Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise

[SNT Gatchaman]

Blog post by Fred Rossi.

Why I Can’t Just Meet You for Dinner

The Reality of Post-Exertional Malaise

substack.com

Explaining to friends, family, partners why you can’t just “push through” or “try harder” or “think positive.” They see someone who looks fine (most of the time) declining invitations, skipping events, disappearing from social life. They don’t see the internal accounting that goes into every decision.

I’ve found economic language helps people understand. […] The math is impossible before you even consider having a life.

When healthy people “push through” tiredness, they’re tired afterward but recover quickly. When we push through PEM, we’re actively harming ourselves. It’s not building stamina or resilience. It’s more like running a marathon on a broken leg. You’re causing real, measurable damage that compounds over time.

This isn’t about willpower or attitude. This is about disability management and harm reduction. You’re not declining their invitation because you don’t care about them. You’re declining because accepting might cost you the ability to work your next shift, or feed yourself tomorrow, or maintain the baseline function you desperately need to survive.

Let me tell you what working even a reduced schedule does to your social life when you have PEM: it obliterates it.

I work two days a week. Two. That’s it. And it consumes everything.

Where exactly in this schedule am I supposed to see friends? Go to social gatherings? Maintain relationships? Have a life?

The answer is: I don’t.

This is what people on the outside don’t understand. When they say “but you’re only working part-time,” they think that means you have all this free time. They don’t understand that the “free time” is actually recovery time. It’s not leisure. It’s not available for social activities or hobbies or the things that make life worth living. It’s medical necessity disguised as empty calendar space.

The cruel irony is that working might be preventing the rest and pacing that could potentially improve their condition. But not working means poverty, loss of insurance, social isolation, and the complete erosion of identity that comes with losing your career. There’s no good choice here. Just impossible ones.

The people in your life not understanding PEM doesn’t just make your social life harder. It makes your illness worse. It’s not just about hurt feelings or missed parties. It’s about whether you have the support network you need to survive this thing.

When the people in your life don’t understand PEM, they’re not just failing to understand a symptom. They’re failing to understand the central mechanism that governs your entire existence. They’re missing why you can’t just meet them for a meal, why you can’t work full-time, why you can’t be the person you used to be.

The brutal truth is this: living with PEM means making impossible choices every single day. Work or social life. Basic functioning or relationships. Today’s activity or tomorrow’s capacity. And when the people around you don’t understand the calculus you’re doing, they interpret your careful management of a disabling condition as character failure.

We don’t have the energy to keep making this case. Which, if you think about it, is rather the whole problem.

 

[Binkie4]

Thank you for posting this @SNT Gatchaman. It describes it so perfectly. " Character failure " : that touched a nerve.

"The brutal truth is this: living with PEM means making impossible choices every single day. Work or social life. Basic functioning or relationships. Today’s activity or tomorrow’s capacity. And when the people around you don’t understand the calculus you’re doing, they interpret your careful management of a disabling condition as character failure."

I would like anyone with whom I am trying to have a relationship to read it but how do I possibly ask this?

 

[Trish]

I'm not at my best at the moment (hollow laugh - best isn't the right word for mostly bedbound). I've been overdoing it. I foolishly forced myself to have a shower and hair wash yesterday. Now I'm mistyping every word.

I read this article and wept.

It's so accurate about life when trying to keep working and/or any semblance of social life, and the impact the frequent crashes has had on my long term deterioration and loss of respect and friendships.

Worth sharing widely.

 

[josepdelafuente]

Yea it's an amazing article.

 

[Evergreen]

I'm not at my best at the moment (hollow laugh - best isn't the right word for mostly bedbound). I've been overdoing it. I foolishly forced myself to have a shower and hair wash yesterday. Now I'm mistyping every word.

 

[StellariaGraminea]

Good article. Will share with a few people who I think will read it... especially one friend who does not really get that it's "can't" and not "don't want" to meet up regularly. I feel like this disease is also fighting to hold onto friendships where people don't see that just to stay friends at any level, that you've already sacrificed so much, stepping beyond what you can do.

I've one particular sibling I'd like to share it too with but will have to think more about it. They've a knack of turning any information shared with them into an argument & basically just no interest in learning.

 

[MEMarge]

Such a brilliant article and so good to share.

A shame that any BACME people would dismiss it.

This guy would probably be classified as "mild" per NICE as he is still able to work, just!

 

[SNT Gatchaman]

The author also posts today —

I wrote recently about my experience with post-exertional malaise #PEM. Last year, I tried graded exercise therapy and it put me into a #PEMCrash that lasted for months. The physical therapist that “has worked with many #LongCovid #MECFS patients” had this mindset.

 

[Amw66]

Fred Rossi has also done another article on the disappearing workforce .
He writes well .

When Showing Up Is Not Enough

Why Employers Must Learn the Economics of Chronic Illness

open.substack.com

 

[MrMagoo]

Beautifully written, and also bleak.
When I was sliding downhill into moderate and desperately trying to hang on to my job, I faced the same choice.
And I don’t think I would have chosen differently because how do you explain quitting working to stop yourself getting more ill?

 

[Trish]

The workforce article is good, but very repetitive.

It resonates with my experience of lack of employer support and workplace adjustments. One thing that's not mentioned in the article that I found particularly difficult was the lack of understanding among colleagues and line managers. I made the mistake of hiding my problems as much as I could. In hindsight, I would have been better being more open about what the implications of my illness were on my ability to do my job and what adjustments I needed. I tried too hard to be 'normal' until I couldn't any more and it was too late.

 

[Binkie4]

"The workforce article is good, but very repetitive." @Trish

That was my view too. I couldn't quite believe that the person who wrote the first where every word was balanced, nuanced and calibrated, wrote the second which seemed based round a single issue of not being allowed to maintain a job by working remotely. The argument was valid and well made but so repetitive.
It made me reflect on successful advocacy: the need not to overstate a case and perhaps sometimes that less is more. Perhaps I should myself reflect on that when describing ME issues on my facebook page.

 

[StellariaGraminea]

I made the mistake of hiding my problems as much as I could. In hindsight, I would have been better being more open about what the implications of my illness were on my ability to do my job and what adjustments I needed.

I think this is a tricky one & maybe depends on workplace. There's often the threat that if you reveal too much of what is difficult for you that it becomes a black mark against you too, if that makes sense. Not sure there's an easy answer re what / how much to reveal.

 

[MrMagoo]

I was very open, and wasn’t the only person with ME, a much longer term worker who was very vocal had it, and yet everybody claimed they didn’t know what I had or that I “got tired a lot”. And didn’t appreciate that I was allowed special treatment which others would have loved to have <sigh>

I kind of understand the point, I had work laptop because we were all required to work from home, and where we were “not allowed” to use our desks 2 days per week but had to use a “hot-desking area” where the screens were unsuitable for me.

Ultimately, the 1 day a week at home (non-negotiable when I took the job) and being allowed to sit at my own desk 1 day a week became an issue, WFH was removed, requirements to travel to other offices (lugging the laptop around on a bus) I was too “awkward”. I lost my job just before the pandemic forced everyone to work from home every day.

It’s the constant resistance to “letting you do whatever you want” which companies have. It’s absolutely seen as special treatment and a two-fingers at management “you can’t manage me”

It’s repetitive to experience. One minute adjustments are fine, then theyre not. Your colleague who you end up covering because they have a crazy work pattern but that’s due to school term times and childcare (their children live abroad because they’re actual adults now) but you’re a pest because you want to work from home, not the hot desk area. You’re still logged in, on email, with your voip phone fully available. But you’re not “there” what if they need someone “there”?

 

[Peter T]

My work was surprisingly supportive given I previously would not have rated my most immediate managers.

They had supported me going half time, working three days a week for five weeks and having every sixth week off as time in lieu. Though over time they were getting irritated by the sixth week off. However this all became moot when I had a major relapse and could not go in at all. My employers did support ill health retirement, which was good as dismissal was the only alternative having been on sick leave for a whole year.

 

[StellariaGraminea]

and yet everybody claimed they didn’t know what I had or that I “got tired a lot”. And didn’t appreciate that I was allowed special treatment which others would have loved to have <sigh>

This seems to be a common experience. I've heard so many people describe it that it seems like a rule for most workplaces.

In my case another colleague came down with Long Covid in the same work outbreak as me. Less severe and they were able to return to work with difficulty after a while.

They told me later that, on first returning, our colleagues were very supportive & kind and very happy to accommodate them. But it didn't last very long, a matter of weeks, before there was complaining about special treatment and an antagonistic atmosphere. It only added huge stress on to them trying to keep up in work in the face of illness & no support. It's a horrible position to be in. Last I heard they had to go very part time.

It’s repetitive to experience. One minute adjustments are fine, then theyre not.

Yep.

 

[bobbler]

Blog post by Fred Rossi.

There are a few terms that I now think make up disability bigotry (not ablism) and one of these I've picked out because it hits close to one of the tenets I think makes it up and is a give-away of disability bigotry:

This is what people on the outside don’t understand. When they say “but you’re only working part-time,” they think that means you have all this free time. They don’t understand that the “free time” is actually recovery time. It’s not leisure. It’s not available for social activities or hobbies or the things that make life worth living. It’s medical necessity disguised as empty calendar space.

And that key lie they tell me to my face both about me, and about other disabled, ill people that are their relatives colleagues or friends as if it is such a truism even I accept it is:

By virtue of being ill and disabled we have less on than them - with all of their 'hectic life' that when they list it turns out to be full of optional things they can turn off at a moment's notice when they get sniffles or change their mind.

So tenet 1 said by people who are disability bigots = disabled people aren't busy because real busy isn't having huge amounts of work to stay alive and survive, but what they decide counts and being seen [only in the places they frequent and decide count] to not be 'sitting around'.

Because only the 'extras' of life and things they want to acknowledge 'count'. They distort their thinking to weird tests of what is something and what isn't. And almost literally put their hands over the mouths of those worse off than them should their dare bring their reality and not pretend all is well and life is different to how it is, then happily are permitted to hypocritically do their spiel. It is quite gobsmacking, particularly now I've watched it progress over time.

Basically 'show your face in the park/cafe or we will assume you have an easy life, even though the reason you aren't in the park is because you are chasing admin people similar to me deliberately made hard because we had a day where we decided to be obstructive just cos we were fed up with our busy life and having to do our job normally so put a spanner in the works 'to show you'' - as if that is original and doesn't happen so commonly that the added disability of bigotry on top of the real disability isn't like wading thru the mud of 'deliberate incompetence' or whatever the correct term for not doing the hoovering properly so you don't get asked again is.

And I don't know where these people started picking this complete obvious inversion of what must be in front of their noses other than lockdown when most of us were too busy trying to work out how to get the basics done around all of the limitations that threw up, whilst they hung around in a homogenous mass in the park comparing notes about how they thought they were as a demographic the 'hardest up' and started distorting reality to do so.

I found it frightening it is so deluded. But nearly every single person with children (admittedly most in nicer end of jobs where they were homeworking during lockdown) says this, apart from those who have or have had serious health conditions and their perspective is so stark - I guess because they know the difference between load that is not optional, to survive and maybe stand still if you are lucky where you are and always made harder than it needs to be by people round the edges being awkward at every possible opportunity they are given leeway. vs indulging in your own consequences of your own choices.

And I've had neighbours I actually looked out the back window on to see they spent 8hrs sitting in their summerhouse reading magazines with their feet up over the sofas whilst their kids jumped on my walls (making me the babysitter as I would hear an accident should it happen but they wouldn't) trying to then later try it on to my face (but are actually deluding themselves) 'don't I know how hard their life is'. So I now take certain people's spiel with a pinch of salt until I know more than their words.

These dinners or events are of course 'extras' of life. That things have been made so hard for us to ensure that if we don't have a support network making day-to-day easier to give us any window (or making it harder) aren't actually 'essential' so we aren't given room for. It is slightly hard because there will be some who are going thru hard times and genuinely need and deserve these things and they are more few and far between. And they will often be the ones who find it hard to say that this time it means something and stomp their feet.

But according to their etiquette, distorted as it is, turning up like a monkey for them is a required rite to be seen to be giving them time and energy and often one must do things in the way they expect once there too - it's all very back-to-front in logic

I think that we have to realise that there are a large cohort of people in life who believe - and the CBT reframing nonsense that is the psychosomatic ideology is absolutely selling it, with disability bigotry at the bottom of it - that if you can find a way to reframe it into words then those words become reality. and that is now reality ie reality is what they can control of what gets said so if they control and silence truth and talk over it with their new perspective they want to believe is the case then that becomes fact and truth somehow.

 

[bobbler]

I had someone that I confusedly thought was a friend for over a decade who I went to nearly every single one of their birthday evenings, every single year for what must have been over a decade, whilst not blinking that same person would nearly always have a regular clash (a relative so I just didn't think anything of it) for mine.

But I think also she liked what she liked and whilst I would think nothing of taking the 'when in Rome' approach and turn up whatever people chose as long as it was reasonably doable for me, I know people with certain preferences also tend to think their preference is uncompromisable. When I think back now if it had been the other way around, and it got to 5yrs in a row I'd probably have been making a point of saying sorry you always come to mine and I don't make yours but let's but something else in the weekend after or whatnot to tick that box.

I just didn't notice because she seemed OK on other things that you'd say were friend stuff.

Until one year when I was going thru a hellish time (and by this point had decided to stop celebrating for many years before with any people because there'd just been too many being messed around or shouted at things and I just at least wanted some peace and a day I could control with the things I liked and could be ruined) due to selfishness of planning dates and my birthday being the one the rest of a group wanted to pick for a meet up, I got steamrollered despite saying 'no I'm not free and I'm not doing that date' with lies of them claiming it would be OK because they'd make it nice for my birthday. Clearly that was another BS regarding 'good intentions' because not one of them noted it in their calendar with intention of making sure they honoured it even though I'd explained how risky it was for me that they were pushing onto me.

I'd made sure with same group that where it had been even near their birthday I'd brought a card we'd all sign tho of course noone notices these things. I'd turned up for those things even when the date was after a huge work event so I was exhausted but technically 'free' not realising others were giving their availability based on 'what worked for them' more sparingly for over a decade.

So this birthday, based on the above, I exhausted myself and turned up dressed up , having saved the little energy I had around this horrible time that was going on. They took the mickey out of me for turning up on time for once and used it as a back-hander for old tropes, by the time I got to speak it would have been too awkward because they'd been too mean to remind them that it was my birthday - not that the unusual outfit wouldn't have been an extra clue. They spent the meal doing similar old tropes that were to do with my illness (at the time then they didn't know that was the cause - you just 'eat it don't you' and laugh at yourself until you tell people about your illness, but now it was many years on and they knew eg why I needed caffeine or whatnot for many years, and knew I was getting even more poorly it wasn't funny) and when I ordered myself nice things just to try and get thru it others who didn't know it was my birthday as hadn't been there when it was arranged and I'd been steamrollered got shifty as if I was planning on splitting the bill.

I'd travelled a long way for me and assumed as usual it would be a taxi home with those living near me and 2-3hrs with time to chat to others, but 1hr into the meal those people announced they were going to run off to the train station and if I didn't want to take an unsafe taxi alone a long distance I'd have to speedwalk a long way in the cold with them to the station. I'd spent more time travelling than they'd allowed the event to last for. And for anyone who thinks its about money the train fares would have added up to similar to a split taxi or I'd have paid extra if that was an issue.

And they'd chosen to spring it on me as a last minute surprise (despite having obviously planned it at least hours, probably days ahead to get the train times just right) when I had people who lived near who would have given me a lift home if these people had told me the plan before but they would by then have had a glass of wine etc. plus I was too ashamed of how bad my friends were and shocked to call.

These are the behaviours of people who think they are nice. That they aren't bad people. They aren't people you'd meet and know they'd do this sort of thing. In fact of course when I said I was upset later on the worst 2 (who'd clearly premeditated the ending and had spent before talking about me it felt) blamed me, one other apologised and did have excuses and at least didn't try and turn it on me causing it by not being assertive (the rest didn't know and/or hadn't been part of this and one came with me to the station also in shock and trying to soften the situation for me) even though I was up to my eyeballs with a horrid situation everyday for not having told them - as if that would have changed most of their behaviour.

What followed in the years after that regarding my illness - and their then increasingly choosing to start taking up tropey love for psychosomatics. SO I think that orthodoxy and ideology comes from those who can't face themselves and their own behaviour when it comes to those 'moments of truth' ie when tested who has it in them.

I think both of those still haven't even realised I was the one turning up the most to all of their birthdays, sending cards, nor how much it took of me to do that (because if you aren't thinking at all you aren't thinking of the rest).

Their 'teaching me a lesson' that day for whatever deluded bug they'd got up their nose definitely 'taught me a lesson' eventually that some people I shouldn't have kept making excuses for (and making sure they didn't have to ever experience the unpleasant birthdays that I had), yes I ridiculously stayed in touch until a few more times on top of that made me realise there was no feeling guilty but just not able to say it etc.

And yes these are the people who have then swiftly progressed onto cuddling books on cod psych and are mouthy about BS like trauma ('others' should 'sort their trauma' that they don't have but does explain them not having to accept their situation being hard) now. Because they gotta have excuses to look in the mirror I guess if you don't want to just apologise and have a come to jesus moment, but are 'good people' in other ways apparently, that all helps make it all add up in a strange way for some I think. They think it is 'intellectual and philosophical' not people struggling to use ad populus to justify their own internal bigotry as 'normal'.

And yes I think the approach in the workplace is the same. Some only see and remember certain things. Get obsessed with what they don't realise are their own little bigotries when they are annoyed about something else not to do with the sitting duck.

You are better off not mentioning your illness to these people and just 'behaving badly' because the illness becomes they looking out for or imagining things or pinning stuff caused by all others (productivity, even if yours is the highest) and not you on 'it must be because of the ill person' sounds more feasible unless you know the ill people work harder because they are terrified/vulnerable if not indispensible and feel bad on the small things they can't do etc.

And because truth is not all people are moral, logical, rational etc as we assume and if you behave badly or turn up late but do your job really well/outperform the rest and on balance they don't think that gives them power over you that's different in whether they think they've got the balls and standing to pick on you vs a label that even if it means no difference in your output in the workplace means rumours can pretend that is different, and some even delude themselves (and have a weird attention seeking thing/personal issue of the 'thinking you are special' problem even if you get no adjustments and do more than them).

And noone holds people to account on perspective. Reframing to shrink the picture is very dangerous but everyone is encouraged to silence those in difficult situations by simplifying the problem etc. People have frustrations and take it out on the wrong people for the wrong reasons because of low-hanging fruit and a lack of courage to be vocal with those they want to impress or who will hold things to account with them.

I think the illness is hard to understand but it also really isn't, some just choose to evade hearing the principles which they certainly could get but don't want to in other situations either. And its about those who try and live in reality and seeing it and having perspective vs reframing based on how you feel so that your emotions and actions feel logical and right etc as you assume you must be as per self-identity.

 

[MrMagoo]

This seems to be a common experience. I've heard so many people describe it that it seems like a rule for most workplaces.

In my case another colleague came down with Long Covid in the same work outbreak as me. Less severe and they were able to return to work with difficulty after a while.

They told me later that, on first returning, our colleagues were very supportive & kind and very happy to accommodate them. But it didn't last very long, a matter of weeks, before there was complaining about special treatment and an antagonistic atmosphere. It only added huge stress on to them trying to keep up in work in the face of illness & no support. It's a horrible position to be in. Last I heard they had to go very part time.


Yep.

People run out of patience. I’ve seen it a million times. Managers start getting all “right this has gone on long enough, this sickness needs to be resolved”
ok Jim, sorry it’s adding to your mental load that Bob got run over then they discovered he had cancer, I think you’ll find losing your shit about him having “another sick note” because he’s having radiotherapy will do absolutely nothing other than make a difficult time more difficult. I’m so sorry this is causing a “mental load” for you to do some actual management and work, whilst he worries about his life expectancy.

Yes he was the star worker in the team and this sort of moral failing just shows you don’t need him, he’s not contributing and you’d be better with a new team member who isn’t off sick.

/s !!!!!!!!!


Fundamentally, society doesn’t like disability. They’re not comfortable with it. They don’t want to see it, think about it, help others with it etc.

 

[alktipping]

The workforce article is good, but very repetitive.

It resonates with my experience of lack of employer support and workplace adjustments. One thing that's not mentioned in the article that I found particularly difficult was the lack of understanding among colleagues and line managers. I made the mistake of hiding my problems as much as I could. In hindsight, I would have been better being more open about what the implications of my illness were on my ability to do my job and what adjustments I needed. I tried too hard to be 'normal' until I couldn't any more and it was too late.

We all try our best to hide perceived faults that society makes illness of any sort a personal failure is truly the most telling about humans . So what else can we do .