Qualitative study to explore the employment experiences and perspectives of women living with multiple sclerosis

Introduction

Multiple sclerosis (MS) is one of the most common causes of neurological disability during the most productive years of life and is a major contributor to unemployment. Symptoms such as physical disability, fatigue, cognitive dysfunction, and depression are frequently associated with challenges in working life.^1,2 The impact of MS on employment significantly affects quality of life, leading to financial difficulties, social withdrawal, and emotional distress.^3,4

Maintaining employment has been shown to positively influence health, well-being, and sense of identity in individuals with MS.^5,6 However, for women living with MS (WwMS), employment can be even more challenging due to the intersection of gender roles, caregiving responsibilities, and health-related stigma.^7,8 Women often face workplace discrimination, limited flexibility and inadequate institutional support, which can lead to early workforce withdrawal or underemployment.^9,10

Despite these challenges, WwMS represent a skilled and experienced labor force. The social, psychological, and financial benefits of employment are particularly meaningful for this group. Understanding their lived experiences is therefore essential to identify the specific difficulties they face and the support systems that may enable their continued participation in working life.^10,11

This study aimed to provide an in-depth exploration of the employment experiences and workplace perspectives of WwMS. The analysis focused on structural and personal challenges to sustaining employment, with particular attention to workplace conditions, social networks, and family support. Furthermore, the study examined the intersection of gender roles and social stigma, highlighting broader sociocultural dynamics that shape employment trajectories.

To better understand these issues, we drew on Goffman's Stigma Theory, which highlights how individuals with chronic or invisible illnesses may manage their identities in response to perceived social judgments.^12,13 For WwMS, decisions about disclosure, workplace expectations and job retention occur within broader societal attitudes toward disability and gender.^14,15 By framing the analysis within this conceptual approach, our aim was to interpret the women's experiences not only descriptively but also in relation to the structural and social factors that shape their working lives.

Methods

Data collection tools

The research data were collected using a socio-demographic form and a semi-structured interview form developed by the researchers based on the relevant literature. The interview form included items assessing participants’ socio-demographic characteristics such as age, occupation, education level, income status, age at diagnosis of MS, working hours, and workplace satisfaction (Table 1). In addition, five open-ended questions were used to explore the participants’ experiences and perspectives regarding their employment (Table 2). To evaluate the comprehensibility of the questions, a pilot study was conducted with two WwMS. Subsequently, the questions were finalized based on feedback from two experts experienced in qualitative research to ensure the content validity of the interview form.

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Table 1.

Descriptive characteristics of WwMS.

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Variable	Category	n	%
Marital status	Single	2	10
	Married	18	90
Having children	Yes	15	75
	No	5	25
Income status	İncome > expenditure<	9	45
	Income = expenditure	8	40
	Income < expenditure	3	15
Workplace satisfaction	Yes	17	85
	No	3	15
Working pattern	Office hours	17	85
	Shift work	3	15
Duration of employment	≤5 years	5	25
	6–10 years	4	20
	≥11 years	11	55
Daily working hours	≤8 h	10	50
	≥9 h	10	50
Occupation	Offıcer/Self employment	4	20
	Employee	16	80

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Table 2.

Open-ended questions and corresponding thematic categories.

No	Interview question	Main theme / sub-theme
1	When you were diagnosed with MS, were you able to share this information with your workplace managers?	1. Willingness to share the diagnosis - Desire to share personal experiences - Need for support from employers and colleagues
2	What kinds of symptoms or discomforts have you experienced due to MS?	2. Willingness to work to be involved in life - Desire to work despite MS symptoms - Sense of well-being through productivity
3	Have you ever considered quitting your job because of the symptoms related to MS?	2. Willingness to work to be involved in life - Economic necessity
4	In your opinion, how has your family and social life been affected by MS in the context of being a working woman?	3. Social isolation and social support - Desire for solitude and burnout - Family and spouse support
5	How do you think the working conditions and environment should be organized for women with MS?	4. Expectations and suggestions from the employers - Organization of working conditions - Informing colleagues

Note: This mapping illustrates how interview questions contributed to theme development and supports analytic transparency.

In this study, in-depth interviews were conducted by two members of the research team to explore the participants’ views on their work life. Before the interview, the participants were informed that the written and audio recording of the interview would depend entirely on the permission of the interviewee and their written consent was obtained. The interviews were conducted in person in the clinic's interview room, which was designed to create a suitable physical environment. The interview with each participant lasted approximately 30–40 min. Immediately after each interview, the notes were reviewed by all five members of the research team, and any missing data were confirmed with the participant.

Results

The mean age was 36.7 ± 6.55 years (range: 26–51), mean years of education were 11.1 ± 4.63 (range: 8–16), and the mean age at diagnosis was 29.7 ± 7.86 years (range: 16–50). The average EDSS score was 1.15 ± 0.93 (range: 0–3), and the mean duration since diagnosis was 12.3 ± 7.04 years (range: 1–25). The majority of participants were married (90%) and had children (75%). Nearly half reported income exceeding expenditures. Most participants were satisfied with their workplace and worked standard office hours (85%). Over half had ≥11 years of employment experience, half worked ≤8 h daily, and most were employes (80%). Additional descriptive characteristics are presented in Table 1. The main themes and corresponding sub-themes related to employment experiences are summarized in Table 2.

To enrich the interpretation of the qualitative data, the open-ended interview questions were mapped onto the main and sub-themes that emerged from the thematic analysis. This approach facilitated a clearer understanding of how participants’ narratives aligned with the conceptual framework of the study. Table 2 shows how each question contributed to identifying specific themes, such as willingness to disclose the diagnosis, motivation to remain employed, experiences of social support or isolation, and expectations of employers. This structure not only improved analytic transparency but also enhanced the trustworthiness of the findings.

Most participants felt a strong need to share their diagnosis with supervisors or colleagues. Many hesitated due to fears of job loss, judgment, or lack of understanding. Workplace culture and past experiences strongly shaped disclosure, and lack of institutional protection sometimes led to precarious employment.

Discussion

This study explored the employment experiences of WwMS using a descriptive phenomenological approach. Our findings revealed four core themes: the challenges and hesitations surrounding diagnosis disclosure, the drive to remain employed despite physical and emotional strain, the interplay between social isolation and support, and concrete expectations from employers. These experiences highlight how gender, chronic illness, and workplace dynamics intersect in shaping employment outcomes for WwMS.

The fear of stigma emerged as a key barrier to disclosure, consistent with Goffman's Stigma Theory. ²¹ These concerns reflect the anticipated stigma commonly experienced by individuals with chronic, invisible illnesses. Drawing on Goffman's Stigma Theory, participants’ reluctance to disclose illustrates the tension between “passing” as healthy and being authentic in their identity.^12,13 This finding aligns with evidence that employes with invisible disabilities often choose non-disclosure as a coping strategy.^22,23,24 More recently, Railton et al. reported similar disclosure hesitations among WwMS in the UK, indicating that this remains a cross-cultural challenge across healthcare and workplace systems. ¹⁰ These patterns show that concealment is both a personal coping strategy and a reaction to organizational climates lacking adequate protection. Importantly, Stigma Theory functioned in this study as a sensitizing framework rather than a deterministically applied model; we initially identified it as relevant during study design, but its explanatory power became clearer as themes of anticipated stigma and concealment emerged. Our findings therefore extend the theory by illustrating how stigma is reinforced not only through interpersonal interactions but also through structural vulnerabilities, such as lack of formal protections and irregular employment conditions. The findings suggest that fear of discrimination often leads individuals with MS to conceal their condition, even when this compromises their health or well-being. These dynamics highlight the need for proactive employer education and inclusive workplace policies to ensure safe and supported disclosure.

Despite their health challenges, participants demonstrated strong agency in choosing to stay employed. For many, work represented more than financial necessity—it was a source of identity, purpose, and social integration. This aligns with Rumrill et al., who found that employment supports quality of life and self-identity in people with MS. ³ Our results extend this by illustrating how gendered roles intensify the determination to remain employed, even when work exacerbates fatigue or cognitive strain. The resilience observed in our sample echoes Social Role Theory, ²⁵ where societal expectations around caregiving and economic participation intersect to shape women's decisions. In line with Social Role Theory, our findings demonstrate that women internalize not only traditional caregiving expectations but also the responsibility to sustain household income, which amplifies their commitment to remain employed despite health-related barriers. While these theoretical lenses were identified a priori, their relevance was reinforced through the emergent themes, indicating a reciprocal relationship between empirical findings and theoretical interpretation.

The role of support systems was particularly salient. Participants who received emotional or instrumental support from spouses, family members, or colleagues reported better capacity to manage the demands of work. This finding resonates with Román et al., which demonstrated that social support mitigates work-related difficulties and sustains employment among persons with MS. ² Together, these results reinforce stress-buffering models, highlighting how supportive networks moderate the negative effects of chronic illness on working life. ²⁶ In contrast, women lacking such networks expressed heightened vulnerability to isolation and burnout, further emphasizing the inequities in access to support.

Differences observed by income, education, and occupation echo the findings of Dobson et al., who emphasized the importance of social determinants in shaping MS-related health and employment outcomes. ⁹ Our results further illustrate how these structural factors intersect with gendered expectations, influencing disclosure decisions and access to accommodations. In this way, socioeconomic position and gender roles jointly shape employment trajectories for WwMS.

Participants clearly and consistently voiced a need for more inclusive work environments. They believed increased awareness would foster empathy, reduce stigma, and improve workplace inclusion. This aligns with disability-inclusive workplace models, which emphasize both structural adjustments and organizational culture change. ²⁷ Participants’ voices underscore that meaningful inclusion requires more than policy—it demands proactive communication, supervisor training, and valuing diverse abilities. Without such changes, even women with mild disability may struggle to maintain employment. Their suggestions, which included flexible scheduling, teleworking, workload adjustments, and disability awareness training, reflected both practical concerns and deeper aspirations for equity. These findings align with international recommendations for reasonable accommodations.^27,28 However, our data indicate inconsistent implementation, particularly in the private sector, reflecting the policy–practice gap noted by Vitturi et al.. ¹⁵ To enhance the practical relevance of these findings, employer recommendations can be conceptualized at multiple levels. Short-term, feasible adjustments include scheduled rest breaks, temperature regulation, ergonomic modifications, and redistribution of physically demanding tasks. Intermediate strategies involve supervisor training on MS-related symptoms, structured communication protocols for discussing health needs, and routine workplace assessments to identify environmental stressors. Long-term structural changes may include integrating disability inclusion into organizational policies, aligning workplace practices with International Labor Organization (ILO) and Convention on the Rights of Persons with Disabilities (CRPD) standards, and establishing monitoring mechanisms to ensure compliance across sectors.^27,28 Evidence from broader chronic illness and disability research supports the relevance of these recommendations. Wong et al. showed that accommodations such as flexible hours, task modification, and ergonomic supports improve both return-to-work outcomes and job retention among people with physical disabilities. ²⁹ Likewise, Varekamp and van Dijk found that employes with chronic diseases benefit from workload adjustments, flexible scheduling, and supportive supervision. ³⁰ These findings indicate that the accommodations identified in our study are consistent with evidence-based strategies that enhance employment sustainability across chronic illness contexts.

One of the key contributions of this study is its emphasis on lived experience and contextualized, gender-sensitive insight. While previous studies have quantified employment rates and general barriers for people with MS,^31,32 our findings underscore the nuanced realities of women navigating chronic illness within work cultures often ill-equipped to respond to their needs. Work was not simply a matter of functionality, but an arena where identity, visibility, and value were continuously negotiated. The invisibility of MS symptoms contributes to a culture of silence, where disclosure is simultaneously risky and necessary. This silent tension, characterized by the difficult choice between concealing one's condition for self-protection and disclosing it to gain support, highlights the complex dynamics of self-presentation in chronic illness contexts. ³³ Moreover, the emotional labor involved in appearing healthy despite symptoms can intensify psychological strain.

These findings emphasize the need for culturally competent and empathetic organizational environments that acknowledge and address the nuanced realities of living and working with an invisible illness. To improve employment outcomes for WwMS, a systemic shift is required. Legal protections must be supported by proactive organizational practices: education of managers and coworkers, inclusive human resources policies, and accessible workplace designs. Public awareness campaigns and leadership training on disability inclusion can help shift workplace cultures from tolerance to genuine inclusion. Employment must be reframed not merely as a medical feasibility, but as a social right underpinned by dignity, accessibility, and recognition of difference. Our findings reinforce that sustainable employment outcomes depend on both micro-level interactions and macro-level policy commitments, highlighting the need for integrated approaches that bridge theoretical understanding, lived experience, and practical implementation.

This study has several limitations. The sample was geographically restricted and recruited through a physician–patient network, which may have introduced volunteer bias and reduced the diversity of perspectives. In addition, most participants worked regular office hours, with limited representation from shift-based or physically demanding occupations, which constrains the transferability of findings across different work environments. Women with higher disability levels (EDSS > 3) or those who had already left the workforce were excluded, limiting insights into the experiences of individuals with moderate-to-severe disability or employment loss. Although participants’ socio-demographic characteristics such as age, education, income, job satisfaction, and working hours were collected, these variables were not systematically analyzed. Furthermore, as a qualitative study, the findings reflect participants’ subjective experiences rather than objective measures. Future research supported by larger, occupationally diverse samples and complemented by quantitative approaches is needed to more comprehensively evaluate the factors influencing employment among WwMS.

Conclusion

This study shows that employment is not only a financial necessity but also a vital source of identity, resilience, and social participation for WwMS. Our findings show how stigma, gender roles and socioeconomic factors shape disclosure, support and job retention, adding a gender-sensitive perspective. Practically, the results point to clear priorities: flexible scheduling, reasonable workloads, environmental adjustments, and MS-specific awareness training for supervisors and colleagues, supported by stronger policy enforcement against discrimination. Sustainable employment for WwMS requires both individual determination and systemic commitment from employers and policy makers to foster inclusive and equitable workplaces.