Personal and Interpersonal Functioning of People Living with Endometriosis in the Workplace

Endometriosis is a chronic gynecological disease involving endometrial tissue growth outside of the uterus (Wiese & Emmers-Sommer, 2023), which results in a local inflammatory response (Kennedy et al., 2005). Endometriosis is estimated to affect 1 in 10 women or those assigned female at birth of reproductive age worldwide (BMC Medicine, 2023). The condition is primarily diagnosed in women of reproductive age and includes symptoms such as chronic pelvic pain, ovulation pain, severe dysmenorrhoea, dyspareunia, chronic fatigue, and infertility (Kennedy et al., 2005). Research demonstrates that living with endometriosis negatively influences social functioning and interpersonal relationships (Calvi et al., 2023). Additionally, endometriosis adversely affects the quality of life and subjective wellbeing of those living with the condition (Rush et al., 2018). Specifically, the physical and psychological pain associated with the condition contributes to productivity issues, relationship challenges, and the increased risk of psychological comorbidities such as depression (Rush et al., 2018) and anxiety (Chen et al., 2016). Despite its high prevalence and negative psychological, social, and relationship outcomes, endometriosis remains under-researched (BMC Medicine, 2023). Hopelessness is defined as the expectation that negative events will occur and positive events will not occur, whereby the individual believes that they can do nothing to change their situation (Marchetti, 2019). Hopelessness is marked by a negative attitude towards the future, and is often reported in major psychopathological conditions, such as depression (Marchetti, 2019). Alarmingly, research has demonstrated hopelessness to be strongly associated with suicidal ideation and behaviours (Huen et al., 2015). For those with endometriosis, symptoms of depression, including hopelessness, have been known to impact pain perception and quality of life (Culley et al., 2013; Lagana et al., 2017). Moreover, for those with endometriosis, stigma plays a large role in their mental health, whereby stigma is defined as a deeply discrediting and socially undesirable attribute (Kocas et al., 2023). Research has examined the levels of stigma in multiple chronic health conditions such as Hepatitis C and obesity, finding stigma to be associated with numerous constructs important for mental health, including hopelessness (Kocas et al., 2023). Recently, Sanchez et al. (2024) was the first study to analyse hopelessness in patients with endometriosis, finding that four out of ten patients with endometriosis experienced hopelessness. Despite the intense physical and emotional challenges associated with endometriosis, hopelessness is yet to be investigated in this population in relation to workplace stigma. With a disease that is marked by intense chronic pain and no cure (Grundström et al., 2023), exploring hopelessness in endometriosis will offer greater insights into the lived experience of those with the condition. Invalidation is also a common stigmatising response to chronic pain which is associated with poor health outcomes including depression, loneliness, and lower wellbeing (Coady et al., 2024). Many chronic conditions, including endometriosis, may present as an ‘invisible illness’ where their associated pain and suffering cannot be seen by individuals outside the condition (Abraham & Rajasekaran, 2024; Boring et al., 2021). This can lead to invalidation, whereby individuals disbelieve the endometriosis symptoms, with subsequent discounting and lack of understanding (Järemo et al., 2022; Kool et al., 2010). Chronic pain sufferers have qualitatively reported experiences of invalidation from their healthcare providers and workplaces, who have been dismissive of their pain and have not taken their symptoms seriously (Bontempo, 2022; Nicola et al., 2021). Very little quantitative research has explored the effects of invalidation in endometriosis specifically, however, the present literature suggests that invalidation from employers, friends, and healthcare providers may influence the quality of life of individuals with endometriosis (Boring et al., 2021; Grundström et al., 2023). Another factor related to wellbeing for individuals with a chronic condition such as endometriosis is perceived social support, defined as the existence of support resources when the individual is in need, and largely is an overall impression on whether they judge their social network to be sufficiently supportive (Gulacti, 2010). Perceived social support plays an important role in predicting and moderating self-related negative life events and depressive symptoms (Yang et al., 2023). Additionally, perceived social support has been found to be a moderator in the relationship between general awareness of psychological symptoms and the locus of control (Dag & Sen, 2018). Research on perceived social support in patients with a single chronic condition has shown that it is a strong predictor of health outcomes and wellbeing (De Maria et al., 2020). For those with endometriosis, research has demonstrated that positive social relationships have been shown to be a protective factor, helping to buffer against distress (Calvi et al., 2023; Facchin et al., 2018). However, for those distressed by their endometriosis, they felt like they were alone in their struggle and were suffering from a lack of support (Facchin et al., 2018). Therefore, a perceived lack of social support negatively impacted their mental health, resulting in loneliness and diminished wellbeing (Facchin et al., 2018). However, perceived social support is yet to be investigated in this population with the variables of illness invalidation and hopelessness. These variables together will offer great insights into the potential protective and buffering role of perceived social support against illness invalidation in the workplace and its effect on hopelessness. There is a clear need to examine the impact of illness invalidation in the workplace on hopelessness in individuals with endometriosis, due to the pervasive impact of their symptoms and experiences on their mental health. Examining these variables in the current study will help to offer greater insights into the lived experiences of those with endometriosis, ultimately hoping to foster understanding. By examining the impact of perceived social support on these variables, this may assist in revealing a potential protective factor against illness invalidation in the workplace and its effect on hopelessness. It is expected that that the research will reveal how the higher the degree of illness invalidation for individuals with endometriosis in the workplace, then the higher their feelings of hopelessness. Additionally, it is expected that a higher degree of perceived social support will moderate this relationship, such that individuals who perceive greater social support will experience lower levels of hopelessness despite high levels of illness invalidation in the workplace. Within the workplace, a factor that may be linked to perceptions of stigma in individuals with a chronic illness is Psychosocial Safety Climate (PSC). This refers to workplace policies, practices, and procedures for the protection of worker psychological health and safety (Dollard & Karasek, 2010). Psychosocial safety climate is an organisational resource that shapes working conditions through job demands and resources, which, when unbalanced, can cause stress and affect motivational outcomes like work engagement in employees (Dollard & Bakker, 2010). Only one study has investigated the association between PSC and motivational work outcomes like work engagement and turnover intentions in employees with chronic illnesses (DeOrsey & Agars, 2024). The study found that psychosocial safety climate as a resource successfully reduces psychosocial demands like anticipated stigma attributed to their health conditions, leading to more work engagement and reduced turnover intentions. Anticipated stigma was found to partially explain how strong PSC leads to more engagement and lowered turnover intentions in individuals living with chronic illnesses. Qualitative studies explain that a positive psychosocial environment enables continued workforce participation among those with chronic illnesses like endometriosis by facilitating opportunities for them to disclose information about their illness and request essential support at the workplace (Krsmanovic & Dean, 2021). A significant gap exists in quantitatively understanding how PSC specifically impacts employees with endometriosis in association with other variables in this study. PSC comprises four dimensions (Hall et al., 2010): management priority, management commitment, organizational communication, and organizational participation in protecting psychological health and safety. Specifically, studying these dimensions in relation to stigma and work outcomes for employees with endometriosis could help develop more focused support strategies. Drawing from the relationship between PSC and worker outcomes described above in the study by DeOrsey & Agars (2024), work engagement is another variable of interest. Work engagement represents a persistent positive mental state characterised by vigour (energy and resilience), dedication (involvement and enthusiasm), and absorption (concentration and immersion in tasks), showing how employees form a meaningful and lasting connection with their work (Schaufeli & Bakker, 2004, p.4). Work engagement is significant for employees as it contributes to burnout prevention (Gracie-Sierra et al., 2016) and also prevents workers from thinking about leaving the organisation thus affecting turnover intentions in them (Memon et al., 2020). DeOrsey & Agars (2024) found that strong psychosocial safety climate boosts work engagement specifically in chronically ill employees partly by reducing anticipated st