Rethinking 'Recovery': A Comparative Qualitative Analyses of Experiences of Intensive Care With Covid and Long Covid in UK - Maclean et al - 2025

Journal: Health Expectations

ABSTRACT

Introduction
Interpretations of ‘recovery’ from illness are complex and influenced by many factors, not least patient expectations and experiences.

This paper examines meanings of ‘recovery’, and how it is strived towards, drawing on the example of COVID-19 infection.

Methods
Drawing on qualitative interviews (n = 93) conducted in the UK between February 2021 and July 2022, we compare adults' accounts of being admitted to an Intensive Care Unit (ICU) with COVID-19 to accounts of being ill with Long COVID, defined as ongoing symptoms for at least 12 weeks postinfection.

We conducted a multi-stage comparative analysis using Nvivo to organise and code the data.

Results
We identified similarities and differences in participants' descriptions of their ‘worlds of illness’. For both groups, perceptions of recovery were shaped by the novel, unknown nature of COVID-19.

Participants questioned the achievability of full restoration of prior states of health, highlighted the heterogeneity of ‘recovery trajectories’ and described the hard physical and emotional work of adjusting to changed selves.

Themes that revealed differences in ‘worlds of illness’ described included the different baselines, waymarkers, and pathways of illness experiences. Differences in other people's responses to their illness were also evident.

For ICU participants, hospitalisation, and especially ICU admission, conferred legitimate patient status and authenticity to their symptoms. Family, friends and healthcare professionals acknowledged their illness, celebrated their survival, and granted them latitude to recover.

For Long Covid participants, their patient status often lacked comparable authenticity in others' eyes. They reported encountering a lack of recognition and understanding of their ongoing need to recover.

Conclusions
This study highlights how the meanings of illness ascribed by others can influence how recovery is experienced.

Our findings highlight the importance of ensuring people are made to feel their illness experiences are legitimate, regardless of hospitalisation status, formal diagnosis or lack of medical knowledge and pathways.

They also indicate the value of emphasising the different permutations, and lack of linearity, that recovery can take.

This may help to help to guard against a lack of understanding for experiences of recovery which do not meet idealised notions.

https://onlinelibrary.wiley.com/doi/10.1111/hex.70253

 

One of the authors of the paper, Cervantée Wild has a summary on Bluesky:

New paper out unpacking the idea of 'recovery' among patients with Long Covid and those admitted to ICU & differences in baselines, waymarkers, pathways of experiences, & other people's responses to their illness

For ICU participants, hospitalisation (especially ICU admission), conferred legitimate patient status and authenticity to their symptoms. Family, friends and healthcare profs acknowledged their illness, celebrated their survival, and granted them latitude to recover. BUT...

...for Long Covid participants, their patient status often lacked comparable authenticity in others' eyes, with a lack of recognition and understanding of their ongoing need to recover - challenging their claim to patient status or 'survivor identity'

Expertly led by Alice MacLean with many dear colleagues, and Callum O'Dwyer providing valuable patient expertise
@oxprimarycare.bsky.social
@longcovidkids.bsky.social
@longcovidadvoc.com
@longcovidsupport.bsky.social
@longcovidsos.bsky.social

 

I am always going to be disturbed by the replacement of the words "chronic illness" by the word recovery because its not what the word recovery means at all.

 

Not sure I follow what you're saying. I don't see where they are replacing "chronic illness" with "recovery".

 

I’ll let @BrightCandle answer about what they meant, but here are my personal concerns about the text. I have not been able to read the text in detail, so my thoughts are based on the abstract and the summary by one of the authors.

This section could be perceived to make it out like recovery is the only worthwhile option for someone with a chronic illness.

Again, there is no mention of how recovery might not be possible, only that recovery might not look the same for everyone.

Another section that just focuses on recovery.

To give an example - imagine a chronic disability caused by the loss of a limb. You can never regrow a limb, so you will never be able to recover. Or imagine a disease like Parkinson, Dementia, COPD. In those situations, recovery is not possible.

This is how it currently is to live with ME/CFS (including those caused by Covid) for most people. They’ve tried everything and anything, but nothing helps.

So why do we keep talking about recovery for these people, instead of talking about managing the disease and ensuring a highest possible QoL?

Instead of talking about how someone ‘strive towards’ recovery, why not talk about how it is to live with an illness where recovery in any meaning of the word isn’t possible?

 

Thank you for finding those quotes.

It’s a shame that that sentiment isn’t more prominent in the abstract or the author’s summary.

 

It’s trickery as well I’ve come to realise - another method of coercion and silencing - to trick people that probably wouldn’t never use that term recovery in that way to have false words put in their mouth.

and an indictment on professions that they want to do research to muddy waters whilst pretending and taking funding claiming it is giving insight into others whilst actually removing it

I imagine those who were in ICU are simply trying to say they’ve realised that other people expecting they will long term be ‘recovered’ and go back to the people, lives and capability they had before is unlikely. And that’s not ‘fear’ or ‘carastrophisatoon’ (saying that is abuse) because after enough years you feel it in your body having tried the pushing through and routines in different ways and it making you worse. And realising noone is offering anything. So you are stating for OTHERS to sort their expectations. On the other hand they probably if they’ve had the acute things of ICu do have treatment for things like lung stuff they can complete and be discharged from with actual medications.

why and how controlling, cruel and silencing is it do we have certain professions correcting people seeking to be understood and probably doing a perfectly good job with their own words - and insisting on imposing terms that will cause confusion in the way they want ? To disappear an illness having long term disability into insisting that being 50% disabled is called ‘recovered’ when it isn’t and that term is therefore abusive by misrepresenting the situation in order to hide medical need.

 

Just another shifty tactic of denying/removing their existence by renaming something with rights and meaning to something that is a word which is the opposite of what it is being stuck on.

Like calling someone left 50% paralyzed recovered from a car crash in order to disappear that basic need and its links to the cause and how effective the treatment was in remedying it.

silencing and disappearing people and their situations and worse coercing them they aren’t allowed to talk of their medical or adjustment needs without being coerced into using terms that disappear them - its disability bigotry really isn’t it to force and disabled person to call themselves recovered or you’ll call them other names and then use that recovered term to claim the gap of 50% between their previous ability and what they need now is their own responsibility

 

It’s bigotry about social acceptance only being achieved if people learn to lie and hide their disability m

we’ve all lived that tyranny and it’s immediately upped again of recent weeks thanks to propaganda being pushed all just to get everyone on board with targeting the disabled - that the only problem we have is our attitudes. That the only hurt we experience when someone is vile and callous to us is our daring to say that was cruel wrong and callous and there wouldn’t be a problem if we smiled and took the abuse. That’s where I’m at right now daily nasty changes in attitudes of those around me to kick me as the dog to kick. Everyone happier as they’ve been given permission to put themselves first by taking liberties from me as an undeserving who has no floor to what I should be left with as a life vs what reason they might be taking liberties just for fun. It’s removed perspective. And it’s removed the logic that if you bully us we get more ill and that not being our fault but theirs as consequences of their actions.
So everyone unkind and not ill is currently immediately having more fun because we’ve been handed over as fair game to grabby takers who’ve now been told that as their selfishness makes us worse and more ill everyone round then will back them up that it’s not their fault for being grabby takers but theirs ill person for ‘reacting to it’

even on my birthday I was shouted at as I was told I deserved to be alone without even a phone call if I insisted on putting my health needs first and wouldn’t change the day to be about another selfish person bullying me because their needs and ‘deserving’ for my birthday came first. That’s the norm for every birthday for me to just be screamed at and hurt but that was the first year my cat who was the only thing that ever loved me had died

this ‘treatment’ and deserving ness of it is precisely what this twisting of probably good, kind volunteers who put their health out to help these people but were taken advantage of is selling. Abuse. And deserving ness of the most unkind most cruel and without anything life ‘if people get ill enough they won’t disappear their disability’

all from lazy people who took advantage of others stepping up to give them what they didn’t have spare ‘to help’ and took the easy road in their research and fibs in their interpretations to make their lives where they had lots of spare even easier . It’s just bigotry there is no other word.

THat's the most galling and immoral part - that patients are not protected ethically and they put themselves out to others who take advantage of them and it absolutely needs to end. You'd think it was the researchers who'd done unpaid work here out of the kindness of their hearts as some sort of favour, yet it breaks my heart thinking how much it must have taken out of these participants to put across an experience these people could never understand without such monumental effort and it turns out they just wanted to inser their own lines whilst using people's names to tick the box it came from participants

 

I was really searching for the right words. Its Orwellian using recovery to mean it will go away in the future for something that will actually be chronic. Its also insidious in how it corrupts the use of language and frames the discussion and the patients perspective of what they are dealing with. If someone asks you "6 months after the CBT how is your recovery going?" its framed your possible answers. Even if in the end of the study they recognise its not likely they are still using that word throughout and its just the wrong word. Orwellian is the best I can come up with, war has become peace.

 

You are correct it is a straight Orwellian tactic the bps colonising all words that patients would need in order to change them into meaning something else, so that basically they can't exist.

And yes they can call it 'reframing' (sadly CBT in the bps context is indeed being used not as a health treatment or therapy but as a coercive technique to reframe and distort truth, and encourage its fans they can make reality what works for them/truth doesn't matter - not how it was designed or intended, hence I find it so offensive given it is used for harm, obvious harm in many contexts and by many people. And that seems to have made certain researchers think all this is acceptable) or whatever lying weasel words all they like but in both market research methodology teaching and in the regs to do it the term is clear: these are leading questions ie they deliberately prevent the correct answer from being available in order to gerrymander the results.

The differentiator of good research and writing in papers used to be the ability to communicate in such a way that it read without confusion and used does what it says on the tin terms, this seems to be propaganda for changing this.... "what if all health workers didn't have to report outcomes in a substantive way but could instead manipulate facts and reported % recovered into new terms that infer 50% recovered is the new 100% as long as you coerce a new word into patients mouths when filling out surveys"

I'm trying to think of analogy to bring it alive for non-ME people. Maybe something like if all of their savings were stolen due to some loophole with a card or bank, and they got £1000 back after a ridiculous amount of hours of hoop-jumping, and were then forced to fill in a survey that termed that 'recovery of lost monies' instead of 'still £tens of thousands down'. Then said organisations claimed that 'noone has been left without recovery' by reprhasing honest people saying they got some money into forcing them to use the term 'recovered'.

Even if this happened in most market research the regulations would require that when they were reporting/using any results they would have to declare what the other options were. And I'm pretty sure that in the stolen money example the regulators wouldn't allow them to just use weasel words to omit the 'full' and pretend/infer everyone had been put right.

It is like MPs or health services planning simply removing the age box or gender box for whichever they've decided not to serve and forcing eg 40-50yr olds that it is OK there will be no possibility they can record their needs because they can pick the next closest age. And then telling the public that no 40-50yrs reported any health or constituency issues.


I feel so sad that I imagine it being clear and obvious that these people who have had an awful time are trying to say to people who have been coercively setting them targets they as patients are then held responsible to meet, that these people need to understand they can sense their body is such that they cannot possibly promise (as long as healthcare aren't interested in finding some actual proper medical cure) they will have the capabilities and be able to complete the obligations and tasks they did before getting ill. And someone has rephrased this as forcing them to use different terms that disappears this issue.

Or worse these people actually work in this area and are so ill-suited capability-wise for such a job that even when someone tells them straight they won't and can't hear what they don't want to. And of course this work directly is about contributing to causing that issue. It is a destructive cycle that desperately needs to be stomped out. About making communication and being heard impossible, about invalidating and removing certain illnesses or symptoms or situations from being acknowledged.

It's laughing in the face of the idea of 'patient voice' and I find it a disturbing example of how big the coercion issue is and how the dishonesty forced by it is then used to provide a mandate for even more coercive conditions.