Institutional Barriers Force South African Women to Choose Between Work Credibility and He

Workplace design, not individual willpower, sits at the heart of a study examining how eight professional South African women living with systemic lupus erythematosus navigate employment while managing a chronic autoimmune disease. The research exposes how institutional assumptions about productivity and presence can force a choice between professional credibility and physical health.

Lupus is episodic. A person might appear entirely well at one moment and experience a serious flare-up at another. Symptoms include pain, profound fatigue, cognitive difficulties, swelling and skin changes. That unpredictability sits uneasily with how most organisations function, which tend to reward consistency, visibility and uninterrupted output along a predictable career path.

Additional reference context is available at https://mg.co.za/thought-leader/2026-08-06-women-should-not-have-to-perform-wellness-to-be-valued/.

The women in the study described a phenomenon they called performing wellness: maintaining a composed professional appearance while privately managing pain, uncertainty and exhaustion. They were effectively doing two jobs at once. The first was the work for which they were employed. The second was the largely invisible labour of managing symptoms, deciding whether to disclose their condition, educating colleagues about lupus and anticipating how managers might respond.

The burden is profoundly gendered. Professional women must often work harder to establish competence and authority in the first place. When illness enters the picture, another layer of scrutiny follows. Disclosure could open the door to flexibility and support, but it could also invite pity, scepticism or exclusion from future opportunities. Concealment might preserve a professional identity in the short term, but it can require a woman to continue working beyond what is physically sustainable. Neither option is without risk.

Some participants resisted describing themselves as disabled, even when lupus substantially affected their functioning. This was not denial. It reflected the social meaning attached to disability: dependence, incapacity and diminished professional worth. Organisations therefore placed these women in a direct contradiction. To access support, they might need to identify through a category they feared would be used to question their competence.

Because many lupus symptoms are invisible, women are sometimes told they “look fine.” That seemingly reassuring observation can function as dismissal. Fatigue gets mistaken for disengagement, cognitive fog for poor preparation, and requests for flexibility for a lack of commitment. The challenge is therefore not only managing the illness itself. It is managing how the illness is interpreted by others.

The research produced what it calls the Continuum of Embodied Challenges, mapping how women move repeatedly between medical uncertainty, bodily disruption, identity negotiation and workplace adaptation. This is not a linear journey from diagnosis to recovery. A flare-up, a change in manager or a new role can reopen questions a woman believed she had already resolved. Meaningful inclusion must be equally responsive. A single accommodation or one disclosure conversation is not sufficient for a condition that changes over time.

By contrast, the study also recorded workplaces that responded differently. Compassionate managers offered flexibility, adjusted physically demanding responsibilities and trusted employees to communicate what they needed. Colleagues sometimes became active participants in return-to-work support. These accounts show that inclusion does not require organisations to abandon standards. It requires them to question unnecessarily rigid assumptions about how good performance must look.

A person can be highly capable without having identical capacity every day. She can remain ambitious while making decisions that protect her health. She can need flexibility without lacking commitment. Organisations can begin by training managers to understand invisible and episodic conditions. Employees should have confidential, credible routes through which to request support, and flexibility should be shaped by what a person needs to perform her work rather than by whether colleagues can see visible evidence of illness.

Organisations should also examine whether presenteeism is being confused with commitment. An employee who remains at her desk while unwell might be celebrated as dedicated, while another who manages her health responsibly gets viewed as less dependable. That is not a meaningful measure of contribution. Policies written without lived experience often look progressive on paper but remain inaccessible in practice. Employees living with chronic illness should be included in designing the workplace practices that govern them.

Women’s Month should honour courage. It should not romanticise suffering or turn silent endurance into the standard against which women are measured. Women living with lupus do not need praise for hiding their pain successfully. They need workplaces in which their credibility does not depend on concealment.

The real test of an inclusive organisation is not how it treats employees when they are consistently well. It is whether those employees remain trusted, valued and able to participate when their bodies become unpredictable. The responsibility for adaptation cannot continue to rest on women alone. Whether institutions are willing to stop asking women to demonstrate strength by surviving workplaces never designed with them in mind is the question that Women’s Month, and every month after it, still leaves open.