“Suck it up and push through!” Exploring the experiences of women with endometriosis at work.

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Danielle Howe, Michelle O'Shea, Sarah Duffy, Mike Armour This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5480104/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Endometriosis affects an estimated 6–14% of women and people presumed female at birth, significantly impacting quality of life and workplace productivity. While research highlights that endometriosis pain and symptom management hinders careers and productivity; our current understanding of how workplace practices and intersecting discourses and norms shape careers (for people with endometriosis) remains limited. The present research aims to understand how people with endometriosis experience and make sense of their experiences managing endometriosis symptoms and paid work. First, we asked how do women with endometriosis interpret the way their career is shaped by symptom management at work? Secondly, how can this knowledge inform workplace policies and practices which support endometriosis symptom management in the workplace? Through six online focus groups (September-November 2022) with 45 cisgender women either currently or recently employed in Australia and guided by a post-structural feminist lens, we uncovered two themes in women’s experiences. We labelled the first “ If I wanted to get somewhere…I had to suck it up ” and consider how and why employees conceal their symptoms; and second “If I can be supported, I can work: shifting responsibility from employee to workplace” demonstrating how workplace accommodations and education are impactful. Our recommendations include the development and adoption of workplace guidelines that support physical symptom management together with educational initiatives that challenge stigma, masculinist and ableist norms that support improved workplace productivity, personal wellbeing and career outcomes. Endometriosis menstruation menopause policy work workplace productivity Introduction Endometriosis is estimated to affect 6–14% of women and those presumed female at birth (PFAB) worldwide (AIHW, 2023 ; Eisenberg et al., 2018 ; Rowlands et al., 2021 ); with one in seven Australian women and those PFAB having an endometriosis diagnosis by ages 44–49 (AIHW, 2023 ). Endometriosis symptoms are multiple including severe period pain (dysmenorrhea), non-cyclical pelvic pain, and fatigue being the most common (Armour et al., 2020 ) with current estimates suggesting that endometriosis prevalence may be greater than breast cancer, prostate cancer, and diabetes (Simoens et al., 2014 ; Treloar et al., 1999 ). Endometriosis symptoms can profoundly affect people’s quality of life, workplace attendance and productivity (De Graaff et al., 2013 ; Fourquet et al., 2010 ; Nnoaham et al., 2011 ). In Australia, endometriosis cost of illness burden is 9.7B AUD per year, with most of the cost (84%) associated with lost productivity (Armour, Lawson, et al., 2019 ). Similarly, prior studies across the U.S., UK, and EU-member states confirm that productivity costs are the most significant contributor to overall costs for people with endometriosis (Armour, Lawson, et al., 2019 ). Previous research exploring the impacts of endometriosis and work has found that pain severity was the biggest factor in lost productivity; revealing how endometriosis symptom severity is clearly linked to employee presenteeism, absenteeism, and related productivity losses (De Graaff et al., 2013 ; Hansen et al., 2013 ; Nnoaham et al., 2011 ; Soliman et al., 2017 ). Additionally, reductions in pain are reportedly strongly correlated with reductions in presenteeism and absenteeism (Armour, Parry, et al., 2019 ). Accordingly, if pain and symptoms are better managed, it is likely that the impact of lost productivity could be significantly reduced. Despite these impacts, the absence of non-medical supports to enable endometriosis pain management at work remains limited (Howe et al., 2023 ). Workplace guidelines and policy can play an influential role (in addressing this gap) and enhancing work outcomes for people with endometriosis. Previous research suggests relatively simple accommodations (i.e. flexible-time management, working from home, rest periods, physical aids and supportive managers) can enable employees to manage their endometriosis symptoms more effectively. Relatedly, enhanced supports were significantly associated with a reduced number of sick days and perceptions of improved productivity (Armour et al., 2022 ; Howe et al., 2024 ). In Australia (the geographical and legislative context of this study) existing frameworks take the form of endometriosis national guidelines tied to Workplace Health and Safety (WHS) legislation (Safe-Work Australia 2019). While drawing attention to endometriosis prevalence and its effects, the Safe-Work guidelines have proved largely ineffective. Recent research from the authorship team demonstrates how despite the introduction of the Safe-Work guidelines in 2019, the negative impact of endometriosis on work attendance and work ability in Australia does not appear to have significantly changed (Howe et al., 2024 ). Suggesting, as employees and workplaces do not find the Safe Work guidelines practical or effective. While WHS guidance has enhanced disease awareness, prior research finds that practical workplace interventions most notably, flexible work arrangements have a greater impact on endometriosis symptom management and employee productivity (Armour et al., 2022 ). Access to appropriate policy/guidelines to manage endometriosis symptoms at work may help reduce absenteeism and positively affect productivity; “far more challenging [as we will show] are the inhospitable and embedded norms and cultures that women face day-to-day” (Riach & Jack, 2021 , p. 13). Indeed, many endometriosis sufferers navigate intersecting forms of discrimination at work in part because endometriosis is a largely invisible chronic illness (ICI) and is often inaccurately viewed as a menstrual disease only, rather than the full body disease it is. Paradoxically for women 1 with endometriosis while there is a hypervisibility of the female body at work their illness typically remains invisible. Research consistently reports on how people with endometriosis and chronic pelvic pain navigate workplace harassment, career derailment, lack of career progression underemployment and premature retirement (Armour et al., 2022 ; Armour et al., 2020 ; Hansen et al., 2013 ; Hawkey et al., 2022 ). Workplaces systemically favour the ideal worker and masculine bodily norm’s such that “women’s bodies – and so women themselves – are understood as leaky, emotional, hormonal and unreliable” (Beck et al., 2023 , p. 495). Through this lens we have a fertile window through which to understand how women managing endometriosis navigate multiple layers of discrimination (gendered ableism, sexism, and power inequality) as they fail to embody, and so “fit” the ‘ideal worker’ norm (Acker, 1990 ; Grandey et al., 2020 ; Rees et al., 2021 ; Sang et al., 2021 ). In this paper we problematise how the traditional workplace norms strengthen gendered practices at work, which constitute discriminatory effects for people living with endometriosis. Furthermore, we explore how the absence of adequate guideline, policy, and evaluation can in part be attributed to the difficultly in naming and understanding the intersecting forms of sexism and ableism experienced by women with endometriosis. To understand and to ‘make visible’ the underlying mechanisms that are preventing people with endometriosis from accessing workplace supports; this study places those with endometriosis at the centre of our inquiry to value and prioritise their interpretations and experiences accessing workplace supports. Accordingly, the present research illuminates and interrogates how deeply gendered and intersecting discourses and norms (re)produce inhospitable workplace cultures. Our Contribution Our aim was to understand how people with endometriosis experience, interpret and make sense of their experiences managing endometriosis symptoms and paid work. The research is guided by two research questions: RQ 1: How do women with endometriosis interpret how their career is shaped by symptom management at work? RQ 2 How can this knowledge inform practice and policy-based recommendations which support women with endometriosis in the workplace? Positioning Ourselves / Theory Underpinned by a pragmatic worldview, we position ourselves from a post-structural feminist perspective. By privileging knowledges, truths, rationalities, and power relations (Bacchi; & Goodwin, 2016 ; Carey et al., 2019 ) post-structural feminism values and directs attentiveness to how endometriosis symptoms are experienced at work and how power structures privilege or sanction particular ways of being. Through understanding the plurality of lived experiences and questioning the existing status quo the development and implementation of workplace guidelines might better support people managing endometriosis at work. Extending Acker’s work (1990, 2006, 2016) we understand how people with endometriosis often struggle to participate and progress their careers because they fail to fit the ideal, unencumbered worker norm. This ‘ideal worker’ is a disembodied individual who has no external obligations or bodily demands outside of work (Acker, 1990 ; Lee, 2018 ). Women, trans men, gender-diverse and non-binary people PFAB are “othered” because they fail to comply with the ‘ideal worker’ norm. In the traditional workplace, menstruation, disorders of the menstrual cycle, pregnancy, and menopause are transgressive (Atkinson et al., 2021 ; Grandey et al., 2020 ; Whiley et al., 2022 ), framing women’s ‘leaky’ bodies as ‘weak’ and subjecting them to stigma (Acker, 1990 ). With bodily politics provoking career derailment, deferment, or lack of career progression (Brown & Gershon, 2017 ; Grandey et al., 2020 ). Workplaces are constituted by and through interlinking processes and practices which discriminate against people who fail to embody the ideal worker due to intersections of gender, race, class and ability for instance (Acker, 2012 ; Healy et al., 2019 ). Acker ( 2012 ) proposes ‘inequality regimes’ as a construct to understand the deeply embedded organisational processes, underpinned by an unequal power structure which becomes taken for granted and without deliberate effort to undo, the inequalities reinforce themselves and persist. Inequality regimes reward those who embody the ideal worker, while ‘punishing’ those who differ from this norm, like women with endometriosis (Brown & Gershon, 2017 ; Grandey et al., 2020 ). Through this approach our aim is to locate and understand how people with endometriosis navigate intersecting forms of ableism, sexism, and gendered power relations at work (Acker, 2012 ). We inform our research questions by problematising the workplace experience of employees managing endometriosis symptoms at work (Theme one). Further drawing from women’s experiences we identify and discuss workplace supports that best helped them manage endometriosis symptoms at work (Theme two). [1] This paper uses the term ‘women’ to refer to cis women when discussing endometriosis. While during recruitment, our research was open to all identifying genders with a diagnosis of endometriosis; only cis women self-selected to participate in this component of our study. By using the term ‘women’ we acknowledge the gendered experience faced by cis women and propose recommendations to address these experiences. We in no way seek to diminish the experiences of trans men, intersex, non-binary and gender diverse people who have endometriosis. Instead, this report acknowledges the scarcity of research available from trans men, intersex, non-binary, and gender diverse people with endometriosis, their unique experiences in the workplace; and the gap in the literature around distinct interventions to address their unique experiences at work. Methods Participants & Recruitment This study is the second phase of a wider project involving the co-design of a set of evidence-based guidelines for Australian employers. In the first phase, we undertook a national online survey to generate a snapshot of workplace experiences of endometriosis which then informed our second phase, a set of focus group discussions with a sub-set of respondents from the initial online survey. After receiving ethics approval from Western Sydney University (H14770), we advertised the first phase of the study (online survey) through social media platforms (Facebook and Instagram) via Endometriosis Australia an endometriosis advocacy, education, and platforms that support the endometriosis community (> 45,000 combined followers in 2022). The research team also shared the recruitment invitation through their personal and professional networks. The survey was open to people living in Australia with a self-reported endometriosis diagnosis who are over the age of 18 years old and who have had a job in the last three months. A total of 389 people completed the survey. Nearly all respondents (n = 384, 98.7%) identified as female and the remaining respondents (n = 5, 1.3%) identified as non-binary. All Australian States and Territories were represented in the survey. Following the survey, all respondents were asked if they would be willing to participate in an online focus group discussion. Those who opted-in to participate in the focus groups were redirected to a new survey where they could share contact information – ensuring anonymity for the survey responses. This project is informed by the participatory action research (PAR) approach. PAR is an ongoing commitment to understanding lived experiences and sharing power and knowledge of its participants throughout its research stages (MacDonald, 2012 ). Drawing on and extending Foucault’s “power-knowledge relations” (Foucault, 1977 , p. 27) this approach ensures that the recommendations emerging from the present research are “grounded in the views of the participants” (Creswell & Plano Clark, 2018 , p. 105). Between September and November 2022 45 participants took part in six focus groups. All participants identified as (cis) women. Nearly all (91%) of the focus group participants were employed in Australia; 8% participants were recently unemployed (in the past three months) attributing their unemployment to endometriosis symptoms at work. Of the participants who disclosed their contract, only two (5%) participants worked full-time on-site, the remaining participants (32%) worked at least under a form of hybrid working, part-time, casual or self-employed. Table 1 Demographics and employment-related information (N = 45) Gender, n (%) Woman 45 100% Employed, n (%) Yes 41 91% No 4 9% Type of employment (N = 41), n (%) Full time (on site) 2 5% Full time (from home) 3 7% Full time (split on site and work from home) 2 5% Full time hours : Part time study + Part time work 7 17% Part time 2 5% Casual 2 5% Self-Employed / Contractor 4 10% Undisclosed 11 27% Industry*, (N = 41), n (%) Healthcare and social assistance 6 15% Education and training 2 5% Professional, scientific, and technical services 2 5% Retail trade 4 10% Public administration and safety 7 17% Information media and telecommunications 1 2% Arts and recreation services 1 2% Transport, postal and warehousing 1 2% Legal 2 5% Student 7 17% Undisclosed 9 22% *total may equal more than 100% because some participants worked in more than one area (e.g. student who also works part-time in retail) Procedure Participants took part in a 60–90-minute focus group (via Zoom), with a maximum of ten participants per group. Focus groups followed a semi-structured discussion in which questions were informed by preliminary survey findings (phase one), and acted as open-ended prompts to explore: Experiences managing endometriosis in the workplace; Impact of endometriosis on work outcomes and wellbeing; Experiences around disclosure (with managers & coworkers); and Experiences with workplace accommodations, supports, and policy. Following each focus group, the authors leading the session would stay online to discuss their initial observations and reactions. This also acted as an iterative-feedback session, which helped shape and refine open-ended prompts and questions for the following session. Data Analyses Approach Reflexive thematic analysis (RTA) (Braun & Clarke, 2019 ) was conducted to position subjective experiences of endometriosis at work within broader societal systems and structures. This positioning is important to align with the aim of understanding experiences to develop evidence-based guidelines and make recommendations for employers to improve working conditions for employees with endometriosis. RTA extends Braun and Clarke’s (2006) framework and serves as a systematic method for identifying, organising, and capturing patterns of meaning within narratives. Braun and Clarke (2006) suggest a six-phase, iterative process for thematic analysis: familiarising oneself with the data, generating initial codes, identifying latent themes by clustering the conceptually similar manifest codes, refining themes and assigning representative labels, and ultimately producing a report that elucidates the interconnections between themes. In the first analytic phase, primary author (DH) (re)-read and de-identified each transcript and collated with initial authors reflections into Word documents. DH further familiarised herself with each transcript by (re)reading all de-identified sessions and author's notes, noting observations and reactions. DH then met with the remaining authors to discuss initial reflections. During phase two, DH generated initial codes by re-reading all transcripts and collating all data and their corresponding codes into one Word document. Generated initial codes were in the left column of a table, while line-by-line data from the transcripts was added to a generated and/or corresponding code. For the third phase, DH met with authors (MA and MO), we reviewed and discussed the initial codes and corresponding data based on conceptual similarity and located latent themes to capture underlying meanings. We designated a notetaker to ensure documentation and adequate representation of perspectives. We maintained reflexivity by identifying assumptions, acknowledging coding disagreements and collectively discussing perspectives until we continued to reach consensus regarding latent themes. Finally, DH used NVivo to (re)code the transcripts line-by-line into the agreed-to latent themes. By doing this, we crosschecked the codes and themes back to the narratives. The findings of phase two will provide a set of recommendations informed by lived experience, to be introduced as the foundation to a set of guidelines to support employee’s managing endometriosis symptoms at work. Findings and Discussion The first theme titled, “ If I wanted to get somewhere…I had to suck it up” reflects the intersecting reasons why participants concealed and ‘push-through’ their endometriosis symptoms while at work. For one woman the protracted and extreme nature of her endometriosis symptoms and the absence of workplace support meant that to remain in the workplace she ended up ‘choosing’ to remove her reproductive organs. The idea of ‘sucking-up’ the pain and ‘working through it’ was underscored by the tendency to place the onus on the individual worker to overcome ableist barriers to access and maintaining employment (See Table 2 ). The second theme labelled “If I can be supported, I can work” is underpinned by employee agency and responsibility sharing. That is, how workplaces can support education and awareness alongside the impactful reasonable adjustments participants’ reported as impactful (See Table 2 ). Table 2 Themes and subthemes Themes Subtheme 1.0 “If I wanted to get somewhere…I had to suck it up” 1.1 I need to suck it up and push through because… I need to work 1.2 I need to suck it up and push through because… I want to work 1.3 I need to suck it up and push through because… I am not supported by existing policy 1.4 I need to suck it up and push through because… I don’t want to be seen as lazy 1.5 I need to suck it up and push through because… I need to remove organs to stay productive 2.0 “If I can be supported, I can work” …shifting responsibility from employee to workplace 2.1 My workplace needs to … Normalise that it’s not normal 2.2 My workplace needs to… Educate managers so I don’t have to be ‘lucky’ 2.3 My workplace needs to… Alleviate the burden of lived-experience advocacy 2.4 My workplace needs to… Provide practical supports & reasonable adjustments Theme 1: “If I wanted to get somewhere…I had to suck it up” 1.1 I need to suck it up and push through because… I need to work Our findings are in line with prior endometriosis research (Armour et al., 2020 ; As-Sanie et al., 2019 ; Bell et al., 2023 ) where negative impacts on women’s productivity, career progression, and economic well-being remain pervasive. Analyses of data revealed that participants were often caught in a cycle of needing to work, yet also requiring time-off to attend appointments related to their endometriosis, with both medical and allied health/complementary therapy appointments being common in this cohort (Malik et al., 2022 ). For many women, the costs associated with treatments was exhaustive and at times barely manageable: “…finances…comes into it…you have a gynaecologist, women's health specialist, dietitian, physiotherapist, pelvic, physiotherapist, massage therapist, acupuncturist. How much money do you spend in a month? ...I've exhausted my sick leave from work. I still need to keep up my health and well-being, which I need these things to be able to do…I can barely even pay for my rent. My health and wellbeing go absolutely down...you can risk homelessness if you don't have that extra support” -Sydney, Focus Group 3 (FG3) 1.2 I need to suck it up and push through because… I want to work Participants discussed ‘needing’ to work (due to the financial costs associated with endometriosis but also wanting to work. As Lynn (FG1) remarked, “ I'm super driven and I really want to have a career and…see where that goes .” Many participants not only need a job, but want a career; and are highly motivated (Hansen et al., 2013 ). To achieve this, participants described instances where they would hide their symptoms and ‘push through’, like Kaylee (FG1): “ …if I wanted to get somewhere, have a career, be in a more senior role, I had to suck it up ”. Kaylee is implicitly acknowledging that she needed to adopt “ideal worker norms” in order to succeed. Despite a determination to ‘push through’, the recurring (and varied intensity) nature of endometriosis means that at some point in a person’s career they were either unable to work due to symptoms or required time-off to manage them (e.g. surgery or allied health appointments): …working casual positions in retail…I needed every single hour of…the wage. If I was not well, I would have to just suck it up, drug myself to the gills, go there and work…there's few times when I had to cancel…You do that and in all likelihood, you're not going to get the same shift the next week. They would be like, she's not reliable, we needed her...it was just such an incredibly precarious position. -Olivia, FG6 Olivia’s comments, while consistent with Kaylee’s, demonstrate the complete lack of safety net for employees in casual positions who don’t have access to sick leave. Carolyn’s remarks below illuminate the emotional burden and tension between wanting to work, and not wanting to disclose her endometriosis diagnosis until necessary. Carolyn succumbs to pressure to return to work before she is ready which perpetuated further negative health implications: “I didn't [disclose my endo] until the end of last year … It wasn't until I had a surgery date, and I knew I would have to take the time off that I actually said anything to [work]. When I came back [from surgery] they were pestering me about how long it was going to be before I could go to full duties…then I had a ruptured cyst while I was at work.”- Carolyn, FG2 Carolyn’s experience highlights how women who are striving to live up to the ideal worker norm are harming their health. 1.3 I need to suck it up and push through because… I am not supported by existing policies We found that a lack of existing workplace policies for people to manage their symptoms while working was a persistent and significant issue. Like existing research, the inadequacy of existing policy and practice negatively impacted a person’s career progression and economic well-being (Armour et al., 2022 ; As-Sanie et al., 2019 ). Instead of formal policy, employees often reported the added logistics, labour, and stress that went into (formally or informally) taking time off to attend doctor’s appointments, arranging meetings, or planning times when they would be ‘symptom-free’ so they could work ‘twice as hard’ to make up for absences. The following accounts all speak to substantial internal turmoil around how to manage symptoms at work: “It's really tough. There are things that I can do, do my important tasks really early in the day so that I know that I'll be…fully awake and engaged. But it's definitely a tough one to manage …a bit of suffering in silence” -Kathy, FG5 Kathy’s description here about how she plans her day, shows her staunch commitment to her workplace and runs counter to narratives of women “faking it” or trying to get out of work. Lynn discussed the challenges of disclosing symptoms: “How do you explain to someone when you kind of just, like, been to the bathroom and you feel like you're going to pass out and then you just have to go back to your desk and pretend like everything's normal?” -Lynn, FG1 Implicit in these experiences is that women are not accessing workplace support based on their needs, but based on an internal negotiation of how much is too much? How often is too often? Even though the symptoms they are experiencing have a profound impact on their ability to work. Sydney (FG3) further remarked: “Managing sick leave, that's a big worry. Am I in enough pain to take the day off, or should I save it for a day where it's worse?” -Sydney, FG3 Women acknowledged their endometriosis impacted their presenteeism, workability and career. These next responses show how serious the consequences can be for these women both within the workplace and on one’s commute and for Jade and Wendy the additional emotional work they undertake to ameliorate the impact of their symptoms on their work. “And I can't count how many times I've merely passed out on the floor trying to teach.” -Kim, FG1 “[My work] were not flexible. It was like, oh, yeah, we have flexible work arrangements. ‘No, we don't mean work-from-home, but come in half an hour early if you want’…And that was after I'd had quite a bit of time off because of endometriosis [and was forced to take sick leave]. I was at the point where I was crossing the road and collapsing in the middle of the road because I had some nerve involvement that was making my legs basically just stop working sometimes. And my boss just didn't seem to believe that it was as bad as it was. She kept saying things like, oh, we can give you a beanbag and a hot water bottle. And I'm like, well, it's not really helping me when I'm vomiting…and can't get off the floor.”-Jade, FG3 “ At the moment, I'm looking for another job just closer to home so I don't have to catch the 45 minutes bus, which is…filled with a lot of anxiety if anything happens while I'm on the bus, which I've been pretty close a few ti mes.”- Wendy, FG3 Our findings contribute to the literature in that people with endometriosis are often forced or ‘self-select’ out of promotions and career progression. This compounds poor work outcomes and economic well-being reported in the literature surrounding menstruating and menopausal bodies and work (Armour et al., 2022 ; As-Sanie et al., 2019 ). “I had to take time off my PhD, I was supposed to move to Denmark. I had to give up that opportunity and wait for 18 months to get surgery and then recover as well…that particular experience was the worst that I've had.” -Jade, FG3 “[I’ve] sort of self-selected out of promotions and that sort of thing. Travel is something that I've self-selected out of and that is important if I wanted to progress in my role… I had an opportunity to travel overseas and I was worried how I would go if I had a really bad pain attack, because the pain was just so intense at that point. It just wasn't something I could do, so I had to say no to that.” -Erica, FG5 “ What I've noticed in the last couple of years as my symptoms have progressively got worse is fear and taking new opportunities, promotions or any kind of additional role for my career progression about whether I would be able to manage” -Viv, FG5 These responses are consistent in that in each circumstance participants interpret how they are responsible for managing their symptoms and health. Structural accommodations and supports remain out-of-reach, even in workplaces that tout their flexible working conditions. 1.4 I need to suck it up and push through because… I don’t want to be seen as lazy These experiences illustrate how people living with an ICI, like endometriosis, may experience various taxonomies of stigma or discrimination whether or not they have disclosed their endometriosis to their employer (Vickers, 1997 ). For instance, a person who has disclosed their endometriosis may experience ‘knowledge-based stigmas’ where inaccurate knowledge about an illness can construct damaging and inaccurate assumptions (Vickers, 2000 ). As was the case for June (FG3), where a colleagues endometriosis fatigue was misconstrued by managers or colleagues as, ‘laziness’, serving as an warning to our respondent who did not disclose: “There was this other girl that had endo, and she would always be…off for appointments…She told people she had endo, but I just saw…how people treated her and…how people would just talk shit behind her back and be like, well, she's never at work…She's just a bludger. And that was what put me into my shell…people just don't understand. It should be…different.” -June, FG3 Another taxonomy of stigma they may face is ‘suspicions of malingering’ where a worker may be discriminated against because their endometriosis symptoms are difficult to authenticate, and their manager does not believe the severity of symptoms (Vickers, 2000 ). For example, Sue remarked: “[My manager] absolutely believed that I was faking it. I would sometimes get up at 05:00 am. And work from bed just to make sure I got it [work] done.”-Sue, FG3 Similar taxonomies of stigma may emerge regardless of disclosure. For instance, Kathy (FG5) chose not to disclose, but still was fatigued in the office. “I work in a very high-pressure industry. It's very common at my workplace for people to work 50–60 hours a week…that doesn't really gel very well with fatigue.” -Kathy, FG5 Out of ignorance of the existence of an ICI, she feared the manager or colleagues may still perceive a need to rest as laziness. Other behaviours, such as a worker taking long breaks in the bathroom to ‘conceal’ their painful symptoms, may also be perceived or labelled by managers or colleagues as ‘laziness’, a ‘ lack of commitment to role’ or ‘inefficient’ (Vickers, 2000 ). This has been referred to as, “the dilemma of disclosure”(Vickers, 1997 , p. 240), whereby regardless of disclosure employees with endometriosis or other chronic health conditions are most likely face some form of discrimination in their workplace. From a sociological perspective, endometriosis sufferers may be discriminated against because, any degree of illness that reduces a person’s ability to perform their role at full capacity is perceived as a disruption and are likely to face social rejection and job discrimination (Gignac et al., 2021 ). In addition to the stigma and discrimination faced by those with ICIs at work, people with endometriosis may face additional forms of discrimination because endometriosis is linked to menstruation and associated symptom invalidation (Bontempo, 2024 ; Vickers, 1997 ). In a masculine workplace, “…observable signs of menstruation…are used to ridicule and undermine professional women.” (Grandey et al., 2020 , p. 8). While endometriosis is not a disease of the menstrual cycle, its strong association may contribute to a similar stigma, as Jane suggests (FG2): “a lot of women are still unfortunately ashamed to talk about those things…even without endo, just to actually say, oh, I have a period today, I feel like crap. Most women that I know will never talk about it.”-Jane, FG2 Unfortunately, the shame Jane describes around talking about endometriosis prevents open discussions that could potentially educate colleagues and supervisors about the lived experience of the chronic illness. Additionally, the association between endometriosis and menstruation and lack of general knowledge can contribute to the minimising symptoms and invalidation driven by sexist beliefs that it’s a ‘woman issue’; and something you can ‘push through’. “ My new manager told me, isn't it just cramps ?” (Wendy, FG3). The sexist nature of the workplace response is underlined by the following respondents: “It's because it's a women's disease. People don't know that it's a whole-body disease, that…just gets swept under the carpet ” Ash, FG2 “It just feels like a cop-out when you say, I got to have a day off for my period. Like, it doesn't feel like it's a valid reason to have a day off because people don't understand the intensity of it ” -Kim, FG1 Our data demonstrates that endometriosis symptoms and its associations with reproduction would create a hypervisibility as a woman working in the office, whether you have disclosed endometriosis or not: “I used to get when you get really bloated and stuff and people in the workplace, I get the glances at my stomach. I get people looking at work, I can see their eyes and they look at me and I know what they're thinking, which is, you've gone and gotten yourself pregnant. And I'm like, well, that is impossible for me. So it just and it makes you feel really uncomfortable.” -Ash, FG2 Women living with endometriosis and managing it at work, face multiple layers of discrimination which is deeply entrenched in the ‘ideal worker’ norm (Acker, 2006 ; Pedwell & Whitehead, 2012 ). Often this contributes to gendered vertical segregation (i.e. where cis men more commonly occupy managerial roles) which is typically accompanied by an even greater ‘othering’ of female bodies and an unwillingness to engage with ‘women’s issues’ such as policies to promote gender equity (Targett & Beck, 2021 , p. 26; Whiley et al., 2022 ). The absence of understanding and empathy among managers and supervisors contributed to inhospitable workplace cultures as described by Nicole and Penny: “[I] needed to take three days of work off every single month…because I had eight out of ten days…I couldn't function, couldn't do my job. So, loss of income and lost opportunities. I've watched men get promoted above me, but I trained [them]…one of them turned out to be a terrible manager for me and made my life miserable. I've been the only woman in my team for years” -Nicole, FG6 “It was…a mixed bag between male and female reactions as to who would be the most uncomfortable about [my endo]...The males, oh my god! Because they automatically think, oh, that means she's having a really bad period. And I don't know how to talk about that.” -Penny, FG3 Bodies that are different from the ‘ideal worker’ and the people embodying them were punished: “In my first week there I heard these comments about oh yeah, they're always hiring women who are like early 30s but it just means that they're going to have to have maternity leave or they're going to have issues with their womanly parts…these really kind of disgusting comments essentially” -Sydney, FG3 The experiences presented make explicit how ideal worker norms can produce a ‘no-win’ situation where women are punished for both having periods and a chronic illness. Gendered ableism contributes to workplace harassment and gendered economic issues such as career derailment, lack of career progression, or a premature end of career (i.e. early retirement), which over time systemically reinforces gender inequity (Atkinson et al., 2021 ; Grandey et al., 2020 ; Sang et al., 2021 ). 1.5 Suck it up and push through because… I need to remove organs to stay productive So far we have demonstrated how women with endometriosis are problematised and constituted as deviant to masculine ideal worker norms (Butler, 2002 ). Our findings demonstrate that women with endometriosis may face intersecting forms of gendered discrimination based on the visibility of symptoms caused by their endometriosis (hypervisibility of the feminine body), and stigma attached to disclosure (or non-disclosure) of their ICI – all of which prevent the women with endometriosis in conforming to the unencumbered worker (Acker, 2012 ; Vickers, 1997 ). Analyses of our data reveals the ongoing negative toll it takes by the added logistics of ‘pushing through’, hiding symptoms to continue to work, and to cope with stigma and discrimination. Towards the mid- to late-stage of a person’s career, many participants disclosed they chose to have a hysterectomy to minimise their endometriosis symptoms to maintain their employment. “I lost an ovary and other women had [a] hysterectomy…because we need to keep our jobs, we need to keep working…we're losing vital organs … at the same time we're satisfying more people than ourselves…If I don't get rid of my ovary or I don't have a hysterectomy, then how am I going to continue going to work? How am I going to continue paying the bills? …why do we have to put ourselves through that cost and pain mentally and physically to keep ourselves afloat?” -Carmen, FG5 Our findings show that these women must go to extreme lengths to embody the ‘ideal worker’. They must suck it up, squash down their need to rest, ignore their pain, wake up early or stay up late, or even surgically remove their uterus to mould their body to the ideal worker norm and stay employed (Beck et al., 2023 ). By ‘choosing’ to have a hysterectomy, their employer will be less affected by their endometriosis symptoms, they will be more likely to embody the ideal unencumbered worker; and ultimately will be rewarded within the traditional workplace. We ask, however, is this really a choice? To live in our society, one must work; and considering the financial burden associated with endometriosis, in lieu of adequate policy are workplaces requiring people to lose uteruses to continue to work? Theme 2: “If I can be supported, I can work”: shifting responsibility from employee to workplace. The issues discussed so far in theme one stem from the belief that it is the onus of the individual woman to conceal, work harder, push through or give-up organs to be productive and maintain or advance in one’s employment. Globally, other successful workplace guidelines addressing women’s health have gained traction and uptake by positioning policy amendments and entitlements as a gendered occupational health concern, recognising that women have unique work health and safety concerns (Hardy et al., 2018 ; Howe et al., 2023 ). This shifts the onus onto the workplace to provide support and education specific to women’s workplace health and safety (Howe et al., 2023 ; James, 2024 ). Our second theme titled: “If I can be supported, I can work”: Shifting responsibility from employee to workplace , relies on the experiences of our participants to illuminate how workplaces can provide education and awareness training to normalise endometriosis and alleviate the advocacy burden. Our findings suggest workplaces should facilitate reasonable adjustments and encourage the use of practical supports (e.g. ergonomic chairs and heat packs) and flexible working conditions. Our findings are underlined by Acker’s ( 2012 ) idea that any step toward redressing workplace inequity must simultaneously address the underlying practices reinforcing inequality regimes. Therefore, any interventions that support people with endometriosis to work, will not only have to support the management of physical symptoms (i.e. pain management) but may also challenge entrenched gendered and intersecting ableist stigma. 2.1 Workplaces need to… Normalise that it’s not normal Despite the reported shame and stigma associated with endometriosis, most participants described wanting endometriosis to be normalised: “I think we need to be more open about it as well and talk about it...We can't perpetuate the stigma. We…have to be vocal...this is the time to really get out and go, yeah, I've got endometriosis and there are a few other girls have endometriosis and this is what we need…it's got to come out and we have to start talking about it to raise awareness and make a change.” -Mary, FG5 More awareness and education may reduce taxonomies of stigma and discrimination experienced in the workplace (Millen & Walker, 2001 ). Many participants felt that if there was a greater understanding of the severity of symptoms, that they would receive greater understanding from their employer and colleagues and have improved access to supports in the workplace. This could improve their feelings of belonging, productivity and increase their capacity to work. Additionally, participants noted that education which disentangled endometriosis’s association with menstruation and instead described the condition as a ‘whole-body’ disease was particularly helpful in overcoming false information and workplace discrimination. “I moved within the same industry from one store to a different store, and those managers actually talked and one warned the other one about me. This is before my diagnosis, basically saying that I was going to be faking my symptoms…I then sat down with my new manager and said, this is my diagnosis. This is what it is. This is how it impacts me…it's not just in my pelvic region, it's all through my abdominal cavity. It's on my diaphragm. It impacts my breathing. I get chronic headaches, and migraines. I have it in, we think in one of my pelvic nerves that goes down my leg because sometimes I literally can't lift my leg to get changed. So, for me, it was a little bit easier in the fact that it wasn't just in my reproductive system.” -Chloe , FG2 Considering the stigma and shame associated with menstruation and how, as we’ve discussed, ‘leaky’ bodies are punished for not conforming to the ideal worker. People with endometriosis have found it useful to distance themselves from the ‘leaky body’ and the form of body politic that “the female body is always a professional liability” (Trethewey, 1999 , p. 445). This form of education only distances people with endometriosis from the undisciplined bleeding and reproducing female body and reinforces the female body as ‘abject’, while communicating to those in charge (typically cis white men) that women with endometriosis are different or more capable because they are somehow ‘less leaky’. We recognise that this education might be helpful in the short-term, we argue that it is a band-aid solution. Extending Acker’s ( 2012 ) ideas we contend that a more constructive solution is to advocate for education and awareness which challenges the visible and invisible day-to-day processes that discriminate based on intersections of gender, ableism, and age. 2.2 My workplace needs to… Educate managers so I don’t have to be ‘lucky’ Those supported in their workplace often attributed it to luck rather than a workplace right that should be upheld, “… it's up to the individual manager…I was extremely lucky to have a really understanding one” FG3 ). Line managers played a critical role as ‘gatekeepers’ to certain informal or formal policies providing support: “I've just been so lucky with my manager and the organization and how they've responded. It's been very…free of judgment…[they’ve] allowed me to work from home more without really any questions about it, to change my hours, to just finish-up early when I'm feeling sick, which means I don't need to use as much leave.” -Kathy, FG5. This underlines the need for workplace policy/guidelines which administers appropriate manager/supervisory education and training to improve all employee’s ability to access workplace supports – and for that access to be consistent across the entire workforce. 2.2 My workplace needs to… Alleviate the burden of lived-experience advocacy There is a need for education, which normalises and reduces shame for women with endometriosis, who menstruate and transition through menopause in the workplace. This is especially the case in male-dominated industries where the day-to-day processes of the organisation which favour the unencumbered worker are more entrenched (Acker, 1990 ). Our research suggests that education and advocacy delivered by someone with lived experience of endometriosis greatly impacts these underlying processes. Through our conversations with participants who advocate for awareness and education, there was a proven track record for normalising, reducing stigma and evoking workplace change. “It's just now it's a very public experience for me and everyone in the workplace knows about my endo, which I love, but recognise that that's not for everyone. I'm actually wearing a jumper that my personal assistant bought me that says, ‘my tummy hurts, but I'm feeling I'm being really brave about it’.” -Jamie, FG6 Analyses of our data revealed how people with lived experience in more senior roles created a space for understanding workplaces, were positive role models and advocated for people with endometriosis to access support and flexibility. Their positions of seniority gave license to those with less power to be open about their situation. “We have someone quite senior who has spoken publicly within the organisation about her experiences with endometriosis and chronic pain, and that has been so helpful. I was quite new when she first shared that, and so it made me feel really safe when I was having those early disclosure conversations. But it also…gave me someone senior who seemed to be doing really well; and [gave me] some hope that things would be okay and that I could figure out how to exist at work.”-Kathy, FG5 “The only person at that time who actually cared was my direct manager…But she had the exact same procedure [laparoscopy] so she knew what I was going through and she was very supportive. Even when [other] managers are like, ‘get her back to work’; and she was like, ‘no, you don't know what this surgery does to a person’. So, she was very supportive.” -Lori, FG4 Respondent experiences highlight how lived-experience advocacy in the workplace is an additional burden and significant labour. This unpaid labour can further contribute to stress and poor workability, as it takes time and energy away from a person’s ‘regular’ work activities. For example: “The education piece is absolutely critical. I should not have to be the one trying to educate my manager and what to do around this. Yes, I can probably say, look, this is what I need as an individual. However, in saying that there is just blank stare, no idea, I have no idea and I don't know if we can accommodate any of that because I'd have to go check with HR and it's like, well, I might as well just go into HR and said, I need this leave. What do you need from me? It irritates me that I spent so many hours trying to advocate for myself when I was doing all the stuff outside of work to get myself in a well-positioned, mentally, physically, as best I can with the condition, managing it. -Lena, FG2 “It really bothers me that I have to spend an enormous amount of time educating my manager and advocating for myself when I have an entitlement there…more energy when I'm already sapped” -Ash, FG2 There are exciting leaps in research around the importance and effectiveness of lived experience in education and training (Byrne et al., 2018 ; Hartley & Penlington, 2023 ). However, this risks coming at a cost to the affected persons as described above by Lena and Ash (Hartley & Penlington, 2023 ). To reduce the risk of burdening those with lived experience, our findings further underline the importance of advocates in the workplace, who are astute to how the condition/illness affects work and culture and can drive education and change within the workplace: “I've got a boss that's flexible and also defensive of that flexibility. So that's working because if I log off at three and someone needs me between three and five, she is just very good at saying she's finished. Where…at previous jobs I'd get messages like, ‘you need to log back on, you know, people expect you there at five’.” -Stacy, FG5 Stacy’s experience underscores the importance of change being driven by people in leadership roles. Lastly, to ensure sustainable and ongoing change, education must be an ongoing process: “there's a lot of speakers going into employers and workplace around menopause and perimenopause, and a lot of them are included in the induction…it would be great to have to have something around endo.” -Kaylee, FG1 Workplaces should promote education and training which has been informed by lived-experience data. However, education does not need to be promoted and/or delivered by someone with endometriosis, but as described by our respondents the advocacy of those in leadership roles helps the message cut-through and generate cultural change. 2.3 My workplace needs to… provide practical support and reasonable adjustments Our findings contribute to the literature that reasonable adjustments such as (but not limited to): flexibility to rest, take breaks, use the toilet, or work from home when needed (as opposed to pre-scheduled times) significantly influence presenteeism, absenteeism and workability for people with endometriosis (Howe et al., 2024 ). “When we were in lockdown I got to experience working from home because in my organization it was never…considered…I found just being able to…have that extra hour in the morning to sleep in, be able to wear comfortable pants, have the hot water bottle on me, be able to move around, take a break. And just have the freedom and being comfortable within my own house if I needed to…run to the bathroom or crouch down for 15 minutes while my painkillers kicked in. It was a lot easier to do that from home…then…in the office.” -Viv, FG5 Participants noted other practical supports such as ability to use heat-packs, TENS Machines, wear comfortable uniforms, use ergonomical chairs, were helpful in symptom management and self-reported feelings of productivity. Access to practical supports has demonstrated a positive impact on broader women’s health at work, such as the management for dysmenorrhea and symptoms related to menopause (Baird et al., 2021 ; Hardy et al., 2018 ). Thus, further reiterating the idea that most supports are quite ‘simple’ and cost-effective solutions (Armour et al., 2022 ). Most of these supports, if not all are already existing (in some form) in the workplace and are likely to be straightforward to implement: “ One thing that I found incredibly useful in my workplace is we have an amazing woman director. And one of the first things she did when she came on board as director was, she set up a spare office…it was set up for breastfeeding women to start with because we had quite a few women who were breastfeeding. But then it has a couch as well, so it can be used for anyone who just needs to go lie down…I don't have to go home. Sometimes I just to need to lie down for an hour or so and then I can get back to work. So just having those spaces in workplace, I think would really be helpful.” -Olivia, FG6 Our study concludes that workplace policies/guidelines providing reasonable adjustments and practical supports must be enacted alongside appropriate education and awareness training, supported by leadership to ensure a workplace culture that provides equitable access to policy supports. Recommendations Understanding participants experiences and reviewing the existing literature, we have developed a set of recommendations for workplaces seeking to support people with endometriosis Education : Education and training informed by lived experience, especially targeting senior leaders, managers and supervisors. Advocates : Advocates in the workplace driving and operationalising education (informed by, but not necessarily delivered by people with lived experience, backed by leadership) Policy supports flexible working arrangements, ability to take bathroom breaks when needed, quiet/rest areas, one-time medical certificates, ability to use heat packs, TENS machines and other complementary treatments when necessary. Limitations The recruitment strategy, primarily based on social media, may have introduced sampling bias, limiting the sample to those active online. To reduce this bias, collaboration with Endometriosis Australia allowed broader outreach through their platforms The sample mainly comprised white, cisgender Australian women with higher education and middle-class income, limiting generalisability to migrant, ethnic minority groups, and Indigenous communities, in addition to transgender men, intersex, non-binary and gender diverse people PFAB groups with endometriosis. This demographic constraint hindered our ability to analyse intersections of class, sex, and race with gender and ability. Further research targeting these communities is needed to better understand their experiences and address workplace inequities. Despite these limitations, this study contributes new insights to the literature and contributes to the body of recommendations aimed at enhancing workplace support for women with endometriosis. Conclusion To date, little empirical data exists to understand people’s experiences managing endometriosis at work. Mostly, workplace guidelines and policies have been difficult to measure due to the intersecting workplace dynamics of sexism and ableism. Our study places those with endometriosis at the centre of our inquiry to problematise their experiences accessing existing workplace supports and their experiences navigating deeply embedded masculine workplace norms and culture. Our qualitative research identified two themes. Our first theme, “ If I wanted to get somewhere…I had to suck it up ” explored the complex logic that requires participants to hide their symptoms at work or go to the extremes of removing organs to maintain their employment. The second theme, “If I can be supported, I can work”: shifting responsibility from employee to workplace challenges the pervasive norm that individuals alone should be responsible for managing their symptoms at work. The experiences of our participants demonstrate how workplaces can best provide education and awareness (informed by, but not delivered by those with lived experienced), supported by leadership, alongside reasonable adjustments, that largely encompass flexible working conditions. These findings help illuminate women’s complex experiences accessing workplace supports. Providing recommendations for workplace guidelines that can support both physical symptom management and challenge harmful stigmas and masculine norms to support a person with endometriosis to improve work and career outcomes. Declarations Acknowledgements The authors wish to acknowledge the support of Endometriosis Australia in assisting with advertising the research Ethical Statement Our study was approved by Western Sydney University Human Research Ethics Committee (h24770). All participants provided written informed consent prior to enrolment in the study. Author’s Contributions M.A. is lead contributor to conception. D.H. is lead contributor to design, data acquisition, analyses, interpretation of data and drafting the article. Authors M.A., M.O. and S.D. contributed to design and data acquisition. All authors (D.H., M.O., S.D., A.E., and M.A.) contributed to interpretation of data, the critical revision of article, and provided final approval of the version to be published. 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Organ Stud 20(3):423–450. https://doi.org/10.1177/0170840699203003 Vickers MH (1997) Life at work with invisible chronic illness (ICI): the unseen, unspoken, unrecognized dilemma of disclosure. J Workplace Learn 9(7):240–252. https://doi.org/10.1108/13665629710190040 Vickers MH (2000) Stigma, Work, and Unseen Illness: A Case and Notes to Enhance Understanding. Illn crisis loss 8(2):131–151. https://doi.org/10.1177/105413730000800203 Whiley LA, Wright A, Stutterheim SE, Grandy G (2022) A part of being a woman, really: Menopause at work as dirty femininity. Gender, Work & Organization, n/a (n/a ). https://doi.org/https://doi.org/10.1111/gwao.12946 Additional Declarations The authors declare no competing interests. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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","correspondingAuthor":false,"prefix":"","firstName":"Danielle","middleName":"","lastName":"Howe","suffix":""},{"id":379780309,"identity":"35cd072b-6d7c-45c5-a636-7b7903647fed","order_by":1,"name":"Michelle O'Shea","email":"","orcid":"","institution":"School of Business, Western Sydney University, Sydney, Australia. ","correspondingAuthor":false,"prefix":"","firstName":"Michelle","middleName":"","lastName":"O'Shea","suffix":""},{"id":379780310,"identity":"c1509d7e-46b6-4872-a9f4-950adf95ebd3","order_by":2,"name":"Sarah Duffy","email":"","orcid":"","institution":"School of Business, Western Sydney University, Sydney, Australia. ","correspondingAuthor":false,"prefix":"","firstName":"Sarah","middleName":"","lastName":"Duffy","suffix":""},{"id":379780311,"identity":"db8e415b-6cef-4401-94d9-660929575f97","order_by":3,"name":"Mike Armour","email":"data:image/png;base64,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","orcid":"","institution":"NICM Health Research Institute, Western Sydney University, Sydney, Australia. ","correspondingAuthor":true,"prefix":"","firstName":"Mike","middleName":"","lastName":"Armour","suffix":""}],"badges":[],"createdAt":"2024-11-19 04:52:10","currentVersionCode":1,"declarations":{"humanSubjects":true,"vertebrateSubjects":false,"conflictsOfInterestStatement":false,"humanSubjectEthicalGuidelines":true,"humanSubjectConsent":true,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":false,"vertebrateSubjectEthicalGuidelines":false},"doi":"10.21203/rs.3.rs-5480104/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5480104/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":69837065,"identity":"d352d1ad-57bc-47e9-85dd-c7efc84e188b","added_by":"auto","created_at":"2024-11-25 16:26:42","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":669690,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5480104/v1/15ec380a-d9f3-4618-8140-cccd6ff53938.pdf"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003e“Suck it up and push through!” Exploring the experiences of women with endometriosis at work.\u003c/p\u003e","fulltext":[{"header":"Introduction","content":"\u003cp\u003eEndometriosis is estimated to affect 6\u0026ndash;14% of women and those presumed female at birth (PFAB) worldwide (AIHW, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2023\u003c/span\u003e; Eisenberg et al., \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e2018\u003c/span\u003e; Rowlands et al., \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e2021\u003c/span\u003e); with one in seven Australian women and those PFAB having an endometriosis diagnosis by ages 44\u0026ndash;49 (AIHW, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). Endometriosis symptoms are multiple including severe period pain (dysmenorrhea), non-cyclical pelvic pain, and fatigue being the most common (Armour et al., \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2020\u003c/span\u003e) with current estimates suggesting that endometriosis prevalence may be greater than breast cancer, prostate cancer, and diabetes (Simoens et al., \u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e2014\u003c/span\u003e; Treloar et al., \u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e1999\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eEndometriosis symptoms can profoundly affect people\u0026rsquo;s quality of life, workplace attendance and productivity (De Graaff et al., \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2013\u003c/span\u003e; Fourquet et al., \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e2010\u003c/span\u003e; Nnoaham et al., \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e2011\u003c/span\u003e). In Australia, endometriosis cost of illness burden is 9.7B AUD per year, with most of the cost (84%) associated with lost productivity (Armour, Lawson, et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2019\u003c/span\u003e). Similarly, prior studies across the U.S., UK, and EU-member states confirm that productivity costs are the most significant contributor to overall costs for people with endometriosis (Armour, Lawson, et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2019\u003c/span\u003e). Previous research exploring the impacts of endometriosis and work has found that pain severity was the biggest factor in lost productivity; revealing how endometriosis symptom severity is clearly linked to employee presenteeism, absenteeism, and related productivity losses (De Graaff et al., \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e2013\u003c/span\u003e; Hansen et al., \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e2013\u003c/span\u003e; Nnoaham et al., \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e2011\u003c/span\u003e; Soliman et al., \u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e2017\u003c/span\u003e). Additionally, reductions in pain are reportedly strongly correlated with reductions in presenteeism and absenteeism (Armour, Parry, et al., \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e2019\u003c/span\u003e). Accordingly, if pain and symptoms are better managed, it is likely that the impact of lost productivity could be significantly reduced. Despite these impacts, the absence of non-medical supports to enable endometriosis pain management at work remains limited (Howe et al., \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e2023\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e Workplace guidelines and policy can play an influential role (in addressing this gap) and enhancing work outcomes for people with endometriosis. Previous research suggests relatively simple accommodations (i.e. flexible-time management, working from home, rest periods, physical aids and supportive managers) can enable employees to manage their endometriosis symptoms more effectively. Relatedly, enhanced supports were significantly associated with a reduced number of sick days and perceptions of improved productivity (Armour et al., \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Howe et al., \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e2024\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e In Australia (the geographical and legislative context of this study) existing frameworks take the form of endometriosis national guidelines tied to Workplace Health and Safety (WHS) legislation (Safe-Work Australia 2019). While drawing attention to endometriosis prevalence and its effects, the Safe-Work guidelines have proved largely ineffective. Recent research from the authorship team demonstrates how despite the introduction of the Safe-Work guidelines in 2019, the negative impact of endometriosis on work attendance and work ability in Australia does not appear to have significantly changed (Howe et al., \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e2024\u003c/span\u003e). Suggesting, as employees and workplaces do not find the Safe Work guidelines practical or effective. While WHS guidance has enhanced disease awareness, prior research finds that practical workplace interventions most notably, flexible work arrangements have a greater impact on endometriosis symptom management and employee productivity (Armour et al., \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2022\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAccess to appropriate policy/guidelines to manage endometriosis symptoms at work may help reduce absenteeism and positively affect productivity; \u0026ldquo;far more challenging [as we will show] are the inhospitable and embedded norms and cultures that women face day-to-day\u0026rdquo; (Riach \u0026amp; Jack, \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e2021\u003c/span\u003e, p. 13). Indeed, many endometriosis sufferers navigate intersecting forms of discrimination at work in part because endometriosis is a largely invisible chronic illness (ICI) and is often inaccurately viewed as a menstrual disease only, rather than the full body disease it is. Paradoxically for women\u003ca class=\"FNLink\" href=\"#Fn1\" id=\"#FNLinkFn1\"\u003e1\u003c/a\u003e with endometriosis while there is a hypervisibility of the female body at work their illness typically remains invisible.\u003c/p\u003e \u003cp\u003eResearch consistently reports on how people with endometriosis and chronic pelvic pain navigate workplace harassment, career derailment, lack of career progression underemployment and premature retirement (Armour et al., \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2022\u003c/span\u003e; Armour et al., \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Hansen et al., \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e2013\u003c/span\u003e; Hawkey et al., \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e2022\u003c/span\u003e). Workplaces systemically favour the ideal worker and masculine bodily norm\u0026rsquo;s such that \u0026ldquo;women\u0026rsquo;s bodies \u0026ndash; and so women themselves \u0026ndash; are understood as leaky, emotional, hormonal and unreliable\u0026rdquo; (Beck et al., \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2023\u003c/span\u003e, p. 495). Through this lens we have a fertile window through which to understand how women managing endometriosis navigate multiple layers of discrimination (gendered ableism, sexism, and power inequality) as they fail to embody, and so \u0026ldquo;fit\u0026rdquo; the \u0026lsquo;ideal worker\u0026rsquo; norm (Acker, \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1990\u003c/span\u003e; Grandey et al., \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Rees et al., \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Sang et al., \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). In this paper we problematise how the traditional workplace norms strengthen gendered practices at work, which constitute discriminatory effects for people living with endometriosis. Furthermore, we explore how the absence of adequate guideline, policy, and evaluation can in part be attributed to the difficultly in naming and understanding the intersecting forms of sexism and ableism experienced by women with endometriosis.\u003c/p\u003e \u003cp\u003eTo understand and to \u0026lsquo;make visible\u0026rsquo; the underlying mechanisms that are preventing people with endometriosis from accessing workplace supports; this study places those with endometriosis at the centre of our inquiry to value and prioritise their interpretations and experiences accessing workplace supports. Accordingly, the present research illuminates and interrogates how deeply gendered and intersecting discourses and norms (re)produce inhospitable workplace cultures.\u003c/p\u003e \u003cp\u003eOur Contribution\u003c/p\u003e \u003cp\u003eOur aim was to understand how people with endometriosis experience, interpret and make sense of their experiences managing endometriosis symptoms and paid work. The research is guided by two research questions:\u003c/p\u003e \u003cp\u003e \u003cb\u003eRQ\u003c/b\u003e 1: How do women with endometriosis interpret how their career is shaped by symptom management at work?\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eRQ 2\u003c/strong\u003e \u003cp\u003eHow can this knowledge inform practice and policy-based recommendations which support women with endometriosis in the workplace?\u003c/p\u003e \u003c/p\u003e \u003cp\u003ePositioning Ourselves / Theory\u003c/p\u003e \u003cp\u003eUnderpinned by a pragmatic worldview, we position ourselves from a post-structural feminist perspective. By privileging knowledges, truths, rationalities, and power relations (Bacchi; \u0026amp; Goodwin, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e2016\u003c/span\u003e; Carey et al., \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e2019\u003c/span\u003e) post-structural feminism values and directs attentiveness to how endometriosis symptoms are experienced at work and how power structures privilege or sanction particular ways of being. Through understanding the plurality of lived experiences and questioning the existing status quo the development and implementation of workplace guidelines might better support people managing endometriosis at work.\u003c/p\u003e \u003cp\u003eExtending Acker\u0026rsquo;s work (1990, 2006, 2016) we understand how people with endometriosis often struggle to participate and progress their careers because they fail to fit the ideal, unencumbered worker norm. This \u0026lsquo;ideal worker\u0026rsquo; is a disembodied individual who has no external obligations or bodily demands outside of work (Acker, \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1990\u003c/span\u003e; Lee, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). Women, trans men, gender-diverse and non-binary people PFAB are \u0026ldquo;othered\u0026rdquo; because they fail to comply with the \u0026lsquo;ideal worker\u0026rsquo; norm. In the traditional workplace, menstruation, disorders of the menstrual cycle, pregnancy, and menopause are transgressive (Atkinson et al., \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2021\u003c/span\u003e; Grandey et al., \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e2020\u003c/span\u003e; Whiley et al., \u003cspan fncitationid=\"CR53\" class=\"CitationRef\"\u003e2022\u003c/span\u003e), framing women\u0026rsquo;s \u0026lsquo;leaky\u0026rsquo; bodies as \u0026lsquo;weak\u0026rsquo; and subjecting them to stigma (Acker, \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1990\u003c/span\u003e). With bodily politics provoking career derailment, deferment, or lack of career progression (Brown \u0026amp; Gershon, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2017\u003c/span\u003e; Grandey et al., \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e2020\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eWorkplaces are constituted by and through interlinking processes and practices which discriminate against people who fail to embody the ideal worker due to intersections of gender, race, class and ability for instance (Acker, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2012\u003c/span\u003e; Healy et al., \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e2019\u003c/span\u003e). Acker (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2012\u003c/span\u003e) proposes \u0026lsquo;inequality regimes\u0026rsquo; as a construct to understand the deeply embedded organisational processes, underpinned by an unequal power structure which becomes taken for granted and without deliberate effort to undo, the inequalities reinforce themselves and persist. Inequality regimes reward those who embody the ideal worker, while \u0026lsquo;punishing\u0026rsquo; those who differ from this norm, like women with endometriosis (Brown \u0026amp; Gershon, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2017\u003c/span\u003e; Grandey et al., \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e2020\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThrough this approach our aim is to locate and understand how people with endometriosis navigate intersecting forms of ableism, sexism, and gendered power relations at work (Acker, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2012\u003c/span\u003e). We inform our research questions by problematising the workplace experience of employees managing endometriosis symptoms at work (Theme one). Further drawing from women\u0026rsquo;s experiences we identify and discuss workplace supports that best helped them manage endometriosis symptoms at work (Theme two).\u003c/p\u003e \u003cp\u003e[1]\u0026nbsp;This paper uses the term \u0026lsquo;women\u0026rsquo; to refer to cis women when discussing endometriosis. While during recruitment, our research was open to all identifying genders with a diagnosis of endometriosis; only cis women self-selected to participate in this component of our study. By using the term \u0026lsquo;women\u0026rsquo; we acknowledge the gendered experience faced by cis women and propose recommendations to address these experiences. \u0026nbsp; We in no way seek to diminish the experiences of trans men, intersex, non-binary and gender diverse people who have endometriosis. \u0026nbsp;Instead, this report acknowledges the scarcity of research available from trans men, intersex, non-binary, and gender diverse people with endometriosis, their unique experiences in the workplace; and the gap in the literature around distinct interventions to address their unique experiences at work.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eParticipants \u0026amp; Recruitment\u003c/p\u003e\n\u003cp\u003eThis study is the second phase of a wider project involving the co-design of a set of evidence-based guidelines for Australian employers. In the first phase, we undertook a national online survey to generate a snapshot of workplace experiences of endometriosis which then informed our second phase, a set of focus group discussions with a sub-set of respondents from the initial online survey.\u003c/p\u003e\n\u003cp\u003eAfter receiving ethics approval from Western Sydney University (H14770), we advertised the first phase of the study (online survey) through social media platforms (Facebook and Instagram) via Endometriosis Australia an endometriosis advocacy, education, and platforms that support the endometriosis community (\u0026gt;\u0026thinsp;45,000 combined followers in 2022). The research team also shared the recruitment invitation through their personal and professional networks. The survey was open to people living in Australia with a self-reported endometriosis diagnosis who are over the age of 18 years old and who have had a job in the last three months. A total of 389 people completed the survey. Nearly all respondents (n\u0026thinsp;=\u0026thinsp;384, 98.7%) identified as female and the remaining respondents (n\u0026thinsp;=\u0026thinsp;5, 1.3%) identified as non-binary. All Australian States and Territories were represented in the survey. Following the survey, all respondents were asked if they would be willing to participate in an online focus group discussion. Those who opted-in to participate in the focus groups were redirected to a new survey where they could share contact information \u0026ndash; ensuring anonymity for the survey responses.\u003c/p\u003e\n\u003cp\u003eThis project is informed by the participatory action research (PAR) approach. PAR is an ongoing commitment to understanding lived experiences and sharing power and knowledge of its participants throughout its research stages (MacDonald, \u003cspan class=\"CitationRef\"\u003e2012\u003c/span\u003e). Drawing on and extending Foucault\u0026rsquo;s \u0026ldquo;power-knowledge relations\u0026rdquo; (Foucault, \u003cspan class=\"CitationRef\"\u003e1977\u003c/span\u003e, p. 27) this approach ensures that the recommendations emerging from the present research are \u0026ldquo;grounded in the views of the participants\u0026rdquo; (Creswell \u0026amp; Plano Clark, \u003cspan class=\"CitationRef\"\u003e2018\u003c/span\u003e, p. 105).\u003c/p\u003e\n\u003cp\u003eBetween September and November 2022 45 participants took part in six focus groups. All participants identified as (cis) women. Nearly all (91%) of the focus group participants were employed in Australia; 8% participants were recently unemployed (in the past three months) attributing their unemployment to endometriosis symptoms at work. Of the participants who disclosed their contract, only two (5%) participants worked full-time on-site, the remaining participants (32%) worked at least under a form of hybrid working, part-time, casual or self-employed.\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n\u003cdiv class=\"colspec\" align=\"char\"\u003e\u0026nbsp;\u003c/div\u003e\n\u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n\u003ctable id=\"Tab1\" border=\"1\"\u003e\u003ccaption\u003e\n\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n\u003cdiv class=\"CaptionContent\"\u003e\n\u003cp\u003e\u003cem\u003eDemographics and employment-related information (N\u0026thinsp;=\u0026thinsp;45)\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003c/caption\u003e\n\u003cthead\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003cth style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eGender, n (%)\u003c/p\u003e\n\u003c/th\u003e\n\u003cth style=\"height: 35px;\" align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n\u003cth style=\"height: 35px;\" align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n\u003c/tr\u003e\n\u003c/thead\u003e\n\u003ctbody\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eWoman\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e45\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e100%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eEmployed, n (%)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eYes\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e41\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e91%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eNo\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e4\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e9%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eType of employment (N\u0026thinsp;=\u0026thinsp;41), n (%)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eFull time (on site)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e5%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eFull time (from home)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e3\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e7%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eFull time (split on site and work from home)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e5%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eFull time hours : Part time study\u0026thinsp;+\u0026thinsp;Part time work\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e7\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e17%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003ePart time\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e5%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eCasual\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e5%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eSelf-Employed / Contractor\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e4\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e10%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eUndisclosed\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e11\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e27%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eIndustry*, (N\u0026thinsp;=\u0026thinsp;41), \u003cem\u003en\u003c/em\u003e (%)\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eHealthcare and social assistance\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e6\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e15%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eEducation and training\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e5%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eProfessional, scientific, and technical services\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e5%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eRetail trade\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e4\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e10%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003ePublic administration and safety\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e7\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e17%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eInformation media and telecommunications\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e2%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eArts and recreation services\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e2%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eTransport, postal and warehousing\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e1\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e2%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eLegal\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e2\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e5%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eStudent\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e7\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e17%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr style=\"height: 35px;\"\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003eUndisclosed\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"char\" char=\".\"\u003e\n\u003cp\u003e9\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd style=\"height: 35px;\" align=\"left\"\u003e\n\u003cp\u003e22%\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003ctfoot\u003e\n\u003ctr style=\"height: 13px;\"\u003e\n\u003ctd style=\"height: 13px;\" colspan=\"3\"\u003e*total may equal more than 100% because some participants worked in more than one area (e.g. student who also works part-time in retail)\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tfoot\u003e\n\u003c/table\u003e\n\u003ch2\u003eProcedure\u003c/h2\u003e\n\u003cp\u003eParticipants took part in a 60\u0026ndash;90-minute focus group (via Zoom), with a maximum of ten participants per group. Focus groups followed a semi-structured discussion in which questions were informed by preliminary survey findings (phase one), and acted as open-ended prompts to explore:\u003c/p\u003e\n\u003cul\u003e\n\u003cli\u003eExperiences managing endometriosis in the workplace;\u003c/li\u003e\n\u003cli\u003eImpact of endometriosis on work outcomes and wellbeing;\u003c/li\u003e\n\u003cli\u003eExperiences around disclosure (with managers \u0026amp; coworkers); and\u003c/li\u003e\n\u003cli\u003eExperiences with workplace accommodations, supports, and policy.\u003c/li\u003e\n\u003c/ul\u003e\n\u003c/div\u003e\n\u003cp\u003eFollowing each focus group, the authors leading the session would stay online to discuss their initial observations and reactions. This also acted as an iterative-feedback session, which helped shape and refine open-ended prompts and questions for the following session.\u003c/p\u003e\n\u003cp\u003eData Analyses Approach\u003c/p\u003e\n\u003cp\u003eReflexive thematic analysis (RTA) (Braun \u0026amp; Clarke, \u003cspan class=\"CitationRef\"\u003e2019\u003c/span\u003e) was conducted to position subjective experiences of endometriosis at work within broader societal systems and structures. This positioning is important to align with the aim of understanding experiences to develop evidence-based guidelines and make recommendations for employers to improve working conditions for employees with endometriosis. RTA extends Braun and Clarke\u0026rsquo;s (2006) framework and serves as a systematic method for identifying, organising, and capturing patterns of meaning within narratives. Braun and Clarke (2006) suggest a six-phase, iterative process for thematic analysis: familiarising oneself with the data, generating initial codes, identifying latent themes by clustering the conceptually similar manifest codes, refining themes and assigning representative labels, and ultimately producing a report that elucidates the interconnections between themes.\u003c/p\u003e\n\u003cp\u003eIn the first analytic phase, primary author (DH) (re)-read and de-identified each transcript and collated with initial authors reflections into Word documents. DH further familiarised herself with each transcript by (re)reading all de-identified sessions and author's notes, noting observations and reactions. DH then met with the remaining authors to discuss initial reflections. During phase two, DH generated initial codes by re-reading all transcripts and collating all data and their corresponding codes into one Word document. Generated initial codes were in the left column of a table, while line-by-line data from the transcripts was added to a generated and/or corresponding code.\u003c/p\u003e\n\u003cp\u003eFor the third phase, DH met with authors (MA and MO), we reviewed and discussed the initial codes and corresponding data based on conceptual similarity and located latent themes to capture underlying meanings. We designated a notetaker to ensure documentation and adequate representation of perspectives. We maintained reflexivity by identifying assumptions, acknowledging coding disagreements and collectively discussing perspectives until we continued to reach consensus regarding latent themes. Finally, DH used NVivo to (re)code the transcripts line-by-line into the agreed-to latent themes. By doing this, we crosschecked the codes and themes back to the narratives.\u003c/p\u003e\n\u003cp\u003eThe findings of phase two will provide a set of recommendations informed by lived experience, to be introduced as the foundation to a set of guidelines to support employee\u0026rsquo;s managing endometriosis symptoms at work.\u003c/p\u003e\n"},{"header":"Findings and Discussion ","content":"\u003cp\u003eThe first theme titled, \u0026ldquo;\u003cem\u003eIf I wanted to get somewhere\u0026hellip;I had to suck it up\u0026rdquo;\u003c/em\u003e reflects the intersecting reasons why participants concealed and \u0026lsquo;push-through\u0026rsquo; their endometriosis symptoms while at work. For one woman the protracted and extreme nature of her endometriosis symptoms and the absence of workplace support meant that to remain in the workplace she ended up \u0026lsquo;choosing\u0026rsquo; to remove her reproductive organs. The idea of \u0026lsquo;sucking-up\u0026rsquo; the pain and \u0026lsquo;working through it\u0026rsquo; was underscored by the tendency to place the onus on the individual worker to overcome ableist barriers to access and maintaining employment (See Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e\n\u003cp\u003eThe second theme labelled \u003cem\u003e\u0026ldquo;If I can be supported, I can work\u0026rdquo;\u003c/em\u003e is underpinned by employee agency and responsibility sharing. That is, how workplaces can support education and awareness alongside the impactful reasonable adjustments participants\u0026rsquo; reported as impactful (See Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n \u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n \u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n \u003cdiv class=\"colspec\" align=\"char\"\u003e\u0026nbsp;\u003c/div\u003e\n \u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n \u003ctable id=\"Tab2\" border=\"1\"\u003e\n \u003ccaption\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eThemes and subthemes\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eThemes\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eSubtheme\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1.0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"5\" align=\"left\"\u003e\n \u003cp\u003e\u0026ldquo;If I wanted to get somewhere\u0026hellip;I had to suck it up\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cstrong\u003e1.1\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eI need to suck it up and push through because\u0026hellip;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eI need to work\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cstrong\u003e1.2\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eI need to suck it up and push through because\u0026hellip;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eI want to work\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cstrong\u003e1.3\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eI need to suck it up and push through because\u0026hellip;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eI am not supported by existing policy\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cstrong\u003e1.4\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eI need to suck it up and push through because\u0026hellip;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eI don\u0026rsquo;t want to be seen as lazy\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cstrong\u003e1.5\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eI need to suck it up and push through because\u0026hellip;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eI need to remove organs to stay productive\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2.0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd rowspan=\"4\" align=\"left\"\u003e\n \u003cp\u003e\u0026ldquo;If I can be supported, I can work\u0026rdquo; \u0026hellip;shifting responsibility from employee to workplace\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cstrong\u003e2.1\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMy workplace needs to \u0026hellip;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eNormalise that it\u0026rsquo;s not normal\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cstrong\u003e2.2\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMy workplace needs to\u0026hellip;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eEducate managers so I don\u0026rsquo;t have to be \u0026lsquo;lucky\u0026rsquo;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cstrong\u003e2.3\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMy workplace needs to\u0026hellip;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eAlleviate the burden of lived-experience advocacy\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cstrong\u003e2.4\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMy workplace needs to\u0026hellip;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eProvide practical supports \u0026amp; reasonable adjustments\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n\u003c/div\u003e\n\u003cp\u003eTheme 1: \u0026ldquo;If I wanted to get somewhere\u0026hellip;I had to suck it up\u0026rdquo;\u003c/p\u003e\n\u003cp\u003e1.1 I need to suck it up and push through because\u0026hellip; \u003cstrong\u003eI need to work\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOur findings are in line with prior endometriosis research (Armour et al., \u003cspan class=\"CitationRef\"\u003e2020\u003c/span\u003e; As-Sanie et al., \u003cspan class=\"CitationRef\"\u003e2019\u003c/span\u003e; Bell et al., \u003cspan class=\"CitationRef\"\u003e2023\u003c/span\u003e) where negative impacts on women\u0026rsquo;s productivity, career progression, and economic well-being remain pervasive. Analyses of data revealed that participants were often caught in a cycle of needing to work, yet also requiring time-off to attend appointments related to their endometriosis, with both medical and allied health/complementary therapy appointments being common in this cohort (Malik et al., \u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e). For many women, the costs associated with treatments was exhaustive and at times barely manageable:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026hellip;finances\u0026hellip;comes into it\u0026hellip;you have a gynaecologist, women\u0026apos;s health specialist, dietitian, physiotherapist, pelvic, physiotherapist, massage therapist, acupuncturist. How much money do you spend in a month? ...I\u0026apos;ve exhausted my sick leave from work. I still need to keep up my health and well-being, which I need these things to be able to do\u0026hellip;I can barely even pay for my rent. My health and wellbeing go absolutely down...you can risk homelessness if you don\u0026apos;t have that extra support\u0026rdquo; -Sydney, Focus Group 3 (FG3)\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003e1.2 I need to suck it up and push through because\u0026hellip; \u003cstrong\u003eI want to work\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants discussed \u0026lsquo;needing\u0026rsquo; to work (due to the financial costs associated with endometriosis but also \u003cem\u003ewanting\u003c/em\u003e to work. As Lynn (FG1) remarked, \u0026ldquo;\u003cem\u003eI\u0026apos;m super driven and I really want to have a career and\u0026hellip;see where that goes\u003c/em\u003e.\u0026rdquo; Many participants not only \u003cem\u003eneed\u003c/em\u003e a job, but \u003cem\u003ewant\u003c/em\u003e a career; and are highly motivated (Hansen et al., \u003cspan class=\"CitationRef\"\u003e2013\u003c/span\u003e). To achieve this, participants described instances where they would hide their symptoms and \u0026lsquo;push through\u0026rsquo;, like Kaylee (FG1): \u0026ldquo;\u003cem\u003e\u0026hellip;if I wanted to get somewhere, have a career, be in a more senior role, I had to suck it up\u003c/em\u003e\u0026rdquo;. Kaylee is implicitly acknowledging that she needed to adopt \u0026ldquo;ideal worker norms\u0026rdquo; in order to succeed.\u003c/p\u003e\n\u003cp\u003eDespite a determination to \u0026lsquo;push through\u0026rsquo;, the recurring (and varied intensity) nature of endometriosis means that at some point in a person\u0026rsquo;s career they were either unable to work due to symptoms or required time-off to manage them (e.g. surgery or allied health appointments):\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u0026hellip;working casual positions in retail\u0026hellip;I needed every single hour of\u0026hellip;the wage. If I was not well, I would have to just suck it up, drug myself to the gills, go there and work\u0026hellip;there\u0026apos;s few times when I had to cancel\u0026hellip;You do that and in all likelihood, you\u0026apos;re not going to get the same shift the next week. They would be like, she\u0026apos;s not reliable, we needed her...it was just such an incredibly precarious position.\u003c/p\u003e\n \u003cp\u003e-Olivia, FG6\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eOlivia\u0026rsquo;s comments, while consistent with Kaylee\u0026rsquo;s, demonstrate the complete lack of safety net for employees in casual positions who don\u0026rsquo;t have access to sick leave.\u003c/p\u003e\n\u003cp\u003eCarolyn\u0026rsquo;s remarks below illuminate the emotional burden and tension between wanting to work, and not wanting to disclose her endometriosis diagnosis until necessary. Carolyn succumbs to pressure to return to work before she is ready which perpetuated further negative health implications:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I didn\u0026apos;t [disclose my endo] until the end of last year\u003c/em\u003e\u0026hellip; It wasn\u0026apos;t until I had a surgery date, and I knew I would have to take the time off that I actually said anything to [work]. When I came back [from surgery] they were pestering me about how long it was going to be before I could go to full duties\u0026hellip;then I had a ruptured cyst while I was at work.\u0026rdquo;-\u003cem\u003eCarolyn, FG2\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eCarolyn\u0026rsquo;s experience highlights how women who are striving to live up to the ideal worker norm are harming their health.\u003c/p\u003e\n\u003cp\u003e1.3 I need to suck it up and push through because\u0026hellip; \u003cstrong\u003eI am not supported by existing policies\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe found that a lack of existing workplace policies for people to manage their symptoms while working was a persistent and significant issue. Like existing research, the inadequacy of existing policy and practice negatively impacted a person\u0026rsquo;s career progression and economic well-being (Armour et al., \u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e; As-Sanie et al., \u003cspan class=\"CitationRef\"\u003e2019\u003c/span\u003e).\u003c/p\u003e\n\u003cp\u003eInstead of formal policy, employees often reported the added logistics, labour, and stress that went into (formally or informally) taking time off to attend doctor\u0026rsquo;s appointments, arranging meetings, or planning times when they would be \u0026lsquo;symptom-free\u0026rsquo; so they could work \u0026lsquo;twice as hard\u0026rsquo; to make up for absences. The following accounts all speak to substantial internal turmoil around how to manage symptoms at work:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It\u0026apos;s really tough. There are things that I can do, do my important tasks really early in the day so that I know that I\u0026apos;ll be\u0026hellip;fully awake and engaged. But it\u0026apos;s definitely a tough one to manage \u0026hellip;a bit of suffering in silence\u0026rdquo; -Kathy, FG5\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eKathy\u0026rsquo;s description here about how she plans her day, shows her staunch commitment to her workplace and runs counter to narratives of women \u0026ldquo;faking it\u0026rdquo; or trying to get out of work.\u003c/p\u003e\n\u003cp\u003eLynn discussed the challenges of disclosing symptoms:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;How do you explain to someone when you kind of just, like, been to the bathroom and you feel like you\u0026apos;re going to pass out and then you just have to go back to your desk and pretend like everything\u0026apos;s normal?\u0026rdquo; -Lynn, FG1\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eImplicit in these experiences is that women are not accessing workplace support based on their needs, but based on an internal negotiation of how much is too much? How often is too often? Even though the symptoms they are experiencing have a profound impact on their ability to work. Sydney (FG3) further remarked:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Managing sick leave, that\u0026apos;s a big worry. Am I in enough pain to take the day off, or should I save it for a day where it\u0026apos;s worse?\u0026rdquo; -Sydney, FG3\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eWomen acknowledged their endometriosis impacted their presenteeism, workability and career. These next responses show how serious the consequences can be for these women both within the workplace and on one\u0026rsquo;s commute and for Jade and Wendy the additional emotional work they undertake to ameliorate the impact of their symptoms on their work.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;And I can\u0026apos;t count how many times I\u0026apos;ve merely passed out on the floor trying to teach.\u0026rdquo; -Kim, FG1\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;[My work] were not flexible. It was like, oh, yeah, we have flexible work arrangements. \u0026lsquo;No, we don\u0026apos;t mean work-from-home, but come in half an hour early if you want\u0026rsquo;\u0026hellip;And that was after I\u0026apos;d had quite a bit of time off because of endometriosis [and was forced to take sick leave]. I was at the point where I was crossing the road and collapsing in the middle of the road because I had some nerve involvement that was making my legs basically just stop working sometimes. And my boss just didn\u0026apos;t seem to believe that it was as bad as it was. She kept saying things like, oh, we can give you a beanbag and a hot water bottle. And I\u0026apos;m like, well, it\u0026apos;s not really helping me when I\u0026apos;m vomiting\u0026hellip;and can\u0026apos;t get off the floor.\u0026rdquo;-Jade, FG3\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;\u003cem\u003eAt the moment, I\u0026apos;m looking for another job just closer to home so I don\u0026apos;t have to catch the 45 minutes bus, which is\u0026hellip;filled with a lot of anxiety if anything happens while I\u0026apos;m on the bus, which I\u0026apos;ve been pretty close a few ti\u003c/em\u003emes.\u0026rdquo;-\u003cem\u003eWendy, FG3\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eOur findings contribute to the literature in that people with endometriosis are often forced or \u0026lsquo;self-select\u0026rsquo; out of promotions and career progression. This compounds poor work outcomes and economic well-being reported in the literature surrounding menstruating and menopausal bodies and work (Armour et al., \u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e; As-Sanie et al., \u003cspan class=\"CitationRef\"\u003e2019\u003c/span\u003e).\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I had to take time off my PhD, I was supposed to move to Denmark. I had to give up that opportunity and wait for 18 months to get surgery and then recover as well\u0026hellip;that particular experience was the worst that I\u0026apos;ve had.\u0026rdquo; -Jade, FG3\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;[I\u0026rsquo;ve] sort of self-selected out of promotions and that sort of thing. Travel is something that I\u0026apos;ve self-selected out of and that is important if I wanted to progress in my role\u0026hellip; I had an opportunity to travel overseas and I was worried how I would go if I had a really bad pain attack, because the pain was just so intense at that point. It just wasn\u0026apos;t something I could do, so I had to say no to that.\u0026rdquo; -Erica, FG5\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;\u003cem\u003eWhat I\u0026apos;ve noticed in the last couple of years as my symptoms have progressively got worse is fear and taking new opportunities, promotions or any kind of additional role for my career progression about whether I would be able to manage\u0026rdquo; -Viv, FG5\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThese responses are consistent in that in each circumstance participants interpret how \u003cem\u003ethey\u003c/em\u003e are responsible for managing their symptoms and health. Structural accommodations and supports remain out-of-reach, even in workplaces that tout their flexible working conditions.\u003c/p\u003e\n\u003cp\u003e1.4 I need to suck it up and push through because\u0026hellip; \u003cstrong\u003eI don\u0026rsquo;t want to be seen as lazy\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThese experiences illustrate how people living with an ICI, like endometriosis, may experience various taxonomies of stigma or discrimination whether or not they have disclosed their endometriosis to their employer (Vickers, \u003cspan class=\"CitationRef\"\u003e1997\u003c/span\u003e). For instance, a person who has disclosed their endometriosis may experience \u0026lsquo;knowledge-based stigmas\u0026rsquo; where inaccurate knowledge about an illness can construct damaging and inaccurate assumptions (Vickers, \u003cspan class=\"CitationRef\"\u003e2000\u003c/span\u003e). As was the case for June (FG3), where a colleagues endometriosis fatigue was misconstrued by managers or colleagues as, \u0026lsquo;laziness\u0026rsquo;, serving as an warning to our respondent who did not disclose:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;There was this other girl that had endo, and she would always be\u0026hellip;off for appointments\u0026hellip;She told people she had endo, but I just saw\u0026hellip;how people treated her and\u0026hellip;how people would just talk shit behind her back and be like, well, she\u0026apos;s never at work\u0026hellip;She\u0026apos;s just a bludger. And that was what put me into my shell\u0026hellip;people just don\u0026apos;t understand. It should be\u0026hellip;different.\u0026rdquo; -June, FG3\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eAnother taxonomy of stigma they may face is \u0026lsquo;suspicions of malingering\u0026rsquo; where a worker may be discriminated against because their endometriosis symptoms are difficult to authenticate, and their manager does not \u003cem\u003ebelieve\u003c/em\u003e the severity of symptoms (Vickers, \u003cspan class=\"CitationRef\"\u003e2000\u003c/span\u003e). For example, Sue remarked:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;[My manager] absolutely believed that I was faking it. I would sometimes get up at 05:00 am. And work from bed just to make sure I got it [work] done.\u0026rdquo;-Sue, FG3\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eSimilar taxonomies of stigma may emerge regardless of disclosure. For instance, Kathy (FG5) chose not to disclose, but still was fatigued in the office.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I work in a very high-pressure industry. It\u0026apos;s very common at my workplace for people to work 50\u0026ndash;60 hours a week\u0026hellip;that doesn\u0026apos;t really gel very well with fatigue.\u0026rdquo; -Kathy, FG5\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eOut of ignorance of the existence of an ICI, she feared the manager or colleagues may still perceive a need to rest as laziness. Other behaviours, such as a worker taking long breaks in the bathroom to \u0026lsquo;conceal\u0026rsquo; their painful symptoms, may also be perceived or labelled by managers or colleagues as \u0026lsquo;laziness\u0026rsquo;, a \u0026lsquo; lack of commitment to role\u0026rsquo; or \u0026lsquo;inefficient\u0026rsquo; (Vickers, \u003cspan class=\"CitationRef\"\u003e2000\u003c/span\u003e). This has been referred to as, \u0026ldquo;the dilemma of disclosure\u0026rdquo;(Vickers, \u003cspan class=\"CitationRef\"\u003e1997\u003c/span\u003e, p. 240), whereby regardless of disclosure employees with endometriosis or other chronic health conditions are most likely face some form of discrimination in their workplace.\u003c/p\u003e\n\u003cp\u003eFrom a sociological perspective, endometriosis sufferers may be discriminated against because, any degree of illness that reduces a person\u0026rsquo;s ability to perform their role at full capacity is perceived as a disruption and are likely to face social rejection and job discrimination (Gignac et al., \u003cspan class=\"CitationRef\"\u003e2021\u003c/span\u003e). In addition to the stigma and discrimination faced by those with ICIs at work, people with endometriosis may face additional forms of discrimination because endometriosis is linked to menstruation and associated symptom invalidation (Bontempo, \u003cspan class=\"CitationRef\"\u003e2024\u003c/span\u003e; Vickers, \u003cspan class=\"CitationRef\"\u003e1997\u003c/span\u003e). In a masculine workplace, \u0026ldquo;\u0026hellip;observable signs of menstruation\u0026hellip;are used to ridicule and undermine professional women.\u0026rdquo; (Grandey et al., \u003cspan class=\"CitationRef\"\u003e2020\u003c/span\u003e, p. 8). While endometriosis is not a disease of the menstrual cycle, its strong association may contribute to a similar stigma, as Jane suggests (FG2):\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;a lot of women are still unfortunately ashamed to talk about those things\u0026hellip;even without endo, just to actually say, oh, I have a period today, I feel like crap. Most women that I know will never talk about it.\u0026rdquo;-Jane, FG2\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eUnfortunately, the shame Jane describes around talking about endometriosis prevents open discussions that could potentially educate colleagues and supervisors about the lived experience of the chronic illness. Additionally, the association between endometriosis and menstruation and lack of general knowledge can contribute to the minimising symptoms and invalidation driven by sexist beliefs that it\u0026rsquo;s a \u0026lsquo;woman issue\u0026rsquo;; and something you can \u0026lsquo;push through\u0026rsquo;. \u0026ldquo;\u003cem\u003eMy new manager told me, isn\u0026apos;t it just cramps\u003c/em\u003e?\u0026rdquo; (Wendy, FG3). The sexist nature of the workplace response is underlined by the following respondents:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It\u0026apos;s because it\u0026apos;s a women\u0026apos;s disease. People don\u0026apos;t know that it\u0026apos;s a whole-body disease, that\u0026hellip;just gets swept under the carpet\u003c/em\u003e\u0026rdquo; Ash, FG2\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It just feels like a cop-out when you say, I got to have a day off for my period. Like, it doesn\u0026apos;t feel like it\u0026apos;s a valid reason to have a day off because people don\u0026apos;t understand the intensity of it\u003c/em\u003e\u0026rdquo; -Kim, FG1\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eOur data demonstrates that endometriosis symptoms and its associations with reproduction would create a hypervisibility as a woman working in the office, whether you have disclosed endometriosis or not:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I used to get when you get really bloated and stuff and people in the workplace, I get the glances at my stomach. I get people looking at work, I can see their eyes and they look at me and I know what they\u0026apos;re thinking, which is, you\u0026apos;ve gone and gotten yourself pregnant. And I\u0026apos;m like, well, that is impossible for me. So it just and it makes you feel really uncomfortable.\u0026rdquo; -Ash, FG2\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eWomen living with endometriosis and managing it at work, face multiple layers of discrimination which is deeply entrenched in the \u0026lsquo;ideal worker\u0026rsquo; norm (Acker, \u003cspan class=\"CitationRef\"\u003e2006\u003c/span\u003e; Pedwell \u0026amp; Whitehead, \u003cspan class=\"CitationRef\"\u003e2012\u003c/span\u003e). Often this contributes to gendered vertical segregation (i.e. where cis men more commonly occupy managerial roles) which is typically accompanied by an even greater \u0026lsquo;othering\u0026rsquo; of female bodies and an unwillingness to engage with \u0026lsquo;women\u0026rsquo;s issues\u0026rsquo; such as policies to promote gender equity (Targett \u0026amp; Beck, \u003cspan class=\"CitationRef\"\u003e2021\u003c/span\u003e, p. 26; Whiley et al., \u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e). The absence of understanding and empathy among managers and supervisors contributed to inhospitable workplace cultures as described by Nicole and Penny:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;[I] needed to take three days of work off every single month\u0026hellip;because I had eight out of ten days\u0026hellip;I couldn\u0026apos;t function, couldn\u0026apos;t do my job. So, loss of income and lost opportunities. I\u0026apos;ve watched men get promoted above me, but I trained [them]\u0026hellip;one of them turned out to be a terrible manager for me and made my life miserable. I\u0026apos;ve been the only woman in my team for years\u0026rdquo; -Nicole, FG6\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It was\u0026hellip;a mixed bag between male and female reactions as to who would be the most uncomfortable about [my endo]...The males, oh my god! Because they automatically think, oh, that means she\u0026apos;s having a really bad period. And I don\u0026apos;t know how to talk about that.\u0026rdquo; -Penny, FG3\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eBodies that are different from the \u0026lsquo;ideal worker\u0026rsquo; and the people embodying them were punished:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;In my first week there I heard these comments about oh yeah, they\u0026apos;re always hiring women who are like early 30s but it just means that they\u0026apos;re going to have to have maternity leave or they\u0026apos;re going to have issues with their womanly parts\u0026hellip;these really kind of disgusting comments essentially\u0026rdquo;\u003c/em\u003e -Sydney, FG3\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThe experiences presented make explicit how ideal worker norms can produce a \u0026lsquo;no-win\u0026rsquo; situation where women are punished for both having periods and a chronic illness. Gendered ableism contributes to workplace harassment and gendered economic issues such as career derailment, lack of career progression, or a premature end of career (i.e. early retirement), which over time systemically reinforces gender inequity (Atkinson et al., \u003cspan class=\"CitationRef\"\u003e2021\u003c/span\u003e; Grandey et al., \u003cspan class=\"CitationRef\"\u003e2020\u003c/span\u003e; Sang et al., \u003cspan class=\"CitationRef\"\u003e2021\u003c/span\u003e).\u003c/p\u003e\n\u003cp\u003e1.5 Suck it up and push through because\u0026hellip; \u003cstrong\u003eI need to remove organs to stay productive\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSo far we have demonstrated how women with endometriosis are problematised and constituted as deviant to masculine ideal worker norms (Butler, \u003cspan class=\"CitationRef\"\u003e2002\u003c/span\u003e). Our findings demonstrate that women with endometriosis may face intersecting forms of gendered discrimination based on the visibility of symptoms caused by their endometriosis (hypervisibility of the feminine body), and stigma attached to disclosure (or non-disclosure) of their ICI \u0026ndash; all of which prevent the women with endometriosis in conforming to the unencumbered worker (Acker, \u003cspan class=\"CitationRef\"\u003e2012\u003c/span\u003e; Vickers, \u003cspan class=\"CitationRef\"\u003e1997\u003c/span\u003e).\u003c/p\u003e\n\u003cp\u003eAnalyses of our data reveals the ongoing negative toll it takes by the added logistics of \u0026lsquo;pushing through\u0026rsquo;, hiding symptoms to continue to work, and to cope with stigma and discrimination. Towards the mid- to late-stage of a person\u0026rsquo;s career, many participants disclosed they chose to have a hysterectomy to minimise their endometriosis symptoms to maintain their employment.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I lost an ovary and other women had [a] hysterectomy\u0026hellip;because we need to keep our jobs, we need to keep working\u0026hellip;we\u0026apos;re losing vital organs \u0026hellip; at the same time we\u0026apos;re satisfying more people than ourselves\u0026hellip;If I don\u0026apos;t get rid of my ovary or I don\u0026apos;t have a hysterectomy, then how am I going to continue going to work? How am I going to continue paying the bills? \u0026hellip;why do we have to put ourselves through that cost and pain mentally and physically to keep ourselves afloat?\u0026rdquo; -Carmen, FG5\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eOur findings show that these women must go to extreme lengths to embody the \u0026lsquo;ideal worker\u0026rsquo;. They must suck it up, squash down their need to rest, ignore their pain, wake up early or stay up late, or even surgically remove their uterus to mould their body to the ideal worker norm and stay employed (Beck et al., \u003cspan class=\"CitationRef\"\u003e2023\u003c/span\u003e). By \u0026lsquo;choosing\u0026rsquo; to have a hysterectomy, their employer will be less affected by their endometriosis symptoms, they will be more likely to embody the ideal unencumbered worker; and ultimately will be rewarded within the traditional workplace. We ask, however, is this really a choice? To live in our society, one must work; and considering the financial burden associated with endometriosis, in lieu of adequate policy are workplaces requiring people to lose uteruses to continue to work?\u003c/p\u003e\n\u003cp\u003eTheme 2: \u0026ldquo;If I can be supported, I can work\u0026rdquo;: shifting responsibility from employee to workplace.\u003c/p\u003e\n\u003cp\u003eThe issues discussed so far in theme one stem from the belief that it is the onus of the individual woman to conceal, work harder, push through or give-up organs to be productive and maintain or advance in one\u0026rsquo;s employment.\u003c/p\u003e\n\u003cp\u003eGlobally, other successful workplace guidelines addressing women\u0026rsquo;s health have gained traction and uptake by positioning policy amendments and entitlements as a gendered occupational health concern, recognising that women have unique work health and safety concerns (Hardy et al., \u003cspan class=\"CitationRef\"\u003e2018\u003c/span\u003e; Howe et al., \u003cspan class=\"CitationRef\"\u003e2023\u003c/span\u003e). This shifts the onus onto the workplace to provide support and education specific to women\u0026rsquo;s workplace health and safety (Howe et al., \u003cspan class=\"CitationRef\"\u003e2023\u003c/span\u003e; James, \u003cspan class=\"CitationRef\"\u003e2024\u003c/span\u003e).\u003c/p\u003e\n\u003cp\u003eOur second theme titled: \u003cem\u003e\u0026ldquo;If I can be supported, I can work\u0026rdquo;: Shifting responsibility from employee to workplace\u003c/em\u003e, relies on the experiences of our participants to illuminate how workplaces can provide education and awareness training to normalise endometriosis and alleviate the advocacy burden. Our findings suggest workplaces should facilitate reasonable adjustments and encourage the use of practical supports (e.g. ergonomic chairs and heat packs) and flexible working conditions.\u003c/p\u003e\n\u003cp\u003eOur findings are underlined by Acker\u0026rsquo;s (\u003cspan class=\"CitationRef\"\u003e2012\u003c/span\u003e) idea that any step toward redressing workplace inequity must simultaneously address the underlying practices reinforcing inequality regimes. Therefore, any interventions that support people with endometriosis to work, will not only have to support the management of physical symptoms (i.e. pain management) but may also challenge entrenched gendered and intersecting ableist stigma.\u003c/p\u003e\n\u003cp\u003e2.1 Workplaces need to\u0026hellip; \u003cstrong\u003eNormalise that it\u0026rsquo;s not normal\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDespite the reported shame and stigma associated with endometriosis, most participants described wanting endometriosis to be normalised:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I think we need to be more open about it as well and talk about it...We can\u0026apos;t perpetuate the stigma. We\u0026hellip;have to be vocal...this is the time to really get out and go, yeah, I\u0026apos;ve got endometriosis and there are a few other girls have endometriosis and this is what we need\u0026hellip;it\u0026apos;s got to come out and we have to start talking about it to raise awareness and make a change.\u0026rdquo; -Mary, FG5\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eMore awareness and education may reduce taxonomies of stigma and discrimination experienced in the workplace (Millen \u0026amp; Walker, \u003cspan class=\"CitationRef\"\u003e2001\u003c/span\u003e). Many participants felt that if there was a greater understanding of the severity of symptoms, that they would receive greater understanding from their employer and colleagues and have improved access to supports in the workplace. This could improve their feelings of belonging, productivity and increase their capacity to work.\u003c/p\u003e\n\u003cp\u003eAdditionally, participants noted that education which disentangled endometriosis\u0026rsquo;s association with menstruation and instead described the condition as a \u0026lsquo;whole-body\u0026rsquo; disease was particularly helpful in overcoming false information and workplace discrimination.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I moved within the same industry from one store to a different store, and those managers actually talked and one warned the other one about me. This is before my diagnosis, basically saying that I was going to be faking my symptoms\u0026hellip;I then sat down with my new manager and said, this is my diagnosis. This is what it is. This is how it impacts me\u0026hellip;it\u0026apos;s not just in my pelvic region, it\u0026apos;s all through my abdominal cavity. It\u0026apos;s on my diaphragm. It impacts my breathing. I get chronic headaches, and migraines. I have it in, we think in one of my pelvic nerves that goes down my leg because sometimes I literally can\u0026apos;t lift my leg to get changed. So, for me, it was a little bit easier in the fact that it wasn\u0026apos;t just in my reproductive system.\u0026rdquo; -Chloe\u003c/em\u003e, FG2\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eConsidering the stigma and shame associated with menstruation and how, as we\u0026rsquo;ve discussed, \u0026lsquo;leaky\u0026rsquo; bodies are punished for not conforming to the ideal worker. People with endometriosis have found it useful to distance themselves from the \u0026lsquo;leaky body\u0026rsquo; and the form of body politic that \u0026ldquo;the female body is always a professional liability\u0026rdquo; (Trethewey, \u003cspan class=\"CitationRef\"\u003e1999\u003c/span\u003e, p. 445). This form of education only distances people with endometriosis from the undisciplined bleeding and reproducing female body and reinforces the female body as \u0026lsquo;abject\u0026rsquo;, while communicating to those in charge (typically cis white men) that women with endometriosis are different or more capable because they are somehow \u0026lsquo;less leaky\u0026rsquo;. We recognise that this education might be helpful in the short-term, we argue that it is a band-aid solution. Extending Acker\u0026rsquo;s (\u003cspan class=\"CitationRef\"\u003e2012\u003c/span\u003e) ideas we contend that a more constructive solution is to advocate for education and awareness which challenges the visible and invisible day-to-day processes that discriminate based on intersections of gender, ableism, and age.\u003c/p\u003e\n\u003cp\u003e2.2 My workplace needs to\u0026hellip; \u003cstrong\u003eEducate managers so I don\u0026rsquo;t have to be \u0026lsquo;lucky\u0026rsquo;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThose supported in their workplace often attributed it to luck rather than a workplace right that should be upheld, \u0026ldquo;\u0026hellip;\u003cem\u003eit\u0026apos;s up to the individual manager\u0026hellip;I was extremely lucky to have a really understanding one\u0026rdquo; FG3\u003c/em\u003e). Line managers played a critical role as \u0026lsquo;gatekeepers\u0026rsquo; to certain informal or formal policies providing support:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026apos;ve just been so lucky with my manager and the organization and how they\u0026apos;ve responded. It\u0026apos;s been very\u0026hellip;free of judgment\u0026hellip;[they\u0026rsquo;ve] allowed me to work from home more without really any questions about it, to change my hours, to just finish-up early when I\u0026apos;m feeling sick, which means I don\u0026apos;t need to use as much leave.\u0026rdquo; -Kathy, FG5.\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThis underlines the need for workplace policy/guidelines which administers appropriate manager/supervisory education and training to improve all employee\u0026rsquo;s ability to access workplace supports \u0026ndash; and for that access to be consistent across the entire workforce.\u003c/p\u003e\n\u003cp\u003e2.2 My workplace needs to\u0026hellip; \u003cstrong\u003eAlleviate the burden of lived-experience advocacy\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThere is a need for education, which normalises and reduces shame for women with endometriosis, who menstruate and transition through menopause in the workplace. This is especially the case in male-dominated industries where the day-to-day processes of the organisation which favour the unencumbered worker are more entrenched (Acker, \u003cspan class=\"CitationRef\"\u003e1990\u003c/span\u003e). Our research suggests that education and advocacy delivered by someone with lived experience of endometriosis greatly impacts these underlying processes. Through our conversations with participants who advocate for awareness and education, there was a proven track record for normalising, reducing stigma and evoking workplace change.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It\u0026apos;s just now it\u0026apos;s a very public experience for me and everyone in the workplace knows about my endo, which I love, but recognise that that\u0026apos;s not for everyone. I\u0026apos;m actually wearing a jumper that my personal assistant bought me that says, \u0026lsquo;my tummy hurts, but I\u0026apos;m feeling I\u0026apos;m being really brave about it\u0026rsquo;.\u0026rdquo; -Jamie, FG6\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eAnalyses of our data revealed how people with lived experience in more senior roles created a space for understanding workplaces, were positive role models and advocated for people with endometriosis to access support and flexibility. Their positions of seniority gave license to those with less power to be open about their situation.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;We have someone quite senior who has spoken publicly within the organisation about her experiences with endometriosis and chronic pain, and that has been so helpful. I was quite new when she first shared that, and so it made me feel really safe when I was having those early disclosure conversations. But it also\u0026hellip;gave me someone senior who seemed to be doing really well; and [gave me] some hope that things would be okay and that I could figure out how to exist at work.\u0026rdquo;-Kathy, FG5\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;The only person at that time who actually cared was my direct manager\u0026hellip;But she had the exact same procedure [laparoscopy] so she knew what I was going through and she was very supportive. Even when [other] managers are like, \u0026lsquo;get her back to work\u0026rsquo;; and she was like, \u0026lsquo;no, you don\u0026apos;t know what this surgery does to a person\u0026rsquo;. So, she was very supportive.\u0026rdquo; -Lori, FG4\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eRespondent experiences highlight how lived-experience advocacy in the workplace is an additional burden and significant labour. This unpaid labour can further contribute to stress and poor workability, as it takes time and energy away from a person\u0026rsquo;s \u0026lsquo;regular\u0026rsquo; work activities. For example:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;The education piece is absolutely critical. I should not have to be the one trying to educate my manager and what to do around this. Yes, I can probably say, look, this is what I need as an individual. However, in saying that there is just blank stare, no idea, I have no idea and I don\u0026apos;t know if we can accommodate any of that because I\u0026apos;d have to go check with HR and it\u0026apos;s like, well, I might as well just go into HR and said, I need this leave. What do you need from me? It irritates me that I spent so many hours trying to advocate for myself when I was doing all the stuff outside of work to get myself in a well-positioned, mentally, physically, as best I can with the condition, managing it. -Lena, FG2\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It really bothers me that I have to spend an enormous amount of time educating my manager and advocating for myself when I have an entitlement there\u0026hellip;more energy when I\u0026apos;m already sapped\u0026rdquo; -Ash, FG2\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThere are exciting leaps in research around the importance and effectiveness of lived experience in education and training (Byrne et al., \u003cspan class=\"CitationRef\"\u003e2018\u003c/span\u003e; Hartley \u0026amp; Penlington, \u003cspan class=\"CitationRef\"\u003e2023\u003c/span\u003e). However, this risks coming at a cost to the affected persons as described above by Lena and Ash (Hartley \u0026amp; Penlington, \u003cspan class=\"CitationRef\"\u003e2023\u003c/span\u003e). To reduce the risk of burdening those with lived experience, our findings further underline the importance of advocates in the workplace, who are astute to how the condition/illness affects work and culture and can drive education and change within the workplace:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026apos;ve got a boss that\u0026apos;s flexible and also defensive of that flexibility. So that\u0026apos;s working because if I log off at three and someone needs me between three and five, she is just very good at saying she\u0026apos;s finished. Where\u0026hellip;at previous jobs I\u0026apos;d get messages like, \u0026lsquo;you need to log back on, you know, people expect you there at five\u0026rsquo;.\u0026rdquo; -Stacy, FG5\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eStacy\u0026rsquo;s experience underscores the importance of change being driven by people in leadership roles. Lastly, to ensure sustainable and ongoing change, education must be an ongoing process:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;there\u0026apos;s a lot of speakers going into employers and workplace around menopause and perimenopause, and a lot of them are included in the induction\u0026hellip;it would be great to have to have something around endo.\u0026rdquo; -Kaylee, FG1\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWorkplaces should promote education and training which has been informed by lived-experience data. However, education does not need to be promoted and/or delivered by someone with endometriosis, but as described by our respondents the advocacy of those in leadership roles helps the message cut-through and generate cultural change.\u003c/p\u003e\n\u003cp\u003e2.3 My workplace needs to\u0026hellip;\u003cstrong\u003eprovide practical support and reasonable adjustments\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOur findings contribute to the literature that reasonable adjustments such as (but not limited to): flexibility to rest, take breaks, use the toilet, or work from home when needed (as opposed to pre-scheduled times) significantly influence presenteeism, absenteeism and workability for people with endometriosis (Howe et al., \u003cspan class=\"CitationRef\"\u003e2024\u003c/span\u003e).\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u0026ldquo;When we were in lockdown I got to experience working from home because in my organization it was never\u0026hellip;considered\u0026hellip;I found just being able to\u0026hellip;have that extra hour in the morning to sleep in, be able to wear comfortable pants, have the hot water bottle on me, be able to move around, take a break. And just have the freedom and being comfortable within my own house if I needed to\u0026hellip;run to the bathroom or crouch down for 15 minutes while my painkillers kicked in. It was a lot easier to do that from home\u0026hellip;then\u0026hellip;in the office.\u0026rdquo; \u003cem\u003e-Viv, FG5\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eParticipants noted other practical supports such as ability to use heat-packs, TENS Machines, wear comfortable uniforms, use ergonomical chairs, were helpful in symptom management and self-reported feelings of productivity. Access to practical supports has demonstrated a positive impact on broader women\u0026rsquo;s health at work, such as the management for dysmenorrhea and symptoms related to menopause (Baird et al., \u003cspan class=\"CitationRef\"\u003e2021\u003c/span\u003e; Hardy et al., \u003cspan class=\"CitationRef\"\u003e2018\u003c/span\u003e). Thus, further reiterating the idea that most supports are quite \u0026lsquo;simple\u0026rsquo; and cost-effective solutions (Armour et al., \u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e). Most of these supports, if not all are already existing (in some form) in the workplace and are likely to be straightforward to implement:\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u0026ldquo;\u003cem\u003eOne thing that I found incredibly useful in my workplace is we have an amazing woman director. And one of the first things she did when she came on board as director was, she set up a spare office\u0026hellip;it was set up for breastfeeding women to start with because we had quite a few women who were breastfeeding. But then it has a couch as well, so it can be used for anyone who just needs to go lie down\u0026hellip;I don\u0026apos;t have to go home. Sometimes I just to need to lie down for an hour or so and then I can get back to work. So just having those spaces in workplace, I think would really be helpful.\u0026rdquo; -Olivia, FG6\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eOur study concludes that workplace policies/guidelines providing reasonable adjustments and practical supports must be enacted alongside appropriate education and awareness training, supported by leadership to ensure a workplace culture that provides equitable access to policy supports.\u003c/p\u003e\n\u003cp\u003eRecommendations\u003c/p\u003e\n\u003cp\u003eUnderstanding participants experiences and reviewing the existing literature, we have developed a set of recommendations for workplaces seeking to support people with endometriosis\u003c/p\u003e\n\u003cul\u003e\n \u003cli\u003e\n \u003cp\u003e\u003cstrong\u003eEducation\u003c/strong\u003e: Education and training informed by lived experience, especially targeting senior leaders, managers and supervisors.\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003e\u003cstrong\u003eAdvocates\u003c/strong\u003e: Advocates in the workplace driving and operationalising education (informed by, but not necessarily delivered by people with lived experience, backed by leadership)\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003e\u003cstrong\u003ePolicy supports\u003c/strong\u003e flexible working arrangements, ability to take bathroom breaks when needed, quiet/rest areas, one-time medical certificates, ability to use heat packs, TENS machines and other complementary treatments when necessary.\u003c/p\u003e\n \u003c/li\u003e\n\u003c/ul\u003e\n\u003cp\u003eLimitations\u003c/p\u003e\n\u003cp\u003eThe recruitment strategy, primarily based on social media, may have introduced sampling bias, limiting the sample to those active online. To reduce this bias, collaboration with Endometriosis Australia allowed broader outreach through their platforms\u003c/p\u003e\n\u003cp\u003eThe sample mainly comprised white, cisgender Australian women with higher education and middle-class income, limiting generalisability to migrant, ethnic minority groups, and Indigenous communities, in addition to transgender men, intersex, non-binary and gender diverse people PFAB groups with endometriosis. This demographic constraint hindered our ability to analyse intersections of class, sex, and race with gender and ability. Further research targeting these communities is needed to better understand their experiences and address workplace inequities.\u003c/p\u003e\n\u003cp\u003eDespite these limitations, this study contributes new insights to the literature and contributes to the body of recommendations aimed at enhancing workplace support for women with endometriosis.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eTo date, little empirical data exists to understand people\u0026rsquo;s experiences managing endometriosis at work. Mostly, workplace guidelines and policies have been difficult to measure due to the intersecting workplace dynamics of sexism and ableism. Our study places those with endometriosis at the centre of our inquiry to problematise their experiences accessing existing workplace supports and their experiences navigating deeply embedded masculine workplace norms and culture. Our qualitative research identified two themes.\u003c/p\u003e \u003cp\u003eOur first theme, \u0026ldquo;\u003cem\u003eIf I wanted to get somewhere\u0026hellip;I had to suck it up\u003c/em\u003e\u0026rdquo; explored the complex logic that requires participants to hide their symptoms at work or go to the extremes of removing organs to maintain their employment. The second theme, \u003cem\u003e\u0026ldquo;If I can be supported, I can work\u0026rdquo;: shifting responsibility from employee to workplace\u003c/em\u003e challenges the pervasive norm that individuals alone should be responsible for managing their symptoms at work. The experiences of our participants demonstrate how workplaces can best provide education and awareness (informed by, but not delivered by those with lived experienced), supported by leadership, alongside reasonable adjustments, that largely encompass flexible working conditions.\u003c/p\u003e \u003cp\u003eThese findings help illuminate women\u0026rsquo;s complex experiences accessing workplace supports. Providing recommendations for workplace guidelines that can support both physical symptom management and challenge harmful stigmas and masculine norms to support a person with endometriosis to improve work and career outcomes.\u003c/p\u003e"},{"header":"Declarations","content":"\u003ch2\u003eAcknowledgements\u003c/h2\u003e\n\u003cp\u003eThe authors wish to acknowledge the support of Endometriosis Australia in assisting with advertising the research\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eEthical Statement\u003c/h2\u003e\n\u003cp\u003eOur study was approved by Western Sydney University Human Research Ethics Committee (h24770). All participants provided written informed consent prior to enrolment in the study.\u003c/p\u003e\n\u003ch2\u003eAuthor\u0026rsquo;s Contributions\u0026nbsp;\u003c/h2\u003e\n\u003cp\u003eM.A. is lead contributor to conception. D.H. is lead contributor to design, data acquisition, analyses, interpretation of data and drafting the article. Authors M.A., M.O. and S.D. contributed to design and data acquisition. All authors (D.H., M.O., S.D., A.E., and M.A.) contributed to interpretation of data, the critical revision of article, and provided final approval of the version to be published.\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eAuthor Disclosure Statement\u0026nbsp;\u003c/h2\u003e\n\u003cp\u003eThe authors have no conflicts of interest to declare.\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eFunding\u0026nbsp;\u003c/h2\u003e\n\u003cp\u003eThe authors have no research funding to declare.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAcker J (1990) Hierarchies, Jobs, Bodies: A Theory of Gendered Organizations. 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Illn crisis loss 8(2):131\u0026ndash;151. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1177/105413730000800203\u003c/span\u003e\u003cspan address=\"10.1177/105413730000800203\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWhiley LA, Wright A, Stutterheim SE, Grandy G (2022) A part of being a woman, really: Menopause at work as dirty femininity. \u003cem\u003eGender, Work \u0026amp;\u003c/em\u003e Organization, \u003cem\u003en/a\u003c/em\u003e\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e(n/a\u003c/span\u003e\u003cspan address=\"http://(n/a\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e). \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/https://doi.org/10.1111/gwao.12946\u003c/span\u003e\u003cspan address=\"10.1111/gwao.12946\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Endometriosis, menstruation, menopause, policy, work, workplace productivity","lastPublishedDoi":"10.21203/rs.3.rs-5480104/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5480104/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eEndometriosis affects an estimated 6\u0026ndash;14% of women and people presumed female at birth, significantly impacting quality of life and workplace productivity. While research highlights that endometriosis pain and symptom management hinders careers and productivity; our current understanding of how workplace practices and intersecting discourses and norms shape careers (for people with endometriosis) remains limited. The present research aims to understand how people with endometriosis experience and make sense of their experiences managing endometriosis symptoms and paid work. First, we asked how do women with endometriosis interpret the way their career is shaped by symptom management at work? Secondly, how can this knowledge inform workplace policies and practices which support endometriosis symptom management in the workplace? Through six online focus groups (September-November 2022) with 45 cisgender women either currently or recently employed in Australia and guided by a post-structural feminist lens, we uncovered two themes in women\u0026rsquo;s experiences. We labelled the first \u0026ldquo;\u003cem\u003eIf I wanted to get somewhere\u0026hellip;I had to suck it up\u003c/em\u003e\u0026rdquo; and consider how and why employees conceal their symptoms; and second \u003cem\u003e\u0026ldquo;If I can be supported, I can work: shifting responsibility from employee to workplace\u0026rdquo;\u003c/em\u003e demonstrating how workplace accommodations and education are impactful. Our recommendations include the development and adoption of workplace guidelines that support physical symptom management together with educational initiatives that challenge stigma, masculinist and ableist norms that support improved workplace productivity, personal wellbeing and career outcomes.\u003c/p\u003e","manuscriptTitle":"“Suck it up and push through!” Exploring the experiences of women with endometriosis at work.","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-11-25 16:18:36","doi":"10.21203/rs.3.rs-5480104/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"a195bc9a-46c0-4a87-8009-2db3f1ffdfee","owner":[],"postedDate":"November 25th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2024-11-25T16:18:36+00:00","versionOfRecord":[],"versionCreatedAt":"2024-11-25 16:18:36","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5480104","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5480104","identity":"rs-5480104","version":["v1"]},"buildId":"0U-iFTyB6qxOgVj8rjrZV","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}