The Economist 1843 - Notes on isolation, from those who know it well

[Kalliope]

A former hostage, a writer with ME/Chronic Fatigue Syndrome and an astronaut reflect on life under lockdown

notes-on-isolation-from-those-who-know-it-well

Perhaps we never discover the limits of human empathy until we are shocked into an understanding of our own. So this may smack of hypocrisy: having felt like such an outsider in my own lockdown, I confess to a certain resentment of the collective spirit of the covid-19 confinement. From the sublime – arias across Italian alleys – to the ridiculous hash-tagging brigade spreading hyper-positivity with viral enthusiasm, there has been a rallying. Of course the usual human selfishness and greed has reared its loo-rolled limbs too, but there is shared experience even amid plundered pasta shelves.

For all my guilty schadenfreude, I hope that this journeying through limbo will be for everyone else what it has been for me. A lived experience of dislocation, a sentimental education in the truest sense. Let us hope that when we all emerge from the cave we are changed. And that we don’t forget the people still stuck there.

 

[Denise]

A former hostage, a writer with ME/Chronic Fatigue Syndrome and an astronaut reflect on life under lockdown

Thanks for this @Kalliope!
I am glad to see this article.
I've been hoping that mental health professionals (NOT BPSers) would detail more about the lived experience of those who live (or lived) in enforced isolation and what can be gleaned in order to help those new to it.
Another discussion not being had widely enough (in my view) is the long-term impact of this experience on people's mental health. Here again I think there's much to be learned from those who've endured this. (No PBSers need apply for this either.)

 

[ahimsa]

For many people now self-isolating or in lockdown, however, limited energy resources aren’t a problem. If anything, people are climbing the walls.
...
The skilled, healthy and nimble among you will be strutting up ladders to straighten architraves. The rest of us are trapped, clasping at broken door handles, coughing into the dust.

This is so relatable.

Even without all the extra work caused by this coronavirus (I know you all feel this! Wiping down groceries, or leaving canned goods unused for 3 days, and making sure to label/separate them so you don't use them too early) so many things just stay broken, or are not cleaned as well as we'd like.

 

[ladycatlover]

I'm sorry but I thought the piece from the person with ME was useless. Only sick for 2 years apart from anything else but still pontificating. She should come here and see what it's *really* like to be sick for years and years and years. Too much high falutin' language and just generally really really IRRITATING.

 

[Trish]

I'm sorry but I thought the piece from the person with ME was useless. Only sick for 2 years apart from anything else but still pontificating. She should come here and see what it's *really* like to be sick for years and years and years. Too much high falutin' language and just generally really really IRRITATING.

Interesting how differently we responded. I thought it was really good.

Of course it's full of literary and film allusions because that's part of who she is and the audience she's writing for, but I thought it made some excellent points really clearly.

She starts by spelling out that some pwME are very much sicker than her, she shows up clearly the difference between healthy people doing temporary isolation, and sick people stuck in it potentially for ever, and, like me, she doesn't like the hashtag positivity brigade.

 

[ladycatlover]

I kinda see where you're coming from, @Trish. But methinks she pontificates too much for someone who's only been missing her life for 2 years. Time these publications took articles from those who are much more experienced with the DD. I did like the other 2 essays in the article though. I'm just a bad tempered ancient bitch, me!

 

[Invisible Woman]

I didn't think the bit by the pwME terrible, I have seen much worse but I'm with @ladycatlover on this.

I found it annoying - how many adjectives does one small article need?

Also I agree that at just two years in she still has a lot to learn about patience, hope - sometimes having too much of it and sometimes too little, the despair and isolation that are nothing to do with our physical limitations and everything to do with society's judgement, the worst walls of all being totally invisible. Etc.

 

[Barry]

Also I agree that at just two years in she still has a lot to learn about patience, hope - sometimes having too much of it and sometimes too little, the despair and isolation that are nothing to do with our physical limitations and everything to do with society's judgement, the worst walls of all being totally invisible.

I worry slightly this starts to sound like a competition of who's done enough qualifying years. I very much appreciate it's a hell of a lot worse for many here, but two years is still a non-trivial chunk out of someone's life, and time to still fit in a lot of thinking about it.

 

[Snowdrop]

The difference in how an ME person thinks about their experience may well be down to not how long they've been ill but more about when they got ill and what the world with ME was like.

While I've had gradual onset and peak and valley levels of unwellness along with an overall decline, my early experience was to ignore my illness for decades because there was no real acknowledgment of the illness here.

So that means that my 'early years' would have been quite a different experience by virtue of it being a different time. This could explain some of the feeling of disconnect with those more recently ill.

The ME part of the article is something I don't at all relate to but I also recognise that everyone is entitled to their own story. I guess it's just an issue of how relatable her experience is for others with ME that are not like my experience.

There's also the issue of who the audience is. It's the Economist so I guess this is the kind of writing expected for that audience. I think for 'old timers' like me there's very little that reflects our experience and I feel how frustrating that is. I get this frustration when cognitive functioning is left out of the picture too.

 

[Invisible Woman]

I worry slightly this starts to sound like a competition of who's done enough qualifying years. I very much appreciate it's a hell of a lot worse for many here, but two years is still a non-trivial chunk out of someone's life, and time to still fit in a lot of thinking about it.

It is @Barry. I certainly didn't mean to imply it wasn't.

However, two years, believe it or not is nothing in the scheme of things when the scale is in decades rather than years.

When I was ill for two years I was still fairly confident that I would get better, surely research would happen very soon. I also thought I understood the condition much, much better than I actually did. Some of the things I thought, or believed because I had been told them by "experts" turned out to be false, but it took years to learn that.

Some aspects of developing ME could possibly be better told by the newly ill. The shock of realizing that medicine can't cure everything or even manage it that well, the surprise at suddenly being treated as weak or lazy, the complexity of navigating the benefits system for the first time. That's all still very fresh and valid.

However, if you want to talk about isolation.....especially the isolation we face, where it's not simply social distancing, it's not simply access & the energy to interact with others, it's the isolation of seeming not to conform & being judged.

I am over 2 decades in and if I've learned anything, it's that I don't know everything about ME. Sometimes I learn from people who haven't been ill as long as me, sometimes I learn from people who have been ill a lot longer. Some of it's the kind of learning that only comes with experience.

 

[TiredSam]

I find nothing objectionable about the article (which is high praise indeed for an M.E. article), apart from the overly flowery language and abundance of adjectives, but if you google her she's a very arty person so that's how she writes. She also makes a few points I really like, for example feeling you know what it's like to be old, the shock phase and dealing with it.

I'm not sure length of illness is the most accurate measure of whether someone is qualified to write about having M.E., or specifically the isolation aspect of it. By which I mean there have been some beautifully written articles by those who have not been ill for so long, and sadly a few articles by longer-term sufferers which in my personal opinion were full of tripe. Length of illness does not always correlate with learning and wisdom. Those who haven't had it so long or so bad of course can't have the experience or perspective of someone who's been ill for decades, but anyone who's come down with M.E. for a couple of years at a time when they should be productive and in the middle of life will have something to say about it, and possibly something useful for anyone else who finds themselves in a similar situation.

Two years is a hell of a long time for anyone to be ill with a life-changing illness. If that's how long she's been isolated for, let her write about it. The fact that she can't yet even imagine what it would be like for 30 years shouldn't stop her, and doesn't diminish what she's been through. She does start with "Its effects have not been nearly as debilitating for me as for many sufferers – some of whom are completely bedbound or even paralysed – but I have been forced to spend large swathes of the past two years in housebound limbo, self-isolated, quarantined, adrift." So it's clear what she's writing about and what she can't write about.

 

[Snow Leopard]

I'm not sure length of illness is the most accurate measure of whether someone is qualified to write about having M.E., or specifically the isolation aspect of it. By which I mean there have been some beautifully written articles by those who have not been ill for so long, and sadly a few articles by longer-term sufferers which in my personal opinion were full of tripe. Length of illness does not always correlate with learning and wisdom. Those who haven't had it so long or so bad of course can't have the experience or perspective of someone who's been ill for decades, but anyone who's come down with M.E. for a couple of years at a time when they should be productive and in the middle of life will have something to say about it, and possibly something useful for anyone else who finds themselves in a similar situation.

The perspective of those who became ill as children is also quite different to those who became ill in their mid 20s or later.

 

[Trish]

The perspective of those who became ill as children is also quite different to those who became ill in their mid 20s or later.

I see that very clearly in myself and my daughter. We have both had ME for over 20 years. We have both been housebound for 10 years or more. We both need to lie down for most of the day and struggle to manage daily care. We have very similar symptoms.

But the impact on our lives has been very different because she got ME at 16 years old, and has never been able to live an independent life, have a career, relationships, children, travel etc. Whereas I got ME at 40 and was able to do all those things.

If we each wrote an article about how ME impacted our lives they would, despite our illness being the same, with the same severity, be completely different stories. Equally valid, but different.

 

[FMMM1]

I see that very clearly in myself and my daughter. We have both had ME for over 20 years. We have both been housebound for 10 years or more. We both need to lie down for most of the day and struggle to manage daily care. We have very similar symptoms.

But the impact on our lives has been very different because she got ME at 16 years old, and has never been able to live an independent life, have a career, relationships, children, travel etc. Whereas I got ME at 40 and was able to do all those things.

If we each wrote an article about how ME impacted our lives they would, despite our illness being the same, with the same severity, be completely different stories. Equally valid, but different.

Thanks for sharing @Trish

 

[ukxmrv]

It's a pity that they didn't chose someone with long term ME after an acute viral illness that never really went away. That might have struck a stronger and more relevant note in these current circumstances.

Might have made a double impact in demonstrating how a viral illness can cause a lifetime of being trapped and the consequence.

When we see people like Phillip Hammond touting for future business we need to get over to people who is responsible for us being trapped at home with no cure and that people will come out of this pandemic facing the horror, neglect, disbelief, abuse and exploitation that others faced from previous viral onsets.