As described by the participants, learning to live with MS often required changes in their daily lives and mindset which could be challenging, especially for those used to high levels of productivity. Some expressed difficulties in mentally adapting to MS, and their responses reflected a conflict between looking after their health and being passionate about their work. This conflict did not just happen at the beginning, but was something that participants continuously faced and found challenging.

Many described a process of letting go of old routines and adapting to new circumstances. For some, this meant choosing an approach that felt unfamiliar in the moment but was understood as beneficial in the long term.

The participants acknowledged that their own behavior had sometimes contributed to an overwhelming situation, showing how critical reflection was a first step in knowing how to approach MS differently. By looking back, some participants shared how they wished they had been kinder to themselves during the initial stages of adapting to MS, rather than trying to carry on as normal.

However, part of adapting to MS was not just about challenging oneself and breaking old habits; it was also about drawing on existing skills and personal strengths. For example, being proactive and solution-oriented were two attributes commonly highlighted as contributing to better outcomes.

Managing MS was a constant balancing act in the participants’ lives, where they had to navigate symptoms and other manifestations of the disease while striving to remain productive at work. Becoming aware of and learning how to avoid stress or exhaustion was frequently mentioned, as was learning how to regulate themselves better and make the most effective use of their limited capacity. As described, the better they understood their disease and how it “behaved,” the more adept they were at recognizing early warning signs. Participants who had lived with MS for a long time shared how they had gradually learned to manage their condition, and by that, achieving a sense of empowerment.

Given the fluctuating nature of MS, the participants often discussed the importance of proactive planning and creating good conditions for themselves. They knew that they might have days where their symptoms are manageable, allowing them to work effectively, while other days could be significantly more challenging. Furthermore, participants described how they adapted their strategies based on the specific symptoms or limitations they faced. For instance, those with fatigue described how they withdrew socially to save energy, while those with mobility issues planned shorter routes to and from work to minimize physical strain. Participants also reported experiencing more stable periods, allowing them to work with little or no discomfort. However, the strategy in these cases was to remain attentive as they knew a stable period could end abruptly.

In addition to their own strategies, the importance of being acknowledged by managers and/or colleagues during difficult moments was further emphasized by some participants. It was, for example, shared how honest dialogues with one’s managers or co-workers could make one realize a work change was necessary.

Some participants also described seeking help from MS-focused rehabilitation programs, and that they continuously tried to transfer these learnings into their daily work life. For instance, how to slow down at work well before one’s energy levels are at their lowest.

It was evident that personal responsibility was at the core of their strategies. Participants emphasized that, due to having much narrower health margins compared to those without chronic illness, they felt an even greater need to carefully manage their health, as they understood that failing to maintain their routines could lead to setbacks or long-term consequences. Some noted that when they compromised on or deviated from their routines, they experienced a noticeable decline in their overall well-being, which in turn affected their work performance. Thus, they were determined to prioritize what was necessary to manage their MS effectively.

The participants further discussed the importance of being assertive about health needs, having the courage to make demands regarding their work setting, and having clear communication with managers and colleagues to create an environment more favorable to them. For some participants, this entailed disclosing the diagnosis. Others, however, chose not to share their health condition but still communicated their needs, focusing on practical solutions. Regardless of the approach, focus remained on creating work conditions that supported their health. However, participants described that it sometimes took time to learn how to effectively address health needs, as this involved not only understanding what they needed but also presenting them in a way that would foster understanding from their managers and colleagues. Participants also expressed that they sometimes needed to set firmer boundaries with others in the workplace, to make sure they did not take on more work than they could handle.

However, taking a stance for their health also involved using subtler, less visible strategies. For example, participants described managing their symptoms without informing their managers or colleagues. This could include occasionally resting during the workday and resuming tasks in the evening when feeling more energetic. Such maneuvers allowed participants to better balance their health needs with their professional responsibilities. For some, however, this was also an expression of how far they were willing to go to hide their difficulties with MS, and to avoid letting MS become a known fact.

Many of these subtler strategies for managing MS were facilitated by making use of already established workplace benefits. For some participants, flexibility was not only beneficial but also a decisive factor in choosing a particular workplace or deciding to stay. For example, several participants were employed in workplaces that offered flexible working arrangements and the option to work from home. These benefits were not implemented for employees with MS specifically, but were intended to benefit all staff members. By using them, participants could adapt their work environment and schedules to better accommodate their health needs. Flexible hours enabled the participants to manage fatigue and other symptoms more effectively by adjusting work schedules according to their energy levels. It was further described how not having to commute to and from work every day meant they could spend time working more efficiently, getting more work done at home in a more comfortable and calmer environment. This further allowed them to regain balance, especially during challenging periods related to their MS, while avoiding the pressure of maintaining a façade when they were not feeling well emotionally.

It was evident that actively looking after themselves fostered a sense of accomplishment and empowerment among the participants, which motivated them to continue their efforts. However, this responsibility could also be demanding as it required consistency, attentiveness, and a disciplined approach to routines. For instance, participants explained how, despite still being able to perform tasks, they had to forgo other, more social, aspects of their worklife in order not to exacerbate their condition.

The participants further discussed how the broader work context could either support or pose obstacles to their ability to manage MS. Examples were provided of both healthy work cultures that foster shared responsibility to make things work, and dysfunctional cultures where the burden of responsibility tends to fall more heavily on the individual.

However, some participants reported instances where their diagnosis was overlooked despite being in a supportive work environment and having communicated their MS limitations. This and similar instances led some to be realistic about their expectations of others.

It was often understood that waiting for others to accommodate their needs was not an option, but that it was ultimately their own responsibility to ensure that these were met.

MS prompted many participants to review their work life and how they want to spend their time. For some participants, this meant exploring an alternative career path. This was sometimes necessary as worsening symptoms did not allow them to continue with the same type of work as before, as they could potentially place themselves or others at risk. In other cases, it came from a deeper reflection on their work life and the long-term impact imposed by MS, and a wish to be proactive with lifestyle choices.

Work was often referred to as an important component in the participants’ lives. Consequently, choosing a new career was rarely a rushed, but rather a carefully thought-out decision. For example, participants found it necessary to alter the type of employment or reduce responsibilities to better manage the interplay between work life and MS. However, while the focus most often centered around adapting one’s work and career to accommodate the challenges of MS, participants also stressed the importance of not entirely abandoning their professional aspirations due to the disease. This involved steering one’s career towards a sustainable path, yet still aligned with professional interests, showing efforts to balance necessary adaptation while protecting valued aspects of their work.

In terms of disclosing or concealing MS at work, participants described that they were often mindful of how much personal information to share and the manner in which they shared it, considering aspects such as timing, outcomes, and their careers, reflecting a continuous negotiation of relational dynamics, as well as strategic, practical, and emotional considerations in the workplace.

Regarding timing of disclosure, they recognized that it involved not only deciding when to share their diagnosis but also creating conditions for a supportive response. Furthermore, disclosure was an ongoing process, not a one-time event. Starting a new job or interacting with new managers and colleagues raised a recurring question of when and how to disclose one’s condition.

They further discussed the importance of preparation when initiating discussions about MS at work. For example, participants described situations where, without adequate preparation, they sometimes shared more information than they were comfortable with. By thinking ahead and planning their responses, they were able to manage these discussions more effectively. This highlights the careful planning involved in managing how MS is perceived by others, not only to protect privacy but also to maintain normality and control in everyday work life.

The participants did not always disclose MS per se, but focused health-related discussions on symptoms. By choosing what pieces of information they felt comfortable sharing, they could redirect focus from the diagnosis towards practical solutions and adjustments. Martin described: “I did not tell a long story about my background when I started my job, but I explained that my eyesight was bad.” (Martin, 40 years old, time since diagnosis: 16 years).

Whether or not to disclose MS was also influenced by work performance and stability. Having an established and secure position in one’s job was further shared as a factor facilitating disclosure.

Other participants expressed that, despite managing their condition well, they worried that their manager or colleagues might still have doubts or negative assumptions about their ability to perform. Some felt more motivated to share their diagnosis once they could prove their ability to work effectively despite their MS. Conversely, some chose to conceal their diagnosis when their MS did not significantly impact their job performance, arguing that disclosure was not necessary.

The participants further stressed the importance of taking a long-term perspective and considering the potential implications of disclosing the diagnosis. This involved looking beyond the immediate challenges or crises one might face here and now. It was noted that rushed or impulsive decisions about disclosure could lead to unintended consequences or regret. One key point highlighted was the irreversibility of disclosure. Most did not see it as advisable to disclose MS to everyone in the workplace. Instead, they thought it was wiser to identify who genuinely needs to know, such as one’s closest manager or colleagues. While many stressed the importance of weighing the potential consequences of disclosure, it was also seen as vital to challenge any exaggerated fears or concerns. Some suggested de-dramatizing the act of disclosure, as others at work may not view one’s health situation as negatively as expected.

The rich data of the perspectives of PwMS represent the main strength of the current study. Our study offers a nuanced account of MS strategies in the workplace; not only focusing on these efforts as such, but also emphasizing the processes through which they emerge. Our results are, therefore, a valuable contribution to the limited research available on these topics. Using data from 16 participants, representing different ages, sexes, disease durations, and occupational categories, further enhances the diversity and depth of the findings. Credibility was enhanced by using a semi-structured interview guide with all participants. This ensured that each participant had the same opportunity to respond to the questions, which led to consistency in the data collection process.

An additional strength was the diverse educational and professional backgrounds of the authors. This contributed to a richer and more holistic understanding of the study and helped raise critical questions that improved the interpretation of the findings. Moreover, most of the authors were involved in the analysis. This helped verify and validate the findings and added robustness to the study, as it enhanced the trustworthiness of the results.

Moreover, extending the “illness work” and “biographical disruption” frameworks into the workplace represents a methodological strength. Together, these perspectives allow for a more nuanced understanding of self-management. While “illness work” (21, 22) captures the everyday practical efforts involved in managing a chronic condition, “biographical disruption” (23) situates these efforts within broader considerations of identity and life trajectory.

Providing descriptions of the research context and participants made it possible for others to assess the potential transferability of the findings in other research settings. It is important to note, however, that the Swedish context is distinctive due to its social insurance and employment laws (31), offering specific protections and support to PwMS, as well as other patient groups, conditions that may not be available in other countries. These policies can significantly influence the likelihood of disclosure among PwMS in Sweden, making our findings more relevant for countries with similar systems. Moreover, one could have considered complementing the interviews with a standardized measure of work-related difficulties, such as the MSWDQ-23 (46), to inform comparisons and transferability across populations.

Secondly, relying on video and telephone interviews may have affected the depth and nuance of the data collected, as physical presence often allows for better observation of non-verbal cues and a more natural rapport. However, studies suggest that video and telephone interviews offer several advantages, particularly in terms of participants’ energy and emotions (47). As in other studies, we found that this approach increased accessibility and convenience (48) for our participants. It also made it possible to include participants from various geographical locations without the need for travel, reducing barriers for those with mobility issues or time constraints. Furthermore, this approach created a more comfortable and flexible environment, potentially leading to more open and honest responses.

Moreover, this study largely reflects the experiences of office-based workers, which likely influenced the strategies they were able to employ for managing MS in the workplace. Office settings generally provide greater opportunities for rest and flexibility, opportunities that may be far less available in physically demanding jobs. Therefore, the transferability of our results is likely limited to similar sedentary, office-based work environments. Different approaches may be necessary for those in more physically demanding jobs, potentially involving more physical accommodations and job modifications (49, 50). Hence, further research should explore how PwMS in a wider range of work environments manage their condition.