Supporting employees with chronic illness
By Annie Makoff on 13 December 2021
Emma Mitchell, talent director at EY has been on long-term sick leave for over two years following a viral illness which never went away. Mitchell was eventually diagnosed with ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome), a neurological disease of the nervous system and spent a few years managing her condition while continuing to work.
Chronic illness and work
“My bosses and colleagues never doubted my illness despite its invisibility and unpredictability,” says Mitchell. “EY recognise that I am disabled by chronic illness and supports me as a disabled person. They support flexible working and they invest in incapacity insurance for its employees. Without it, my family and I would have lost our home.”
Mitchell, who loves her job, had to stop working all together in 2019 when her condition continued to deteriorate. She’s experienced grief, social isolation and despair, yet despite this, Mitchell insists she’s still one of the lucky ones, at least in terms of employment.
EY continues to support her, she has regular catch-ups with her boss and HR and she knows there is still a job for her, whenever she’s ready.
“This should be the norm, yet it isn’t,” says Mitchell. “So many people lose jobs as a result of chronic illness, especially those with energy-limiting chronic illness (ELCI). Everyone will experience illness or disability at some point in their lives, it’s part of being human. Now in our post-pandemic hybrid-working world, there is an opportunity for employers to improve access and inclusivity. After all, flexible and online working is how we’ve operated over the past two years.”
Culture of presenteeism
Subira ‘The Corporate Hippie’ Jones, inclusion adviser, burnout prevention consultant and founder of MPWRD Consulting agrees. Jones was diagnosed with multiple sclerosis (MS) early in her investment analyst career, but experienced constructive dismissal from a previous employer following her diagnosis. “There was a real culture of presenteeism and a lack of empathy,” she recalls. “Even when I was extremely ill and asked to work from home, they told me I had to come in. Once I disclosed the nature of my illness, they decided to extend my probation period and HR requested evidence and details of my diagnosis which was not something I was willing to share.” The stress and anxiety Jones experienced exacerbated her symptoms and she resigned.
Jones now works with corporates across various industries to prevent employee burnout. A big part of this is fostering an inclusive culture and eradicating nepotism. As Jones points out, those having to work from home due to chronic illness or disability, tend to get overlooked for promotion or other opportunities simply because they are not there.
“Development opportunities tend to happen over water cooler conversations or during in-person meetings,” she explains.
It’s what’s sometimes called a proximity bias, whereby in-office staff progress more quickly than remote working colleagues.
People living with chronic illness also experience a whole host of other challenges in the workplace too, from gaslighting, discrimination, microaggressions and exclusion. Grace Quantock, international wellness expert, psychotherapeutic counsellor and specialist in marginalised identities was once told her speaking voice wasn’t ‘strong enough’ to lead meetings due to the problem with her lungs. “I found this utterly ridiculous,” she recalls. “I’ve spoken at hundreds of workshops, seminars and events, I sit on a number of boards and I’m a TedX speaker.”
Quantock is used to self-advocating and knows how to ask for specific workplace adaptations. Yet, she says, the onus on the disabled person to educate and inform employers can be exhausting.
Due to the nature of her disability, Quantock needs regular rests during the day: she’s sometimes had to nap on the toilet floor on top of her coat or under her wheelchair to ensure she gets the rest her body needs.
In Quantock’s experience, some employers are simply ‘clueless’ about reasonable adjustments: they either want to help, yet have no idea how or, they make assumptions.
So what should employers be doing to ensure they’re providing the right kind of support for employees with chronic illness?
Supporting employees with chronic illness
For Quantock, listening is crucial, to ascertain what support an individual actually needs. But it’s also about competence and awareness training, too. “What you need to do as a manager, as an employer, is to ensure you’re meeting your employees’ needs by having a good awareness of disability and cultural issues through training, without relying on the individual themselves to educate them,” Quantock explains. “The onus must be on the employer to upskill, not on the individual. Finally, there needs to be willingness to listen without the assumption that the employee is lying to you.”
As Mitchell points out, it’s entirely possible to work while living with chronic illness – as long as employers remain flexible and understanding. “We need to become much more innovative and inclusive in our thinking around workplace adjustments,” she says. “A lot of things became more accessible which weren’t before, like events and meetings being held online. I believe we can create change as long as we keep the doors open. We’ve shown what is possible now – home working, remote consultations and so on – it’s now a choice whether we keep that flexibility and innovation.”
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