{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T18:15:34Z","timestamp":1780337734757,"version":"3.54.1"},"reference-count":61,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2025,11,12]],"date-time":"2025-11-12T00:00:00Z","timestamp":1762905600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Psychol."],"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Women with systemic lupus erythematosus (SLE) work under conditions where success is often contingent on concealing pain, managing disclosure, and \u201cperforming\u201d wellness in organisational cultures that reward composure over care. Workplaces are not neutral spaces; they are structured by ableist and gendered norms that privilege stability, productivity, and visibility, making episodic illness particularly disruptive.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This study draws on a narrative inquiry approach with eight professional women living with SLE. Participants were invited to recount their embodied experiences of illness, identity, credibility, and inclusion in the workplace. The narratives were analysed thematically with a feminist disability lens, attentive to the relational and institutional contexts that shape meaning-making.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The findings introduce the Continuum of Embodied Challenges, a conceptual framework tracing the layered tensions participants face in navigating illness and institutional expectations. Diagnosis emerges as both a clinical and epistemic struggle, where uncertainty erodes trust in one\u2019s body. Participants described resisting the category of \u201cdisability\u201d even when functionally impaired, and shouldering significant emotional and physical labour to remain credible in spaces that privilege predictability and presence.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>By centring invisibility, gender, and resistance, this study advances feminist disability perspectives on chronic illness and work. It highlights how episodic disablement is structurally misrecognised in organisations designed around uninterrupted performance. The study argues for institutional models of inclusion that account for bodily unpredictability, fluctuating capacity, and the complexity of living and working with episodic illness.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fpsyg.2025.1644068","type":"journal-article","created":{"date-parts":[[2025,11,12]],"date-time":"2025-11-12T05:19:32Z","timestamp":1762924772000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":1,"title":["Performing wellness, concealing pain: a gendered continuum of challenges for women with lupus in the workplace"],"prefix":"10.3389","volume":"16","author":[{"given":"Armand","family":"Bam","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joy","family":"Lulema","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2025,11,12]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"21","DOI":"10.1080\/0142569950160102","article-title":"Carry on caring: the work of women teachers","volume":"16","author":"Acker","year":"1995","journal-title":"Br. J. Sociol. Educ."},{"key":"ref2","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1016\/j.jaut.2019.102374","article-title":"Inflammatory markers in systemic lupus erythematosus","volume":"110","author":"Aringer","year":"2020","journal-title":"J. Autoimmun."},{"key":"ref3","doi-asserted-by":"publisher","first-page":"702166","DOI":"10.3389\/fpsyg.2021.702166","article-title":"Factors affecting the perception of disability: a developmental perspective","volume":"12","author":"Babik","year":"2021","journal-title":"Front Psychol"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"19","DOI":"10.1177\/0891243218801523","article-title":"Work in the intersections: a black feminist disability framework","volume":"33","author":"Bailey","year":"2019","journal-title":"Gend. Soc."},{"key":"ref5","doi-asserted-by":"publisher","first-page":"1","DOI":"10.4102\/ajod.v14i0.1562","article-title":"Fragmented care in lupus: patient experiences and insights","volume":"14","author":"Bam","year":"","journal-title":"African J Disability"},{"key":"ref6","doi-asserted-by":"publisher","first-page":"1","DOI":"10.4102\/sajhrm","article-title":"Invisibility, stigma and workplace support: experiences of individuals with chronic disorders","volume":"23","author":"Bam","year":"","journal-title":"SA J. Hum. Resour. Manag."},{"key":"ref7","doi-asserted-by":"publisher","DOI":"10.1017\/idm.2020.5","article-title":"Inclusion at the workplace: an exploratory study of people with disabilities in South Africa","author":"Bam","year":"2020","journal-title":"Int. J. Disabil. Manag."},{"key":"ref8","doi-asserted-by":"publisher","first-page":"285","DOI":"10.1177\/0018726710371235","article-title":"Liminality and the practices of identity reconstruction","volume":"64","author":"Beech","year":"2011","journal-title":"Hum. Relat."},{"key":"ref9","doi-asserted-by":"publisher","first-page":"428","DOI":"10.1016\/j.hrmr.2018.09.001","article-title":"The emotional context of disclosing a concealable stigmatized identity: a conceptual model","volume":"29","author":"Berkley","year":"2019","journal-title":"Hum. Resour. Manag. Rev."},{"key":"ref10","first-page":"1","article-title":"Disabling practices and theories?: exploring chronic illness in disability studies","volume-title":"Scandinavian J. Disability Res.","author":"Bertilsdotter Rosqvist","year":"2017"},{"key":"ref11","doi-asserted-by":"publisher","first-page":"1038","DOI":"10.1177\/0961203313499958","article-title":"Physician-patient interactions and outcomes in systemic lupus erythematosus (SLE): a conceptual model","volume":"22","author":"Beusterien","year":"2013","journal-title":"Lupus"},{"key":"ref12","doi-asserted-by":"crossref","DOI":"10.1525\/9780520930711","volume-title":"Unbearable weight. Feminism, western culture, and the body","author":"Bordo","year":"2003"},{"key":"ref13","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1057\/978-1-137-35913-1","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun","year":"2006","journal-title":"Qual. Res. Psychol."},{"key":"ref14","doi-asserted-by":"crossref","DOI":"10.1093\/acprof:oso\/9780195388275.001.0001","volume-title":"Identity theory","author":"Burke","year":"2009"},{"key":"ref15","doi-asserted-by":"publisher","first-page":"167","DOI":"10.1111\/1467-9566.ep11339939","article-title":"Chronic illness as biographical disruption","volume":"4","author":"Bury","year":"1982","journal-title":"Sociol. Health Illn."},{"key":"ref16","first-page":"657","article-title":"The body, identity, and self: Adapting to impairment","volume-title":"The Sociological Quarterly","author":"Charmaz","year":"1995"},{"key":"ref17","doi-asserted-by":"publisher","first-page":"302","DOI":"10.1177\/10778004008003007","article-title":"Stories and silences: disclosures and self in chronic illness","volume":"8","author":"Charmaz","year":"2002","journal-title":"Qual. Inq."},{"key":"ref18","doi-asserted-by":"publisher","first-page":"6","DOI":"10.1108\/18363261011106858","article-title":"Disclosing illness and disability in the workplace","volume":"3","author":"Charmaz","year":"2010","journal-title":"J. Int. Educ. Bus."},{"key":"ref19","first-page":"651","article-title":"Narrative inquiry: Multiple lenses, approaches, voices","volume-title":"The sage handbook of qualitative research","author":"Chase","year":"2005"},{"key":"ref20","volume-title":"Narrative inquiry: Experience and story in qualitative research","author":"Clandinin","year":"2000"},{"key":"ref21","doi-asserted-by":"publisher","first-page":"20","DOI":"10.1080\/09687599.2017.1379951","article-title":"Quadriplegia, virtue theory, and flourishing: a qualitative study drawing on self-narratives","volume":"33","author":"Clifton","year":"2018","journal-title":"Disability Soc."},{"key":"ref22","doi-asserted-by":"publisher","first-page":"470","DOI":"10.1108\/EDI-11-2016-0105","article-title":"Justice and fairness in the workplace: a trajectory for managing diversity","volume":"37","author":"Dahanayake","year":"2018","journal-title":"Equality, Diversity Inclusion"},{"key":"ref23","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1093\/bjsw\/bcaf046","article-title":"Mobilizing feminist disability studies for expansive social work scholarship","author":"David","year":"2025","journal-title":"Br. J. Soc. Work"},{"key":"ref24","article-title":"Technical assistance guidelines on the employment of people with disabilities","year":"2004"},{"key":"ref25","first-page":"314","article-title":"The qualitative research interview","volume-title":"Med. Educ","author":"DiCicco-Bloom","year":"2006"},{"key":"ref26","first-page":"E512","article-title":"Invisible illness and measurability","volume-title":"AMA Journal of ethics","author":"Dobson","year":"2021"},{"key":"ref27","doi-asserted-by":"publisher","first-page":"5","DOI":"10.15406\/bbij.2017.05.00149","article-title":"Sampling and sampling methods","volume":"5","author":"Etikan","year":"2017","journal-title":"Biometrics Biostatistics Int J"},{"key":"ref28","doi-asserted-by":"crossref","first-page":"54","DOI":"10.35335\/ijosea.v14i1.466","article-title":"Create diversity and equality in the workplace through inclusive and fair HR management practices","volume":"14","author":"Faruk","year":"2024","journal-title":"Int. J. Soc. Sci. Econ. Art"},{"key":"ref29","doi-asserted-by":"publisher","first-page":"190","DOI":"10.1136\/bmjqs-2024-017506","article-title":"Experiences with diagnostic delay among underserved racial and ethnic patients: a systematic review of the qualitative literature","volume":"34","author":"Faugno","year":"2024","journal-title":"BMJ Quality Safety."},{"key":"ref30","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1016\/j.jaut.2018.11.001","article-title":"Systemic lupus erythematosus: diagnosis and clinical management","volume":"96","author":"Fava","year":"2019","journal-title":"J. Autoimmun."},{"key":"ref31","doi-asserted-by":"crossref","first-page":"54","DOI":"10.7208\/chicago\/9780226260037.001.0001","volume-title":"The wounded storyteller. Body, illness, and ethics (second)","author":"Frank","year":"1995"},{"key":"ref32","doi-asserted-by":"crossref","DOI":"10.1093\/acprof:oso\/9780198237907.001.0001","volume-title":"Epistemic injustice, power & the ethics of knowing","author":"Fricker","year":"2007"},{"key":"ref33","doi-asserted-by":"publisher","first-page":"1","DOI":"10.2979\/NWS.2002.14.3.1","article-title":"Integrating disability, transforming feminist theory","volume":"14","author":"Garland-Thomson","year":"2002","journal-title":"NWSA J."},{"key":"ref34","doi-asserted-by":"publisher","first-page":"638","DOI":"10.1007\/s10926-020-09956-1","article-title":"Does it matter what your reasons are when deciding to disclose (or not disclose) a disability at work? The association of workers\u2019 approach and avoidance goals with perceived positive and negative workplace outcomes","volume":"31","author":"Gignac","year":"2021","journal-title":"J. Occup. Rehabil."},{"key":"ref35","volume-title":"The presentation of self in everyday life","author":"Goffman","year":"1959"},{"key":"ref36","volume-title":"Stigma. Notes on the management of spoiled identity","author":"Goffman","year":"1963"},{"key":"ref37","doi-asserted-by":"publisher","first-page":"78","DOI":"10.1111\/1467-9566.13692","article-title":"The double bind of social legitimacy: on disability, the sick role, and invisible work","volume":"46","author":"Grue","year":"2024","journal-title":"Sociol Health Illness"},{"key":"ref38","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1111\/j.1748-720x.2001.tb00037.x","article-title":"The girl who cried pain: a bias against women in the treatment of pain","volume":"29","author":"Hoffmann","year":"2001","journal-title":"J Law Med Ethics"},{"key":"ref39","doi-asserted-by":"publisher","first-page":"1365","DOI":"10.1177\/0018726715612901","article-title":"Constructing positive identities in ableist workplaces: disabled employees\u2019 discursive practices engaging with the discourse of lower productivity","volume":"69","author":"Jammaers","year":"2016","journal-title":"Hum. Relat."},{"key":"ref40","volume-title":"Social identity (third)","author":"Jenkins","year":"2008"},{"key":"ref41","doi-asserted-by":"crossref","DOI":"10.2979\/6841.0","volume-title":"Feminist, queer, crip","author":"Kafer","year":"2013"},{"key":"ref42","doi-asserted-by":"publisher","first-page":"1","DOI":"10.28968\/cftt.v5i1.29618","article-title":"Crip kin, manifesting","volume":"5","author":"Kafer","year":"2019","journal-title":"Catalyst"},{"key":"ref43","doi-asserted-by":"publisher","first-page":"491","DOI":"10.1108\/EDI-06-2020-0146","article-title":"Hiding but hoping to be found: workplace disclosure dilemmas of individuals with hidden disabilities","volume":"41","author":"Kulkarni","year":"2022","journal-title":"Equality Diversity Inclusion"},{"key":"ref44","doi-asserted-by":"publisher","first-page":"19","DOI":"10.1515\/ijdhd-2016-0036","article-title":"Identity and its reconstruction and disabled people","volume":"16","author":"Lejzerowicz","year":"2017","journal-title":"Int. J. Disability Human Develop."},{"key":"ref45","doi-asserted-by":"publisher","first-page":"1878","DOI":"10.1016\/S0140-6736(14)60128-8","article-title":"Systemic lupus erythematosus","volume":"384","author":"Lisnevskaia","year":"2014","journal-title":"Lancet"},{"key":"ref46","doi-asserted-by":"crossref","DOI":"10.1016\/j.lana.2023.100650","article-title":"Structural ableism in public health and healthcare: a definition and conceptual framework","volume-title":"The lancet regional health - Americas","author":"Lundberg","year":"2024"},{"key":"ref47","doi-asserted-by":"publisher","first-page":"233","DOI":"10.1007\/s41542-024-00192-0","article-title":"Chronic health conditions in the workplace: work stressors and supportive supervision, work design, and programs","volume":"8","author":"McGonagle","year":"2024","journal-title":"Occupational Health Sci."},{"key":"ref48","doi-asserted-by":"publisher","first-page":"14","DOI":"10.16993\/sjdr.550","article-title":"Work and invisible disabilities: practices, experiences and understandings of (non)disclosure","volume":"21","author":"Norstedt","year":"2019","journal-title":"Scand. J. Disabil. Res."},{"key":"ref49","doi-asserted-by":"publisher","first-page":"882","DOI":"10.1093\/PM\/PNZ350","article-title":"Why are women with fibromyalgia so stigmatized?","volume":"21","author":"Quintner","year":"2020","journal-title":"Pain Med."},{"key":"ref50","article-title":"Employment Equity Act No 55","year":"1998"},{"key":"ref51","first-page":"1","article-title":"Narrative analysis","volume-title":"Narrative, memory & everyday life","author":"Riessman","year":"2005"},{"key":"ref52","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1086\/709213","article-title":"Integrating race transforming feminist disability studies","volume":"46","author":"Schalk","year":"2020","journal-title":"J. Women Culture Soc."},{"key":"ref53","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3390\/socsci14020067","article-title":"Ableism and employment: a scoping review of the literature","volume":"14","author":"Sharma","year":"2025","journal-title":"Soc. Sci."},{"key":"ref54","doi-asserted-by":"publisher","first-page":"284","DOI":"10.2307\/2695840","article-title":"The past, present, and future of an identity theory","volume":"63","author":"Stryker","year":"2000","journal-title":"Quarterly"},{"key":"ref55","doi-asserted-by":"publisher","first-page":"286","DOI":"10.16993\/sjdr.1130","article-title":"Screwing the social model of disability","volume":"26","author":"Thorneycroft","year":"2024","journal-title":"Scand. J. Disabil. Res."},{"key":"ref56","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3389\/fpsyg.2020.01162","article-title":"The ccological-enactive model of disability: why disability does not nntail pathological embodiment","volume":"11","author":"Toro","year":"2020","journal-title":"Front. Psychol."},{"key":"ref9001","first-page":"82","article-title":"On Becoming a Qualitative Researcher: The Value of Reflexivity. The Qualitative Report","volume":"12","author":"Watt","year":"2015"},{"key":"ref57","doi-asserted-by":"publisher","first-page":"1035","DOI":"10.1016\/j.socscimed.2003.12.001","article-title":"\u201cI am not the kind of woman who complains of everything\u201d: illness stories on self and shame in women with chronic pain","volume":"59","author":"Werner","year":"2004","journal-title":"Soc. Sci. Med."},{"key":"ref58","doi-asserted-by":"publisher","first-page":"1409","DOI":"10.1016\/S0277-9536(02)00520-8","article-title":"It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors","volume":"57","author":"Werner","year":"2003","journal-title":"Soc. Sci. Med."},{"key":"ref59","doi-asserted-by":"publisher","first-page":"533","DOI":"10.1080\/09687599.2023.2298774","article-title":"Gender, feminism and the project of critical disability studies (CDS)","author":"Wilde","year":"2023","journal-title":"Disability Soc."},{"key":"ref60","volume-title":"The beauty myth: How images of beauty are used against women","author":"Wolf","year":"1991"}],"container-title":["Frontiers in Psychology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpsyg.2025.1644068\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,12]],"date-time":"2025-11-12T05:19:36Z","timestamp":1762924776000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpsyg.2025.1644068\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,11,12]]},"references-count":61,"alternative-id":["10.3389\/fpsyg.2025.1644068"],"URL":"https:\/\/doi.org\/10.3389\/fpsyg.2025.1644068","relation":{},"ISSN":["1664-1078"],"issn-type":[{"value":"1664-1078","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,11,12]]},"article-number":"1644068"}}