In this Q&A, Emma Mitchell, Talent Director at Ernst & Young (EY) who lives with ME (Myalgic Encephalomyelitis), shares how organisations can better support employees with chronic illness. Emma’s insights come from both her professional and personal experience in supporting employees with chronic illness and hidden disabilities.
As a Talent Director at EY, Emma is responsible for developing a working environment ‘where everyone feels they can be themselves at work and have a fantastic career experience.’
Over five years ago, Emma developed ME (Myalgic Encephalomyelitis).
As explained by the ME Association;
“The core symptom of ME/CFS (Chronic Fatigue Syndrome) is profound and disabling fatigue, which almost always affects both physical and mental functioning. The fatigue and other symptoms are not caused by ongoing excessive exertion and are not relieved by rest.”
Emma explains how ME affects her, and how her organisation empowers her to continue her successful career.
For those unaffected by chronic illness, it can be difficult to imagine the extent it can impact your life. One day I was a healthy, active working parent; then one month after catching a virus in 2016, I was partially paralysed and struggling to get out of bed.
The symptoms have fluctuated over the years. At worst, I have been in pain and unable to get out of bed; unable to read, concentrate, or cope with noise or conversations. At my best I have been able to work 3 days a week, as a director in professional services, mostly working from home.
The symptoms have been so severe for the last two years I haven’t been able to work at all. I hope that will change in 2022.
My workplace respects, understands and supports my illness in many positive ways:
Sadly, the positive experience that I’ve had at EY is far from the norm. Taken from various research projects, the statistics below may seem shocking, but reflects the reality for many living with chronic illness.
For people with chronic illness, the impact is a world which leaves too many left in social isolation and poverty. You may have heard of the phrase ‘Millions Missing’. It’s a global campaign that exists to shed light on an unseen world by most - where literally millions of people inhabit, many from their bedrooms - missing from workplaces and society.
It’s cruel and ironic that people with chronic illnesses are the ones with limited capacity to fight and change things for the better. Any capacity we have is often used in simply getting through each day. But we are energised, motivated and ambitious to work.
We therefore need allies to challenge these stereotypes, and to know and share the following with others:
It’s extremely important, for now and in the future.
Today, 1.3 billion people live with a disability. Many of these people have been disabled by chronic illnesses. In the US, the CDC (Center for Disease Control and Prevention) reports that half of US adults have at least one chronic condition. By 2030, the Work Foundation predicts that 40% of the UK’s working age population will have at least one chronic, work-limiting condition.
This data was published before the outbreak of Covid19, so these figures will likely be much higher. In the UK alone it’s estimated at least one million people are living with or have had Long Covid. This is the name given to long term, post-viral symptoms that continue weeks or months after the initial infection.
Ultimately chronic illness inclusion matters if we are to normalise being human at work.
Listening to employees about their symptoms and believing in them and their commitment to work, despite the invisibility and variability of symptoms makes the biggest difference. As does recognising the employee is “disabled by chronic illness” and supporting them as a disabled person.
Often, traditional workplace adjustments fail to accommodate for the invisible, fluctuating, and unpredictable features of many chronic illnesses. Introducing a more relevant language can drive new thinking and policies. Personally, I like the term and definition of “Energy Limiting Chronic Illness (ELCI)” created by the Chronic Illness Inclusion project (CIIP):
“A debilitating mix of physical fatigue, cognitive fatigue, and pain alongside other diverse illness symptoms. The main feature is energy impairment, a generalised limitation on capacity for activity. People with ELCI experience payback - a disproportionate increase in pain, fatigue, and other illness symptoms because of over activity - prolonged rest is required to prevent deterioration in health.”
There are 3 key changes that workplaces can make:
I’d share two things 😊….
Firstly, please look after yourself!! D&I work is vast, complex and important. And those working in D&I are hugely driven, passionate and compassionate. I’m learning to take care of myself now but wish I had done so before getting sick.
Secondly, please include chronic illness inclusion in your D&I work. This new disrupted age could become the age of disability and chronic illness inclusion, but we need to choose it to be so.
Thank you to Emma for your insights and honesty.