Employment and Long-Term Illness: A Change Is Overdue

Employment and Long-Term Illness A Change Is Overdue

Ever since I acquired my chronic illness, accessible and inclusive employment has been a topic close to my heart.

Like many people with long-term illnesses, I’m one of the ‘in-betweeners’. While I was studying, I knew that I would be well enough to pursue a career in some capacity after I graduated. However, I definitely wouldn’t be well enough to do full-time hours, commute to a workplace, or take on any kind of physical exertion. If I wanted to perform at my best, I knew I needed remote and flexible work where I could carefully pace myself and manage my health … I just didn’t know where the heck to find it.

I began applying to any and every work-from-home opportunity I could find online, as well as programmes designed for disabled people. At this time, I found it incredibly telling that even one well-known scheme designed specifically for disabled graduates wouldn’t accept my application because my disability meant I couldn’t work full-time. Thankfully, I believe that scheme has now adapted, but I think this example perfectly illustrates how chronic and fluctuating illness has been excluded from conversations about disability and employment in the past.

Comfort at home for elderly and less abled

Fortunately, I’ve been one of the lucky ones. With time and experience, I’ve been able to find work in a range of roles in both an employed and self-employed capacity, and figure out the reasonable adjustments that best suited me… and those experiences eventually lead me to Astriid.

In short, Astriid is the platform I so badly needed back at the beginning of my own employment journey. Founded by David Shutts OBE following his cancer diagnosis, Astriid’s mission is to help people with long-term illnesses (as well as carers) find meaningful work with amazing employers.

As part of my role at the charity, I recently carried out our first research project. We wanted to learn from people with long-term illnesses and their previous experiences of recruitment and employment, and as expected, our findings made clear that talented people with long-term health conditions are still facing countless challenges in the world of work.

The survey covered a diverse range of topics, but of particular interest were people’s reports of their experiences within their job role and working environment. Almost half of our sample (48%) reported that it was difficult to secure reasonable adjustments in the workplace – an unacceptable finding given that employers are required by law to consider disability-related workplace adjustments.

Participants reported that experiences of approaching staff about reasonable adjustments and them being implemented effectively varied depending on who in the organisation was responsible for organising reasonable adjustments. One respondent shared that ‘each [staff member] interprets the policies differently’. Another reported ‘trouble finding the energy to fight for myself and my needs’ – a common experience among those with chronic illnesses, where the exertion of self-advocating outweighs the potential benefits of accessing the support they’re fighting for. Unsurprisingly, these difficulties can lead to people feeling forced out of work.

For many people with fluctuating health conditions, reasonable adjustments may be as simple as changes to working patterns and practice. In open-ended responses asking what would help people accommodate their condition in work, 58% of our sample mentioned a need for flexibility with hours required per week and the times they could work (with a further 21% citing the need for regular breaks). 46% also desired more remote working opportunities, with the ability to work from home all of the time or at least some of the time – a few days per week, for example.

Others made more physical suggestions for reasonable adjustments they would find helpful. If working away from home, 20% of our participants shared that a quiet space in their working environment where they could easily retreat to would be beneficial. From personal experience attending full-day events whilst dealing with debilitating fatigue, I know just how valuable a calm and quiet environment, with somewhere comfortable to sit and rest, can be in pacing yourself and preserving energy stores. It’s an adjustment that can sometimes feel more difficult to ask for and initially more challenging for employers to implement, but in my eyes it’s definitely one worth fighting for.

A further 26% also cited a need for specialist ergonomic equipment to help them manage their symptoms whilst carrying out their role. There’s a broad range of specialist adaptive equipment available now, and workplace assessments may be most helpful in identifying aids and equipment that would be most beneficial for individual situations, but many of our sample expressed a need for ergonomic desk chairs and discrete and accessible pain management products. Those working from home may also benefit from over chair tables so they can work from a more comfortable spot on a sofa (or lap tables if working from bed), as well as medically-approved SAD lamp therapy to better differentiate between patterns of working and resting.

My own career has been heavily dictated by my need to work from home, however I do increasingly have the capacity to engage with opportunities outside of my own four walls. Whilst not an aid or adjustment specifically work-related, I can hand on heart say that my powerchair has enabled me to say ‘yes’ to these opportunities and allowed me to pursue them in a way that works for me and my health condition. For anybody engaging with work that feels slightly outside of their physical capabilities, I would wholeheartedly encourage considering powered mobility aids of any kind.

From these research findings, as well as my own lived experiences, it’s clear to me that people with long-term illnesses are still being excluded from the world of work. It’s absolutely crucial that this issue become a central part of the conversation about disability and employment, especially in a post-pandemic world, and I hope that over the coming years we see a shift in attitudes. Long-term illness or no long-term illness, everybody deserves a chance to pursue their dreams.

Thanks for reading! You can access the full research report and find out more about Astriid’s work by visitingwww.astriid.org, and read more about finding accessible work with a chronic illness in this blog post.

Pippa Stacey