By Hannah Musiyarira – University of Liverpool
For many, the major parts of life such as work, family, and health feel like a constant balancing act. But what happens when alongside the challenging dynamics of work and family life your health is also unpredictable?
For parents and caregivers with long-term health conditions (LTCs), the pressure to “just keep going” can often feel more intense. Many are working through illness, not because they want to, but because they feel they have no choice. The fear of falling behind, of being seen as unreliable, of financial insecurity can all play into the decision to show up, even on the worst days.
As flexible working remains a hot topic and the debate over home vs. office work rages on, there’s an emerging narrative that overlooks the needs of those who depend on alternative work arrangements to simply maintain employment. The expectations placed on working parents, carers, and individuals with disabilities or LTCs are often unrealistic. This reflects a broader system that assumes we all fit into the same mould of healthy, available, and able to separate work from the rest of life. But the reality is much more complex, especially for those juggling chronic illness and family responsibilities.
It’s important to distinguish between pushing through work during a flare-up of symptoms or a period of acute illness and the desire to maintain employment while managing a long-term health condition. With the right adjustments and balance, work can be highly rewarding and even beneficial to health.
So how do we make work work for those with fluctuating health conditions?
The Reality of Working with a Long-Term Health Condition
Most people can relate to going to work when they probably shouldn’t. Whether it’s because of an urgent deadline, a lack of cover, or guilt about leaving colleagues to deal with the workload. But for those with LTCs or disabilities, these decisions often come with even greater pressure. Fear of triggering absence policies because of the persistent nature of LTCs, concerns about being seen as unreliable, or the stigma surrounding their condition can make taking time off feel like a risk. Many also worry about how their health will impact career progression, fearing they’ll be overlooked for opportunities simply because their needs don’t fit the traditional view of an ‘ideal worker’ or current ideas about what it means to be ‘professional’.
“You just don’t know what reaction you’re going to get… I often worry about people judging me. And you just don’t want people to change their perception of who you are.”
The financial pressure to stay in work can be a source of stress when supporting a family, and the fear of losing a job due to health-related absences can heavily influence decision-making for those with long-term conditions. As one parent put it:
“Working through illness, pain, and fatigue is all to do with being afraid of… falling into poverty, being unable to give your children what they need. For me, the financial aspect is one of the big players here.”
Adding to this challenge is the unpredictable nature of chronic illness. Flare-ups rarely happen at a ‘convenient’ time. Symptoms don’t wait for quieter work periods or align neatly with childcare availability, making it even harder for parents to step back when they need to. On top of this, the rising cost of childcare can add another layer of pressure and complexity, with parents feeling guilty about not working on a day they’ve already paid for childcare. As another parent explained:
“I only have set days that I have childcare and that I am able to work without disruption. So, if I don’t work today, I don’t know when else I’m going to fit it in…. I just feel like it’s such a waste of money…not doing any work.”
Workplace culture often rewards those who start early, stay late, or go the extra mile outside of their contracted hours. But for parents with long-term health conditions, these expectations can be unfeasible, not just because of nursery drop-offs and childcare responsibilities, but also due to the need to carefully manage their energy levels. When flexibility only applies to extending work hours rather than setting healthy boundaries, employees with LTCs are left making impossible choices. Many end up sacrificing their personal time just to keep up with work demands. As one participant explained, she had to put in boundaries at work, not only to protect her health but to ensure she had enough energy left to spend with her son. Yet, too often, employees who try to prioritise their well-being in this way are seen as less committed, rather than simply making work sustainable alongside the rest of their lives.
“If work is too hard for doing two days and it’s making me ill, then I need to make some changes. I’m not going to miss out on another day with our son.”
The Role of Flexibility in Sustainable Work for All
Flexible work arrangements can significantly ease the burden on parents with chronic health conditions. Where possible, remote work allows employees to conserve energy, manage symptoms, and avoid exhausting commutes. However, while working from home offers valuable support, it can also blur the boundaries between working through illness and taking necessary sick leave. Managers must be mindful of the signs that someone is struggling, even if they are not physically present in the workplace.
Shifting the focus to output rather than physical presence is essential. Productivity isn’t defined by hours at a desk but by the work achieved. Trust plays a crucial role and when employees feel supported by managers, they can balance their health, family, and work more effectively. As one participant shared:
“My line manager is aware of my condition and other commitments and allows me to work flexibly, so there is no need for further discussion. She trusts me to do my job.”
Family can be a vital source of support for managing health and work, whether through sharing household tasks or childcare. However, for those in diverse family structures, such as single-parent households, true flexibility at work is essential. Organisations must recognise that circumstances can shift unpredictably, and for these individuals, no two weeks may look the same.
Creating a workplace culture that embraces open conversations about health, genuine flexibility, and policies that reflect the fluctuating nature of LTCs is essential. Too often, seeking accommodations comes with anxiety, as individuals fear being seen as a burden. But everyone, regardless of their health or family circumstances, deserves the opportunity to thrive at work, benefiting not just themselves but also their organisations and society as a whole.
“It can be really difficult to work when you’ve got long-term health conditions… I just think it’d be such a shame if I couldn’t work because, like I said, I love my job. I never thought I would be able to have a full-time job, especially having children. But I have found the job and organisation that helps me continue to manage all those symptoms-alongside it all.”