Let M.E Work Remotely
Remote Working
Is seeing believing?
It’s one of those well-known phrases we hear all the time. In a world inundated with misinformation and edited realities, seeing something with our own eyes goes a long way towards validating its existence.
It is estimated that 70-80% of disabilities are invisible. M.E, also known as Chronic Fatigue Syndrome, is one of them. To an outsider, the sufferer may look perfectly well, healthy, vibrant, even.
It’s incredibly hard to comprehend something you can’t see. I guess this is the first thing M.E and ‘working from home' have in common, because if you’re working from home, surely you’re just putting your washing on, walking the dog or scrolling Tiktok? Right?
For over fifteen years, I've endured the "lazy" stigma that goes with my M.E. diagnosis. There is still a long way to go with this narrative, and unfortunately, this sentiment is still shared by many in high-powered positions within the business world whose opinions carry significant weight.
Articles describing specific roles as ‘Lazy Girl Jobs’ published by the likes of Forbes, along with high-level employers branding remote workers as “layabouts,” only add fuel to the notion that working from home is merely for the ‘slopey-shouldered’ amongst us.
Last month, the new Flexible Working Bill became law, pushing for greater control for workers over their working hours from day one of their employment. You might have heard about this because it’s caused a bit of a media stir, causing many debates around hybrid and remote working arguments. As somebody who regards remote working not merely as a luxury, but as a lifeline, I finally feel compelled to speak up.
Before I begin, let me clarify that I am not anti-office by any stretch. I've experienced the highs and lows of office life, the learning opportunities, collaborations, and friendships it brings, but it is, by no means, a ‘one size fits all’ solution. Navigating the workplace with a chronic condition can be close to impossible, so the question arises, why is it that many in business still view remote working as simply a perk to lure in the ‘Gen Z’ into employment?
So here is my story.
What is Chronic Fatigue Syndrome?
I was diagnosed with ME/CFS at the age of 11 following an ear and throat infection, and my life was changed forever.
ME/CFS (Myalgic encephalomyelitis/Chronic Fatigue Syndrome) is a chronic and complex medical condition that affects multiple systems within the body. It was first identified in 1934 and is recognised by the World Health Organization (WHO), NHS, and the Department of Health as a ‘Post-viral Fatigue Syndrome' and as a neurological condition. The main symptoms of ME/CFS include chronic pain, sleep difficulties, brain fog, sensitivity to light and sound, and, above all, debilitating fatigue.
One of the hardest things to accept as an M.E sufferer is that symptoms come and go, improve or worsen, all with little to no warning. You can function ‘fine’ one day, and the next find yourself asleep for 16 hours, unable to wash or get dressed. Unfortunately, ME/CFS has no straightforward tests in order to diagnose the condition, no effective drug treatments, nor, most concerningly, no cure.
Making M.E Work
The following guidance, buried in the deepest, darkest depths of the Internet, is intended to help sufferers and support employers in understanding how to accommodate people diagnosed with the condition.
The Employment Guidance from the M.E Association states, “ME/CFS or ‘Long Covid’ might allow you to keep working, although you will probably need to reduce hours or rearrange your life to allow time to rest in the evenings and at weekends. But most people will experience a moderate to severe form of disability at some point, and this is more likely to render them unable to work.” (p.17)
Further insight from 'Occupational aspects of managing chronic fatigue syndrome/myalgic encephalomyelitis' details the legal obligations outlined in the Disability Discrimination Act 1995.
These may include measures such as:
· changing locations of work
· Working from home
· modifying work hours
· reducing workloads
· Reducing physical tasks
· making provision for a wheelchair
· Flexibility in working patterns
My experience of chronic illness at work
Throughout my childhood, I dreamt of working in the film industry. I dreamt of marketing films out of Pinewood Studios and working with a team of creatives. However, I was often reminded of the significant amount of stamina required to work in such an industry. Not something you wish to hear when you have just been diagnosed with Chronic ‘FATIGUE’ syndrome!
Faced with this harsh reality, I embarked on a gap year at the age of eighteen, determined to explore alternative pathways that would allow me to pursue my passion for marketing within the film industry.
I was thrilled and yet simultaneously nervous when I made it to the final round of a marketing apprenticeship at a large media company in London. Deep down, I knew that if I were to be offered the job, I would be obliged to disclose my medical condition. I feared that my prospective employer wouldn’t understand my condition and would, therefore, judge me unfairly despite me having made it as far as the other candidates.
The prospect of managing an extensive commute to London (over an hour each way), working eight hours, and maintaining a social life in London was suddenly overwhelming. I had to question whether I could cope with such a lifestyle while adapting to the limitations associated with the condition. In hindsight, I am relieved that someone else got the job, and I didn't have to manoeuvre my way around those difficult conversations.
I would like to point out here that the employer did not indicate at any point that my condition would hinder my chances of obtaining the job. I decided to pursue another opportunity whilst I worked on my medical limitations. I had mentally given up on the idea by the time I got on the train to come away from my final interview, the constant echo of sceptical medical professionals and peers asking, “Can I catch what you have?” and “Isn’t nice to do nothing all day” in my mind.
Graduation: Loughborough University
Going to university felt like the safest way for me to challenge myself and see how much I could achieve without risking a severe relapse, which could leave me bed-bound again. Therefore, in 2017, I enrolled at Loughborough University. On reflection, the degree wasn't easy, throwing up the same challenges around workload and balance that work would also eventually offer me. Still, I can now appreciate that it was the best decision I could have made for myself, as it gave me a new insight into what was possible, and what was not, without compromising my physical health.
Then COVID happened …
Surprisingly, one of the few silver linings of the COVID-19 pandemic was the shift to "WFH", being the ‘new normal’ for the vast majority of the population. Suddenly, any apprehensions about approaching the topic of remote working were alleviated by the dramatic shift to remote work induced by the pandemic.
Thomas Foley, executive director of the National Disability Institute, highlighted that workers with disabilities had long advocated for remote work opportunities, only to find these requests resisted by many companies. He told Axios Closer, “During the pandemic, when "we all realised that ... many of us could work remotely ... that was disproportionately positive for people with disabilities."
So what happened next?
Throughout the COVID-19 pandemic, I was employed full-time, learning the ins and outs of the job almost entirely from a distance. It wasn't until nearly a year later that I returned to the office full-time. While I enjoyed the fostering team spirit and promoting aligned working, the toll the office life took on my health was profound.
So you’d have thought that this ‘new normal’ would be here to stay. The new normal that witnesses employees hitting deadlines and working longer hours while employers save on office rent, heating, and, of course, fancy coffee. Surely it was a win-win all around?
Wrong. The anticipated remote revolution failed to materialise, and soon enough, we were all being ushered back to our desks and to the murky world of office politics. This, for most, would be a mild inconvenience, but for me, it was an anxiety-inducing prospect, after having felt like my ideal working conditions were understood.
Following the forced return to office life, the most visible result of not being able to work from home was crashing onto the sofa with a migraine as soon as I walked through the door. I now had to cut out parts of my social life at the weekends to recover from my week’s work, and I would constantly worry that I would need to rest for the whole weekend to be ready to function on Monday.
Was this to be my life from now on until I either relapsed or retired?
Brand Workshop with FSB
Fighting fatigue through flexible scheduling
Five days before Christmas in 2022, the agency I worked for went into administration, leaving me with no choice but to reassess my career path. Although I had deliberated about becoming self-employed before, the timing suddenly felt opportune.
Since that decision, being my own boss has taught me the importance of managing my workload and my energy levels. My aim now with Boughton Marketing is to strike a healthy balance between serving my clients more efficiently and safeguarding my own health.
Whilst self-employment has been a lifesaver for me, it shouldn’t be the only way for those with chronic illnesses to participate in the workforce.
We must continue to push for flexible working conditions and environments.
Treating all employees with trust, patience, and a sensitivity to their needs would make an enormously positive contribution to the individuals and the economy.
So, what can employers do to help?
Part-time hours may be a solution for many people. Don’t assume people’s reasons for doing so. Instead, permit them to explain their reasons to you (if they can) on request.
Be transparent about your policies. Please don’t advertise a role as remote if you are not willing to offer it as a realistic option.
Even if you have preconceptions about the Hybrid/Remote policies, take the time to understand why this is important to your staff and consider whether their job can still be completed effectively.
Please reconsider your wording in job adverts and interviews. Working from home should not be seen as a ‘perk’ for all, so please be careful how you write the job description.
This was written for M.E Awareness Week 2024.