{"paper_id":"45a6c9b9-f524-489a-92dc-144d131b5f66","body_text":"ARTICLE\nEndo Time: Endometriosis and the Flow of\nRecognition\nIna Hallström\nDepartment of Ethnology, History of Religions and Gender Studies, Stockholm University, Stockholm,\nSweden\nEmail: ina.hallstrom@gender.su.se\n(Received 5 April 2021; revised 24 November 2022; accepted 1 March 2023)\nAbstract\nThe relation between time and gender has been extensively discussed in feminist theory,\nfrom Simone de Beauvoir to recent studies of queer temporality and crip time. In this arti-\ncle, I explore gender as “lived time ” in relation to a pressing feminist issue: social recog-\nnition of the chronic illness endometriosis (endo). Based on my interviews with\nindividuals diagnosed with endo, I argue that lived time can be studied by approaching\nbecoming as a dynamic process or flow of recognition, creating certain temporal patterns\nin the lifeworld. I propose the concept of “endo time” as a phenomenological conception\nof the lived time of endo. I identify three temporal patterns that characterize endo time:\nwaiting time (I), cyclical or chronic time (II), and sedimented time (III). The analysis con-\ntributes to feminist philosophy by detailing how gender appears as a specific orchestration\nof time. Because of its connection to feminized pain and menstrual flow on the one hand\nand social recognition on the other, endo presents an illuminating case for exploring the\nrelation between gender, recognition, and lived time.\nHow might time be considered a question of gender justice? My starting point in this\ntext is a pressing feminist issue: social recognition of the painful chronic illness endo-\nmetriosis—or endo.1 Based on an interview study on endo in Sweden, I explore how\nsocial recognition of the condition appears in the lifeworld as a specific orchestration\nof time, what I call endo time . The interviews analyzed here are part of a larger study\nwhere I explore experiences and recognition of endo in Sweden, a country often heralded\nas a gender equality utopia and with a self-declared “first feminist government in the\nworld.”2 I have conducted in-depth interviews with 15 individuals diagnosed with\nendo, ranging from 18 to 62 years old and coming from different parts of the\ncountry. All interviewees but one are cisgender, and a majority are heterosexual. 3\nDuring the course of the interviews, it became clear that time shaped endo experiences\nin a myriad of ways —and in turn, endo shaped the experience of time. Endo affected\neverything from relationships with significant others to education and working life\n© The Author(s), 2024. Published by Cambridge University Press on behalf of Hypatia, a Nonprofit Corporation. This is\nan Open Access article, distributed under the terms of the Creative Commons Attribution licence ( https://\ncreativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium,\nprovided the original work is properly cited.\nHypatia (2024), 39, 423 –443\ndoi:10.1017/hyp.2023.116\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nand, hence, interviewees’ plans and projects for the future. Even so, temporality has not\nbeen made an explicit theme for exploring endo experience. Neither has recognition,\neven though the difficulties in receiving diagnosis, healthcare, and support are by now\nwell-documented (Ballard et al. 2006; Jones 2015; Seear 2009; Shah et al. 2010).\nEndometriosis is defined as a chronic condition where tissue similar to the lining of\nthe uterus (the endometrium) grows outside it and onto pelvic organs. The most com-\nmon symptoms are severe pain and subfertility. Despite descriptions of the condition\nsince the 1860s, the etiology is unknown, and there is still no cure (Giudice and Kao\n2004).\n4 There is a well-described international “delay” in diagnosis of up to ten years\n(Ballard et al. 2006; Denny 2011). Affecting one in ten of menstruators worldwide, rec-\nognition of endo is increasingly being articulated as a political issue. The founders of\nthe Worldwide EndoMarch describe it as a condition “affecting an estimated 200 mil-\nlion women, girls, and transgender individuals around the world and topping the list as\none of the most urgent, yet ignored public health emergencies of our era ” (Worldwide\nEndoMarch 2019).\nFeminist phenomenology has been concerned with many neighboring topics, such\nas lived experience of menstruation and female embodiment (Beauvoir 1949/1988;\nYoung 2005), illness and pain (Fisher 2014; Käll 2012; Käll and Zeiler 2014), and tem-\nporality (Fielding et al. 2011)—but not with endo specifically. Moreover, as Cara\nE. Jones notes, the “absence of endometriosis in feminist disability theorizing is partic-\nularly troubling given the gendered nature of the disease ” (Jones 2016, 555). The present\ntext is a partial answer to her call that feminist disability studies should theorize endo-\nmetriosis and, as I would like to add, feminist phenomenology should do so as well\nsince it is an underexplored phenomenon located precisely at the crossroad of gender\nand illness experience.\nBecause of its connection to feminized pain and menstrual flow on the one hand and\nsocial recognition and responses on the other, endo presents an illuminating case for\nexploring the relation between gender, recognition, and lived time, which may have a\nbroader resonance. In this endeavor, I am guided by the questions: What does a tem-\nporality of endo look like? How does recognition of endo appear as temporal —what are\nits paces and rhythms? How can time be considered a question of gender justice? Below,\nI propose the concept of endo time for understanding the entanglement of gender, rec-\nognition, and lived time in endo experience. I argue that lived time can be studied by\napproaching becoming as a dynamic process or flow of recognition, which creates cer-\ntain temporal patterns in the lifeworld that tend to affect both social relations and self-\nrelations over time.\nEndo time and gender as lived time\nThe relation between time and gender has been extensively discussed throughout the\nhistory of feminist theory. 5 In The second sex , Simone de Beauvoir describes men as\nbeing characterized by transcendence and by the ability to realize their aims and pro-\njects in linear time and history. Women, on the other hand, are confined to immanence,\nrepetition, and cyclical time : “woman clings to routine, time has for her no element of\nnovelty, it is not a creative flow; because she is doomed to repetition, she sees in the\nfuture only a duplication of the past ” (Beauvoir 1949/1988, 610). But, as Fanny\nSöderbäck notes, both cyclical time and linear time make change impossible by either\nrepeating or repressing the past (Söderbäck 2019). Does this mean that Beauvoir got\ntime wrong? Not necessarily. It all depends on what we mean by time. Starting off\n424 Ina Hallström\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nfrom a rereading of Beauvoir and recent discussions of gender and time, I suggest a\nreturn to Edmund Husserl ’s phenomenology of time to arrive at a clearer understanding\nof what we mean when we talk about time and notions such as becoming. After this\nclarification, I move on to the notion of endo time and how I conceptualize the lived\ntime of endo experience using the notion of recognition.\nMegan M. Burke’s( 2018) rereading of Beauvoir provides a fruitful point of departure\nthat reaches beyond the distinction between linear and cyclical time. Burke proposes\nthat Beauvoir ’s The second sex offers a feminist phenomenology of temporality, even\nthough it is seldom described as such\n6—and a useful account of gender as lived\ntime.7 The main argument is that if we pay attention to temporality as a central\ntheme in Beauvoir ’s description of becoming woman, gender and temporality are por-\ntrayed as co-constitutive phenomena. For example, Beauvoir writes: “the woman pro-\ntests against this long wait that is her own life. In one sense, her whole existence is a\nwaiting” (Beauvoir quoted in Burke 2018, 112). Burke suggests that Beauvoir under-\nstands the temporality of waiting , or a passive present, to be an underlying structure\nof women ’s existence and subordination. Expanding on the famous statement, “One\nis not born, but rather becomes, a woman, ” Burke emphasizes that Beauvoir ’s notion\nof becoming refers to a phenomenological understanding where human existence is\nnever simply static or given, but an open ongoing process (Burke 2018, 112).\nBecoming woman does not merely indicate a process of acquisition that unfolds in\ntime but a way of acting and assuming a world —a mode of being that is realized as\nlived time.\nAfter Beauvoir, contemporary thinkers have repeated a similar line of criticism —\nfor us, time is not a creative flow! —a n dh a v es o u g h tt ot h e o r i z et e m p o r a l i t i e sg o i n g\nagainst the grain, such as Denise Riley ’s Time lived, without its flow (2019),\nHeather Love ’s Feeling backwards (2007), Elizabeth Freeman ’sa n dJ a c k\nHalberstam’s discussions of queer temporality (Freeman 2010; Halberstam 2005),\nand Alison Kafer ’s discussion of crip time (2013). This has sometimes been done\nwhile simultaneously expressing hesitation towards concepts such as “flow” and\n“becoming. ” A prime example is Lisa Baraitser ’s influential account in Enduring\ntime (Baraitser 2017), a book devoted to “time’ss u s p e n s i o n” in experiences like wait-\ning, staying, delaying, or enduring. Baraitser argues that in these kinds of experiences\nwhen it feels like nothing is changing and life is neither eventful nor vital,\na philosophy of “becoming”\n7 simply does not help (Baraitser 2017, 13). There is a ten-\nsion, however, which is evident when Baraitser adds the following caveat: “I doubt I\ncould possibly sustain a position in which I too did not agree that all matter is in\nm o t i o n ,t h a ts t a s i si si n c o m p a t i b l ew i t hl i f e(…) [but] I do not believe that anyone\nlives a philosophy of becoming (...). I rarely feel like a teaming flux of vibrant matter,\neven if I can see that this is what I am ” (Baraitser 2017, 13). Instead of becoming,\nBaraitser suggests a focus on “lived experience. ” In effect, she makes a distinction\nbetween two different notions of time which could be called the ontology of time\n(becoming) versus the experience of time (“lived experience ”). I want to\npropose that these two positions are not the incompatibles that Baraitser suggests.\nA return to Husserl ’s analysis of time is instructive and will clarify my own position\nwhich is that notions such as “flow,”“ flux,” and “becoming” actually underpin\na phenomenology of time —but they do not necessarily imply the optimism\nthat Baraitser and others react against. The concept of “lived experience ” (Erlebnis)\nhas become commonplace today but was first extensively studied in the phenomenology\nof Husserl and is not distinct from the ontology of time. Husserl regarded the enigma of\nHypatia 425\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\ntime as the “most difficult” (Husserl 1905/1991, 286), yet “most important” (346) of all\nphenomenological problems. It has been argued that no other philosopher has been as\ndetermined or prolific in making sense of temporality. 8 For Husserl, time belongs\nessentially to experience as such, an insight captured in his recurrent use of the meta-\nphor of a “flow” or “stream” of experience:\nEvery real experience ( …) is necessarily one that endures; and with this duration it\ntakes its place within an endless continuum of durations —a concretely filled con-\ntinuum. It necessarily has a temporal purview concretely filled, and stretching\naway endlessly on all sides. And that at once tells us that it belongs to one endless\n“stream of experience. ” (Husserl 1913/2014, 236)\nThe time Husserl has in mind is a phenomenological lived time constituted by “this\nunitary form of all experiences within a single stream of experience, ” which must be\ncarefully separated from “objective” time (Husserl 1913/2014, 234).\nHusserl ’s terminology shifts over the years, but he continually distinguishes three\nlevels of time which correlate to his unders tanding of levels of experience: (1) objec-\ntive time (the object of experience), (2) subjective time (the experience, Erlebnis ), and\n(3) the absolute flow of subjectivity (the experienc ing, Erleben ) (Husserl 1905/1991 ,\n77).\n9 When temporal objects such as a melody (level 1) enter our awareness, they do\nso as experiences or intentional “acts” such as perception, memory, or anticipation\n(level 2). The perceived “unity” of a melody is the result of the inner time-\nconstitution, which synthesizes individua l tones through retention of passed tones\nand protention of coming tones. The absolute flow (level 3), which Husserl also\ncalls the absolute “time-constituting flow of consciousness ” (1905/1991 ,7 7 ) ,i st h e\ndeepest level of “absolute subjectivity ” which constitutes temporal experiences and\ntheir overall unity in our everyday lives. 10 If we accept Husserl ’sb a s i cn o t i o n ,i t\nmakes sense that time can be perceived as slowing down or even stopping (subjective\ntime), even though we know that neither clock time (objective time) nor our experi-\nencing (absolute flow) stops. The inspiration for the flow metaphor underpinning\nHusserl ’s analysis of time is no mystery; Husserl explicitly states that “[c]onscious-\nness is a constant Heraclitean flux ” (1905/1991 , 360). 11 Heraclitus is widely regarded\nas the historical origin of the philosophy of becoming, sometimes called process phi-\nlosophy, and a central premise is epitomized in his phrase panta rhei , “everything\nflows.”12 The concepts of lived experience, flow, and becoming thus share the\nsame pedigree.\nWhile Baraitser develops her argument as distinct from the philosophy of becoming,\nBeauvoir uses it actively, which is not surprising given her roots in phenomenology. For\nBeauvoir, the notion of becoming is as central as the perceived lack of flow . Husserl ’s\ntime levels make it possible to express these different but coexisting experiences of\ntime. When we perceive subjective time as going slow or stopping, we generally\nknow that objective time does not stop and our inner consciousness of time does not\nfreeze—if it did, we could hardly perceive time as being “slow.” What is lost if we\nfocus only on subjective time as “experiential” is that ongoing change is always part\nof our experience of time. Similarly, the concept of flow characterizes ongoing change,\nbut it does not have to be understood in the optimistic sense which Baraitser and others\nreact against. Even though the term flow is commonly used to signal a smooth experi-\nence, as in “creative flow, ” there is nothing inherently positive in the term as such.\nInstead of choosing between an ontological and an experiential version of time, the\n426 Ina Hallström\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nnotion of lived time involves both and provides a ground for the richness and variety\nfound in temporal experience.\nHow can we analyze this lived time in relation to endo experience? I propose the\nconcept of endo time to capture the lived time of endo involving all these time levels.\nAs a form of lived time, endo time rests on the phenomenological insight that subjec-\ntivity is not merely acquired over objective time. Rather than just being in time, we are\nfundamentally temporal. As Beauvoir and Burke describe, the way we live time is con-\nstitutive of who we become. I understand endo time as constituted by the ways in\nwhich endo is recognized in society and as appearing in the form of certain temporal\npatterns that interviewees live through. I further propose that the impact of this lived\ntime on subjectivity can be studied by approaching becoming as a process of recog-\nnition. Hegel used the concept of recognition ( Anerkennung) to describe how our self-\nrelation is always mediated by others. Drawing on the recognition theory of Axel\nHonneth, I understand recognition as signifying an intersubjective process of becom-\ning constitutive of both subjectivity a nd social relations over time (Hegel 1807/2018;\nHonneth 1995). Honneth ’s theory reconfigures the concept of justice in terms of due\nor withheld recognition. It has a much broader scope than dealing with identity cat-\negories or identity politics and rather deals with the psychosocial and normative pro-\ncesses through which people maintain a practical relation to self and, simultaneously,\na social standing.\nHonneth describes three main modes of recognition —love or emotional support,\nrespect, and esteem —which are required for sustaining a positive self-relation. We\ndevelop self-confidence by being loved and cared for; we acquire self-respect by\nbeing awarded rights and legal status; we gain self-esteem by being appreciated for\nour particular traits and achievements (Honneth 1995, 129). Several interviewees\ndescribe how they lost their sense of self-worth when other people repeatedly denied\ntheir illness experience. Honneth ’s theory suggests that this is due to the fundamental\nentanglement of recognition and individualization. If other people repeatedly doubt\nyour experience of symptoms, this can eventually have a negative effect on your\nown self-relation. Denial of recognition has the power to injure a person ’s self-relation\nprecisely because it was always acquired intersubjectively to begin with (Honneth\n1995, 131).\nThe concept of recognition already presupposes a temporal dimension.\n13 But the\ntemporal patterns of recognition need to be theorized as such in order to describe\nthe lived time of endo experience. Recognition of endo does not occur once and for\nall when receiving a diagnosis but is rather negotiated in the everyday lifeworld through\nintersubjective encounters, such as those between patient and doctor, friends, family\nmembers, or colleagues. During a lifetime, we continuously come to exist through\nour interactions with others. Over time, the flow of recognition, which constitutes\nendo time, is sedimented in the lived body. Starting from the narrated lived time of\ninterviewees, I have identified three main appearances of endo time: waiting time, cycli-\ncal or chronic time , and sedimented time. Taken together, the patterns of endo time har-\nbor the insight that even if you feel like nothing happens, you also realize that unless\ntreated the bodily processes of endo can progress and continue to flow.\nWaiting time\nThe first temporal pattern I have identified concerns a fundamental part of lived endo\ntime: the long waiting time for diagnosis and treatment and the detrimental effect this\nHypatia 427\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nhas on the anticipation of future projects and goals. The longest waiting time for diag-\nnosis was experienced by an interviewee whose symptoms began at menarche (a tem-\nporal term marking the first menstruation) at the age of 12 and who was diagnosed\nwith endo at the age of 40. From onset of symptoms to diagnosis, 28 years passed.\nAnother interviewee received a diagnosis 17 years after symptom onset, and at that\ntime only by accident because of an ectopic pregnancy. Even though the severity of\nsymptoms varies from case to case, and some have eventually found good treatment,\nmost interviewees had repeatedly sought health care for their problems with severe\nmenstrual pain since adolescence. Their efforts were met with doctors, gynecologists,\nor school nurses repeatedly telling them that “menstruation does hurt ” and that\n“pain is normal. ” As one of them describes it, when getting these responses over and\nover again as the years passed by, she learned that it made no sense to seek treatment\nbecause she would not receive any help.\nAnother interviewee who spent several years struggling to find the cause of her pain\ndescribes her experience: “Everything melted together. I had been spending that whole\nfall in bed. ” The excerpt offers a good description of a certain temporal experience\nwhere everything in life seems to melt together because of the lack of events or progress\nthat are usually there to organize time. When she was finally diagnosed, she had lived\nthrough 11 years with endo without knowing what was wrong. After beginning treat-\nment, she describes starting to feel like she was able to get out again and maybe take\nup her studies. Only when symptoms are relieved, it becomes possible to imagine a\nfuture again. When symptoms are too severe, the present has a tendency of occupying\none’s temporal horizon. Even though Beauvoir ’s description of “the temporality of wait-\ning” is clearly developed in another time and place and based on a heterosexual project,\nthere are striking similarities in today ’s endo experiences that make the notion of living\n“a passive present” useful. The result of living in waiting time, such as spending a fall in\nbed unable to pursue one ’s will and desires, is a similar form of confinement as the\none Burke finds in Beauvoir, not only to immanence but to the present (Burke 2018,\n2019).\nIn line with previous research, interviewees describe their pain as overwhelming,\nintense, and sometimes so severe as to cause vomiting or even fainting (Denny 2004;\nHuntington and Gilmour 2005). They describe how they went through years of\ngoing in and out of the emergency room when the pain reached unbearable levels.\nDespite repeated visits to physicians and gynecologists they were sent home, most\noften with non-prescription painkillers. One interviewee told me that the emergency\nstaff got so used to seeing her that all they did was yell: “It’s her again —morphine!”\nWhen asked if the physicians generally knew of the term “endometriosis,” another\ninterviewee responded: “During the first years, they just said: ‘OK, I will have to look\nthat up next time. ’” These experiences entail even more than the passive present\ndescribed by Burke and Beauvoir, it is a painful present, stretched out in time.\nThe lack of progress in the lives of several interviewees is mostly handled as a private\nmatter and does not lead to increased attention regarding their health status. Their pro-\njects and goals for the future —in the form of education or career —\nare not treated by\nothers as serious losses, echoing the Beauvoirian dissonance between women and linear\ntime. One interviewee describes how the delay in diagnosis came to affect her prospects\nfor the future: “Well, [endo affected] all my childhood and youth … The road to\nemployment and the future doesn ’t look very bright. So, it has pretty much ruined\nmy future. ” In the excerpt, the interviewee ’s memories from school spark a realization\nabout what kind of future her past enables. I agree with Alison Kafer ’s argument that it\n428 Ina Hallström\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nis reasonable to avoid the trap of considering chronic illness itself as lacking a sense of\nfuture (Kafer 2013). It is rather a case of interrogating unreasonable waiting time and,\nsimultaneously, what kind of futures society offers for people with conditions such as\nendo. This means to “recognize embodiment as the condition of possibility for futurity ”\n(Söderbäck 2019, 9).\nIn experiences of illness, our dependence on recognition from others is made man-\nifest. Recognition in the form of diagnosis is usually required in order to receive proper\ntreatment. Diagnosis can be understood as a form of recognition that turns a person\ninto “a patient ” and, as such, into a “proper subject ” of institutionalized medicine.\nThe term “patient” itself carries a temporal meaning. The Latin word patiēns means\n“suffering” or “enduring without complaint. ” Being patient, it almost seems, is crucial\nfor becoming a patient. The recognition as patient operates as a gatekeeping process; if\nwe fail to be recognized as patients, the doorway to medical treatment and care remains\nclosed. Without medical recognition people with endo are effectively denied patient-\nhood—and through this, proper subjecthood and agency in terms of future projects\nand goals.\nThe waiting time experienced by interviewees should be understood in the light of an\ninternationally well-documented “delayed diagnosis” of endo of up to ten years (Denny\n2004; 2011; Ballard et al. 2006). Delay in diagnosis of endo has been identified as occur-\nring on both an individual and medical level, as both patients and doctors normalize\nsymptoms, and symptoms are often suppressed through hormones without being\nfully investigated (Ballard et al. 2006). Interviewees describe the long waiting time as\nbeing related to normalization of symptoms, lack of knowledge, and as the result of\nnot being listened to or taken seriously (cf. Grundström et al. 2016).\nThe term “delay” in diagnosis denotes both a specific temporality attached to the\ndiagnostics of endo and an expectation that things should be otherwise.\n14 There is a\nnormative claim here that diagnosis ought to have come earlier. In recent years, diag-\nnostic delay has been increasingly articulated as a pressing political issue.\nInterviewees describe participating in demonstrations and online activism to raise\nawareness of diagnostic delay. The 2017 Stockholm version of the yearly Worldwide\nEndoMarch was centred around the slogan: “8 years is not OK. ”15 This slogan was\nused on banners, t-shirts, and as a hashtag on social media to draw attention to and\nprotest against the long average waiting time for diagnosis in Sweden.\n16 For the third\nyear in a row, the aim of the Swedish EndoMarch was to convince the state of the neces-\nsity of establishing National Guidelines for endometriosis care in order to enable earlier\ndiagnosis and treatment. 17 These initiatives can be understood as a struggle for recog-\nnition (Honneth 1995), where waiting time constitutes the prime target. Endo time, in\nthis sense, is explicitly made into politics.\nI understand the experiences of interviewees as being shaped by a gendered flow of\nrecognition surrounding endo. Feminist research is rife with descriptions of a tendency\nwithin medicine not to take women ’s pain seriously. In their overview, Hoffmann and\nTarzian conclude that while the subjective nature and invisibility of pain offer difficul-\nties for anyone, women are less likely than men to be taken as credible reporters of pain.\nWomen’s pain is viewed as more emotional, and they are expected to put up with the\npain that they experience (Hoffmann and Tarzian 2001). Additionally, in the case of\nendo, the misrecognition of symptoms is directly related to the idea of painful menstru-\nation as a natural part of womanhood, which I will return to in relation to cyclical or\nchronic time. Studies also describe that the delay in diagnosis is greater when the main\nsymptom is pelvic pain compared to infertility, suggesting a greater importance placed\nHypatia 429\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\non reproductive role rather than suffering (Dmowski et al. 1997). The association to\nwomanhood and reproduction tends to feminize and —through the same move —nor-\nmalize endo symptoms.\nThe result of living in waiting time is a form of inhibited intentionality similar to\nwhat Iris Marion Young ( 2005) famously found in relation to feminine body comport-\nment. If Young describes feminine bodily existence as being characterized by constricted\nspace (Young 2005, 33), and Beauvoir and Burke describe the experience of being con-\nfined to the present, I suggest that endo time is lived as a form of constricted time, char-\nacterized by waiting time and the experience of waiting in pain. The ultimate\nconsequence of delayed diagnosis and confinement to the present is that of being\nrobbed of a sense of the future —and with it, the opportunity to determine your own\nlife course and pursue individual aims and goals. Endo time , lived as waiting time,\nmeans exactly this: gender does not simply pre-exist such temporal patterns; endo as\nphenomenon is gendered through these temporal patterns. Waiting for diagnosis and\ntreatment is an essential part of how the misrecognition of endo appears.\nCyclical or chronic time\nThe second temporal pattern I have found concerns a present shaped by the temporality\nof symptoms. Two major themes emerge in the interviews: cyclical symptoms are nor-\nmalized, while chronic symptoms are stigmatized. Both normalization and stigmatiza-\ntion tend to have a negative impact on opportunities for care and support from\nothers and on one ’s self-relation.\nAn interviewee describes a common temporal pattern related to endo pain. Among\nher friends with endo, there are roughly two different types: “Those with pain only dur-\ning menstruation” and “those with constant pain. ” These two types of pain correspond\nto a medical understanding of different durations of pain: First, endo pain in the form\nof dysmenorrhea, that is, painful menstrual cramps of uterine origin, is related to men-\nstruation (De Nardi and Ferrari 2011; Iacovides et al. 2015; Allaire et al. 2017). It has a\ncyclical structure of monthly recurring periods of pain. Secondly, endometriosis is the\nmost frequent gynecological cause of chronic pelvic pain (CPP). Chronic pelvic pain is\ndefined as noncyclical intermittent or constant pain in the lower abdomen or pelvis of\nat least six months in duration, not occurring exclusively with menstruation or inter-\ncourse and not associated with pregnancy (Bajaj et al. 2003; Ahangari 2014; Allaire\net al. 2017). In other words, it is a pain that persists without a clear cause —a pain\nthat has become chronic. The Greek word for time, khronos, is used for one of the fun-\ndamental categorizations of medicine; since antiquity, the term chronic has been used to\ndescribe illnesses that persist for a long time in contrast to conditions that are acute\n(Nutton 2012, 125). We often understand illness in relation to expected temporal\nphases such as falling ill (the onset of symptoms), being ill (stabilization), and becoming\nwell (recovery).\n18 But this image of illness as something that passes fits badly when it\ncomes to a chronic condition such as endo.\nHow do these different temporalities of endo pain appear in the lifeworld? Several\ninterviewees describe how their endo pain first began in connection with menstruation,\nappearing monthly. But in many cases, after a few years, the pain became chronic and\nstarted to appear more or less on a daily basis. Their endo pain could be triggered by\nspecific activities such as penetrative sex ( dyspareunia) or medical examinations at the\ngynecologist and could persist for a long time after those events. As one of them said:\n“Sometimes [it lasts] an hour, sometimes a few weeks. ” The chronicity of endo is thus\n430 Ina Hallström\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nrelated both to the uncurable nature of the condition and to persistent, ongoing, daily\npain. The “cyclic chronicity ” of menstrual pain has been noted in previous research\n(Przybylo and Fahs 2018). However, based on the interviews, I find it important to sep-\narate cyclical pain from chronic pain since these temporalities of pain are often recog-\nnized in different ways.\nIn the interviews, the pain that was temporally linked to the menstrual cycle was usu-\nally normalized and viewed as a natural part of “womanhood,” a notion\nalso encountered by a non-binary interviewee. Doctors repeatedly said that\n“Menstruation does hurt ” and that “There is nothing wrong with you. ” Even though\nmenstrual cramp is defined by its temporality as period pain, it is an outlier to the\nacute/chronic pain dichotomy, both because of its cyclical structure and its status as\na non-pathological form of pain. Endo is regularly reduced to painful menses, resulting\nin a “normalization to the point of invisibility ” (Jones 2016, 559). The misrecognition of\nendo pain resembles a common pattern where medically unexplained pain that does not\ncorrespond to a clear case of injured territory is often understood as being merely psy-\nchological (Kafer 2013; Melzack and Katz 2013). Ela Przybylo and Breanne Fahs\ndescribe how menstrual pain has been “denied the status of real pain” and has been\ncuriously absent even from feminist work on menstruation (Przybylo and Fahs 2018,\n207).\nI am in agreement with Söderbäck, who argues that the relation between time and\ngender (women –cyclicality and men –linearity) still remains unacknowledged and\nneeds to be deconstructed (Söderbäck 2019, 8). I suggest that the very association\nbetween women and cyclicality, already described by Beauvoir, hinders a proper recog-\nnition of the suffering of endo, as described by the interviewees. The cyclical structure\nof pain and its association with female embodiment tends to cover over a pathological\nstate. This normalization of endo, tied to cyclicality, risks orienting patients towards\nendurance and concealment, rather than patienthood and treatment.\nInterviewees describe that even when the existence of pain was not questioned as\nsuch, their reaction to pain often was. If the pain you experience as severe is deemed\nby others as normal, it is easy to get the sense that your complaints must be due to\nimagination or exaggeration. The experience of perceiving symptoms that are normal-\nized and not validated by others led several interviewees to form an image of themselves\nas being “weaker” than others or “lazy.” They felt ashamed of being so troubled by their\nsymptoms and for failing to control them. Why did everybody else seem to manage\nmenstrual pain so much better than they did? The repeated experiences of not being\ntaken seriously by doctors led one interviewee to periods of depression and to con-\nstantly question herself and her own abilities. It got to the point where she was thinking:\n“I must be crazy. There is something about me that makes me unfit to handle things like\nother people.” In contrast, finally being recognized through the frame of diagnosis, was\nin several cases deemed important for their self-relation: “For me, getting [the diagno-\nsis] in writing has been incredibly important for my self-esteem, so you won ’th a v et o\ndoubt yourself. ”\nIf the pain related to menstruation and cyclicality was often normalized, chronic or\nunpredictable pain was often unintelligible for others and, as such, stigmatized. During\nadolescence, the existence of chronic endo pain was generally not known by interview-\nees or by people in their surroundings, and perhaps most troubling, neither by the doc-\ntors they encountered. One interviewee describes how it is also “scarier” to tell people\nabout conditions that are chronic:\nHypatia 431\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nBecause you know that people have some patience, but it ’s very limited. If you have\nhurt yourself or you have a temporary condition ( …) you heal when you get your\nmedication. It is something completely different when you know that this problem\nwill go on forever. According to my experience, people only think of you as being\ndifficult or whining if you describe how you feel, when you ’re not hunky-dory.\nIn the quote, the interviewee describes how “people think of you as being difficult or\nwhining” and links this experience specifically to having pain that does not go away.\nChronic endo pain risks being seen as an undesirable character trait, a fact that can\nlead to self-silencing (Cole et al. 2021). The quote also illustrates how chronicity itself\npresents difficulties in relation to other ’s responses to pain. This phenomenon can be\nunderstood as encountering certain frames of recognition (Butler 2009), which shape\nhow different temporalities of pain are perceived. These frames are related to gender,\nas the normalization of cyclical pain illustrates. They are also related to what Robert\nMcRuer (2006) calls compulsory able-bodiedness, a cultural understanding that frames\ndisability in terms of lack or imperfection. Similar to other chronic illnesses, endo can\nbe a major cause of disability (Wendell 2001; Jones 2016).\nSymptoms have different temporalities, and symptoms also affect how we can per-\nform temporally. In my very first interview, the concrete temporality of endo pain\ncame up when I asked about when pain occurs:\nIt just appears. I can have it in the morning or I can wake up and not feel pain at\nall and then it just appears, boom! I don ’t have to do anything special … When I\nwalk I can be in pain, when I sit I can be in pain, when I prepare food I can be in\npain, when doing the laundry I can be in pain. I can be in pain at any time.\nEndo pain is here described as a fundamental part of everyday life, but the pain is also\ndescribed as an event , happening unexpectedly (cf. Dastur 2000; Oksala 2004). The\n“event of pain ” does not comply with planned schedules. Pain is often described in\nthe interviews as getting in the way of your plans and social activities, forcing you to\nmake cancellations at the last minute —which tends to render you socially “difficult.”\nEndo clearly disrupts the powerful desire to maintain “[t]he self-possession and control\nthat the modernist ideal of embodiment demands ” (Shildrick 2009, 22). For the indi-\nvidual, acute pain may be experienced as being out of the ordinary, but it usually\ndoes not affect your self-relation or identity in any major way. Chronic pain, on the\nother hand, has the tendency to render you different, or “crip”; it is an Othering\nexperience.\nThe fields of crip theory and queer theory have both highlighted the ways in which\ntemporality plays an important role in the construction of normality and socially mean-\ningful subjects (Halberstam 2005; Freeman 2010). Elizabeth Freeman uses the concept\nof chrononormativity to describe “the use of time to organize individual human bodies\ntoward maximum productivity ” (Freeman 2010, 3). Similarly, Alison Kafer uses the\nconcept of crip time\nto address the role of temporality in the construction of able-\nbodiedness (Kafer 2013).\nFor several interviewees, endo had an impact on education, not only because of\nabsence but also because pain affected their ability to concentrate: “Some days are\nfine but other days I don ’t have a clue about what [the teacher] is talking about. But\npresence is mandatory, so all I can do is sit there and suffer. ” Educational settings\ntend to be run under strict time constraints which involve everything from demands\n432 Ina Hallström\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nto arrive on time , absorb information at a certain speed, and perform spontaneously at\nany given moment (Price 2011, 62). When asked how endo affected education, an inter-\nviewee replied: “Well, it took me seven years to finish high school. ”19 Two interviewees\nwere not able to graduate from high school due to their health, exemplifying how child-\nhood disability can have a negative effect on social mobility (Chatzitheochari et al.,\n2022).\nA failure to conform to chrononormativity is bound up with the risk of what could\nbe called temporal stigma. Erving Goffman defined stigma as an attribute that “consti-\ntutes a special discrepancy between virtual and actual social identity ” and which clas-\nsifies the individual as being of a less desirable kind (Goffman 1963, 3). Stigma is\noften associated with visual marks, but the aspect that threatens to mark the interview-\nees as different is their deviation from temporal norms. Just like other sets of norms,\nchrononormativity can make you “incongruous with our stereotype of what a given\ntype of individual should be ” (Goffman 1963, 3). The invisibility of a chronic illness\nsuch as endo presents an opportunity to avoid stigma by not disclosing your condition,\nfor example, in relation to potential employers. As one interviewee describes it:\nI want to pursue an academic career, and I am afraid of telling someone, who\nmight become my future employer that I have so many issues. I have worked\nhere as a research assistant, and I would like them to offer me a position again.\nIt might not be a good thing if they know that I experience the level of difficulties\nthat I do.\nSeveral interviewees describe how they felt they had to work despite severe pain in\norder to avoid stigma: “You learn to bite the bullet. Half the day, you do nothing,\nand the other half you have to be twice as productive so that no one will notice. ”\nTime has to be bent when your condition makes it impossible to fit in according to\nchrononormative paces of work. Another option is to tamper with the body itself:\nsome interviewees used contraceptive pills to plan when menstruation occurs. They\nwould “schedule” their menstruation to weekends to keep it from interfering with\nwork. They also learned to take painkillers in time so that their pain would not\nreach unmanageable levels. Acts like these are all part of an everyday time manage-\nment, that is needed to keep it “under control. ” Even though most people engage\nin some kind of management of body and self, and modern medicine offers many\nt o o l st od os o ,\n20 a chronic illness can make it much more difficult to adhere to tem-\nporal norms. Regulation of time was often an aspect that made it difficult to work or\nkeep a job altogether. In turn, temporal fl exibility or the opportunity to work part-\ntime was a factor that enabled work (cf. Wendell 1996,2 0 ) .\nSome interviewees describe how endo has “ruined” their career or forced them to\ntake jobs below their level of competence. They also described how these difficulties\nin adhering to work life demands had a negative impact on their self-relation. One\ninterviewee describes how she even became suicidal because she felt “like a total failure”:\n“I am almost 30 and haven ’t achieved anything in life. I have nothing that I can show …\nlike ‘I have achieved this ’ or ‘I am good at this. ’” When asked why she felt this way, she\ndescribes that “it is because of how I have been treated by others, and the responses you\nget.” Another interviewee describes how these negative thoughts got “stuck in her head ”\nand also made her doubt that she could ever manage to take up her studies again, which\nwas her dream. This kind of negative self-image and periods of depression are very\ncommon in the interviews and feelings of self-doubt are often linked to experiences\nHypatia 433\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nof encountering disbelief and denial of symptoms. As Honneth argues, our sense of self-\nesteem is dependent on being recognized as a unique individual who has something\nvaluable and productive to offer society (Honneth 1995; Fraser and Honneth 2003).\nSince Sweden is a country firmly based on a dual-breadwinner model, all individuals\nare expected to work to make a living irrespective of gender, and social entitlements\nare based on individual labor market participation (Lewis 1992). If you fail to be rec-\nognized as a productive citizen, it can be difficult to uphold a sense of self-esteem,\nwhich is often expressed in the interviews.\nThe frames of recognition related to different temporalities of pain present a double-\nedged dilemma: cyclical pain is regarded as too normal to be understood as patholog-\nical, while chronic pain is too abnormal to be intelligible at all in relation to chrononor-\nmative lifecourses.\nSedimented time\nThe final pattern I have identified concer ns the relation between passed time and\nthe body ’s concrete materiality, understood from two different angles. First,\nthrough the relation between heavy menstrual flow, cultural rhythms, and embodied\nhabits. Second, through sedimentation of the flows of menstruation, recognition,\nand time.\nThe phenomenological concept of sedimentation goes back to Husserl, and both\nBeauvoir and Maurice Merleau-Ponty make use of the notion to discuss how repeated\nacts, goals, values, and gender stereotypes are sedimented into the lived body (Beauvoir\n1949/1988; Merleau-Ponty 1945/2012). The lived body is an intertwining of subject and\nobject—“from one side a thing among things and otherwise what sees them and touches\nthem” (Merleau-Ponty 1968, 137)—and our way of living time is embodied in a myriad\nof ways. Drew Leder describes how a stressful relationship or job situation might lead to\na clenched fist or a sore neck and even to a constriction of the arteries. When we hurry\nand struggle to compress time, visceral functions such as breathing and heartbeat\nbecome compressed and accelerated too. When we are bored by a slow conversation,\nwe might tap our foot or clench the chair —actions that, in turn, might lead to a clench-\ning of blood vessels. The body does not simply react to prior mental intentions; it\nengages in them in an ongoing “symphony of virtual action ” (Leder 1998, 28).\nWe perceive temporal patterns in the embodied habits of others, which we can be in\nor out of sync with. Habits have a double nature: they are traits of individuals, but at the\nsame time social. They are derived from “cultural rhythms ” and founded in collective\nactions. They arise through repetition of everyday activities and social routines —and\neventually become characteristics of who we are (Charmaz 2002). Among such cultural\nrhythms, some are mundane indeed: for example, the frequency of bathroom visits.\nWhile being one of the most private situations of all, in certain settings, such frequen-\ncies become a public affair. As an interviewee describes, during school, she did not want\nto go to the bathroom too often to manage her menstrual flow:\nI couldn’t go from class every other hour. I cared so much about school and like …\nno one in class went out so often. No one was bleeding like I was. So [the tampons]\nstayed in much longer. And I had heard horror stories about someone who had a\ntampon in for too long and had to amputate her leg! So, I was constantly having\nthis fear of falling ill, but I wouldn ’t dare change too often out of fear of being\njudged or that someone would discover what I was doing.\n434 Ina Hallström\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nThe problem of menorrhagia, or heavy bleeding, is a common theme in the interviews\nand concerns a management of both time and identity. In the quote above, the fear of\nbeing judged as different is mixed with a fear of not responding to the bodily processes\nof menstrual flow in time. The feeling of difference is related to another version of chro-\nnonormativity: cultural rhythms regarding the “normal” frequency of bathroom visits.\nIn breaking the rhythm, she would break a temporal norm and risk temporal\nstigma. Which temporality should she respond to, the cultural rythm or the temporality\nof the body?\nThe experience of heavy flow is a major cause of anxiety, and situations like these are\ncommon in the interviews. When growing up, many were not aware of the fact that\nheavy bleeding could be a sign of pathology, it was just treated as something they\nhad to deal with themselves. Interviewees describe that this understanding was many\ntimes repeated by doctors if they eventually did seek medical care. After six months\nof heavy bleeding and painful periods, the interviewee quoted above finally decided\nthat something must be wrong and her mother took her to see a gynecologist. It was\na male gynecologist telling her that: “It is common to experience pain. Menstruation\ndoes hurt. There is nothing dangerous with heavy bleeding. ” Her experience of heavy\nbleeding as pathological was simply dismissed.\nManagement of heavy flow is a complex phenomenon involving several sets of gen-\ndered norms. In addition to rhythms in general, it is related to menstrual stigma and\nconcealment (Douglas 2002; Seear 2009; Johnston-Robledo and Chrisler 2013) and\nto the devaluation of female bodies traditionally understood as “leaky” and as lacking\nsecure boundaries (Grosz 1994; Shildrick 1997). Some have noted how menstrual\nstigma has the peculiar feature of both reflecting and contributing to women ’sl o w e r\nsocial status (Beauvoir 1949/1988; Johnston-Robledo and Chrisler 2013). A central pre-\nmise of Honneth ’s recognition theory is that only subjects who learn to “appear in pub-\nlic without shame ” are truly sustained to flourish socially (Honneth 2004, 355). Like\nshame in general, menstrual stigma is more than an individual psychological state —it\nis a gendered cultural practice (cf. Ahmed 2004, 9).\nWhile all menstruators tend to menstrual flow, the situations described by interview-\nees consist of managing the symptoms of an illness even though it is not always recog-\nnized as such. The fear of visible blood stains led some interviewees to use “double\nprotection” in the form of tampons and pads, in order to stay “safe.” Art historian\nJenni Sorkin argues that stains elicit shame because of their tendency to mark the wear-\ners themselves as being dirty, messy, or poor. Stains also have a temporal dimension:\nthey mark the event of a bodily transgression and thus the passage of time by leaving\na trace—tainting the now with the then (Sorkin 2000). Interviewees describe how the\nmanagement of heavy flow is learned early on, often accompanied by strategies that\ninvolve avoiding “risky” situations altogether, such as sleepovers at friends or school\ngymnastics. This, too, threatens to mark them off as different in relation to peers.\nOnce again, the interviewees ’ situation presents a dilemma: in their effort to avoid stain-\ning, they are liable to another stigma by breaking collective habits. Both stains and bro-\nken habits mark forms of disorder. If dirt is classically defined as matter “out of place ”\n(Douglas 2002), a broken habit can be understood as action “out of time. ” It is often\nprecisely at the moment of transgression that the existence of norms becomes clear.\nThis does not mean that interviewees become conscious of temporal norms as such,\nbut they express perceiving themselves as being norm-breakers in the negative sense\nof inducing shame and stigma.\nHypatia 435\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nIn addition to cultural rhythms and embodied habits, how is endo time sedimented if\nwe take the concrete materiality of the body into account? The phenomenological term\nsedimentation is especially fitting in relation to the materiality of endo. In general, the\nterm sedimentation refers to the process where matter sinks and settles at the bottom of\nrivers or other bodies of water. Menstrual flow, on the other hand, is the process where\nthe body sheds the lining of the uterus (the endometrium) along with blood once a\nmonth. The “Sampson Theory, ” which has dominated the medical understanding of\nendometriosis since it was first put forward in 1927, holds that blood containing endo-\nmetrial tissue flows back into the body as “retrograde menstruation.” Even though the\npathogenesis of endo is still unclear, and retrograde menstruation is a wider phenom-\nenon, the defining feature is endometrial tissue settled outside of the uterus. This\nectopic tissue responds to the cyclical changes of estrogen and grows and bleeds with\neach menstrual cycle —causing lesions, scar tissue, inflammation, and pain (Kitawaki\net al. 2002; Seear 2014,9 –10; Burney and Giudice 2019). Hormone therapy to suppress\nthe process of menstrual flow is, therefore, a first-choice treatment, aside from painkill-\ners or surgery.\nBecause endometrial lesions can continue to build up and grow and spread to other\norgans, time to diagnosis is vital. Delay in diagnosis increases the risk of developing\nboth chronic pain and infertility (Socialstyrelsen 2018, 13). The time spent waiting\nfor diagnosis and waiting to be taken seriously means time for the tissue to grow.\nSeveral interviewees express believing that their condition may have gotten worse\nbecause of the long waiting time for diagnosis and treatment. As one interviewee\ndescribes:\nThey noticed that it had gone so far, it had even reached the abdomen. When you\ngo untreated, I mean for a really-really long time, it can grow into the abdomen\nand into other organs, it can grow into your intestines and everywhere … And\nthis is because you have not been able to get help. You might not know what endo-\nmetriosis is. You just walk around with this unexplained pain … Or, you do know\nwhat endometriosis is, but you try to find doctors that will take you seriously, but\nthey don’t. In the end, it can go this far that the endometriosis has grown like it did\nin me.\nAnother interviewee has a similar reaction: “I will be in pain every day for the rest of my\nlife because I was not helped in time. ” Interviewees describe the lack of recognition of\nsymptoms over time as a causal factor behind an aggravated condition. The experience\nof interviewees corresponds to the temporality of chronic pain, which does not simply\nimply a temporal extension of acute pain but involves distinct mechanisms. Due to the\nbody’s functional and structural plasticity, chronic pain involves remodeling and reor-\nganization of synapses, cells, and circuits (Kuner and Flor 2016). Chronic endo pain is\nincreasingly understood as the manifestation of central sensitization, a complex phe-\nnomenon where nerves become wound-up and exaggerate pain responses (Bajaj et al.\n2003; Allaire et al. 2017)—like a memory of pain that gets stuck on repeat. Because\nof this effect, the danger of applying a “conservative wait-it-out approach ” has been\nobserved more generally in relation to chronic pain (cf. Heshusius 2009,9 9 –100).\nWhen acute pain is not recognized and treated in time, as several interviewees express,\nit runs the risk of becoming chronic. Becoming chronic is thus a process of habituation\nand sedimentation involving recognition, processes of the body, and the flow of time.\n436 Ina Hallström\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nOf all forms of personal degradation, Honneth identifies violations of physical integ-\nrity as representing the most harmful because these acts carry with them the potential to\nhave the most destructive impact on a person ’s self-confidence (Honneth 1995, 132 –\n33). What makes experiences of physical injury so special, according to Honneth, is\n“not the purely physical pain but rather the combination of this pain with the feeling\nof being defencelessly at the mercy of another subject ” with the ultimate consequence\nof losing trust in both oneself and the world (Honneth 1995, 132). Even though endo\npain is not intentionally brought upon the sufferer, the lack of recognition and treat-\nment can be experienced as being deprived of the opportunity to freely control one ’s\nown body. The doctor –patient relationship is, by its nature, asymmetrical in terms of\npower but it requires a certain level of mutual recognition to function well. When doc-\ntors dismiss their patients, this involves the risk that the patients, correspondingly and\nover time, lose trust in them. The loss of trust experienced by interviewees illustrates the\nfragility of relations of recognition and, simultaneously, the kind of perceived injustice\nthat can motivate calls for change on both an individual and collective level.\nUnsurprisingly, several interviewees describe losing trust in doctors or the\nhealthcare system more generally. Medical research has emphasized the profound\nimportance of trust for effective medical encounters, including patients ’ willingness\nto seek care, reveal sensitive information, and adhere to treatments (Hall et al. 2001;\nSmith 2017). Trust is regarded as a core, defining characteristic of a meaningful\ndoctor –patient relationship, in the same way that love or friendship defines the\nquality of primary relations. Trust can be defined as an affective attitude with\nboth a history and an outlook, a “forward-looking evaluation of an ongoing rela-\ntionship ” (Hall et al. 2001, 616). When patients experience betrayal in medical rela-\ntionships, such as feeling that their physic ian has acted counter to their best interest\nor taken advantage of their vulnerability, their reactions have been described as\ncloser to moral outrage and indignation than mere disappointment in results\n(Smith 2017). Such moral outrage or indignation is precisely what Honneth\n(1995) regards as the “moral grammar ” of social conflict and as the “engine ” behind\nstruggles for recognition.\nConcluding remarks\nThrough the concept of endo time, I have explored how gender works as a specific\norchestration of time in relation to endo. Endo time can be thought of as a pace or\na melody that the body comes to animate. Living in endo time is perceived by inter-\nviewees as a form of gendered injustice, and they describe both strategies for coping\nin everyday life and mobilizing for change, such as demanding National Guidelines\nfor better and earlier recognition, diagnosis, and treatment. I read such initiatives as\nprotesting what amounts to a waste of time and potential —a waste of their own finite\nlifetime.\nI have described three temporal patterns which illustrate how endo time appears. I\nhave described how waiting time is lived as a form of constricted time, characterized\nby the experience of waiting in pain and ultimately being robbed of a sense of the future\nand the opportunity to pursue individual life projects and goals. I have described a pre-\nsent shaped by the temporality of symptoms in the form of cyclical or chronic time .\nWhen symptoms are cyclical, they are often normalized as a natural part of woman-\nhood. A failure to cope is related to feeling “crazy” or “weak”. When symptoms are\nchronic, they are more often stigmatized. A failure to conform to chrononormative\nHypatia 437\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nideals of productivity is related to feeling “like a total failure ” and to a loss of self-\nesteem. Finally, I have described how endo time is lived as sedimented time in relation\nto the concrete materiality of the body. The problem of heavy bleeding involves a man-\nagement of both time and identity in order to avoid temporal stigma. Interviewees face\ndilemmas where the temporality of bodily processes clashes with cultural rhythms of\nnormalcy. The time spent waiting for diagnosis means time for endometrial tissue to\ngrow, increasing the risk of developing chronic pain and infertility. The experience of\nbeing dismissed by doctors is also sedimented in the form of a loss of trust in doctors\nand the healthcare system.\nThrough the concept of endo time, I have picked up the call from Jones to “politicize\nendo pain”. I have added to this endeavor by specifically addressing how experiences of\nendo and processes of recognition can be conceptualized in temporal terms. The endo\ntime inhabited by interviewees is the result of social recognition entangled with pro-\ncesses of the body, such as menstrual flow. There is nothing merely biological about\nthese experiences, and it cannot be understood as merely social. The way tissue\ngrows, the way the body bleeds, and the way pain appears will all be qualities of the\nrecognized body. I am in full agreement with Jones ’ conclusion that those with endo\nneed social recognition and legitimization, in addition to support and access to health-\ncare: “It is about how we spend, divide, and use resources, including time” (Jones 2016,\n566, emphasis added). Even though all pains and illnesses will have their own cases of\ntroubled waters, the concept of endo time might strike a chord for other lived realities as\nwell.\nI have argued for a phenomenological understanding of lived time, which does not\ninsert a separation between becoming and lived experience. Such an understanding gets\nrid of the assumption that “flow” and “becoming” implies optimism. This is important\nbecause it makes it possible to describe the negative consequences of inaction in the face\nof an ongoing, progressing illness such as endo. As a form of lived time, endo time should\nnot be understood as external to the body; it flows through it and is sedimented over time.\nEndo time is meant to capture the complexity involved in experiences of time —and the\nways in which different levels of time are coexisting and interrelated. Waiting would not\nbe experienced as waiting if we did not simultaneously experience time as something that\ndoes not pause while we wait.\nAs Husserl explains, there are technical difficulties involved in describing the flow of\ntime:\n[A]n experience (Erlebnis) is not, and never is, perceived in its completeness, it\ncannot be grasped adequately in its full unity. It is essentially something that\nflows, and starting from the present moment we can swim after it, our gaze reflec-\ntively turned towards it, whilst the stretches we leave in our wake are lost to our\nperception. (Husserl 1913/2014, 139)\nConsciously turning our gaze towards time and trying to grasp the temporal involves an\noperation that risks transforming it into a foreign state, of solidifying that which flows.\nPerhaps it is only in retrospect that we can hope to describe the workings of time. While\nbeing aware of these difficulties, the concept of endo time offers a way to extract prom-\ninent temporal patterns from the stream of endo experience as described by the inter-\nviewees. These experiences are related to clock time, such as the years of delayed\ndiagnosis. They are related to waiting, temporal norms, and temporal stigma. But rather\n438 Ina Hallström\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\nthan understanding experiences as mere moments in objective time, I understand them\nas lived, as sedimented, and as constitutive of who and what we become.\nAcknowledgments. I would like to thank Axel Honneth for his generous feedback on an earlier version of\nthis article. I am also grateful for valuable comments from colleagues and members of the colloquiums in\nPhilosophy and Gender Studies at Stockholm University, Södertörn University, and Columbia University,\nwhere I have presented drafts of the text. Finally, I wish to thank the anonymous referees for their insightful\ncomments and suggestions along the way.\nNotes\n1 My use of the term endo instead of endometriosis is part of an endeavor to treat this condition as more\nthan a medical fact and instead as a phenomenon that appears in the lifeworld of interviewees. In using the\nterm “endo,” I also attend to the language used by many people with endo themselves as well as activist\norganizations, self-help groups, cultural critics, and academics. Cara E. Jones uses “endo” and “endo exis-\ntence” with reference to cultural critics and activist organizations who argue that: “Just as multiple sclerosis\nwas shortened to MS decades ago … [e]ducating about the disease and making it a little more manageable\nand a little less formidable starts with the public being able to pronounce its name ” (Ballweg 2004, xxiii,\nquoted in Jones 2016, 567). Ella Shohat uses “endo discourse ( …) to encompass a whole textual body pro-\nduced around endometriosis that refers both to hegemonic medical and alternative discourses. Although\nphysicians use the official name ‘endometriosis,’ it is at times referred to as ‘endo’ in self-help groups ”\n(Shohat 1992).\n2 I am quoting the government of Sweden at the time of the interviews (Regeringskansliet 2015).\n3 The semi-structured, in-depth interviews were all conducted by the author in 2018.\n4 The identification of endometriosis is commonly attributed to Carl Rokitansky in 1860s Vienna, but\ndue to discussions regarding the definition of the “essence ” of endometriosis, this has been debated,\nand a dissertation by Daniel Christianus Schrön presented at the University of Jena in 1690 is now\nsometimes cited as the first descri ption of endometriosis. For a longer discussion, see Giudice et al.\n(2012, 3ff.).\n5 See, e.g., Beauvoir ( 1949/1988), Felski ( 2002, 2000), and Kristeva ( 1995).\n6 As Burke notes, even texts focusing specifically on the topic, such as the anthology Time in feminist phe-\nnomenology (Fielding et al. 2011), “do not consider Beauvoir as part of the classical or feminist phenom-\nenological considerations of temporality ” (Burke 2018, 112).\n7 In connecting endo time with the notion of gender as lived time, I am mainly referring to how endo is\ngenerally recognized as a “\nwomen’s disease” and “coded feminine” (Jones 2016, 558). That does not mean\nthat endo only affects women; endo affects transmen, one of my interviewees is non-binary, and in rare\ncases, endo has been found in cis-men (Rei et al. 2018). Endo time is meant to capture how endo as phe-\nnomenon is recognized and feminized —at times, irrespective of the individual ’s gender identity. I make use\nof gender-neutral terms such as menstruator when this is most accurate, but also terms such as women to\nmark how endo is feminized or when referring to the term used in previous research.\n8 Husserl’s writing on time spans three decades and several volumes, comprising more than a thousand\npages devoted to the topic. Even though Husserl ’s terminology shifts over the years, basic ideas prevail,\nsuch as his idea of three levels of constitution involved in time-consciousness, and particularly “the absolute\ntime-constituting flow of consciousness ” at the deepest level (Brough 2010, 22).\n9 A few years later, in Hua XXIII of 1911 –12, the levels are expressed with different wording and in reverse\norder: the absolute time-constituting flow of consciousness refers to “the experiencing”, subjective time to\n“the experience”, and objective time to “the intentional object of the experience ” (Brough 2010, 23).\n10 These levels should not be regarded as mere abstractions. As Husserl explains, we have an awareness of\nthem as part of our lived experience. In fact, we have a double awareness of the absolute flow, which means\nthat our attention can be directed either at phases of the flow ( Querintentionalität)o r at the flow itself as\nflowing ( Längsintentionalität) (Husserl 1905/1991,8 4 –85).\n11 The flow metaphor is not used exclusively in relation to the deepest level of subjectivity. In the\nC-manuscripts, Hua XXXIV of 1930, Husserl refers to three “senses of flowing ” and to objective time as\n“the world-time in which everything real ‘flows’—the flow of time, becoming, etc ” (Husserl quoted in\nBrough 2010,2 4 –25).\nHypatia 439\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press\n\n12 See Seibt’s entry on “Process philosophy” in Stanford Encyclopedia of Philosophy. Viewing the history of\nphilosophy from this perspective means that thinkers such as Heraclitus, Hegel, Heidegger, Bergson,\nNietzsche, Deleuze, and pragmatists such as George Herbert Mead —who are often understood as belonging\nto different schools of thought —are part of a strain specifically addressing processes of becoming and\nchange (Seibt 2012). Honneth ’s recognition theory takes inspiration from Hegel and Mead who are both\npart of this strain.\n13 Honneth describes how Hegel came to adopt a processual understanding of Spirit as characterized by\nthe “permanent repetition ” of “externalization and return ” (Honneth 1995, 31). Similar to the phenom-\nenological account above, Hegel does not understand time as externality. In Encyclopaedia of the philo-\nsophical sciences, he writes: “everything does not appear and pass in time; time itself is this becoming,\narising and passing away ” (Hegel 1817/2015, 230). He ma kes an explicit reference to Heraclitus when\nstating that all flows and all is a becoming . When Beauvoir uses the notion of becoming, it is based\non this philosophical provenience. For an overview of Hegel ’s influence on Beauvoir, see Hutchings\n(2003, 2017).\n14 Delayed diagnosis is generally defined as “Non-optimal interval of time between onset of symptoms,\nidentification, and initiation of treatment ” (NLM 2010).\n15 In Swedish: “8 år är inte OK. ”\n16 Globally, the time to diagnosis is estimated to five to be ten years. In the US, the time to diagnosis has\ngone from 12 years in 1995, 9 years in 1998, to 4.4 years in 2017 (Soliman et al. 2017). A recent study in\nSweden shows that the average time to diagnosis is now five to seven years (SBU 2018).\n17 In Sweden, the central government establishes national principles and guidelines in order to assure\nlargely tax-funded equal access to good-quality healthcare services for the entire population (Swedish\nInstitute 2015). While the guidelines provided by the National Board of Health and Welfare do not uphold\na legal status, they are meant to support decision-makers such as politicians and agency chief executives,\nhelping them to allocate resources in accordance with the needs of the population so as to maximize pos-\nsible benefit.\n18 It has been argued that by identifying different temporal phases of illness, it is possible to enhance the\nability of intensive care units to provide the most appropriate therapies that facilitate a patient ’s recovery.\nThis framework is called using a “phases-of-illness paradigm\n” to align patients with specific goals and treat-\nments (Pamplin et al. 2011).\n19 In Sweden, “Gymnasiet” normally consists of three years.\n20 Compare how Foucault’s notion of governmentality has been used by several scholars to make sense of\nthe tension between self-discipline and empowerment that modern medicine and technology make possible\n(Petrakaki et al. 2018). 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The rejected body: Feminist philosophical reflections on disability . New York:\nRoutledge.\nWendell, Susan. 2001. Unhealthy disabled: Treating chronic illnesses as disabilities. Hypatia 16 (4): 17 –33.\nWorldwide EndoMarch. 2019. About us. https:/ /www.endomarchnews.org/about-us-i.\nYoung, Iris Marion. 2005. On female body experience: “Throwing like a girl ” and other essays . Oxford:\nOxford University Press.\nIna Hallström is a PhD candidate in Gender Studies at Stockholm University. Her work engages with\nfeminist philosophy, recognition theory, phenomenology, and crip perspectives on health and illness.\nCite this article: Hallström I (2024). Endo Time: Endometriosis and the Flow of Recognition. Hypatia 39,\n423–443. https://doi.org/10.1017/hyp.2023.116\nHypatia 443\nhttps://doi.org/10.1017/hyp.2023.116 Published online by Cambridge University Press","source_license":"CC0","license_restricted":false}