Apparently I’m all up in my feelings about #LongCovid and ME today so i guess this is a bit of a thread.

i know we chronic illness lot, and particularly the ME patients, have been telling folks with Covid to rest like their (future healthy) lives depend on it, but i’m aware this isn’t as easy as we say.

I remember first getting sick, & “pushing through” to the point of collapse because that’s what we’re conditioned to do with sickness, only to realise belatedly that I’d severely damaged myself doing so

I always say I wish someone had warned me, told me how much damage I was doing by not resting, but actually, I don’t know if it would have made much of a difference

I was, like most young people, poor at the time, working 2 jobs, and had no diagnosis to take to an employer to explain why I needed to miss work.

Folks with long covid will have a diagnosis, but not a treatable one (yet).

But they will still have bills to pay. Choices they must make between eating and rent and bills and resting.

Until someone creates a long covid pathway whereby employers are supported to keep paying sick pay to those with post-viral sickness for a period, or a fast-track to temporary benefits during the first few crucial months, patients have little choice but to make themselves sicker.

This is the case for so many disabilities, but it’s particularly cruel in post-viral illness, where complete rest early on may very well mean the difference between a complete or almost-complete recovery, or a lifetime of disability

At some point, governments/health care providers will need to acknowledge that the temporary cost of allowing long covid patients the time to rest early on, is far less than the cost of thousands more disabled patients that medicine doesn’t know how to treat

This should be the case for ME too, except without a bio marker and the fact that diagnosis is often delayed by years, it often comes too late.

It doesn’t HAVE to come too late for long covid patients, who are all getting sick at a similar time with similar long-term symptoms and from the same virus.

I don’t know what, if anything, is being done about this, but our current working systems are not equipped to support people in the avoidance of long-term disability from post-viral illnesses.

As a young, formerly healthy person, I couldn’t have chosen ‘rest’ when ‘rent’ was necessary. And I suspect a lot of long covid patients are in the same position.

All I can say to long covid folks is do whatever you can: make yourself a priority. Go to stay with family if possible. Talk to your employer. Apply for whatever benefits you need. Be selfish.

The choices you make in these first months may impact your life goals/career negatively for a short time, but trust me, it will be nothing compared to the alternative, of pushing yourself into a life of long term disability which I assure you, you really can’t conceive of yet

And I’m really sorry we’re so bad at this. That medicine doesn’t understand and employers are disloyal and governments are money-grabbing and the support systems you need are not there.

They should be.