Flexibility: energy limiting chronic illness and the future of work

By Anna Ruddock.

Photo by Martin Castro on Unsplash

On the face of it, organisations are getting better at facilitating “flexible working”. Inevitably, some are moving faster and more innovatively than others. Some of those others have yet to acknowledge that flexible working is an employment right that has been enshrined in UK legislation since 2014 rather than a reward for productivity. Nevertheless, you’d struggle to find an office-based organisation that hasn’t realised that flexible working is something they need to be thinking about.

So far so things-are-improving. That said, it’s a very limited definition of “flexibility” that is incorporated into most flexible working policies. What it usually means is a policy to allow employees to work outside the office. Which is important for those who benefit from it, including disabled people with energy limiting chronic illnesses (ELCI*), like me, who are well enough to work part-time but cannot physically spend all of that time in an office.

In my most recent job, I worked four days a week. I worked two of those days from home, alternating with days in the office. Adding the second day from home made a huge difference to my life. It meant that any day in the office was followed by a reprieve from an early alarm, a crowded commute, and the energy draining, pain inducing interaction and sensory stimulation that office life entails. My days at home were more in my control; my energy was channelled into work and not sucked up by additional stimulus; I began and ended fewer days exhausted, in pain, and with my immune system aflame; and if I needed to work from bed, I could, and no one had to know.

There are efforts on multiple fronts these days to draw attention to – to make visible – so-called “invisible illnesses”. This invisibility works at different levels. There is the national scandal of people too ill to leave their homes; ignored, disbelieved, and sometimes harmed by the medical profession, by policies and their architects, and by media representations. These people are physically invisible to wider society, although many have an online presence. Others feel more spectral – participating in society when their health allows, but only briefly, and often with a payback in the form of a relapse that renders them invisible for weeks or months on end. Then there are those of us fortunate enough to be out in the world more consistently, although constantly vigilant as we calculate the algebra of energy expenditure and symptom management in different domains of life. For many of us in this situation, there is a tension between our advocacy for greater social inclusion of people with “unseen” impairments, and our efforts to maintain the “invisible” nature of our disabilities at work.

By their very nature, fluctuating chronic illnesses demand flexible management. The unrelenting challenge lies in avoiding an exacerbation of symptoms at the end of each day, or the start of the next. The unimaginative way in which most organisations structure work makes this extremely difficult (and in a busy city nigh-on impossible). Working away from the office is a critical part of my personal strategy, and I happen to enjoy spending a good chunk of time alone, the demands of my illness notwithstanding. But I have friends with chronic illnesses who work from home purely in a reluctant effort to prevent relapses. They find working from home lonely and demotivating; if they are well enough to work, they would rather be in the office with their colleagues, feeling part of a team. Organisations need to reflect on their limited approach to flexible working and think carefully about ways in which employees with ELCI can protect their health without necessarily having to be away from the office, rendering themselves and their disabilities ever more invisible in the process.

How might flexible working at work enable more people with ELCI to participate in the life of organisations, without putting themselves in harm’s way? And how might working alongside people whose disabilities mandate different ways of working help render our impairments more visible, enhancing the authenticity and sincerity of diversity and inclusion agendas in the process? A few things to consider:

  • Consult, include, and learn from us. Be open-minded, imaginative, and ambitious about what flexibility could mean. No matter how well-intentioned the policy, it’s likely that you’re still asking someone to contort themselves into a pre-determined shape, rather than collaborating on its dimensions from the outset.
  • Managers should be trained to recognise and respond to the needs of disabled team members, including specific education about ELCI and the impact of both physical symptoms and the social and medical oppression that people with “invisible” impairments experience.
  • Consider the environment. Do you have designated quiet rooms, where employees can escape excessive stimulus for part of the day, while remaining part of the office culture?
  • Use technology better. If high profile organisations insist on remaining in London they need to be more creative in extending remote employment opportunities to talented people for whom life in London is simply too disabling and expensive to be viable.
  • Be more imaginative about how roles are structured. A person with ELCI might struggle to juggle multiple tasks and a meetings-heavy culture, but she might thrive in a more specific project-based role that allows her to organise her own time. Many people with chronic conditions feel worse in the morning – consider more flexible working hours in roles that demand less daily interaction. Why should someone whose optimal working hours are 2pm-10pm rather than 9am-5pm be denied the security of a permanent contract and paid leave? Similarly, consider patterns that allow for regular rest breaks – 7.5 hours of work spread over a 10-hour period, for example.
  • Jettison the supreme inflexibility of weekly hours and explore salary arrangements based on monthly, quarterly, or annual working hours.

Expanding definitions of flexible working offers an opportunity for a radical reimagining of how people with ELCI work, in the interests of everyone. We have a right to thrive within the constraints imposed by our impairments, and to challenge social and organisational barriers that disable us. Organisations need to think beyond the number of employees who disclose as disabled to consider how they can ensure that work is an enabling experience, contributing in the process to a truly inclusive and humane approach to diversity.

*ELCI note

Research among over 2,000 people by the Chronic Illness Inclusion Project (report forthcoming) found that fatigue, or energy limitation is the most restrictive feature of a wide range of chronic illnesses.

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