Trial By Error: A Long-Time Patient Reflects on a Stay-At-Home World 2 April 2020 By David Tuller, DrPH

Sly Saint

Sly Saint

Senior Member (Voting Rights)
I am slowly adjusting to the new realities and what they mean for life and work for at least the next couple of months; this lockdown or “sheltering-at-home” or whatever is likely to continue through most of May, if not longer. This is a marathon, not a sprint.

Being largely homebound is not my normal existence. Yet after several years on this project, I have come to a much deeper understanding of how this is, for many people, a necessary and unavoidable method of managing their illness. And I’m sure many such people are experiencing a range of reactions as the rest of the world struggles to come to terms with this state of existence.

Here’s the first half of a thoughtful piece about the issue by Sarah Sweet, deputy editor of TVO.org, the website for a publicly funded media organization and television network based in Toronto. It was posted on March 26th. I am reposting this part with Sarah’s permission. I advise folks to click through to read the second half as well.
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https://www.virology.ws/2020/04/02/...ime-patient-reflects-on-a-stay-at-home-world/
 
From a campaigning point of view I think that its Shown how our community could highlight the impact on loss of freedoms/societal participation in the children teens and working age people affected more than it has done and how the public might identify with that more sympathetically than “unable to work” etc.
 
I'm not convinced of that.

Under the current 'lockdown' people, other than pwME, are still free to do as much as they like, for as long as they like, at home.

Without PEM or any risk of it.

Simply because time outside is restricted in both purpose and duration doesn't mean they now live in anything like the world I do.

If anything it could be counter productive, in making them think they understand when they won't.
 
Wonko said:
I'm not convinced of that.

Under the current 'lockdown' people, other than pwME, are still free to do as much as they like, for as long as they like, at home.

Without PEM or any risk of it.

Simply because time outside is restricted in both purpose and duration doesn't mean they now live in anything like the world I do.

If anything it could be counter productive, in making them think they understand when they won't.
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Well ofcourse M.E isn’t like being inside living a busy life. But it’s an aspect, such as not being able to get out into nature, not being able to attend church, not being able to meet up as a family for a wedding etc that people have as vital parts of their life that if deprived of a few weeks I think that now Can relate to as a loss more. It’s Possibly worth a try if we want to get more support and empathy.
 
As a youngster I lived with and helped care for someone with an extremely painful and debilitating long term, incurable health condition.

I can honestly say I didn't understand what it was like to suffer the pain, exhaustion etc that they felt & I knew that at the time. I probably still don't because I didn't experience it. That didn't stop me trying to be supportive & understanding though.

In terms of advocacy, I'm not convinced there's a lot of mileage in trying to explain to people how it feels - especially with the linguistic slipperiness of the BPS cabal.

Being prevented or limited from doing things though is something the current covid crisis might help others to understand.

Now they know what it's like to be stuck at home with limited freedom and access to the things they enjoy, maybe it's not such a leap to understand being in lockdown in your own body. Hefty fines by way of PEM etc.

The world is still out there, your XBox, iPad or whatever are all still there within your home even, but your body will only allow access to those things once or twice a week - even though they are sitting in full view.

I don't think a healthy person can comprehend the awareness that this is how it is day in and out, year in and out for decades. The mind or brain protects itself against that sort of realization I think.
 
When I get shirty and resentful about healthy people suddenly living constricted lives, I remind myself that others reading this — others for whom any kind of work or outing would be a complete impossibility — would be justified in getting all shirty and resentful about me.
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As someone who has moderate ME -- too sick to work, loads of symptoms, resting takes most of my time, BUT I can usually get out of the house once per week -- I really appreciate this quote from Sarah Sweet's post. Even though my health sucks, it's important to remember how many folks would be grateful to have my level of health.

It helps me when I can keep this perspective, but it's not always easy to do!
 
Excellent article.

Edit: Not sure how much this awareness-raising during the corona virus will achieve though. I know a lot of people are having a really hard time now, but some aren't, and if they are asked to associate their time during lock-down with M.E., they may think "oh, not so bad then - working from home, more time with the family, time to slow down, sort stuff out, reflect on priorities, play video games ... did me the world of good".
 
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