What does it take to look “well enough” to be believed, and strong enough to stay employed? Why do some employees continue working through pain rather than asking for support? And if workplaces increasingly speak about inclusion, why do many people still feel compelled to hide part of themselves? Stellenbosch Business School Professor Armand Bam shares his research.

The Cost of Performing Wellness by COBS Editor Mallika Rahane.

Related research: Armand Bam et al. Performing Wellness, Concealing Pain: A Gendered Continuum of Challenges for Women with Lupus in the Workplace

In this research paper, Prof. Armand Bam from Stellenbosch Business School and his co-author explore how women living with Systemic Lupus Erythematosus (SLE) navigate professional life, all the while managing an illness that is often invisible and unpredictable. Stranded between gendered expectations of resilience and the unpredictability of their illness, they go through professional environments that reward stability and penalize disruption. Their stories reveal not just the burden of disease, but the labour of appearing “undiseased”. Scholars have long shown that workplaces are structured by ableist norms privileging uninterrupted productivity, bodily stability, and linear career trajectories. For women with invisible, episodic conditions like systemic lupus erythematosus (SLE), this question is not rhetorical, it’s routine.

When appearing well becomes part of the job

The authors argue that professional environments are not neutral spaces. Built on ideals of continuous productivity, visibility, and bodily stability, workplaces view illness disruptive not only because of symptoms but also because of how professional life is centred around able-bodied norms.

For women living with lupus, this expectation creates a tension. The illness is characterised by periods of severe fatigue, pain and symptoms that can fluctuate unpredictably. And yet, because these symptoms are frequently invisible, colleagues may see someone as appearing perfectly healthy, all the while that person is experiencing significant physical distress.  

Within such environments, women with SLE ‘perform’ wellness and conceal pain in order to sustain professional credibility in environments that struggle to accommodate bodily ambiguity. As such, the challenge is not simply managing the illness itself, but managing how the illness is perceived.

In this sense, work is both a site of aspiration and of exclusion.

Invisible Illness: The long journey before anyone believes you

Another underlying theme that Professor Armand Bam highlights in the research paper is that the struggle often begins well before the workplace.

Invisible illnesses are often characterised by subjective symptoms of pain, fatigue & cognitive fog that might lack objective verification. These features frequently lead to delayed diagnoses, as biomedical systems rely majorly on measurable indicators and reproducible signs.

Several participants described years of unexplained symptoms, repeated medical consultations and delayed diagnoses. Fatigue, pain and cognitive difficulties were initially attributed to other causes or simply failed to fit existing medical expectations. This uncertainty affected more than access to treatment. It gradually weakened participants’ confidence in their own bodies and experiences.

For some, the diagnosis finally explained years of unexplained suffering. The researchers suggest that diagnosis therefore represents more than a clinical milestone. It also marks a struggle for legitimacy: where women seek validation to believe that what they have been experiencing is real and worthy of recognition.

Delayed recognition not only disrupts access to care, it destabilises identity, erodes confidence in an individual’s perceptions, and complicates participation in social and professional life.

The invisible work beyond the illness

Receiving a diagnosis, nevertheless, does not eliminate the challenges.

Participants described another form of labour that remains largely unseen: the constant effort required to appear capable while dealing with unpredictably fluctuating symptoms.

This involved making tricky decisions about whether to disclose the condition, to whom and how much to disclose, continuing to work through flare-ups, concealing the pain, and managing visible symptoms such as swelling, rashes or hair loss. These decisions are anything but straightforward. Revealing the illness might provide understanding and workplace flexibility. And yet it could also invite pity, reduced expectations or doubts about competence.

Some reported that they often worked through extreme pain and fatigue, determined not to be seen as less capable than peers.

Interestingly, many participants were also uncomfortable describing themselves as ‘disabled’, even when lupus significantly affected their daily functioning. The label felt incompatible with how they understood themselves and how they wished to be perceived professionally. It is a classic case of divided identity.

Some only considered disability status pragmatically, recognising that it could provide access to workplace accommodations rather than viewing it as a part of their identity.

The study therefore underscores an important distinction between living with functional limitations and identifying with the social label of disability. Instead of embracing or rejecting the label outright, participants continually arbitrated how much of their condition to reveal and when disclosure best served their interests.

Inclusion beyond visible disability

The research also challenges conventional ideas about workplace inclusion.

Many organisational policies implicitly assume that disability is visible, stable and easily recognised. Lupus rarely fits into these neat boxes. Symptoms fluctuate over time, vary between individuals and often remain hidden altogether from the outside.

This creates an environment where employees must question whether it is safe to disclose their condition and whether requesting support might alter how colleagues and managers perceive them, or their capability.

Importantly, participants’ experiences of sharing about their condition at workplace were not universally negative. Some described managers who responded with kindness and flexibility, adapting responsibilities or working arrangements in ways that enabled them to continue contributing effectively. Others experienced more subtle pressures to maintain appearances and avoid becoming perceived as unreliable or incompetent.

Rather than presenting inclusion as a fixed organisational policy, the research illustrates how it is shaped by everyday interactions, leadership responses and workplace culture.

Invisible Illness: Mapping the hidden journey

Road map of blue location pin icon symbol or gps travel route navigation marker and transportation place pointer direction street sign on city background with transport destination way. 3D render.

Perhaps the study’s most significant contribution is the development of what the authors call the Continuum of Embodied Challenges.

Rather than depicting illness as a linear process, this conceptual framework illustrates how women move repeatedly between different yet interconnected experiences.

Medical uncertainty may lead to disruptions in bodily identity, which in turn influence workplace decisions about disclosure, credibility and adaptation. A change in health, a workplace interaction or a new flare-up may shift someone back through earlier stages of this continuum rather than allowing steady progression forward.

The framework therefore captures the recursive nature of living with lupus. Professional life is not experienced as a simple balance between health and illness but as an ongoing negotiation involving identity, visibility and organisational expectations.

This fluidity reflects the episodic and unpredictable nature of lupus and the ways identity negotiations are continually reworked over time. Moreover, the Continuum of Embodied Challenges illustrates a dynamic, multi-directional flow of experiences, where women engage in active meaning-making, resist reductive labels, and negotiate legitimacy within both healthcare and workplace systems

By placing these experiences within a single conceptual model, the study extends discussions of disability and work beyond static categories, drawing attention to the realities of episodic and invisible conditions.

Rethinking what inclusion asks of organisations

The research ultimately invites organisations to reconsider what inclusion means when health itself is unpredictable.

Rather than assuming that professionalism depends upon uninterrupted performance, the findings suggest that inclusion also depends on recognising fluctuating capacity and understanding that not all illnesses are immediately visible.

For organisational leaders, the study encourages closer attention to the everyday experiences surrounding disclosure, workplace flexibility and managerial responses. Equally, it highlights the importance of organisational cultures in which employees do not feel compelled to conceal illness simply to maintain credibility.

More broadly, the research contributes to ongoing conversations about disability, gender and work by showing that inclusion cannot rely solely on recognising visible differences. It also requires acknowledging the hidden labour involved in appearing well when living with an illness that others cannot see.

Useful links:

• Link up with Armand Bam on LinkedIn
• Read a related article: The Silent Chasm: The low-trust disconnect between workers and leadership in South Africa
• Discover Stellenbosch Business School.
• Apply for an MBA at Stellenbosch.

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