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

“Activism Was a Survival Strategy”: Chronic Illness and the Power of Endometriosis Activism as Work [Correction added on 24 August 2025, after first online publication: The special issue title has been corrected.] ABSTRACT 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 endometriosis 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 situating 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 tangible 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 symbol 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 awareness campaign, aiming to shed light on a disease that has lingered 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 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 endometriosis activism is usually much less visible and often goes unnoticed by the political public. For instance, much of the activism surrounding endometriosis occurs on social media platforms. 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-related content on these platforms emphasizes mutual support and the sharing of health information (Seo et al. 2025). This content targets 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 activism: 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 individuals 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 notably chronic inflammation and severe pain. It is estimated to affect 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-limiting, costly to treat, and often highly stigmatized. Among the areas of life most impacted is the realm of work (Krsmanovic and Dean 2022; Sayer-Jones and Sherman 2022; Seear 2009). Accordingly, most existing social, medical, and psychological research investigating 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 activism work. Our research on the intricate relationship between these two domains thus explores how activist engagement influences 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 endometriosis; for some patients it can even be empowering because it increases agency and maintains self-efficacy. Moreover, the results of this activist work, for example, political and societal acknowledgement of the condition or release of additional funding 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 research 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 employment and overall well-being. 2 Navigating Endometriosis and the Labor of Advocacy Endometriosis causes a variety of symptoms, ranging from debilitating pelvic and abdominal pain to nausea, painful urination or defecation, bowel and bladder problems, pain related to sexual 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 endometriosis 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-diverse people (Jones 2021). Within the medical system, the widespread dismissal of endometriosis contributes to delayed diagnosis and acknowledgment of the condition, limited access to care, and as a result, often long-term morbidity leading potentially to additional morbidity or disability (Ballard et al. 2006; The Lancet 2024). Social science research has shown that the dismissal of endometriosis 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 minefield”—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 experiencing 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-blame) 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 “entrepreneurship” (Guzmen-Carmeli and Rier 2023): that is, through patients' self-governance and the act of becoming experts for their own condition (Whelan 2007). This, however, involves a tremendous amount of work, including efforts to establish credibility (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-consuming 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 generally, is largely the result of substantial efforts and activist work by people living with the disease. The long-term impact of chronic medical conditions, such as endometriosis, on patients' lives—an experience anthropologists have termed chronic living (Manderson and Smith-Morris 2010; Manderson and Wahlberg 2020; Wahlberg et al. 2021)—often spans years or even decades. While epidemiologists use “disability adjusted life years” to quantify this amount of time (Wahlberg and Rose 2015), anthropologists have a long-standing 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, particularly 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 narratives 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 interrelationship 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 potential palliative mechanism or source of distraction, mitigating the amplification of chronic pain and serving to maintain self-efficacy and achieve self-realization, despite the challenges posed by chronic pain. We argue that this empowering capacity of work also plays a role in the context of endometriosis activism. We thereby build on a long tradition within medical anthropology of studying and documenting health activism by persons with chronic diseases and disability and how this activism impacts the ways in which they experience their condition (cf. Garland-Thomson 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 example, 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 identifying the community as a site of production similar to the household, thereby equating community activism with domestic labor. Banks claims that “this new framework enables us to examine intersectional linkages across different sites of production—firms, households, and communities—where multiple forms of oppression 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 unequivocally 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 observations can be directly linked to the theorization of unpaid work as invisible work, that receives neither monetary compensation nor legal recognition, especially in the form of care or domestic labor (Fraser and Gordon 1994). From a neo-Marxist 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 attention 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), fibromyalgia, and also endometriosis (Guidone 2020; Markovic et al. 2008; Seear 2014). All these conditions lack complete medical explanations, 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 work to elucidate their condition, a task that can be particularly arduous, 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: endometriosis) patients must undertake to educate their physicians about their condition as “boundary work” (cf. Gieryn 1983): the navigation 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-Jakil 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 activism, 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 conceptual level, we expand the theorization of activism to encompass 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 conceptualization 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 endometriosis in Germany, initiated in 2020, which seeks to fill the considerable gap in social science research on this chronic condition within the country. Our research commenced with an examination of public and political discourses related to this neglected disease, involving the collection and analysis of newspaper articles, political statements, press releases, and other material published 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, psychology, art, medical sociology and anthropology, and feminist and queer studies. Unlike traditional ethnographic research, which primarily relies on uninterrupted long-term participant observation 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 encounter, 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-standing cultural and political invisibility. Activist-lobbying 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 conducting participant observation at activist events (some of which took place online, due to COVID- and endometriosis-related 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 themselves 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 interviews. All our interviewees are co-founders and hold leading roles in their respective activist groups. Eli,5 a university student, co-founded a queer endometriosis online self-help group and identifies as agender. In endometriosis activism, which strongly emphasizes the female-gendered aspect of endometriosis, queerness 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-founder 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 between 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 transcribed the interviews. We subsequently conducted a thematic analysis and identified three key themes in the interviews: endometriosis and the workplace, activism as work, and the goals of endometriosis activism. We complemented and triangulated our interview data with social media content on Instagram6 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 endometriosis is an individual's well-being at work. Scholarship on the interrelationship between endometriosis and work predominantly problematizes the negative effects of the condition on productivity (Fourquet et al. 2011; Soliman et al. 2018). Endometriosis symptoms, particularly pain and fatigue, can significantly 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 endometriosis (Fagervold et al. 2009). 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-founded the activist group, had to resign from her paid job because her endometriosis has become too severe. 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-intensive, it may happen that my pain gets worse. 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-help 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-needs 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 acknowledged as a gauge of functional impairment and the extent of visible endometriosis does not consistently align with symptom severity. Accordingly, functional impairment cannot be objectively measured for endometriosis, a problem with high potential of resulting 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 discrimination in recruitment or promotion processes, as well as a heightened 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 endometriosis 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 endometriosis, as has been shown for chronic illness and disability more generally (Wendell 2001). 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-specific stress in endometriosis (Sperschneider et al. 2019) confirmed the observation that people with endometriosis often conceal their condition for reasons ranging 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 stigmatization, 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 repercussions, such as job loss, if they openly advocate for their cause (Krsmanovic and Dean 2022). As a result, they channel their activism into external arenas, avoiding direct confrontation within their places of employment. This separation reinforces a divide between two forms of labor: income-generating work and activism. Rather than demanding that their workplaces acknowledge and accommodate their condition, their activism takes an indirect form—one that does not directly challenge institutions but instead translates into unpaid, yet essential, labor. This observation underscores our broader argument that activism operates as a form of work shaped by structural constraints and the necessity of strategic self-preservation. 5 “The Work Is Still the Same”: Activism as Work 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. 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-help 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-term 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 (professional) contexts. These tasks included social media management, networking, e-mail correspondence, attending meetings and conferences, writing position papers, developing guidelines, 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.” 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-up 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. 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-mails, […] 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. 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. 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 Working 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 empowerment and the identification of shared needs and goals. Even though activism can be extremely time-consuming and laborious, for our interviewees, this work serves as an avenue for contributing to the common good of their community. We want to offer a safer space to talk about endometriosis-related topics such as surgeries, rehabilitation, work and career, mental health, relationships, hormonal therapy or non-hormonal therapy, without the attributions that are expected in the endometriosis world. So that trans, non-binary 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. 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? 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. 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 establishing a self-help group.” Accordingly, supporting the queer community, creating a safer space for queer people with endometriosis and adenomyosis,8 and making mainstream endometriosis activism more inclusive were the primary goals of their activism. 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. 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: contributing to the community on the one hand and serving as a personal coping mechanism on the other. Especially when people 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-explored 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-making 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-related impairments not only limit but also reshape one's capacities to engage in social and political participation, thereby contributing to community-building among people with endometriosis, underscores the interplay between health and broader societal dynamics. 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 experience of living with chronic pain and often invisible physical limitations 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-researched. The recognition 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 understanding 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 illustrating the tension between benefits and costs people with endometriosis must navigate in both the worlds of work and activism. This approach also encourages a deeper appreciation of the multifaceted nature of chronic pain and advocates for a more holistic approach 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 empowering potential inherent in activist engagement and its profound influence on the lived experiences of those navigating the complexities 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 generosity 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-Witt for her invaluable assistance with language editing. Open Access funding enabled and organized by Projekt DEAL.