Supporting employees with chronic illness: First-hand insights with Emma Mitchell

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.”

Q&A with Emma Mitchell

Emma explains how ME affects her, and how her organisation empowers her to continue her successful career.

Can you tell us how having ME affects you?

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.

How has your employer supported you? 

My workplace respects, understands and supports my illness in many positive ways:

  • My bosses and colleagues have never doubted my illness and symptoms, despite its invisibility, variability, and unpredictability. Nor have they ever doubted my commitment
  • They have always appreciated my value, even when I struggled to see it myself
  • EY recognises that I am disabled by chronic illness and supports me as a disabled person
  • EY actively supports flexible working 
  • EY invests in incapacity insurance for its employees - without it my family and I would have lost our home

What is the impact on employees with chronic illness should an employer not take their disability seriously?

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. 

  • 40% of respondents with lupus left employment after their diagnosis.
    37% of those who left had resigned, while 26% had been dismissed. Half of these respondents were graduates or postgraduates with professional experience.

  • Over half of people with Long Covid report experiencing some form of discrimination or disadvantage in the workplace because of their condition.
    1 in 5 say their employer had questioned the impact of their symptoms. 

  • 1 in 10 people who returned to work after cancer treatment said they felt harassed to the point of leaving their job.   

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.  

What are the key barriers to change? 

Stereotypes about illness are hugely damaging and a significant barrier to change.  

Every year in the UK, 600,000 people move onto incapacity benefits. Over half of these people have previously been working or taken a period of sick leave from work. Patients and patient groups cite unsupportive attitudes at work as a particular barrier – many try to hide illnesses or disabilities in fear of how they will be judged.   

Common reactions may include:

You don’t look disabled

I’m tired too; everyone gets tired

Fatigue and pain aren’t real disabilities

Try harder to overcome...” 

“An adjustment wouldn’t be fair on others.”

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:

  1. Contrary to the ‘work avoidant’ or ‘lazy’ stereotype, people with chronic illnesses want to work. In fact, many of us are so desperate to remain working that we push ourselves too hard, often at great cost to our personal lives and health.   
  2. We have skills, experience, and unique value to offer. Illness does not define us, nor does it take away our value, indeed it can increase value. Active learning, innovation, problem-solving, influencing, harnessing technology - these are all skills we use daily to navigate the disabling obstacles of our day to day. These are also the same skills identified as the ‘most important for the future’ according to the World Economic Forum.       
  3. We are loyal. We are immensely grateful for the hard-to-find work opportunities and for employers who respect, listen, and understand our value and needs.

How important is it that employers consider chronic illness in their diversity and inclusion (D&I) programmes? 

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.  

What can employers do to support employees disabled by chronic illness?

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.”

How should organisations approach improving the workplace for those disabled by chronic illness? 

There are 3 key changes that workplaces can make: 

  1. Raising awareness about ELCI.  Educating employees across all levels about the nature of invisible, fluctuating, and unpredictable impairments. Helping them to realise their duty to support people disabled by these impairments. Challenging stereotypes about people with invisible disabilities including chronic illness.
  2. Updating organisational strategies and policies. Cultivating a culture of innovation and experimentation with workplace adjustments. Encouraging leadership and participation of people disabled by chronic illness in the process.  
  3. Enabling person-centred flexibility that considers each person’s needs on an individual basis. Examples include reduced working hours, home working, role adjustments, job re-design and task-based rewards. 

Finally, what’s one key piece of advice you’d like to share with others working in D&I?

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. 

Hear from inclusive employers, EY, at the Festival of Workplace Inclusion

On 26th May EY will join us along with many other industry experts and people with lived experience of neurodiversity and disability to explore how to create a more inclusive workplace.

EY will deliver 1 of 12 sessions, to share advice on how to create a better working world for those of us who think, work and learn differently. Their session will explore the role of technology in supporting employees to become the best version of themselves.

Other speakers will deliver sessions around inclusive recruitment, retaining and developing diverse talent, and creating an inclusive culture.

Join us and hear from organisations including Auticon, Rolls Royce, DIAL Global, Barclays, Business Disability Forum, Lexxic, Neurodiversity in business, and more.

Festival of Workplace Inclusion. 2th May 2022. 9am-5pm BST. Free virtual event.