Getting back to normal? Identity and role disruptions among adults with Long COVID 2023,Spence et al

Abstract
Long COVID is a novel chronic illness with a variety of symptoms that people who have labelled themselves ‘long-haulers’ experience for an extended duration following a COVID-19 infection. We draw on in-depth interviews conducted in March–April 2021 with 20 working-aged adults in the U.S. who self-identified as long-haulers to understand the consequences for identities. The results demonstrate that Long COVID has important consequences for identities and sense of self. Long-haulers described experiencing three stages of biographical disruptions: realising their illness experience as misaligned with sense of self and embodied, age-based expectations; facing challenges to identities and changes in social roles; and reconciling illness and identity in the context of an uncertain prognosis. It remains unclear how long-haulers will resolve biographical disruptions and identity conflicts, especially as scientific insights about this novel condition emerge. Such outcomes may depend largely on whether Long COVID remains a contested illness or medical knowledge progresses to improve their quality of life. For now, healthcare providers may approach Long COVID holistically to address the identity disruptions that long-haulers face as they manage the consequences of this chronic illness.

https://onlinelibrary.wiley.com/doi/abs/10.1111/1467-9566.13628

 

A case where "may" actually should be "100%". Literally everything else is secondary, and this:

is not even secondary, it's not even something you can do, and pretending otherwise is a large part of why everything is broken and people are needlessly suffering. The crap about this being a "novel" disease is especially infuriating, especially as the patients understand this so much better than everyone else.

They know we have been failed for decades. It even terrifies many enough to want to be kept separate from us. They know none of this is new, and this lie is especially insulting given that all the same mistakes have been repeated almost fanatically.

Illness is disabling. Disability is disruptive. None of this needs to be framed in a narrative, especially not a narrative from the perspective of the people who are failing us. The patients explain it all the time, that only symptoms and illness matter, the rest they can figure out. And without fail, they reframe it from their own perspective as people who are unable to recognize their own failure.

I have never seen people so puzzled as physicians looking at sick people and trying to figure out why sick people are behaving like sick people and are disabled like sick people. It's just pure silliness at this point.

 

Yes, there's a disturbing trend to "solving" medical problems by changing descriptions, definitions, or other word-manipulation. You can't fix a broken leg by renaming it, and the same holds true for other medical problems.

Someone should set up something like the Ignoble prizes for medical practitioners or researchers who do the most to block real help for patients in attempts to further their careers.

 

The reframing business again hey

Is this an 'inversion' conclusion? I almost couldn't tell until later on because really the logical conclusion of this (particularly if it were speaking about ME/CFS) might/should be a 'what have we done to these people, how awful', ie the 'effect' seems to be being distorted as the 'cause'. EDIT: or more accurately the situation (dystopia) which could cause harm of various types ergo is a 'harmful situation' is being distorted into a particular type of injury being inferred (I'm not sure it is proven, just the situation these people have been plunged into is noted).

And the horrible thing with the term 'holistic' is that it seems to mean doing more of what has caused the harm (dystopia) is thrown at people

Anyway if so then the well-put quote in the following scene from Dead to Me (Netflix, series 2) springs to mind:

Of course, as per the norm, she said that her son needed to apologise to Parker for how he treated her - as well as my quite liking the fact it doesn't beat around the bush in this sentence to note the cause and responsibility being firmly linked back to the son's behaviour being the precipitator.

Anyway,

How is it possible that a psychosomatic journal that publishes the very narrative behind these issues is perhaps speaking in terms pretending 'it just happened' and standing whistling as if those describing the impact of it instead having 'feelings that come from inside themselves' when they are actually describing a situation created.

And when the Academy of Medicine (2015) report notes an 'anti-stigmatisation campaign/plan' is required because misinformation has been so rife for ME/CFS, noting similar causes, how is that not having to be cited or noted?: https://nap.nationalacademies.org/c...hronic-fatigue-syndrome-redefining-an-illness

 

Struggle to get past the chosen term "people who have labelled themselves 'long-haulers'" as their opening line. Whatever they might innocent-face claim they were 'innocently refering to methodology-wise' [which might I add brings up another big question on whether it is valid at all by definition of the validity of whether they have actually checked everyone actually has the illness they are claiming to research] this seems a deliberately-loaded way of stating it.

So which group are they actually researching? Have they actually found in a proven way some of the type they might be assertively sure exist who don't have long-covid yet chose to label themselves? Or did they just not ask and ergo these people actually haven't labelled themselves, someone else confirmed it?

Or is this the usual insulting "shouldn't be acceptable for any illness" scenario?

EDIT: I've just realised the first line is even worse than this - and they've defined the actual illness as something that those who have labelled themselves long-haulers 'experience'.