Armand Bam*†
Joy Lulema- Stellenbosch Business School, Stellenbosch University, Cape Town, South Africa
This article explores how professionally employed women living with systemic lupus erythematosus (SLE), a chronic, fluctuating, and largely invisible illness, navigate the relational and emotional demands of credibility, disclosure, and performance in the workplace. Using narrative-interpretive interviews with eight women in cognitively and emotionally demanding roles, the study draws on feminist disability theory to examine how inclusion is co-produced through interpersonal discretion, emotional restraint, and invisible labor, rather than guaranteed through formal policy. The analysis identifies four recurring tensions between disclosure and protection, credibility and capacity, aspiration and sustainability, and policy and practice which converge in the concept of Contingent Coherence. This term captures the continuous, relational effort to maintain professional viability in systems that overlook episodic fluctuation. Drawing on the findings we also propose a Relational Framework of Inclusion, underpinned by three enabling conditions, trust, responsiveness, and ethical proximity, as essential to fostering supportive environments for employees with invisible illnesses. By foregrounding the lived negotiations of workplace inclusion, this article contributes to critical HRM, feminist disability studies, and organizational behavior literature. It argues that inclusion must be understood not as a fixed institutional achievement, but as a fragile, relational practice sustained through emotional labor, managerial discretion, and mutual intelligibility.
1 Introduction
Although workplace inclusion is often addressed through legal frameworks, accommodation policies, and equity strategies, these approaches frequently overlook the everyday dynamics through which inclusion is enacted or withheld. In particular, employees with invisible, episodic, and stigmatized conditions must navigate complex relational terrain that policies alone cannot account for. Systemic lupus erythematosus (SLE), with its unpredictable flares and lack of visible markers, exemplifies the difficulty of maintaining credibility, agency, and professional participation in environments that reward constancy and visibility.
Contemporary HR literature increasingly acknowledges that inclusion is not only a policy outcome but also a relational process shaped by voice, visibility, and silence (Simpson and Lewis, 2005). Far from being a neutral act, disclosure by these individuals is influenced by perceptions of managerial empathy, organizational norms, and the fear of being seen as unreliable or less competent (Jammaers et al., 2016). Similar dynamics have been observed in studies of mental illness, where disclosure often leads to stereotyping and discrimination, while concealment creates self-stigma and misattributions about work performance (Colella and Santuzzi, 2024). For individuals with chronic and contested illnesses, silence can serve as both a coping strategy and a response to anticipated stigma (Monaghan and Gabe, 2019). These dynamics are amplified in environments where the ideal worker is presumed to be endlessly available, consistent, and emotionally contained.
Feminist disability scholars have critiqued how organizational norms rely on unspoken assumptions of bodily endurance, aesthetic conformity, and emotional resilience (Garland-Thomson, 2002; Kafer, 2013). Yet much of this scholarship has focused on visible and stable impairments, those that more easily trigger recognition and accommodation, leaving episodic, fluctuating conditions like SLE at the periphery of both HRM frameworks and disability discourse (Mik-Meyer, 2016). This neglect has consequences not only for understanding exclusion, but for theorizing how inclusion is relationally enacted and emotionally navigated in the workplace.
By centering the voices of women with SLE, this study explores how inclusion and exclusion unfold not as abstract outcomes, but through everyday acts of discretion, over-performance, concealment, and strategic withdrawal. These narratives do not simply reveal institutional shortcomings; they expose how inclusion is contingent on the discretionary power of individual managers, the (in)visibility of symptoms, and the willingness of employees to perform composure under pressure. The analysis engages critically with assumptions in HR discourse that inclusion can be legislated or standardized, and instead foregrounds the micro-dynamics of trust, silence, and survival that define working life for many disabled professionals.
2 Literature review
2.1 Visibility, silence, and the politics of disclosure
In contemporary organizational settings, inclusion is often framed as a function of transparency and voice. Yet for employees with chronic, invisible conditions, silence may be a strategic necessity rather than an absence of agency (Maji and Dixit, 2024; Simpson and Lewis, 2005). Silence, in this sense, is not simply withholding; it is a relational practice shaped by context, history, and organizational tone. As Kulkarni (2022) notes, the politics of disclosure are deeply shaped by organizational contexts, where individuals often self-police in response to anticipated perceptions of legitimacy and normality. In such settings whose voices are heard and what forms of expression are deemed credible are contingent on broader power dynamics within the workplace.
Similarly, in their study, Bam (2025) showed that disclosure is never neutral. It unfolds in relation to power, trust, and perceived risk. For individuals managing episodic conditions like SLE, the stakes are particularly high, shaped by the illness's unpredictability and the ongoing effort to maintain professional credibility. This echoes Riessman's (2005) observation that illness narratives are constrained by what institutions can hear and support. Disclosure is not simply a decision; it is a social negotiation of intelligibility, of rendering one's illness comprehensible and legitimate within dominant organizational norms. This negotiation becomes especially fragile when the condition, like SLE, resists easy recognition or categorization.
Scholarship in organizational behavior has pointed to the discretionary nature of inclusion, particularly for conditions that defy visible confirmation (Mik-Meyer, 2016). In her analysis of how disability is “read” in the workplace, Mik-Meyer highlights the interpretive labor expected of chronically ill employees to prove or explain their condition in ways legible to managerial and collegial norms. Employees may engage in acts of silence, not because they lack voice, but because organizational logics continue to reward physical consistency, emotional self-regulation, and uninterrupted productivity. These norms function as gatekeepers, privileging bodies that are legible, reliable, and easily managed (Davis, 2002; Gould et al., 2022). These dynamics mirror findings in other professional domains such as healthcare, where employee silence is increasingly understood as a complex and context-sensitive response to organizational culture and perceived risk (Lainidi et al., 2023). Voice and silence often co-exist, influenced by emotional energy, power structures, and the fragility of institutional responsiveness. In such contexts, silence becomes a form of tactical endurance a way of staying employed, even when unwell.
While disclosure in this study is framed primarily as risk-laden, some scholars argue that it can also function as a pathway to empowerment particularly when organizations create predictable, rights-based mechanisms for support (Camacho et al., 2020; Gignac et al., 2021). In such contexts, disclosure enables recognition, legal protection, and inclusion into formal diversity systems. Yet, these structural assurances are often absent or precarious. Consistent with this, recent HRM evidence shows that climates explicitly supportive of disclosure are associated with better work outcomes, whereas unsupportive climates discourage disclosure and exacerbate negative consequences (Lyubykh et al., 2025). At the same time qualitative HRM research shows that common accommodation approaches can themselves reproduce stigma, generating “business based” (transactional) and “care-based” (paternalist) forms of structural stigma that mark employees as less capable or exceptional cases (Kalfa et al., 2021).
While HR literature has begun to address disability inclusion, much of this work still operates through compliance and accommodation frameworks. Recent research shows that a supportive health and wellbeing climate backed by supervisor engagement can directly reduce emotional exhaustion and disability claims, emphasizing the need for organizations to move beyond discretionary accommodations and toward systemic relational investment (Beauchamp Legault et al., 2025). Compliance focused frameworks often assume that the need for support is visible, static, and easily disclosed. However, the lived realities of episodic illness destabilize these assumptions, rendering inclusion less a policy outcome and more a daily act of negotiation (Bury, 1982). Less attention has been paid to the micro-dynamics of trust, discretion, and relational power that shape whether, when, and how employees feel able to reveal illness (Jammaers et al., 2016; Kulkarni, 2022). Theses authors highlight how disabled employees construct identities that engage with organizational norms while subtly resisting ableist expectations of consistency and control.
These dynamics are especially fraught in professional roles where capability and confidence are continually performed and monitored (Gagnon and Cornelius, 2000; Penpek et al., 2024). Within these high-responsibility contexts, disclosure risks not only visibility but the perception of diminished value. It is also important to consider that exclusion may not always stem from overt prejudice. As Norstedt (2019) and Araten-Bergman (2016) note, managers often lack the training, institutional clarity, or confidence to respond effectively to invisible or episodic disability. In these cases, silence becomes a two-sided phenomenon: employees conceal to protect themselves, and managers hesitate to act for fear of misstepping. While this mutual silence, where employees conceal their illness to protect themselves and managers hesitate to act may soften interpretations of managerial inaction, it underscores the need to move beyond discretionary inclusion and invest in sustained leadership development that frames responsiveness as a skill, not a personal trait. Recent research also shows that inclusive leadership behaviors, such as relational awareness and active engagement with employee wellbeing, significantly influence whether employees with invisible disabilities perceive their workplace as supportive (Chan and Hutchings, 2025). At the same time. Life course trajectories of SLE significantly shape how women experience disclosure, support, and work participation. Juvenile-onset cases often involve longer disease duration and higher cumulative damage than adult-onset, with earlier exposure to medicalization and family caregiving responsibilities (Gamal et al., 2022). In Sub-Saharan Africa, early onset SLE is frequently severe, with high rates of renal, cardiac, and hematological involvement, while adult onset is reported at a younger mean age than in many global cohorts (Budhoo et al., 2017). These trajectories intersect with gendered expectations, particularly for women approaching menopause, where medical, familial, and professional demands converge (Dai et al., 2025; Phuti et al., 2019).
2.2 Feminist disability perspectives on professional identity
Feminist disability theory offers a critical reimaging of organizational norms, disrupting dominant assumptions about professionalism, competence and inclusion. Rather than positioning disability solely as an individual medical deficit scholars such as Kafer (2013, 2019), Garland-Thomson (2002), and Fritsch (2016) foreground disability as a relational, political, and affective phenomenon produces through aesthetic expectations, institutional design, and neoliberal productivity logics.
In organizational contexts, this relational lens challenges how professionalism is both embodied and policed. As Garland-Thomson (2002) argues, dominant norms and standards of professional identity are grounded in “normate” assumptions, those that privilege physical wholeness, consistency, and aesthetic predictability. The performance of competence is therefore tethered to bodily norms: to upright posture, unbroken attendance, aesthetic conformity, and the ability to work without visible distress. These expectations are deeply gendered (Lewis and Simpson, 2010; Simpson and Lewis, 2005) requiring women to perform a dual embodiment of composure and care. And embedded within professional cultures that equate competence with consistency and emotional composure (Jammaers et al., 2016; Simpson and Lewis, 2005). Women professionals are often expected to embody a dual performance: demonstrating capability while maintaining care, and projecting confidence while expressing empathy (Lewis and Simpson, 2010). Chronic illness like SLE destabilize these performances, not only through fatigue and pain but through visible symptoms such as hair loss, swelling, or skin rashes (Garland-Thomson, 2002). These embodied changes disrupt not just functionality but the visual cues that signal competence and credibility within normative professional culture. In these moments, as Clare (2017) puts it, disability becomes both a site of exile and possibility, confronting the fragility of belonging in professional life.
Invisible or episodic disabilities amplify these tensions. Unlike visible disabilities that may prompt structural or environmental accommodations, invisible conditions necessitates the continual, internal negotiation of self-presentation, stamina, and credibility (Fevre et al., 2013; Mik-Meyer, 2016). Recent studies show how misrecognition and relational asymmetries, not individual deficits, drive exclusion, particularly when dominant norms fail to accommodate non-normative communication styles (Szechy and O'Donnell, 2024). The burden of managing invisibility in other words becomes individualized and relational performed through quiet endurance, emotional restraint, and strategically timed disclosures (Wilde and Fish, 2023). Drawing on Kafer's (2013) concept of “crip futurity” we can see how workplace systems and standard performance metrics rarely account for this labor, rendering it illegible within traditional HR frameworks. This aligns with findings from organizational behavior studies that highlight how affective climates and emotionally intelligent leadership can significantly shape employee wellbeing and perceived inclusion, particularly in high- responsibility roles (A'yuninnisa et al., 2024). Moreover, Fritsch's (2016) critique also highlights how neoliberal inclusion practices valorise only those forms of disability that can be “capacitated|” or rendered productive, often sidelining those whose conditions resist cure, stability or visibility. As a result, inclusion is not experienced as a guaranteed right but as a conditional achievement negotiated through interpersonal dynamics and tacit understandings (Millmark et al., 2025).
These critiques push organizational scholarship to move beyond accommodation and toward recognition not of fixed categories, but of bodily variation, fluctuation, and interdependence as inherent to human work. In doing so, they open new possibilities for understanding inclusion not as a reactive measure, but as a practice of relational accountability.
2.3 Labeling, relationship disruption, and the performance of fit
The act of disclosing illness introduces employees into a new category, one that may provide legal protection but simultaneously destabilize existing workplace relationships. The label of “disabled,” though often framed as a gateway to support and inclusion, can also act as a social marker that repositions the individual within organizational hierarchies and peer dynamics. Brzykcy and Boehm (2022) argue that the attribution of disability status can subtly but powerfully reshape relationships, introducing asymmetry where collegiality once prevailed. Colleagues may become overly cautious, awkward, or even resentful, leading to a shift in team dynamics and informal inclusion.
This relational shift mirrors broader patterns of organizational othering. As Mik-Meyer (2016) shows, employees with chronic conditions often experience identity tests, subtle (and not-so-subtle) evaluations of whether their condition is legitimate, sufficiently disabling, or deserving of support. In cases of an invisible illness like SLE, the label itself becomes fraught. Its legitimacy is questioned precisely because it is not externally verifiable. Monaghan and Gabe (2019) extend this analysis by showing how invisible or contested illnesses trigger organizational discomfort. This discomfort is experienced as colleagues oscillate between overaccommodation and suspicion, while managers struggle to interpret how visible absence correlates with invisible impairment (Schur et al., 2005, 2017).
In this environment, the disclosure of illness shifts from a factual act to a relational risk (Hastuti and Timming, 2021). It invites surveillance of behavior and body, and can compromise informal sources of credibility, particularly in team settings where reliability, availability, and competence are central to trust. As Wilde and Fish (2023) observe, such disruptions are often less about exclusion than about a sudden reordering of assumptions. The body no longer fits the script of the dependable colleague and thus becomes an object of negotiation.
What is often missing in HRM and diversity literature is sustained attention to how illness affects informal relational capital at work such as trust, collaboration, peer mentorship, and access to stretch assignments. While organizational discourse may focus on accommodations and rights, the most meaningful exclusions occur in these less visible spaces, in who gets called into the room, invited into projects, or seen as resilient and promotable (Gould et al., 2022). In such contexts, managing illness becomes not only a matter of health, but an ongoing exercise in reputation repair, identity performance, and strategic relational labor.
This recognition of disclosure as a socially contingent and interpretive process underscores the need to move beyond binary models of disclosure and toward a more nuanced understanding of how relational dynamics evolve in the wake of categorization (Moloney et al., 2019). It also calls for HRM to attend not just to formal mechanisms of support, but to the affective, interpersonal consequences of naming difference in professional spaces where conformity is still treated as a prerequisite for trust.
2.4 Reframing capacity, inclusion, and professional worth
A growing body of critical organizational scholarship challenges the idea that inclusion can be achieved through policy alone. Scholars have long argued that inclusion is enacted or denied through everyday organizational practices, informal norms, and managerial discretion (Jammaers et al., 2016; Vu and Burton, 2023). For employees with systemic lupus erythematosus (SLE), these practices are not abstract, they manifest in how absence is interpreted, how credibility is maintained, and how flexibility is granted or withheld (Agarwal and Kumar, 2016; Cornet et al., 2022). Performance, in such contexts, is often judged not by output alone but by visibility, consistency, and affective composure.
Invisible illness draws attention to what might be termed the hidden architecture of exclusion, the routines, assumptions, and implicit rules that shape organizational life but rarely appear in formal policy. As Norstedt (2019) argues, most workplace systems are designed around the assumption of bodily continuity, punctuality, predictability, and sustained productivity. Episodic conditions introduce irregularity into these expectations, often triggering discomfort, suspicion, or managerial uncertainty. Employees may maintain strong performance for extended periods, only to be undermined by a sudden flare-up (Agarwal and Kumar, 2016). In the absence of relational understanding and adaptive structures, this unpredictability is not interpreted as part of chronic illness, but as failure to meet the unspoken norm of linear, uninterrupted productivity.
What emerges is a further call to reconsider how inclusion is understood not as access alone, but as a reconfiguration of what organizations define as capacity and professional worth. Traditional HRM frameworks continue to valorize consistency, presenteeism, and speed metrics that marginalize those whose bodies do not conform to linear timelines (Gagnon and Cornelius, 2000; Konrad, 2018).
Rather than viewing chronic illness as a disruption to be accommodated, feminist and disability-informed perspectives invite a reframing of inclusion itself not as a fixed condition to be met, but as a dynamic, responsive practice rooted in trust, flexibility, and the dignity of variation (Garland-Thomson, 2002; Kafer, 2013). This approach shifts the burden away from individual adaptation and toward collective responsibility, asking not only how employees manage illness, but how organizations manage inclusion in the face of embodied difference.
The redefinition of capacity is especially urgent in an era of hybrid work, emotional burnout, and increasing awareness of neurodiversity and mental health (Benítez-Silva, 2010; Gignac et al., 2021). Episodic disability does not map neatly onto existing support structures because it challenges the very foundation of what support is expected to respond to, namely, visible, stable impairment. If inclusion is to be meaningful, it must expand to account for fluctuation, ambiguity, and the relational labor involved in maintaining legitimacy under conditions of uncertainty. Although relational HRM scholarship has expanded the focus from transactional compliance to the quality of workplace relationships (Bannya et al., 2023), little attention has been paid to how these dynamics play out in the context of invisible, episodic disability.
Despite progress in research on disability and workplace inclusion, three gaps persist. First studies largely privilege visible or stable impairments, overlooking episodic conditions such as systemic lupus erythematosus (Kulkarni, 2022; Mik-Meyer, 2016). Second, HRM scholarship continues to emphasize compliance and accommodation, giving less attention to relational dynamics of trust, discretion, and emotional labor that shape daily participation (Jammaers et al., 2016; Kalfa et al., 2021; Lyubykh et al., 2025). Third, feminist disability theory has critiqued professional norms but rarely considers how life course trajectories, onset, menopause, and family responsibilities intersect with fluctuating illness. This omission is acute in African contexts, where studies show earlier onset, delayed diagnosis, and greater disease severity within inequitable healthcare and employment systems (Budhoo et al., 2017; Phuti et al., 2019). This article addresses these gaps by centring narratives of professional women with lupus in South Africa and advancing two conceptual frameworks—Relational Inclusion and Contingent Coherence—that reconceptualize inclusion as a fragile, relational practice.
3 Method
3.1 Research design and rationale
This study employed a narrative-interpretive qualitative design to explore how women diagnosed with systemic lupus erythematosus (SLE) construct, conceal, and contest their professional identities within organizational contexts. The goal was not to quantify impairment or assess accommodation outcomes, but to trace how meaning is made in environments that demand composure, visibility, and consistency.
Narrative inquiry was selected for its capacity to foreground lived experience and capture how identity is constructed over time, especially under conditions of instability (Riessman, 2005). Drawing on feminist and interpretive traditions, the study conceptualized chronic illness not as a static status but as a shifting relational negotiation where bodily capacity, credibility, and belonging are continuously recalibrated in response to institutional demands (Kafer, 2013). The interview was treated not as a neutral data collection tool but as a co-constructed site of meaning, where stories, silences, and contradictions carried analytic weight (Ellingson, 2009).
This design is especially suited to episodic, invisible illnesses such as SLE, which often elude static classification or linear chronology. It enabled the study to generate theoretical insight into how workplace inclusion and professional identity are negotiated through everyday language, relational encounters, and structural constraint.
3.2 Sampling strategy and participant profile
Participants were recruited through purposive and snowball sampling, focusing on a tightly defined group: professionally employed women who had received a formal diagnosis of systemic lupus erythematosus. All participants were in cognitively intensive, responsibility-laden occupations including education, finance, procurement, and human resources where managing perception, performance, and presence was central to their role.
This sampling strategy was grounded in conceptual logic. Participants were treated as eight discrete cases in a qualitative multiple-case approach (Stake, 2006; Yin, 1994). Each case reflected a unique configuration of personal biography, organizational role, and embodied experience of SLE. What unified them was not only diagnosis, but their shared professional terrain, workplaces that privilege emotional control, visible output, and consistent availability. By focusing on women in mid- to senior-level roles, the study accessed a common normative context in which the ideal worker model was both expected and internalized. The occupational specificity and shared context created strong internal consistency, enabling rich within-case depth and cross-case analytical comparison. Participant ages ranged from late 20s to late 50s, with variation in years since diagnosis, employment sector, and disclosure history. Racial and cultural diversity added nuance to the analysis, allowing attention to how wider social identity categories intersected with embodied illness experiences.
3.3 Data generation: interviews as situated narrative
Each participant took part in one semi-structured in-depth interview, lasting between 60 and 120 min (DiCicco-Bloom and Crabtree, 2006), conducted via Zoom or in a private in-person setting. The interview guide was developed to prompt narratives around key moments: diagnosis, initial disclosure, workplace reactions, concealment strategies, perceived support or exclusion, and the emotional toll of performance.
The interview format followed a narrative logic. Rather than structuring the conversation linearly, participants were invited to reflect, reframe, contradict, and redirect. This non-linear structure supported participants in exploring how different aspects of their lives intersected including illness, gender, appearance, and professionalism. The interviewer adapted prompts responsively to the rhythm and affective tone of each conversation.
Field notes were taken immediately after interviews to capture contextual cues, affective dynamics, and reflections. Audio recordings were transcribed verbatim and anonymized. Non-verbal indicators pauses, changes in tone, emotional intensity were noted in transcripts and factored into later rounds of analysis.
3.4 Analytic strategy and thematic framing
Thematic narrative analysis was conducted using a six-stage process (Clarke and Braun, 2017), adapted to focus on both semantic content and narrative form. This method attends to both what participants say and how they say it emphasizing meaning-making through tone, metaphor, repetition, and narrative structure.
The first stage, immersion and narrative familiarization, entailed multiple rounds of transcript reading, treating each participant narrative as a distinct case. Initial immersion focused not only on content but on tone, rhythm, pacing, and metaphor. Field notes and interview reflections were revisited alongside transcripts to retain contextual and affective nuance. Narratives were read holistically before being broken into segments, allowing early recognition of moments of emotional tension, hesitation, or repetition often sites where meaning-making was most active.
During the second stage, inductive coding of meaning-bearing moments, initial codes were generated, focusing on emotionally charged events (e.g., collapse, diagnosis, withdrawal), discursive disruptions (e.g., contradiction, self-correction), and repeated motifs or metaphors (e.g., “holding it together,” “not letting them see”). Codes captured both explicit content (symptoms, disclosure, leadership) and narrative functions (justification, resistance, deflection). The goal was to preserve the integrity of participants' language while identifying sites of interpretive potential.
Development of thematic tensions took place during stage three where codes were reviewed across cases, identifying conceptual patterns and points of friction. Rather than abstracting themes too quickly, the analysis focused on grouping codes into tensions such as disclosure vs. protection, ambition vs. self-preservation, or credibility vs. fatigue. This stage avoided reducing stories to categories, instead foregrounding complexity and contradiction as constitutive elements of identity work under chronic illness.
The fourth stage of cross-case patterning and divergence entailed reviewing themes were reviewed comparatively across participants to identify resonance, divergence, and unique formulations. Attention was paid to how themes played out differently depending on occupational role, length of diagnosis, or prior leadership experience. This stage did not seek uniformity, but conceptual robustness, ensuring that each theme captured a recurring, theoretically salient tension rather than a superficial commonality.
During the fifth stage, thematic refinement and interpretive dialogue, themes were refined and tested through peer debriefing with qualitative methods experts to ensure rigor. Discussions focused on whether themes held interpretive integrity, whether counter-examples had been addressed, and whether the researcher's positionality had shaped theme boundaries. Definitions were sharpened to reflect the interaction between individual agency and structural constraint, ensuring that themes did not simply report content but offered insight into power, silence, and relational inclusion.
The final sixth stage of composition of analytic narratives involved writing the analytic narrative. Select quotations were curated to reflect not only what participants said, but how they said it, including pauses, metaphors, tone, and rhythm. Narrative vignettes were placed in dialogue with theory, showing how lived experience interrupted or expanded dominant models of work, performance, and inclusion. Each theme was developed as a conceptual argument, grounded in rich empirical material. Themes were understood not as categories, but as discursive moments where individual agency met structural constraint where women made visible the invisible logics of organizational inclusion. Special attention was paid to metaphorical language (e.g., “I felt like I was crumbling inside” or “I was holding my breath at work”), which pointed to affective and embodied dimensions of identity work.
Rigor was supported through triangulation across data layers (content, structure, tone), peer debriefing with experts in qualitative methods.
3.5 Ethics and reflexive accountability
This study received ethical approval from the researcher's institutional ethics committee (No: 31352). Participants were provided with detailed information about the study and signed informed consent forms. Pseudonyms were used to protect participant identities. Given the sensitivity of the topic and potential emotional strain, all participants were offered optional referrals to psychological support services.
The ethics of this study extended beyond procedural compliance. Care was taken in how participants were approached, how their stories were held, and how emotional disclosures were responded to in real time. The study was guided by a principle of relational accountability, recognizing that stories of illness and work are not shared lightly, and that participants were not merely data providers but co-constructors of insight.
Reflexivity was central to the research process. The researcher's professional background in inclusion and HR practices shaped both the development of interview prompts and the interpretive framing of participants' narratives. To mitigate unexamined assumptions, the researcher maintained a reflexive journal throughout the study. This journal captured shifts in perspective, emotional responses to participants' experiences, and the evolution of conceptual commitments (Finlay, 2002; Watt, 2015). These entries were regularly reviewed and discussed with peer reviewers and collaborators, ensuring that interpretation remained accountable to both participants and the broader ethical commitments of the research.
4 Findings
The findings of this study are presented across five interrelated themes that explore how women living with systemic lupus erythematosus (SLE) navigate the challenges of chronic illness in professional settings. These themes highlight experiences shaped by fluctuating health, high-performing environments, and relational workplace dynamics. Rather than being isolated experiences, they reveal overlapping tensions between being open or staying silent, striving or slowing down, seeking care or avoiding scrutiny that shape decisions at work and in life. Each theme is grounded in the lived realities of participants and supported by narrative excerpts that illustrate how professional life is continually negotiated in the face of invisible illness.
4.1 Disclosure and embodied silence
Disclosure was rarely a clear-cut decision. It was not a single moment of truth, but an ongoing calculation shaped by organizational dynamics, gendered expectations, and concerns about credibility. For women living with SLE, disclosure existed in tension with professional norms of resilience, strength, and emotional control. Sharing their diagnosis risked being perceived as unreliable; remaining silent risked isolation and exhaustion.
Many participants described concealment as a strategic act of self-protection. The invisibility of SLE made it possible but costly to withhold disclosure. Women worked through flares, pain, and fatigue while appearing fully functional. This effort to maintain professional credibility often resulted in what can be described as embodied silence: an internal management of illness that avoided external scrutiny.
“I didn't really say anything… I would just be quiet.” (Participant 4, Chartered Accountant)
This silence was not passive. It was a form of labor, suppressing symptoms to maintain normalcy. Disclosure, when it occurred, was selective and shaped by the perceived attitude of individual managers.
“everyone knows how their managers are.” (Participant 6, Senior Buyer)
The potential outcomes of disclosure ranged from empathy and flexibility to pity or exclusion. For many, silence felt safer than risking reduced responsibility or stalled career progression. Yet in instances where disclosure was met with genuine care, it became a source of relief. These interactions shifted the relational dynamic at work, affirming both value and autonomy.
“My manager knew from day one… she was probably more worried than I was.” (Participant 6, Senior Buyer)
“Even today she asked me how I am doing?” (Participant 7, Human Resources)
Disclosure brought tangible benefits when met with trust, time off without penalty, schedule adaptations, and ongoing emotional check-ins. It also deepened relationships, creating a sense of being seen beyond illness. In some cases, disclosure happened without intention. For Participant 3, she explained her “workspace already knew from the get-go” because of her published book.
This altered the nature of disclosure entirely relieving the burden of initiating the conversation, but also removing control over how and when the story was shared. It introduced new tensions: support could be offered, but assumptions could also be made. Across these accounts, disclosure was negotiated at the intersection of fear and hope, caution and connection. It reflected a central paradox: the desire to be understood without being diminished. Participants revealed how disclosure is not just about visibility, but about credibility when, how, and to whom one becomes visible, and what is gained or lost in that moment.
4.2 Living on the edge of capacity
The tension between embodiment and expectation formed a core narrative across participants. While many remained employed and professionally active, it came at a high personal cost. Flares, fatigue, and other physical symptoms were managed privately, without disrupting the performance of professionalism. The women were caught in a paradox: to maintain credibility, they had to suppress the very signs that made support necessary.
Workplaces were described as both affirming and exhausting. They offered identity and purpose but also demanded a denial of illness. These environments privileged constancy and stamina, qualities at odds with the unpredictable nature of SLE. Illness had to be hidden. Strength had to be performed. Vulnerability was negotiated behind closed doors.
“You force yourself to work twice as hard so they never can question your worth, your abilities…I have pushed through pain…exhaustion because I never wanted to show weakness… people around me, are taking sick leave, while you are genuinely sick, afraid to show you are not feeling well today.” (Participant 4, Chartered Accountant)
The overcompensation to avoid doubt was not simply about ambition, it was about legitimacy. Participants described the constant need to prove their capacity and pre-empt doubt. Illness, especially when invisible, had to be actively managed to preserve credibility. Every act of hiding symptoms was a form of work. Where some pushed through, others quietly withdrew turning down opportunities or stepping back from advancement to protect themselves. A few exited the workplace altogether. These were not signs of failure but strategic acts of self-preservation. Fatigue, in particular, disrupted not just energy levels but also cognitive clarity, emotional resilience, and confidence. Its unpredictability clashed with rigid work schedules and fast-paced demands. Participant 2, questioned how she was expected to “deal with [lupus fog]… especially if you're in meetings back-to-back?” while Participant 3 (Teacher) explained how she would “have afternoon naps” and was “quite worried about going back to full-time work.”
Fatigue didn't just affect energy levels it disrupted confidence, planning, and emotional equilibrium. Participant 8, when tired, said her colleagues were aware that she would covertly “go to the car to sleep.” For professionals in high-functioning roles, this created ongoing tension between capacity and expectation as Participant 1, Teacher explained she had thought “this is going to be my last year here at work.” Some participants eventually reached a point of emotional and physical exhaustion, leading them to consider leaving work. For others, the decision was made on their behalf, being asked to leave.
“I appreciated the concern… but I would have liked to make the decision myself.” (Participant 2, Operations Manager)
These narratives reveal how professional life for women with SLE is often lived at the limit of capacity. The workplace becomes a place not of flexibility, but of silent endurance. Energy is rationed, vulnerability is concealed, and strength is performed. The contradiction is stark: while organizations demand resilience, they rarely create conditions in which resilience can be sustained.
4.3 Redefining ambition
While none of the participants rejected ambition, many redefined it. Their narratives disrupted linear models of success and upward mobility. Rather than striving for promotion at all costs, they made intentional decisions to preserve health, sustain emotional stability, or manage caregiving obligations. For some, success meant staying employed despite chronic pain and exhaustion. For others, it meant choosing security over prestige. Their accounts reflected a deep paradox: the desire to achieve remained intact, but it had to coexist with the need for recovery, balance, and limits.
“I ran a school… I was still achieving what I wanted to achieve.” (Participant 1, Teacher)
“I'll do what I need to do to achieve, and I want to achieve.” (Participant 2, Operations Manager)
These women did not present lupus as a ceiling. Instead, they recalibrated their goals, shifting the definition of success from upward movement to sustainable engagement. They refused to internalize deficit narratives. Their ambition remained but it was directed toward continuity, impact, and control over their time and energy. Participant 4, Chartered Accountant illustrated this reframing beautifully. Her decision to stay in a long-term job even when headhunted was not a retreat from opportunity, but a carefully calculated choice to preserve emotional and physical equilibrium. A decision shaped by the dual demands of chronic illness and caregiving. She wanted a “job that feels safe and comfortable” and shared that she “was not listening to lupus because [her child's] autism was shouting more loudly.” Her reflection revealed another layer of tension: many participants felt the need to first prove their worth before they could risk disclosure or reduced intensity. Illness could only enter the conversation after professional credibility was firmly established. Participant 8 introduced a more introspective view, expressing a longing for more but with hesitation rooted in uncertainty and self-protection.
“You want more but you don't know what that more is… you don't want to do too much either.” (Participant 8, Bid Administrator)
This internal dissonance between potential and limitation, forward motion and pause was a shared reality. These women lived in a space where they continuously negotiated how far they could go, how much they could give, and when to say no. Ambition had not vanished; it had been reshaped by necessity. The theme reveals a workplace paradox: while traditional metrics of success reward acceleration, women with chronic illness are required to slow down, reorient, and resist the pressure to conform. Their professional identities were not diminished by this shift they were redefined through a lens of endurance, self-knowledge, and sustainability.
4.4 Internalized pressure and self-compassion
The women in this study carried more than the physical demands of chronic illness, they also bore the emotional weight of internalized expectations. Many described being their own harshest critics, measuring their worth against idealized standards of competence, strength, and selflessness shaped by both gender norms and professional culture.
Participants spoke about pushing beyond their physical limits not just to meet formal job expectations, but to live up to a deeper, unspoken image of the capable woman or strong leader. The pressure to show up consistently, without cracks or complaints, became a survival strategy. Illness was not just a personal challenge; it was something to be managed in order to avoid perceptions of weakness or unreliability. For Participant 4, the intersection of chronic illness and caregiving intensified the demand to perform composure.
“We don't stop… they are looking for signs you're not up for the task.” (Participant 4, Chartered Accountant)
“I had to show… what other principals do to achieve.” (Participant 1, Teacher)
This pressure created a paradox: the more they needed rest, the less they felt permitted to take it. Even when participants acknowledged their own limits, they struggled to prioritize their health without shame. Guilt was a persistent undercurrent, rest was not resisted because it wasn't needed, but because it felt indulgent or selfish.
“I feel guilty… he forces me to be kind to myself more than I am kind to myself.” (Participant 6, Senior Buyer)
“I thought wow, I'm like actually last on the list… that's not lupus, that's the choices you're making.” (Participant 7, Human Resources)
Support from others, particularly spouses, played a vital role in disrupting these patterns. For Participant 6, her husband's observations and gentle interventions were a turning point.
“He always says if you don't take care of yourself, you won't be okay.” (Participant 6)
These moments marked a shift: self-care was not spontaneous, but relational. It was often triggered by someone else recognizing a need that the participant herself had learned to overlook. Over time, some began to identify their neglect not as a medical limitation, but as a behavioral habit shaped by years of internalized pressure. Participant 7 explained how she “realized… I've not been [kind to myself]” and those were “the choices you‘re making.”
Self-compassion, then, was not innate. It had to be learned often in conflict with the very values that made these women successful in their roles. Even when external support was present like a manager offering flexibility permission to pause still had to be granted from within. This theme reveals the tension between external validation and internal wellbeing. It shows how professional strength is often sustained by self-denial, and how learning to care for oneself without guilt requires unlearning the deeply embedded narrative that rest is weakness.
4.5 Leadership as the gatekeeper of inclusion
Participants repeatedly emphasized that their experiences at work were shaped less by formal policies and more by the attitudes, actions, and adaptability of their managers. Leadership became the determining factor between inclusion and exclusion, support and strain. This exposed a core tension: while inclusion is framed as an institutional value, it was most often enacted or withheld through individual discretion.
Some participants encountered managers who offered empathy, responsiveness, and practical support. These leaders adopted a human-centered approach listening without judgement, adjusting expectations without penalty, and fostering environments where needs could be voiced without fear of reprisal.
“Whenever you feel you are not OK, you just come inform me.” (Participant 1, Teacher)
“You just need to tell me what will help you.” (Participant 7, Human Resources)
“My manager… would tell me not to take my health for granted… work will always be there.” (Participant 6, Senior Buyer)
These leaders practiced what participants described as relational management, not rooted in compliance, but in trust and attentiveness. Flexibility in working conditions such as remote work, schedule adaptations, or reduced hours was not seen as burdensome, but as essential. Early, unconditional support allowed participants to manage their health while remaining professionally engaged.
“I was allowed to work remotely 3 days a week.” (Participant 4, Chartered Accountant)
“Since Covid… flexibility around that definitely also helps quite a bit.” (Participant 6, Senior Buyer)
Yet, this support was precarious. Some participants described how established accommodations became vulnerable when leadership changed. Inclusion that depended on personal rapport, rather than embedded policy, was fragile. Participant 4 shared how this was experienced with a new incoming CEO that “said he understood… but it was clear that he does not like the arrangement.” These stories highlighted another tension between good intentions and structural competency. Participant 6 also noted that many line managers lacked training in employee wellness and disability accommodation.
“[They're] not well versed in Employee Relations/Wellness not due to malice, but due to insufficient training and guidance.”
Participant 3 also explained that lupus, like many chronic illnesses, was not a one-size-fits-all condition and inclusion required personalized dialogue where “Each person should have their voice” and not standard checklists as “it's different for every person” requiring customization.
What emerged was a clear paradox: the appearance of inclusion often masked its instability. While some women benefited from exceptional managers, others experienced exclusion not because of deliberate harm, but because of institutional silence. Inclusion was not systemic, it was situational, relational, and deeply uneven. This theme surfaces the core danger of relying on managerial goodwill alone. It underscores the need for structural literacy around invisible illness approaches that move beyond compliance and engage meaningfully with the fluid, relational, and highly individual nature of chronic illness in the workplace.
Together, these five themes reveal how women with SLE navigate a professional world shaped by competing demands. Disclosure and Embodied Silence shows how credibility and protection are weighed against each other in the decision to speak or stay silent. Living on the Edge of Capacity captures the contradiction of being visibly productive while invisibly exhausted. In Redefining Ambition, women reframe success not through retreat, but through deliberate recalibration, challenging ideals of constant acceleration. Internalized Pressure and the Limits of Self-Compassion exposes how care for others is prioritized over care for self, and how rest becomes a site of guilt rather than recovery. Finally, Leadership as the Gatekeeper of Inclusion illustrates that inclusion is not guaranteed by policy, but is unevenly enacted through relational discretion. These themes, taken together, illuminate the ongoing negotiation of invisibility, credibility, and agency and the fragile terrain of belonging for professionals living with chronic illness.
5 Discussion
This study examined how professional women living with systemic lupus erythematosus (SLE) navigate chronic illness in workplaces that reward visibility, availability, and consistency. The five themes presented in the findings do not exist in isolation. Instead, they reflect four persistent tensions that participants had to continuously manage: between disclosure and protection, credibility and capacity, aspiration and sustainability, and policy and practice. These tensions underpin what we theorize as a process of contingent coherence, a fragile and ongoing effort to remain professionally intact, within systems that offer little space for episodic fluctuation or invisible difference.
5.1 Negotiating silence and disclosure
Disclosure was not a single decision but an ongoing calculation. Participants described the strategic concealment of illness as a way to protect their credibility and avoid being reduced to a label. In doing so, they engaged in what Wilde and Fish (2023) refer to as the emotional labor of passing, exerting effort to mask embodied difference in the interest of professional continuity. When disclosure did occur, it was often delayed until credibility had been secured. This highlights a core tension: visibility can only be tolerated when it no longer threatens professional worth. This finding extends Mik-Meyer's (2016) concept of the relationship disruption effect, where disclosure alters how others engage, often inducing distancing or overcompensation. Silence, therefore, was not simply self-protective, it was institutionally incentivized. Similarly, it shares as Lainidi et al. (2023) found that silence is rarely a passive absence of speech, it is an adaptive response to environments that are unreceptive or even hostile to vulnerability. Voice and silence therefore often co-exist, operating as a strategic and relationally negotiated response shaped by institutional norms, trust levels and perceived consequences.
5.2 Performing capacity at the edge
Participants consistently described pushing themselves to maintain an illusion of uninterrupted capacity. Their narratives revealed how credibility had to be performed, especially in fast-paced, high-stakes environments where absence or deviation signaled unreliability. These accounts echo Norstedt's (2019) argument that workplaces are structured around assumptions of bodily continuity. Fatigue, cognitive fog, and pain became invisible disruptions that participants managed privately, producing a mismatch between appearance and reality. This tension between inner limits and outward demands shows that the workplace not only failed to accommodate fluctuation, it also actively denied its legitimacy. Participants were not resisting work; they were resisting a model of work that could not hold their variation.
5.3 Redefining ambition and professional worth
Rather than abandon ambition, participants redefined it on their own terms. They shifted away from external benchmarks of success, titles, speed, visibility and toward continuity, meaning, and sustainability. This recalibration reflects Kafer's (2013) concept of crip time: a reorientation of temporal norms that values recalibration over acceleration. Women did not see lupus as a ceiling; they reframed success to include survival, consistency, and autonomy. But this adaptation was invisible to others. Ambition had to be justified as if it were a retreat, when in fact it was a strategic assertion of agency. These findings extend feminist critiques of career progression (Simpson and Lewis, 2005) by showing how success under chronic illness must be individually crafted and socially defended.
5.4 Conditional inclusion and managerial discretion
Supportive leadership was the single most important variable shaping inclusion. Participants repeatedly emphasized that it was not formal policies but managerial discretion that determined whether support was offered, withheld, or withdrawn. Inclusion, in this context, was fragile and conditional on the emotional competence and relational responsiveness of individual leaders. This supports Jammaers et al.'s (2016) critique of policy-centric HRM approaches and illustrates the need for what we call structural literacy around invisible illness. Some managers made flexibility unconditional, others subtly reversed accommodations under the guise of organizational change. Inclusion was not systemic; it was situational, relational, and reversible. These findings resonate with calls in relational HRM to attend to trust and reciprocity in employment relationships (Bannya et al., 2023), yet they also extend this literature by showing how discretion around invisible illness remains inconsistent and contingent. Without ethical proximity, there was no safe space for fluctuation.
5.5 From relational conditions to contingent coherence
While the five themes illuminate the lived realities of women with SLE at work, they also point toward a deeper conceptual structure. The immediate enabler of inclusion, as revealed in participant narratives, was not institutional policy but the quality of workplace relationships. Where women encountered trust, responsiveness, and ethical proximity from their managers, they were more likely to disclose their condition, request support, and remain professionally engaged despite significant personal strain. These three conditions comprise what we theorize as the Relational Framework of Inclusion (Figure 1).
Figure 1. The relational framework of inclusion.
This foundational framework identifies the interpersonal qualities necessary to make inclusion possible in the context of invisible, episodic illness. Trust enabled participants to speak openly without fear of stigma or consequence. Responsiveness made it possible for working conditions to be adjusted in real time, without requiring participants to repeatedly justify their needs. Ethical proximity, meanwhile, reflected a relational orientation in which leadership remained responsive, human, and emotionally available without becoming paternalistic or performative.
Participants who described positive experiences in their organizations consistently referenced leaders who embodied these qualities. Adjustments such as flexible hours, informal check-ins, and workload modifications were not exceptional; they were anticipated. While such experiences were inconsistently applied, they were highly dependent on the personality or leadership style of individual managers. In the absence of these relational conditions, women often resorted to concealment, absorbed the burden of accommodation themselves, and described a sense of persistent emotional fragility.
These findings support and extend existing scholarship on inclusion and disability in the workplace. As Jammaers et al. (2016) argue, inclusion is not simply a matter of policy, it is enacted (or undermined) through everyday organizational practices. Similarly, Norstedt (2019) emphasizes that many workplace norms are structured around assumptions of continuity and predictability, leaving little room for fluctuation or vulnerability. The Relational Framework of Inclusion adds to this discourse by clarifying the specific interpersonal dynamics, namely trust, responsiveness, and ethical proximity, that enable people with invisible and episodic conditions to sustain participation in professional spaces.
Crucially, however, these enabling conditions, while necessary, were not sufficient. They provided the groundwork for inclusion but did not eliminate the deeper structural contradictions that women with SLE had to manage. Participants still had to navigate uncertainty, recalibrate ambition, and regulate their visibility. The interpersonal conditions buffered the pressures but did not resolve them. What remained was an ongoing negotiation, dynamic, fragile, and dependent on context. It is this negotiation that we theorize as Contingent Coherence.
5.6 Contingent coherence: a framework of navigating chronic, invisible illness at work
We propose a Contingent Coherence Framework that consists of the four identified tensions that converge within the components of the relational framework of inclusion (Figure 2).
Figure 2. Contingent coherence framework.
This framework captures how women with invisible, episodic illness work to maintain professional coherence in environments that are neither structured for fluctuation nor responsive to embodied ambiguity. Contingent coherence refers to the process of holding together a sense of identity, credibility, and belonging not through constancy, but through calibration. Participants did not resolve their tensions. Instead, they made daily and often silent adjustments, weighing the risks of disclosure, modifying their ambition to align with energy limits, and pushing through pain to preserve credibility. In most cases, inclusion was not assured by organizational commitment; it was contingent on the moment-to-moment availability of relational support and leadership discretion.
The framework is structured around a central core, Contingent Coherence, surrounded by four persistent tensions. These tensions were not temporary disruptions; they were the lived terrain of working life. Participants described how they regularly had to navigate whether to speak or remain silent, when to step forward and when to retreat, and how to stretch themselves to meet expectations that rarely accounted for variability.
Importantly, the outer layer of the framework is formed by the very same stabilizing conditions articulated in the Relational Framework of Inclusion: trust, responsiveness, and ethical proximity. These conditions buffered the internal contradictions participants faced. When present, they allowed coherence to be maintained, at least temporarily. When absent, the internal equilibrium collapsed. Disclosure became risky. Ambition felt unsafe. Capacity had to be faked. Support was withdrawn or denied.
This framework offers a reframing of inclusion itself. Rather than treating inclusion as a static achievement or institutional outcome, it positions inclusion as one fragile and contingent moment in the broader, ongoing work of coherence. Women with SLE were not merely asking to belong. They were performing the emotional, cognitive, and embodied labor of remaining professionally viable in systems built around uninterrupted productivity and uniform visibility.
In doing so, this framework advances several literatures. It deepens feminist organizational theory by making visible the internalized and gendered expectations that often shape leadership and care. It extends HRM debates by shifting attention from formal accommodation policies to the micro-level calibrations that determine whether those policies actually work in practice. And it contributes to disability studies by placing emphasis on the temporal and relational labor involved in navigating episodic illness, not just the moment of diagnosis or the presence of impairment.
Together, the Relational Framework of Inclusion and the Contingent Coherence Framework provide a layered framework for understanding inclusion not as an endpoint, but as a continually reassembled state of professional presence. The relational framework shows the enabling conditions that open up the possibility of support. Contingent Coherence reveals the effort required to hold that support, and oneself, together. For the women in this study, inclusion was not a right passively received. It was a coherence constantly under construction.
6 Limitations and future research
This study offers deep, contextualized insight into the experiences of women with SLE in professional settings in a single national context (South Africa), which may limit the transferability of certain organizational dynamics particularly those shaped by specific employment legislation or healthcare access.
As all participants were professionally employed and self-identified as high functioning at the time of the interviews, it limits the representation of those who may have exited the workforce or faced more precarious employment due to illness. Their absence from the data may understate the full structural exclusion faced by individuals with more severe or less stable conditions.
The study did not include employer or co-worker perspectives leading to organizational responses interpreted through participant narratives rather than triangulated through multiple stakeholder views. Future studies might explore these relational dynamics from both sides, including how managers interpret their own responses to invisible illness in team contexts.
Further research is also needed on intersectionality particularly how race, class, and professional hierarchy shape experiences of disclosure, support, and stigma in relation to invisible illness. Comparative studies across organizational cultures or welfare regimes could deepen insight into the institutional conditions that enable or undermine relational inclusion.
Finally, there is scope to explore how episodic disability reshapes understandings of career, leadership, and value within evolving models of hybrid and flexible work. Such studies could help reposition flexibility not as an accommodation, but as a relational norm that benefits all workers.
7 Conclusion
This study has shown how professional women living with systemic lupus erythematosus navigate workplaces structured around ideals of continuity, visibility, and uninterrupted capacity. Rather than passively accepting exclusion, participants engaged in constant recalibration, negotiating disclosure, performing capacity, and redefining ambition within organizational systems that rarely recognized fluctuation as legitimate. Their experiences demonstrate that inclusion is not delivered through compliance or formal policy alone, but forged in the fragile, everyday dynamics of trust, discretion, and responsiveness.
This study makes three contributions. First, it advances feminist disability studies by introducing contingent coherence as a new vocabulary for theorizing inclusion. Rather than treating belonging as stable achievement, contingent coherence captures the provisional and relational labor required to hold together professional credibility and identity in the face of episodic illness. Second, it extends debates in HRM by highlighting the relational conditions of trust, responsiveness, and ethical proximity as constitutive of inclusion. This shifts attention from accommodation and compliance frameworks to the micro-level enactments that determine whether inclusion is experienced as real or rhetorical. Third, it situates these insights within the African context, where delayed diagnosis, systemic inequities, and limited employment protections intensify the pre-clarity of invisible disability. By grounding conceptual innovation in this context, the article expands the geographical and theoretical reach of scholarship on disability and work.
These contributions have practical and scholarly implications. For HRM and leadership practice, they underscore the importance of relational capability as a leadership competency, one that must be cultivated alongside formal policy. For organizational research, they suggest the need to explore how contingent coherence operates across different context, welfare regimes, and forms of invisible disability. More broadly, they invite rethinking of how organizations define value and participation, not through uninterrupted presence, but through recognition of fluctuation as a fact of working life.
Inclusion, for women in this study, was not a guaranteed entitlement. It was a fragile achievement, continually constructed and reassembled through acts of calibration, trust and responsiveness. To understand inclusion through the lens of contingent coherence is to recognize instability not as a failure, but as the condition under which many employees labor. Such recognition demands both theoretical innovation and practical transformation if workplaces are to become genuinely inclusive.
Data availability statement
The datasets presented in this article are not publicly available due to the sensitive and personal nature of the narrative data collected. Requests for access to anonymized data may be considered on a case-by-case basis and must be submitted to the relevant institutional ethics committee, in accordance with approved ethical protocols and participant confidentiality agreements. Requests to access the datasets should be directed to Aden Williams, YWRlbkBzdW4uYWMuemE=.
Ethics statement
The studies involving humans were approved by Research Ethics Committee: Social, Behavioral and Education Research (Stellenbosch University). The studies were conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.
Author contributions
AB: Methodology, Conceptualization, Data curation, Supervision, Formal analysis, Writing – review & editing, Project administration, Visualization, Writing – original draft. JL: Investigation, Writing – review & editing, Formal analysis, Data curation.
Funding
The author(s) declare that no financial support was received for the research and/or publication of this article.
Acknowledgments
Figure design created with Napkin.
Conflict of interest
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Generative AI statement
The author(s) declare that Gen AI was used in the creation of this manuscript. Generative AI was used to support aspects of language refinement, referencing assistance, and formatting suggestions. All intellectual contributions, interpretations, and critical insights remain those of the author(s), and the final content was reviewed and verified to ensure accuracy, originality, and alignment with ethical research standards.
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Keywords: invisible illness, chronic illness, feminist disability theory, organizational inclusion, identity work, systemic lupus erythematosus
Citation: Bam A and Lulema J (2025) Contingent coherence and relational inclusion: women, work, and invisible illness. Front. Organ. Psychol. 3:1667418. doi: 10.3389/forgp.2025.1667418
Received: 16 July 2025; Accepted: 22 September 2025;
Published: 15 October 2025.
Edited by:
Myriam N. Bechtoldt, EBS University of Business and Law, GermanyReviewed by:
Cecile Guillaume, University of Surrey, United KingdomMelissa Intindola, Bucknell University, United States
Copyright © 2025 Bam and Lulema. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
*Correspondence: Armand Bam, YXJtYW5kYkBzdW4uYWMuemE=
†ORCID: Armand Bam orcid.org/0000-0002-6074-7232