[Although not primarily about ME (it is mentioned), I thought that this is an interesting article from The Independent which makes some good points.]
The compassion we’ve learnt in lockdown must be carried through into the post-coronavirus world, says Helen Wilson-Beevers
When Boris announced that pubs, cinemas, hair salons and hotels will reopen from the 4th July, there came collective chatter about reclaimed freedom. There is a palpable feeling holidays and nights out are once again within reach; a new normal is just around the corner. In England, too, shielding for the 2.2 million most vulnerable ends on 1 August.
Tentatively excited talk of lockdown ending joined social media posts about never taking simple daily joys for granted again. I absolutely can’t wait for that day to come too. But as someone who suffers from chronic health conditions, including Hashimoto’s disease and endometriosis, there’s also a degree of pragmatic detachment from this notion. Because for those affected by chronic illnesses, we’re acutely aware our lifelong experience of needing to occasionally shut ourselves away can’t ever be placed in a box marked This Too Shall Pass.
As offices disbanded in mid-March, working from home was suddenly the nation’s new normal. Something which chronic illness sufferers have continuously dreamt of; our unprecedented global circumstances proved that remote working is entirely feasible. For those whose sick days sabotaged careers, will more widespread flexible options finally materialise? Some people have noted that the intense fatigue worsened by their commute pre-pandemic has improved dramatically, they of course dread the return of the old order.
During this pandemic, we have seen a spotlight shone brightly on chronic illness like never before. That those with pre-existing health conditions and the elderly are most likely to be significantly affected by Covid-19, means we have come together to protect people who previously felt invisible. Covid-related messaging that no societal obligation is worth risking your health for was already part of the chronic illness tool kit, and this reality is now finally being seen.
This week in parliament, Conservative MP Sir David Amess asked the Leader of the House about help for endometriosis sufferers, especially those whose treatments and surgeries have been delayed or cancelled during the crisis. I have witnessed first-hand the incapacitating effects endometriosis causes and empathise hugely with people in urgent need of support. Managed out of several jobs during my twenties due to mounting sick days, nobody at work had heard of endometriosis. In one role, after collapsing, paramedics administered a morphine drip to me while I sat at my boss’s desk. The humiliation stays with me until this day.
In this instance, endometriosis was raised directly because of pandemic delays. However, the parliament focus on the disease is a welcome and not insignificant moment. Crushing exhaustion and agony are difficult enough to manage but lack of awareness is something which can be changed- and societal adaptions accordingly made.
The same goes for a major UK study into Myalgic Encephalomyelitis (ME) announced this week, investigating a widely misunderstood and devastating condition. Worryingly, one of the long-term effects of corona is chronic fatigue symptoms, leaving previously healthy people unable to manage simple daily tasks. ME is thought to be triggered by viral infections, yet the extent of its impact remains underreported, highlighting the crucial need for this study.
When quarantine began, comedian Miranda Hart spoke of the seemingly endless nature of this virus holding a mirror up to the emotions of those with chronic illness, tweeting: “As well as dealing with illness there is daily grief on missing out on the simplest things people take for granted. A café. A walk. A bus ride. Views.” As Miranda eloquently outlines, feeling heard makes a massive difference when someone is trapped under the heavy toll living with a chronic illness takes.
A few weeks pre-pandemic, I was in the depths of a debilitating thyroid disease flare and had to skip my good friend’s thirtieth. Lying in bed and aching from head to toe, overwhelming exasperation worsened an already demoralising time. While the familiar sadness about missing out on a fun evening around my favourite people stung, these brilliant friends cocooned me with understanding.
Yet on other occasions, when bailing on plans because my body won’t play ball, I’ve been met with countless unsympathetic comments. After being diagnosed with the auto immune condition Hashimoto’s disease, one person asked if I’d caused the illness myself by taking too many painkillers for endometriosis. Another time someone suggested I wasn’t thinking positively enough, and that daily affirmations or CBD oil could miraculously eradicate pain only improved by morphine. A fellow school mum once sarcastically asked if I “collect illnesses.”
Being pedalled quick fix snake oil ideas is extremely patronising. It invalidates the physical limitations those with chronic illness would do anything not to be held back by. A simple acceptance and understanding that where I’m at today is just part of my ongoing reality would be so much more welcome than an attempt to correct me and make me fit into society like a square peg in a round hole.
For so long, invasive investigations and random symptoms triggered shame and guilt. I’d be caught up in a vicious cycle, apologising about something which wasn’t my fault, and this consumed me. The constant fight to be heard – whether by medical professionals, bosses, or friends – is as crushing as dealing with pain and fatigue itself. No longer willing to be casually gaslit, I’ve learnt the immeasurable value in advocating for myself.
Living with chronic illness doesn’t mean you don’t desperately want to be an active participant. Often boundaries need to be set which won’t always be comprehended. If I had attempted the aforementioned-birthday night out, my already exhausted body wouldn’t have been able to get the kids to school or meet any deadlines that week.
Throughout the pandemic, coronavirus press coverage and Instagram feeds have touched on the daily struggles different health conditions cause. Those without chronic illnesses have been given a brief glimpse into restrictions dictated by uncontrollable health circumstances. And when lockdown does eventually become a distant memory, this overdue focus on our lifelong reality must not disappear either.