Firstly, meet me and my ME!
Let me begin by saying that I love being self-employed. But it can feel as if I’m climbing a mountain on some days. Not just because self-employment is tough (and it’s really hard at the moment due to the devastation created by COVID19), but also because I have additional layers of challenges caused by a chronic health condition.
I live with an auto-immune illness called ME (myalgic encephalomyelitis or chronic fatigue syndrome). It does sound weird to the uninitiated, but if I were to re-name it ‘I feel as if I’ve been hit by a truck’ syndrome, non-sufferers may begin to understand how awful it can be.
According to charity ME Action “the average person with ME scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer”.
Yet, it’s continues to be a hugely overlooked condition being more or less ignored by the medical and scientific community.
Yet, it is expected that 10% of people who have been diagnosed with COVID-19 may go on to develop ME as severe viral infections are a known cause. My viral infection was glandular fever.
ME is a common chronic consequence of viruses, with 10-12% of those with serious infection going on to develop the disease. An estimated 15-30 million people live with the disease worldwide.
ME Action
Can ME sufferers help create the way forward?
I was diagnosed with ME in early 2019; a decade after developing glandular fever, and two years after suffering breakdown. It’s an extremely unpleasant experience; you feel shattered into tiny pieces physically, mentally and emotionally. As if everything you knew about your life was no longer true.
Dealing and recovering entails re-assessing every single area of your life. Each. Tiny. Part. Including the bits hiding in the shadows.
Without the virus impacting my body so badly, I may have recovered a lot quicker from my breakdown. Instead I was like a loaded gun (the bullets being the virus), triggered by chronic stress, which led to ME.
Another ME sufferer recently told me that she caught Covid in early 2020, giving her “ME on top of ME”. Covid-19 symptoms are remarkably similar to ME, and the thought of having the symptoms TWICE over is horrendous.
Despite our strength, we and other people with life-limiting issues, continue to be invisible, which is maddening. Especially when we’re perfectly placed to contribute towards a more compassionate and sustainable society, which I hope we’ll establish in the wake of this horrifying pandemic.
Discovering new ways of being
Amidst the immense frustration of ME, and emotional and mental pain that comes with physical symptoms, there are slithers of hope. Because of my health, I’ve had to explore ways to create an income while giving myself the flexibility to just ‘be’ in order to re-build my health.
I’ve had to learn who I am again after my health issues destroyed chances of employment – after three decades of allowing work to define who I was.
That was a mistake; it’s such a flimsy foundation on which to build your identity and self-worth. With lots of people losing jobs at the moment, the trauma of losing that identify is intense. I know – I’ve been there.
Also, learning to work with ME is a constant balancing act, as the my energy levels and concentration fluctuates throughout the day. So, I have no choice but to do what my body tells me to do, and actually it’s turned out to be a more natural and satisfying way of living my life.
This approach is currently in contradiction to modern-day working culture, but perhaps it’s the right way now we’ve experienced how vulnerable we actually are. Our wellbeing can disappear – just like that.
Could this work for everyone?
Chronically ill people are incredibly resilient. The amount of strength required to just get through the day is herculean. As a result of the challenges, we develop a wisdom that well people rarely possess. Lucky them.
We learn ‘on the job’ and each person develops their own approach. No one else knows our illness better than they do.
In fact, I’ve taken a quick audit of knowledge we’ve had to develop just to survive and, if you’re lucky, to stay in a job. The list is impressive and, in my opinion, they’re the kind of skills and qualities everyone could use as we rebuild our society.
We’re great at…
- Adapting to new and unforeseen circumstances
- Handling unpredictable outcomes
- Dealing with living in isolation
- Finding solutions to unexpected challenges
- Working remotely (if we’re able to work)
- Evolving our wellbeing ‘toolkit’ as our symptoms shift and change
- Being empathetic – an undervalued yet essential quality
- Supporting others
- Exploring nutrition to support our health
- Re-inventing our life over and over again as our health fluctuates.
Like I said, we’re awesome.
Health first – no exceptions
The profit-before-everything approach was beginning to crumble before the pandemic, which has probably (hopefully) expedited the process.
You need people to be healthy to support the world’s economies. Yet, as a result of short-sighted decision-making, society has been hurtling in the opposite direction.
We’re seeing the consequences of a money-hungry modern life: more chronic illness, growing poverty, lack of job security, and a rise in mental health problems.
It felt that society was at breaking point before coronavirus.
There’s no doubt that western society has a massive challenge on its hands, but if it adapts to our rapidly changing needs, and adopts a progressive attitude, we’re more likely to thrive into the future.
I believe it’s time that people who already know how to live in a way that’s wellbeing-centred became one of the groups to offer a knowledge and wisdom, which modern life has lacked for decades now.
Let us help in the task of re-imagining and re-creating a healthier, kinder and, therefore, happier world.
Elma Glasgow is a PR consultant, coach and trainer for purpose-led businesses. Find out more about her story here.
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