{"paper_id":"196a2b67-038e-488a-9378-2681ed17eb97","body_text":"https://doi.org/10.1177/00812463241227319\nSouth African Journal of Psychology 2024, Vol. 54(1) 23 –34 © The Author(s) 2024\nArticle reuse guidelines: sagepub.com/journals-permissions\nDOI: 10.1177/00812463241227319 journals.sagepub.com/home/sap\n“I just want to stay here and sleep \nforever”: South African patients’ \nlived experiences of chronic fatigue \nin endometriosis\nAlexandra Spyrelis1 , Zamafiso Nombulelo Sibande1,  \nMaria E. Loades2 and Rizwana Roomaney1\nAbstract\nChronic fatigue is a distressing symptom for endometriosis patients but is not widely \ninvestigated in the literature. Our aim was to explore patients’ lived experiences of chronic \nfatigue and how they make meaning of it. We analysed a subset of data from seven severely \nfatigued endometriosis patients, drawn from a broader qualitative study in South Africa, using \nan interpretive phenomenological analysis. Three superordinate themes and eight subordinate \nthemes were developed. The three superordinate themes were powerlessness, which was a core \naspect of the chronic fatigue experience among participants; struggle and anguish, as their lives \nhad become a daily struggle resulting in feelings of despair and anger; and otherness, as they felt \ndifferent from their peers due to the fatigue. The findings demonstrate the far-reaching effects \nthat chronic fatigue has in the lives of endometriosis patients, including on their self-perception, \nand highlights the critical need for fatigue management strategies within treatment protocols.\nKeywords\nChronic fatigue, endometriosis, endometriosis-related fatigue, interpretive phenomenological \nanalysis, South Africa\nEndometriosis is a complex, poorly understood disease that is estimated to affect between 2% \nand 10% of women globally (Dunselman et al., 2014). It is defined as the presence of endome-\ntrial-like tissue in locations outside the uterus, which results in the development of adhesions, \nlesions, scar tissue, and cysts (Burney & Giudice, 2012). Common disease symptoms include \n1Department of Psychology, Stellenbosch University, South Africa\n2Department of Psychology, University of Bath, United Kingdom\nCorresponding author:\nAlexandra Spyrelis, Department of Psychology, Stellenbosch University, Matieland, Stellenbosch 7602, South Africa. \nEmail: aspyrelis@gmail.com\n1227319 SAP0010.1177/00812463241227319South African Journal of PsychologySpyrelis et al.\nresearch-article2024\nArticle\n\n\n24 South African Journal of Psychology 54(1)\nheavy menstrual bleeding, chronic pelvic pain, and infertility (Dunselman et al., 2014). \nEndometriosis is a chronic, progressive disease with no known cure and limited treatment \noptions involving surgery or hormonal pharmacotherapy (Bedaiwy et al., 2017). The exact prev-\nalence rates for endometriosis in South Africa are unknown, as are those for sub-Saharan Africa \n(Menakaya, 2015; Roomaney & Kagee, 2018).\nOne of the symptoms often overlooked in both the literature and treatment protocols is chronic \nfatigue, which is significantly more prevalent among endometriosis patients than the general \nfemale population (Ramin-Wright et al., 2018). The association between fatigue and endometriosis \nhas been found to persist even after controlling for possible confounding factors such as pain, \ninsomnia, and depression (Ramin-Wright et al., 2018). Chronic fatigue profoundly affects patients’ \nlives and its impact on their physical, emotional, and psychological wellbeing has been docu-\nmented in various studies (Álvarez-Salvago et al., 2020; DiBenedetti et al., 2020; Mundo-López \net al., 2020). Fatigued patients have higher rates of work absenteeism and lower work ability \n(Hansen et al., 2013; Soliman et al., 2021). Fatigue also impacts patients’ social activities and rela-\ntionships, resulting in less time spent with family and a reduction in intimacy with partners (Cole \net al., 2020; DiBenedetti et al., 2020). Similar findings have been reported for South African \npatients (Roomaney & Kagee, 2018).\nThe impact of fatigue in endometriosis is similar to that reported by people living with other \nillnesses for which chronic fatigue is a symptom (Bootsma et al., 2020; Hewlett et al., 2005). \nEndometriosis patients find chronic fatigue distressing; its impact on quality of life and productiv-\nity places a great burden on them and their families (DiBenedetti et al., 2020; Mundo-López et al., \n2020; Ramin-Wright et al., 2018). However, despite its incapacitating nature, there is a dearth of \nliterature on its pathophysiology and treatment (Ramin-Wright et al., 2018). While it is likely that \nits aetiology is multidimensional, nonpharmacologic interventions that have been used to treat \npersistent fatigue in other chronic diseases with some success have yet to be developed for this \npatient population (Hewlett et al., 2011; van den Akker et al., 2016; Wu et al., 2019). A critical first \nstep in developing such interventions is understanding how endometriosis patients experience and \nconceptualise fatigue.\nTo this end, the authors conducted a literature search across various databases (EBSCOhost, \nProQuest, PubMed, and ScienceDirect), which revealed no studies focused on these phenomena. \nTo begin to address this gap, the researchers conducted a qualitative study among endometriosis \npatients to explore their experiences of chronic fatigue. Patients in the study reported a range of \nfunctional limitations, highly personalized coping mechanisms, and a lack of available treatment \nstrategies from health care practitioners (Sibande & Roomaney, 2022). For this article, the authors \nanalysed a subset of these data using interpretive phenomenological analysis (IPA) to explore \npatients’ lived experiences of chronic fatigue and how they made meaning of it.\nMethods\nParticipants\nThe study formed part of a broader project conceptualised by the third and fourth authors (MEL \nand RR, respectively) and was undertaken by the second author (ZNS) under their guidance, while \nthe first author (AS) joined the project after the data had been collected. ZNS used purposive sam-\npling to recruit 25 endometriosis patients who experienced severe fatigue via social media and the \nEndometriosis clinic at Tygerberg Hospital in Cape Town, South Africa. ZNS visited the clinic \nweekly and posted a study advert on the Facebook page of two local support groups in order to \nrecruit participants. Eligibility criteria included the following. Participants had to be 18 years or \n\nSpyrelis et al. 25\nolder, formally diagnosed by a gynaecologist, and experiencing fatigue that impaired daily func-\ntioning. Fatigue severity was measured by asking participants to rate their fatigue on a scale of 1 to \n10, with 1 indicating almost no fatigue and 10 indicating very severe fatigue. Only patients with a \nrating of 6 or higher were included in the study. This cut-off point was used to distinguish moderate \nto severe fatigue and was determined based on informal feedback provided by lived experience \nadvisors. Eligible, interested patients provided written informed consent and were interviewed \nface-to-face. The participants ranged in age from 22 to 45 years (median age: 36 years), with a \nmedian duration since diagnosis of 4 years (range: 6 months–21 years).\nInstruments\nThe second, third, and fourth authors developed a semi-structured interview guide to explore the \nfatigue experiences of participants, including questions about how they described fatigue, the \nimpact it had on their lives, the strategies they employed to manage it, and the support they received \nfrom others. ZNS conducted the interviews in English (92%) and Afrikaans (8%) based on respond-\nent preference.\nEthical considerations\nEthical approval for this study was provided by the Health Research Ethics Committee (HREC) at \nStellenbosch University as well as the Western Cape Department of Health. Interviews lasted \nbetween 30 and 76 min (mean: 40 min). Participants who experienced any distress as a result of the \ninterview could contact the researchers to access counselling services that were made available. \nThe interviews were transcribed verbatim, and transcripts were checked against the audio record-\nings for accuracy, after which they were loaded into Atlas.ti version 8 for analysis.\nData analysis\nGiven the exploratory nature of the study, the authors initially analysed the data for breadth to gain \nbetter insight into this understudied phenomenon. The full sample of transcripts was analysed uti-\nlizing a data-driven, deductive thematic analysis (TA) to focus on the more pragmatic elements of \nthe data (Braun et al., 2015), for which the results are presented elsewhere (Sibande & Roomaney, \n2022). While conducting the TA, the authors noted some particularly rich interviews that contained \nnovel insights and interesting self-reflections regarding the experience of chronic fatigue, for \nwhich they kept a list of transcripts, and which prompted a subsequent analysis to assess latent \nmeanings within the data.\nAS utilized IPA for the subsequent analysis given its wide use in health psychology to explore \nhow participants make sense of their own experiences (Brocki & Wearden, 2006). IPA’s theoreti-\ncal underpinnings are grounded in phenomenology and hermeneutics, focusing on the meanings \nthat individuals ascribe to events, which are accessible through interpretative activity (Biggerstaff \n& Thompson, 2008). IPA is a useful methodology for analysing ambiguous, complex, or emo-\ntionally laden topics, and involves a two-stage interpretative process, or double hermeneutic, \nwhereby the researcher attempts to make sense of the participants attempting to make sense of \ntheir worlds (Smith & Osborn, 2015). While the approach to the exploratory qualitative study \nwas not informed by IPA from the outset, qualitative data tend to be complex, enabling the use \nof a range of analytical approaches to unpack different possible meanings within it, or what \nClark et al. (2015) refer to as analytical pluralism. The breadth and depth of experience shared \n\n26 South African Journal of Psychology 54(1)\nby study participants using the semi-structured interview schedule meant that the data were suit-\nable for IPA. Furthermore, the exploratory study was phenomenological in that it sought to \nunderstand and describe the lived experiences of chronically fatigued endometriosis patients to \ngain deeper insight into how they understand these experiences.\nOf the 11 transcripts containing particularly rich data, a smaller, homogeneous group was iden-\ntified for the IPA, consisting of seven female patients who were over the age of 25 years, had \nundergone at least one surgery (and would therefore have expected some relief from the symp-\ntoms), and had an advanced stage of the disease.\nIn undertaking the IPA, AS followed the process outlined by Smith and Osborn (2003), which \ninvolved reading the first transcript multiple times and noting interesting or significant aspects in the \nmargin. These were converted into emergent themes at a higher level of abstraction during subse-\nquent readings of the transcript. Connections were subsequently sought between these themes, \nresulting in a cluster of superordinate and subordinate themes. The same procedure was applied \nwhen analysing the remaining transcripts, after which AS, MEL, and RR reviewed the themes to \nexplore convergences and divergences in the data. This informed the development of a master table \nof superordinate themes, ensuring that they formed a good representation of the transcripts.\nThe participants whose transcripts were selected for the analysis using IPA ranged in age from \n28 to 43 years and were all employed on a full-time basis (Table 1). Three of the participants were \nmarried, three were single, and one was separated. One participant lived alone, four lived with \nother adults, and two lived with children. Four participants had graduated from university. The \nnames of participants have been changed to protect their identities.\nSeveral strategies were employed to enhance trustworthiness in the data collection and analysis \nprocess. The interviews were audio-recorded to ensure that the accuracy of the data contained in \nthe transcripts could be verified. ZNS and RR met on a weekly basis throughout the data collection \nperiod to reflect on the data and how future interviews could be improved. Upon joining the pro-\nject, AS listened to the recordings while reading through the transcripts to ensure that they accu-\nrately reflected the discussions. Finally, while undertaking the subsequent analysis, AS shared and \ndiscussed the codes with ML and RR who were very familiar with the data.\nResults\nThree superordinate themes and eight subordinate themes were developed. The three superordinate \nthemes were powerlessness, which was a core aspect of the chronic fatigue experience among \nparticipants; struggle and anguish, as their lives had become a daily struggle resulting in feelings \nof despair and anger; and otherness as they felt different from their peers due to the fatigue.\nTable 1. Participant characteristics.\nParticipant pseudonym Age Years since diagnosis Disease stage Employment status\nTanya 28 1 4 Full-time\nLynne 36 3 4 Full-time\nViola 43 5 4 Full-time\nKhethiwe 40 9 3 Full-time\nCara 34 9 4 Full-time\nBusisiwe 29 7 3 Full-time\nJulia 43 2 4 Full-time\n\nSpyrelis et al. 27\nPowerlessness\nThe enemy within. Participants described chronic fatigue as a type of ghost that had taken control \nof their bodies:\nIt’s like having this monster in your life. It’s like having a ghost. It’s like battling with this ghost that \nrefuses to go away, that does what it wants to do, whenever, however, it wants to do it. Nothing you say, \nnothing you do, will take this thing away. This monster is saying, ‘when I’m here in your life you just obey \n. . . you know you just bow down to me and say do what you want to do, allow me, because of regardless \nif you fight me or not I am here’ . . . (Busisiwe)\nI don’t know what word I can call it. Evil. I don’t know. Because it’s like such cruelty man. (Tanya)\nBusisiwe and Tanya both externalize fatigue as something that is happening to them, over which \nthey have no control. The use of words like ‘ghost’, ‘monster’, and ‘evil’ denote the presence of an \nexternal being with malevolent intentions that haunts or torments the women. Tanya’s use of the \nword ‘cruelty’ suggests fatigue as something sinister that aims to create suffering or punishment. \nFurthermore, ghosts or monsters are often described as being seen by some people but not others, \nwhich implies that fatigue is hidden or invisible to those not affected by it. In the broader qualita-\ntive study, many participants spoke about the invisibility of fatigue because they appeared healthy \non the outside. In addition, participants described not being able to fight against the fatigue, which \nhas power over them, indicating their vulnerability and their sense of lacking control over their \nbodies. The repeated use of words like ‘fight’ and ‘battle’ by participants liken having fatigue to \nbeing in a war zone, where the women are fighting against the odds.\nBeing crushed. Most participants also described fatigue as a feeling of physical heaviness, where \nthey felt as though they were being weighed down or crushed. Julia and Khethiwe described a \nsense of heaviness in their heads when trying to get out of bed in the morning, while Violet likened \nfatigue to being crushed by an elephant:\nI, sometimes in the mornings, feel as if there is a stone in my head. I cannot get up, my head doesn’t want \nto lift. (Julia)\nIt becomes so much of a struggle to get out of bed. It’s like there’s a magnet between your head and your \npillow. (Khethiwe)\nIt feels like you have this elephant sitting on your chest, and it is just pressing you down all the time, so \nyou feel weighed down. Your body feels heavy. (Violet)\nThe likening of fatigue to a feeling of physical heaviness indicates that the participants experience \nit as being overpowering and that they do not have the strength to resist it. They felt trapped by the \nfatigue, which is difficult to ‘carry’ or ‘lift’ and is the opposite to feeling light or free. The women \nreported having to expend great effort to overcome this weight, which left them feeling weaker, \nand also required them to expend immense effort to carry out mundane tasks, with which they \nstruggled. This again points to participants’ sense of powerlessness and lack of control that stems \nfrom living with chronic fatigue.\nLifelessness. The participants also compared fatigue to being lifeless. In her description, Tanya \nrefers to her blood, which symbolizes vitality and life, draining out of her body, leaving her feeling \n\n28 South African Journal of Psychology 54(1)\nlifeless and unable to do anything. Some of the participants also referred to death, saying that they \nwere ‘dead tired’ or felt ‘dead inside’. Busisiwe again refers to an external malevolent being, but \nthis time it is one that ‘steals’ her soul. The experience of being alive but feeling ‘dead’ or ‘soulless’ \nindicates that the participants feel as though they are lacking their inner essence and that they are \njust hollow shells of themselves. There is no ‘fuel’ left in the tank, with all of it having been taken \nor having seeped out. There is a sense of doom, with fatigue taking away their vitality and leaving \nthem with nothing:\nI just sit and do nothing. At work also, I’ll just sit like this. Just to recuperate, sort of. That’s all I do, there’s \nnothing else I can do. I usually also tell my mom it feels like all the blood just drained out of my body. \n(Tanya)\nBut it does, it does kind of hold you back in your life. It’s like somebody robbing you of your soul and \nexpecting you to still live, you know. (Busisiwe)\nStruggle and anguish\nAn everyday struggle. Cara and Khethiwe both reference the immense struggle they face each day in \nperforming regular activities as a result of the fatigue. They were overwhelmed with a sense of \nexhaustion, even waking up feeling this way in the morning. They experienced an extreme need to \nsleep or rest but never actually felt rested. The participants reported that they had to ‘push’ them-\nselves to do regular things like get out of bed, which indicates a need for force to be used. The \nfatigue made it difficult for them to do things, which in turn became things that they did not want \nto do, resulting in a need for them to go against their natural inclination. There was much internal \nstruggle as participants put up a fight against themselves to get through a regular day and they felt \nas though life was simply too much to cope with:\nWhen I wake up it’s like a struggle because you wake up and you are like ‘has the alarm already gone off?’ \nAnd you are so tired, you don’t want to really get out of bed, but you must push yourself because you need \nto work. And so I normally feel drained, like someone that has been out all night, you feel like that tired, \ntired feeling. I’m just permanently tired.\nIt’s like you waking up feeling like you’ve had a hard day already. (Cara)\nEverything becomes so much of a struggle. Walking from here, going upstairs. They’ll tell you they know \nwhen I’m coming up because I’ll be panting and huffing. It’s very difficult. It’s very difficult because the \nsimplest things I’m telling you, standing up from here to there, it can be quite a mission, which it shouldn’t \nbe. These are the simplest things in life. (Khethiwe)\nFrustrated outrage. The constant struggle participants were engaged in to ‘get through the day’ \nresulted in much anger and frustration for them:\nYou get frustrated in many ways, especially if you’ve got a lot of responsibilities that await you and now \nyou can’t do anything again for another day. You know I have given up when it comes to endometriosis. \nAt some point I felt very angry. (Busisiwe)\nIt is very frustrating, because I want to do more but my body is not allowing me to. (Julia)\n\nSpyrelis et al. 29\nBusisiwe and Julia both expressed frustration and anger at the fact that they could not do what they \nneeded or wanted to do as a result of the fatigue. They were incapacitated and felt that they had no \ncontrol over their lives. Julia said that her body ‘will not allow’ her to do more, which again points \nto a feeling of not having control or being powerless and trapped. The participants directed this \nanger towards their own bodies, expressing a sense of betrayal in that their bodies have ‘let them \ndown’. They were disappointed as a result, which also created a sense of failure. In the face of this \nfailure, participants have become angry and resentful, which has led some of them to resign or sur-\nrender themselves to the disease as they do not believe it will ever get any better.\nDespair. The participants expressed much anguish and sadness as a result of having to live with \nchronic fatigue. Many participants were visibly distressed during the interviews and cried or \nbecame emotional when talking about how it had impacted their lives. They also talked about per-\nvasive sadness:\nA lot of times I feel depressed because of how I feel. (Lynne)\nWaking up tired is not nice. It’s like ‘oh my word another day, the day come so quick, why am I so tired’, \nlike you question yourself. And sometimes you are just so tired and you don’t enjoy things as you used to. \nIt’s like life hasn’t seemed as enjoyable as it used to be. (Cara)\nBoth Khethiwe and Lynne refer to feelings of depression that emanate from being fatigued. Cara \nfurther describes how she had lost any sense of enjoyment in her life as a result of the fatigue. In \nthe quote Cara seemed exasperated about how quickly the days passed and yet how she felt tired \non each one of them. The constant fatigue was overwhelming and created much despair among \nparticipants, who felt hopeless and doomed to feel this way for the rest of their lives. They also \nstruggled with sadness from not being able to live their lives the way that they want to.\nOtherness\nAbnormal. The participants described how their energy levels differed from those of others:\nI don’t have the energy that you have. I’m not normal as you are, as much as I try to be as functional as \neverybody in the office or at home does. I’m not normal, I am not like you. (Busisiwe)\nIt’s actually sad, because, why? It’s like you question yourself, ‘why can’t I be like other people? Why \ncan’t I also have that old energy level like other women?’ (Cara)\nBoth Cara and Busisiwe describe feeling different from other people, who were able to go about \ntheir business every day, while they struggled due to the ever-present fatigue, which made it dif-\nficult for them to function. This resulted in feelings of abnormality and otherness, where partici-\npants felt as though they are separate from the people around them. The participants reported \nfeeling isolated and alone and some expressed feelings of jealousy about how other people had \nsufficient energy to lead ‘normal’ lives. Participants also felt confused about why they were dif-\nferent and expressed a sense of victimhood as a result, feeling as though they have been singled \nout in some way for suffering. The participants felt like they were being denied a normal life and \ndid not understand why they had to suffer in this way. They felt that it is unfair and expressed \nresentment towards being different from others. There was also a sense of loss of normality and \nfunctionality as a result of the fatigue, which made participants feel inadequate and less worthy \n\n30 South African Journal of Psychology 54(1)\nthan their peers. The participants problematised their bodies and saw themselves as outsiders as a \nresult of the fatigue.\nOld before their time. The participants also referred to feeling aged despite being young. Tanya \ndescribed how living with persistent fatigue made her feel as though she was much older than her \nbiological age, making her feel old prematurely. The participants spoke about how they ‘should’ \nfeel, namely young and energetic and able to do what ‘young people do’. They felt cheated at lack-\ning youthful energy and vibrance and felt that their bodies had failed to live up to their expecta-\ntions. There was a sense of inadequacy when comparing themselves to peers their age, referencing \nhow higher energy levels seemed to come naturally to others, about which they felt resentful and \ndisappointed. The participants also expressed nostalgia for the time in their lives before they started \nstruggling with fatigue:\nEverything is basically frustrating because I’m like, I’m not even 30 yet, why must I be so tired? And I feel \nlike an old person that just doesn’t have energy levels, and I just don’t feel like doing anything. (Tanya)\nIt makes me feel sad, because then you now sit with ‘Lord, why me?’ type of stuff, because everybody’s \nyoung, everybody’s doing what they’re supposed to. (Tanya)\nDiscussion\nThe current study explored how women living with endometriosis experience chronic fatigue using \nIPA, focused on a subset of data from seven participants who took part in a broader qualitative study. \nThe participants in this study described the profound impact that chronic fatigue has on their sense \nof self. The fatigue experience had become such an integral part of their lives that it forms part of \ntheir self-identity and the way that they perceive their lives. This finding is consistent with the litera-\nture on chronic illness more generally (Horky et al., 2017; Nettleton, 2021; Oris et al., 2018).\nBury’s (1982) influential concept of chronic illness as a ‘biographical disruption’ is useful for \nunderstanding how illness can result in changes to a patient’s identity and consists of three key \naspects. First, a patient’s attention is drawn to bodily states that usually go unnoticed, thereby dis-\nrupting their ‘taken-for-granted’ assumptions and behaviours. This is followed by more profound \ndisruptions in the way that patients perceive themselves, or a loss of self that forces them to rethink \ntheir personal identity, followed by the disruption that ensues in having to cope with their altered \nsituation and reassess their lives (Bury, 1982). In the current study, patients struggled to perform \ntasks that they used to take for granted and they were so used to feeling fatigued all the time that \nthey struggled to define who they were outside of it, which is consistent with this concept.\nThe functional limitations that the participants described are intertwined with a sense of uncer-\ntainty because their bodies often do not meet their expectations. Carel (2016) argues that individu-\nals care more about what they can do with their bodies than about the body itself and therefore \nplace great value in taking part in activities. Good health brings a sense of control and being able \nto predict one’s bodily experiences, which creates a sense of certainty. Thus, chronic illness is \nassociated with a sense of uncertainty and has been noted in studies among people living with \nmultiple sclerosis (Alschuler & Beier, 2015; van der Meide et al., 2018). The participants in this \nstudy expressed a general lack of control over their bodies due to the fatigue.\nCarel (2016) also posits that bodily doubt is a central experience of chronic illness and is \ninvolved in the shift from health to illness. Bodily doubt is not exclusively cognitive, but rather \nexperienced as anxiety at a bodily level and involves hesitancy regarding activity. Merleau-Ponty \n(1996) similarly states that individuals experience the immediate environment through their \n\nSpyrelis et al. 31\nbodies. When a body operates in accordance with an individual’s expectations, it becomes invisible \nand is not really appreciated. However, when this is not the case, the focus shifts from the sur -\nrounding environment to the body itself. The women in this study described their experience of \nliving with chronic fatigue as being in a body that is strange to them. Their fatigued bodies ruled \nover them because they had to plan their lives and activities around the fatigue. Their bodies were \nunpredictable, which had a great impact on their daily functioning. This gave rise to a feeling of \nbeing absent, in that they inhabited bodies that no longer supported their participation in everyday \nlife. Participants described feeling imprisoned in a stranger’s body and that life appeared to be \npassing them by without them being a part of it.\nThe sense of powerlessness among participants that stemmed from persistent fatigue hugely \nimpacted their quality of life. Strandmark (2004) argues that powerlessness is at the core of illness \ngiven the limitations it places on an individual’s autonomy, its threat to their existence, and the \nfeeling of imprisonment it evokes, which causes great anguish. This was seen among the partici-\npants, who depicted fatigue as taking on a life of its own, which rendered them powerless and \ncreated much anguish and despair. These themes have similarly been identified in studies among \npatients living with other chronic diseases of which fatigue is a common symptom, such as rheu-\nmatoid arthritis (Hewlett et al., 2005).\nFinally, the despair expressed by the participants is consistent with depressive symptomatology. \nDepression and fatigue can be difficult to differentiate since fatigue is often associated with depres-\nsion and is a key symptom of major depressive disorder (Billones et al., 2020). Diagnoses of \ndepression are common among women living with endometriosis (Young et al., 2015).\nConclusion\nTo the authors’ knowledge, this is the first study to explore the fatigue experiences of endometrio-\nsis patients using IPA. The study contributes to deepening our understanding of endometriosis \npatients’ experiences of chronic fatigue, highlighting the far-reaching effects that fatigue has in \ntheir lives and the critical need for fatigue management strategies within endometriosis treatment \nprotocols. Further research is required to design effective treatment strategies.\nWhile many participants became distressed during their interviews, they expressed gratitude \ntowards the interviewer for the opportunity to speak about their fatigue experiences, with some \nwomen having discussed it for the very first time. They also reported gaining a sense of validation \nfrom their condition being recognized by the interviewer. Thus, treatment approaches should pro-\nvide these patients with opportunities to talk about and validate their experiences, alongside pro-\nviding support and suggestions for effective coping mechanisms and treatment.\nLimitations\nThis study has several limitations. As with any qualitative study, the degree to which the findings \nmay be representative of other endometriosis patients is limited. The self-selected sample of \nwomen who had mostly attained tertiary education, were fully employed, and were required to \nhave had a surgical diagnosis likely excludes a reasonable portion of the population living with the \ndisease in South Africa. Differences in the experiences and perceptions of fatigue may exist in \nother patient sub-populations. The study also relied upon respondents to self-report chronic fatigue, \nwhich is both highly subjective and a difficult symptom to understand. Finally, applying IPA at the \nanalytical stage, once data had already been collected, may have limited the interpretive process in \nterms of understanding the essence of participants’ experiences.\n\n32 South African Journal of Psychology 54(1)\nAcknowledgements\nWe are grateful to the women who volunteered to participate in the study for their invaluable contributions \nand for sharing private details about their lives.\nDeclaration of conflicting interests\nThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publica-\ntion of this article.\nFunding\nThe authors disclosed receipt of the following financial support for the research, authorship, and/or publica-\ntion of this article: This study was supported by a National Research Foundation (NRF) Thuthuka grant. The \nopinions and conclusions of this article are those of the authors and should not be attributed to the NRF. MEL \nis funded by the National Institute for Health Research (NIHR Advanced Fellowship, 302929). This report is \nindependent research. The views expressed in this publication are those of the authors(s) and not necessarily \nthose of the NHS, NIHR or the Department of Health and Social Care. AS is supported by the National \nInstitute for the Humanities and Social Sciences (NIHSS).\nORCID iDs\nAlexandra Spyrelis  https://orcid.org/0000-0001-7719-5414\nRizwana Roomaney  https://orcid.org/0000-0002-3585-4992\nReferences\nAlschuler, K. N., & Beier, M. L. (2015). Intolerance of uncertainty: Shaping an agenda for research on coping \nwith multiple sclerosis. International Journal of MS Care, 17(4), 153–158. https://doi.org/10.7224/1537-\n2073.2014-044\nÁlvarez-Salvago, F., Lara-Ramos, A., Cantarero-Villanueva, I., Mazheika, M., Mundo-López, A., Galiano-\nCastillo, N., Fernández-Lao, C., Arroyo-Morales, M., Ocón-Hernández, O., & Artacho-Cordón, F. \n(2020). 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