressure Endometriosis activisms represent a collective attempt to act upon the medical, political, and social neglect of the condition and at the same time provide a platform for collective empow - erment and the identification of shared needs and goals. Even though activism can be extremely time- c onsuming and labori - ous, for our interviewees, this work serves as an avenue for con - tributing to the common good of their community. The goals of activism and the underlying ideal of community were the aspects where our interviewees differed most. Eli's endome - triosis activism arose from the experience that endometriosis, as a gendered disease, remains entrenched in heteronormative notions of gender and sexuality, thereby excluding all persons who do not identify with the concept of binary heteronormativity. These per- sons experience dual neglect: first, as individuals affected by a ne- glected disease, and second, as persons whose gendered identity falls outside the conventional framing of the condition. Eli's activ- ism addresses this dual neglect and aims at creating a safer space for those who identify as LGBTIQ+: We want to offer a safer space to talk about endometriosis- r elated topics such as surgeries, rehabilitation, work and career, mental health, 8 of 11 Anthropology of Work Review, 2025 relationships, hormonal therapy or non- ho rmonal therapy, without the attributions that are expected in the endometriosis world. So that trans, non- b inary people, and every other queer person, can also talk about their specific endometriosis problems […] without being constantly labelled as a woman or as straight or as allosexual or anything like that, that these harmful assumptions are gone for the time being, so to speak. In contrast, Alina approached endometriosis from the perspec - tive of researcher and artist, or, as she termed it, an “artivist.” Her concept of community, which she addressed with her activ - ism, was more abstract and broader: For me, it started with the research project […] Like creating a community and creating this conversation around [endometriosis] art and amplifying the art of [other] artists […]. And create some sort of solidarity and together think about this transformative justice and thinking about the ways we can do things together, right? Ursula, consistent with her preference to be recognized as a lob- byist rather than an activist, concentrates on policy change for the collective benefit of all persons living with endometriosis: It's about scale, the different levels of influence. The goal is to move away from the individual level towards the structural level. To bring about structural change in the healthcare system. However, on an individual level, activism work may also con - stitute a coping strategy to confront, alleviate, or escape pain and other endometriosis- r elated afflictions. Moreover, it helps activists to uphold self- e fficacy and attain self- r ealization de - spite the challenges posed by their disease. For our interviewees, activism thus also contributes to empowerment: they fostered connections within “their” community for mutual support and joined forces as part of a “community of purpose,” even if they did not directly benefit from this on an individual level. Ursula explained this sentiment as follows: I myself do not benefit from the current changes, such as the inclusion of endometriosis in the sex education curriculum, as I am no longer in school. However, for future generations of pupils who may experience intense pain during menstruation, it's crucial to receive a simple message: extreme menstrual pain, or pain outside of menstruation, is not normal. While this may seem basic, it's essential to communicate this message effectively. Doing so could lead to earlier diagnosis, potentially preventing the delays experienced by my generation. Eli, too, valued connections with their community, in this case queer people with endometriosis. Eli recalled: “It was a lucky coincidence that two queer people were at the rehabilitation clinic simultaneously. This coincidence spurred the idea of es - tablishing a self- h elp group.” Accordingly, supporting the queer community, creating a safer space for queer people with endo - metriosis and adenomyosis, 8 and making mainstream endome - triosis activism more inclusive were the primary goals of their activism. Alina's activism and her sense of belonging to the community arose from feelings of loneliness and the inability to share her experiences with others following her second endometriosis surgery. During this period, when she was bed- b ound and ex - tremely unwell, she found solace in connecting with others: For me, activism was a strategy for survival, because I could not connect with anybody else. Digital activism played a significant role, because I was able to connect with people all over who struggled with similar issues, and who were able to empathize with me and also support me whenever I needed it. In addition, activism work as a way to connect with one's com - munity and make a positive contribution to it at times also func- tions as a “haven from pain,” as DelVecchio Good  ( 1994) has shown so convincingly in relation to work. Ursula's description is illustrative of the positive potential of work: There are days where I lie on the couch and cannot move. On days like that, it's really difficult to find hope because everything just sucks, everything hurts. […] On such bad days, this work just makes me personally feel good, because then I can do things like looking at WhatsApp messages from the team popping up and I think, it somehow always keeps going. Or I remember things that we've recently achieved. These examples illustrate the multifaceted role of activism: con - tributing to the community on the one hand and serving as a personal coping mechanism on the other. Especially when peo - ple with endometriosis conceptualize it as work—albeit unpaid and often invisible—it may also assume qualities akin to paid employment, with both positive and negative implications. 7 | Conclusion Our research has unveiled an under- e xplored aspect of living with endometriosis: the interconnectedness between chronic pain, work, and activism. Taking the example of German endometriosis activism, we redefine activism as a particular kind of work that has a transformative potential for individuals living with chronic pain, for example, by fostering meaning- m aking and connecting individuals to a community while also enabling them to contribute to this community's greater good. The realization that chronic pain and other endometriosis- r elated impairments not only limit but also reshape one's capacities to engage in social and political participation, thereby contributing 9 of 11 to community- b uilding among people with endometriosis, under- scores the interplay between health and broader societal dynam- ics. This expanded perspective challenges conventional narratives that predominantly focus on the negative aspects of work. Our empirical findings indicate that individuals with endometriosis perceive their activism in this light. For our interviewees, the expe- rience of living with chronic pain and often invisible physical lim- itations was a motivation to “work” as activists—a kind of work that helped them to actively deal with their individual suffering but also laid the foundation for a political movement addressing a condition that remains surprisingly under- r esearched. The recog- nition of this activism as a specific form of labor is largely absent in academia and, similarly, within activism and society at large. Therefore, our research contributes to a more nuanced under - standing of the experiences of people living with chronic illness, the multifaceted role of work in their lives, and the impact their activism work has on their individual lives, their community, and society more broadly. This comprehensive perspective is mirrored in the three different domains outlined above, as becomes evident, for example, in the “work” metaphors and vocabulary used by our interviewees illus- trating the tension between benefits and costs people with endo- metriosis must navigate in both the worlds of work and activism. This approach also encourages a deeper appreciation of the multi- faceted nature of chronic pain and advocates for a more holistic ap- proach to addressing its challenges. By broadening the definition of work to include unpaid activities and exploring activism's role as a form of work, we have uncovered a nuanced interplay between endometriosis and broader societal engagement. The theorization of care work and activism has allowed us to unlock the empow - ering potential inherent in activist engagement and its profound influence on the lived experiences of those navigating the com - plexities of endometriosis, as well as broader societal engagement, occasionally influencing policy changes. Acknowledgments We wish to express our deep gratitude to the activists who tirelessly advocate for endometriosis awareness and to those living with the condition. Their courage in sharing personal experiences has been vital to deepening public understanding, and their openness and gen- erosity have made this research possible. We also extend our sincere thanks to the editors and anonymous reviewers of this Special Issue for their thoughtful and constructive feedback on earlier drafts of this article. A previous version of this article was presented at the German Association of Social and Cultural Anthropology Conference in July 2023, Contested Knowledge: Anthropological Perspectives, during the workshop “Laboring from Ex-Centric Sites: Disability, Chronicity, and Work,” organized by Stefanie Mauksch and Giorgio Brocco. We are grateful for the insightful comments and discussion that emerged from that context. Finally, we thank Dr. Gabrielle Robilliard- Wit t for her invaluable assistance with language editing. Open Access funding enabled and organized by Projekt DEAL. Endnotes 1 F or more details, see the movement's website https:// endom arch. org/ . 2 W e employ the terms “women” and “women's health” when contextually suitable but do acknowledge the gender essentialist implications of these terms (cf. Guidone  2020; Jones  2021). In other instances, we use “endo patients” or “people with endometriosis” as an inclusive designation. 3 R ecognition is also particularly difficult for BIPOC (Black, Indigenous, and People of Color) patients, who have been shown to be treated by physicians as less reliable narrators of pain experiences than white people (Bougie et al. 2019 ; Jones  2021). 4 T o protect our interviewees, we have decided to not disclose the names of the groups with whom we interacted. 5 A ll names are pseudonyms and we removed or changed all identifying information. 6 W e limited our review of social media content to Instagram because we observed that in Germany, this is currently the most used platform for endometriosis activism. While some social research investigates both Facebook and Instagram (e.g., Holowka  2022), among the three activ- ist groups we chose our interviewees from, only one has a Facebook page whereas all three actively post content on Instagram. Instagram is also the platform used by most German “endo influencers.” 7 E mployers may be understanding and accommodating, yet they often assume that everything is resolved once an employee un - dergoes surgery. The myth that endometriosis is curable, whether through surgery, pregnancy, or menopause, is particularly harmful in this context. 8 A denomyosis is increasingly recognized as a distinct disease rather than a subtype of endometriosis. To be more inclusive, from the outset this group has explicitly also been open for individuals who have ade - nomyosis without concurrent endometriosis.

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