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

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.

 

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.

 

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!

 

The article was mentioned briefly in the latest episode of the This Week in Virology- podcast. At 51 min 30 sec
https://www.microbe.tv/twiv/twiv-598/