Believe it or not, over a life-time an average person spends 3,750 days at work. Work provides income, independence, structure to the day, social interactions, and personal satisfaction from a task well done.
Based on published figures the workforce population is aged between 15-64; with 50-64 and 25-34 year olds contributing to the bulk of this (see Figure below). And MS is in the thick of it.
The effects of MS on an individuals ability to work is varied, but the outcomes in the majority of cases are not favorable. Following a diagnosis, there are often transitions at work, with changes in work patterns, reduction in work hours, change in roles or even organizational change, and periods of temporary unemployment. This has a negative impact on career prospects, leading to reduced pay, reduced job security, restricted training opportunities, career plateau’s, and last but not least early retirement.
How then is person with MS supposed to navigate this hostile environment? Moreover, if you don’t live in a high-income country, what are the specific hurdles faced by low- and middle-income countries with regards to chronic illnesses (see abstract below)?
It goes without saying being forewarned is forearmed when attempting negotiating this area successfully. The key may be exploring new opportunities.
Reasons for transitions:
“Transitions to new roles or areas of work were pursued even in the mild and episodic stages of illness, where acute functional limitations from relapses were mostly reversible with treatment.”
“Many participants narrated being in stressful work or life situations in the period preceding their diagnosis and relapses. Based on their personal experiences and reading of MS educational material (online resources from international MS societies, and patient blogs) participants were prompted to make role, work and career changes as a way to achieve illness-work-life balance and reduce avoidable sources of stress to protect their illness futures.”
“Disclosing illness status to employers is topical in the international literature on work and chronic illness. While disclosure is often a legal choice as provided through many discrimination and privacy of information legislations in high-income countries such as USA, UK and Australia, employment or recruitment practices in Malaysia often compel applicants to disclose any preexisting medical conditions.These dynamics often mean that employers hold more power over employees.”
Exploring opportunities; change the way you see yourself:
“The participants described different strategies, and levels of ability to explore new work roles and career paths that better served their new career goals after the illness diagnosis. Participants referred to MS as the bittersweet impetus to pursue new career ideas or goals that emerged after diagnosis. Some described how they began to pay more attention to their hobbies and interests, such as creative writing and sales, as skills that could be monetised or developed as a career.“
“They each described different types and levels resources such as education,professional networks, work experience and achievements that they were able to leverage to make positive changes. Dev described that hew as able to move into a new role within his organization, namely be-cause of his duration of employment, the loyalty he demonstrated to his organization and his relationships with senior management. Having worked for ten years in the same organization, his employers were willing to facilitate this transition.”
“The choice of the organization also influenced her access to new opportunities. She accepted a role with an organization that implemented diversity and inclusion policies based on the norms of its international parent company. She chose to self-disclose during the interview,and the company outlined the relevant work modification and support policies. During the times of illness relapses, she indicated that the company implemented those policies well, and provided her with the support and sick-leave she needed.“
Soc Sci Med. 2019 Nov 23;245:112699. doi: 10.1016/j.socscimed.2019.112699. [Epub ahead of print]
Chronic illness and sustainable careers: How individuals with multiple sclerosis negotiate work transitions in a middle-income country.
Reports of work change and transitions are common amongst individuals with chronic illnesses such as multiple sclerosis (MS). However, there is little research on the lived experience of these work transitions. The scarcity of this research is particularly evident within low-and-middle-income countries, where protection laws and resources such as anti-discrimination laws and reasonable work modifications may not exist or be well enforced. In this paper, we explore how and why individuals with MS seek and achieve work transitions in the structural context of Malaysia. We interviewed ten working individuals with MS (July-december 2015) using a joint hermeneutic phenomenology and constructivist grounded theory approach. Using a broad conceptual lens of ‘sustainable careers’, we examine their careers as a series of experiences, decisions, and events, paying attention to the influences of context, time, their personal levels of agency and sense of meaning. Participants described work transitions as early as within the first year of diagnosis, that were prompted by voluntary, involuntary and semi-voluntary reasons. Key aspects of the process of seeking new roles included an exploration of alternative roles and paths, and then acquiring, trialing/adapting and remaining engaged in their new roles. Participants identified the perception and experience of ‘being unemployable’, based on how their diagnosis and short-term symptoms were responded to by employers. Nevertheless, participants used various strategies and career resources to obtain and maintain meaningful work roles. However, success in obtaining or maintaining new roles were not equally achieved. This research draws attention to the cumulative economic disadvantage of a chronic illness diagnosis, even at milder and episodic stages. Furthermore, it reiterates the need for cohesive structural protection in low-and-middle-income countries to facilitate a more equal ability to remain economically resilient and capable of engaging in meaningful long-term careers when living with a chronic illness.