Part 1: Why chronic illness sufferers are the inspiration for our post-pandemic world
Updated: May 28, 2020
Let me begin by saying that I love being self-employed.
But it can be like climbing a mountain on some days. Not because self-employment is tough (although it is hard going) but because I have additional layers of challenges due to my health.
I live with an auto-immune illness called ME (or chronic fatigue syndrome). It sounds a bit mysterious, but if we could re-name it ‘I feel as if I’ve hit by a truck’ syndrome, non-sufferers may begin to understand how awful it can be.
How did I end up here?
In 2017 I had a breakdown after battling through a prolonged period of chronic stress, which involved desperately trying to keep my career on track after quitting a job where I was bullied and exposed to racism, whilst managing a relationship that was rapidly disintegrating.
The stress beat me; it messed up my nervous system and disrupted my brain function. When that happens, your body leaps into survival mode.
However, I had no idea at the time I’d actually had a breakdown!
What I was feeling didn’t fit with the cliched - and naïve - idea of a nervous breakdown. For a year I endured work whilst feeling like I’d been steam-rollered every day. And that’d be before I’d even got out of bed. I was single and had bills to pay so I carried on working in my PR job.
Then in summer 2018, I lost my job, leaving me without an income and struggling to survive on woefully inadequate government benefits. Going it alone was the only option left for me, even though I wasn’t well enough to earn more than a meagre income.
Challenge of my lifetime
Accepting this new life was tough. It was – and still is – a frightening position to be in. Especially since the coronavirus swept the UK off its feet.
For anyone who’s suffered a breakdown, they’ll appreciate how it tears your life into shreds. You have to somehow gather them up and re-stitch what’s left. And it hurts so much (SO much). My pain was often physical, but always mental and emotional.
My breakdown felt like the end of my world. It turned out I wasn’t that far from the truth: it crushed old world to made space for something more ‘me’ to enter. I stopped living for other people and employers.
I won’t wander too far down Cliché Lane, but I discovered that a huge personal crisis can be a breakthrough.
However, the process is more like going through a sausage mincer then being stuffed into a unbelievably tight jacket, than the sensational Wonder Woman twirl (seamlessly transforming into the all-new, stronger ‘you’).
Superpowers never come from easy times, right?
No opportunity for R&R
In early 2019 I was diagnosed with ME, but the grind has never let up. I’ve had no choice but to continue working as I’ve been deemed to be too ‘well’ to qualify for the most helpful benefit - Personal Independence Payment.
With no benefits to help chronically ill people pay their mortgages (apart from a loan - I know, it’s ludicrous), I’ve had to drag myself to my laptop to earn what I can.
As time has gone by, I’ve been signed off the insufficient – and taxable - Employment Support Allowance (ESA) and Council Tax Relief. With the benefits, went free dental and discounted eye tests. The government shoved me off a financial cliff.
Having fought the benefits system and lost, I realised the government was never going to be on my side. So I’ve had to use every milligram of resolve to keep a roof over my head.
Having been through the mill too many times, my big girl pants are constantly hoisted up, over my wobbly tummy, to belly button level. Step aside Bridget Jones, I'm the big knicker goddess now.
I know there are numerous people like mewho have been struggling for years and their challenges have likely been made worse by the pandemic. Yet, we and people with other life-limiting issues, continue to be invisible, which is maddening. Especially when we could be of help to a new kind of living and working potentially created by coronavirus (more on that below).
Some light shines through
Amidst the pain, anger and frustration, there have been slithers of hope.
Because of my health, I’ve had to explore ways to create an income while giving myself the flexibility to recover and build up my health.
It’s a constant learning process and balancing act, as the changeable symptoms of ME influence how I do business. This may be in contradiction to our modern-day working culture, but it perhaps it’s the right way?
Read the next part of this article, which talks about why I believe chronically ill people are essential to the future of a sustainable society.