Article: I have long Covid. Don’t call my chronic disease a ‘journey’ – STAT News

Chandelier

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I have long Covid. Don’t call my chronic disease a ‘journey’​

I would sooner call the experience a bad trip​

Peter A. Swenson is professor emeritus in the Yale University Department of Political Science and author of “Disorder: A History of Reform, Reaction, and Money in American Medicine.”

Like millions of Americans, the author has long Covid and rejects calling chronic illness a “journey.” He feels the term sugarcoats a debilitating condition marked for him by fatigue, dizziness, brain fog, breathing issues, muscle weakness, and post-exertional crashes, tied to inflammation, autoimmune processes, and dysautonomia. His medical tests show cardiac and neurovascular problems, including arrhythmias, pre-load failure, orthostatic intolerance, and impaired oxygen extraction.

He argues that “journey” has become a sentimental, overused metaphor promoted by medical professionals, writers, and AI-generated language. Patients overwhelmingly dislike it, as shown in New York Times comments and Reddit posts describing the term as cringeworthy, repulsive, infantilizing, or tied to “toxic positivity.” Few ever object in person, but many feel the word trivializes serious suffering.

The author notes that beautifying disease is not new: Sontag criticized glamorous metaphors about tuberculosis, and Ehrenreich condemned the sentimental “breast cancer culture.” The “journey” metaphor spreads because it implies choice, growth, and positive outcomes—none of which match the forced, stagnant reality of chronic disease. Meanwhile, advertisers and influencers cheapen the term further with “weight-loss,” “makeover,” and even “credit card” journeys.

Alternative metaphors offered by Sontag and many patients—illness as a dark place, cage, prison, ditch, derailment, or “Cancerland”—fit reality better. Some patients do use “journey” for themselves, and the author accepts that personal choice. But he insists others should not impose the word: “nobody who hasn’t been through it gets to call it a journey.”

 
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Yeah, I always hated that with a passion. Especially once you know that it's entirely on purpose, putting lipstick on a diseased pig. The whole non-medical language about illness is frankly disturbing to the point of being dystopian. It's a system built to fail, mostly by being entirely indifferent to failure.
Patients overwhelmingly dislike it, as shown in New York Times comments and Reddit posts describing the term as cringeworthy, repulsive, infantilizing, or tied to “toxic positivity.”
And this has been known from the start. It's all over the literature. It's liberating language, but for those who say it, not those who hear it. It frees them of worry and responsibility about the illness in front of them, by presenting it with sprinkles and fancy candles. It reflects a childish inability to face reality, but it has extremely harmful consequences for millions.

Yet another thing that in a few decades people will look back in horror, despairing at how people could be so vain and cruel. Because it's the default mode, until the top-down institutional imposition of cruelty and indifference is fought back from the ground up. Or a scientific breakthrough makes it all obsolete, but this is the perverse beauty of this system: it perpetuates the seeds of its own failures. If they fail, then it means they were right all along. Or at least, they're content with believing it.
 
I’ve heard it from multiple HCPs and lots of friends and family.

There’s talk about when I get better. Always some underlying expectation that things will improve.

Probably because that’s what they understandably hope for, and it might be more bearable to think of it that way. Not that it makes it hurt any less..
 
This is so annoying. Everyone treats it like a phase. People don’t get I’m profoundly disabled by something with poor prognosis and have followed a pretty progressive course up till now.
Exactly.

And it makes me feel less worth now. I want nothing more than getting better, but this is still my life that I have to accept, and it feels like everyone values it so little because all they talk about is how to get away from it.

I have still not spoken to a doctor that’s willing to admit the poor prognosis. They say it’s important to maintain hope, but I’m starting to wonder whose hope they are trying to preserve.
 
The other term I really hate is "healing". As if living your life with a debilitating chronic illness is some how healing from something, its implying people are recovering when they aren't. All of this flowery language covers for extremely unpleasant continuous awful human experience just to cover up their own discomfort about what is happening to us.

I am grieving the loss of a friend with this illness today, people are dying from ME/CFS and Long Covid and if you know enough of them that impacts you most weeks. This isn't a journey or healing or an experience, this is a plague being ignored by governments and healthcare that is killing people slowly.
 
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The other term I really hate is "healing". As if living your life with a debilitating chronic illness is some how healing from something, its implying people are recovering when they aren't. All of this flowery language cover for extremely unpleasant continuous awful human experience just to cover up their own discomfort about what is happening to us.

I am grieving the loss of a friend with this illness today, people are dying from ME/CFS and Long Covid and if you know enough of them that impacts you most weeks. This isn't a journey or healing or an experience, this is a plague being ignored by governments and healthcare that is killing people slowly.
To put them together. What never fails to trigger me is “healing journey” or “recovery journey”
 
Exactly.

And it makes me feel less worth now. I want nothing more than getting better, but this is still my life that I have to accept, and it feels like everyone values it so little because all they talk about is how to get away from it.

I have still not spoken to a doctor that’s willing to admit the poor prognosis. They say it’s important to maintain hope, but I’m starting to wonder whose hope they are trying to preserve.
Anyone who uses that hope silencer in any context other than in relation to a big good new research project or being properly, genuinely knowledgeable that eg we can transform the space in which you live to be more manageable and hopefully you can have more from life is just an aggressor.

It's funny see because they've got you because if you call them out for being rude and coercive and incorrect by saying it then they think because they've worded it as some positive intention for you then you can be accused of being a grouch or whatever. A rebrand of minimisation. I believe it's real honest guv that you mightn't get better but am now rebranding it as hope to force you to say the same thing yourself otherwise it's you not saying the mantras out loud 'not helping'.

If their intention in saying it was true and consistent with their claims then they would be doing little nice things that made life better without hurting the illness because they'd heard us and educated themselves. Life really being made worth living. Not us being told we have to say that all out loud so they can lie about reality without us being a hiccup to that.

Actual actions showing things will change because people are now getting it to the extent what they do is now supportive and will give us space to exist without being harmed. Not forcing us to pretend and tell them what they do is OK and will end differently.

God help any one actually allowing someone ill to plan and manage their illness rather than obstructing them to make them more ill with every action because of their own 'issues'.

It's like how now forevermore future birthdays are about the obligation on you to perform as if you aren't terribly ill to make all of those around you feel less bad. Particularly as most of them did the wrong thing to you, ignoring the consequences the first time and so doing it repeatedly until you were where you are. And now they have to pity you and it doesn't strike most to not puzzle how you ended up there because they imposed the decisions that could have made it less worse onto you as not decisions because if you made the wrong one they undermined it to make it just as exerting thanks to this nonsense.

Apparently I still owe them even though what is really owed is an apology and that to be the size of the consequences they chose for me rather than their preferred 'all I did was' they'd like to minimise it to. LIke saying 'I just stuck my foot out' rather than sorry your broken leg might never be the same after I tripped you up thinking it was a good idea. Fine to claim we both have to put it down as an accident and forgiveness when it happened once and somehow they weren't to know, not when it is 20 times in a row and then thousands and not protecting from the 10,000s of others than happen several times a day (because you half understand them and would rather they didn't get annoyed with you over stopping harm).

Yea yeah some get awkward and don't know what to say, but people with other illnesses are allowed to, if they are so disposed, say to them that its inappropriate on these types of errors and not get talkback from most. And yet the types we get lumbered with prime everyone that should we do so then it says something about us.

But that's the cod/anti psychology BS that's been allowed to be dumped on this illness, and everyone's happy because it means this smelly grim part of society that doesn't want to be corrected doesn't have to be dealt with by anyone else if everyone else just does a pact of letting us be their one freebie focus. And boy do you find out how many people have this little bit inside them that just needs to kick the dog.

We all have to remember how hard it is for those having to look at us and to use all our effort to make it easier on them to carry on regardless without feeling bad.

If one of those aspects of feeling bad hidden deep down somewhere is guilt at having the wrong attitude, being callous and doing obstructive things then they should be firmly directing it at the bps stuff and its followers who misled them. Weird how most of them never do.
 
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The other term I really hate is "healing". As if living your life with a debilitating chronic illness is some how healing from something, its implying people are recovering when they aren't. All of this flowery language cover for extremely unpleasant continuous awful human experience just to cover up their own discomfort about what is happening to us.

I am grieving the loss of a friend with this illness today, people are dying from ME/CFS and Long Covid and if you know enough of them that impacts you most weeks. This isn't a journey or healing or an experience, this is a plague being ignored by governments and healthcare that is killing people slowly.
:hug: :hug: :hug:

I'm so sorry x


And whilst it feels wrong to write anything other than this, I absolutely agree. It's expecting those harmed to sanitise their and others' own existence to/for those who played a part in letting it happen or be worse than it needed to be, so that the failure of bystanders can continue onwards. The one respect they are first due is that truth and acknowledgement.
 
I’ve heard it from multiple HCPs and lots of friends and family.

There’s talk about when I get better. Always some underlying expectation that things will improve.

Probably because that’s what they understandably hope for, and it might be more bearable to think of it that way. Not that it makes it hurt any less..
:hug: that's such cruel and 'chosen misguided' behaviour :hug:

And if they are insisting on continuing with it after they've been told it is hurtful..?
 
:hug: that's such cruel and 'chosen misguided' behaviour :hug:

And if they are insisting on continuing with it after they've been told it is hurtful..?
I haven’t been able to make myself understood yet and there have been other more pressing issues to address.

I don’t think they’ll stop perceiving this as something we/I have to get through for now anytime soon.
 
this is a plague being ignored by governments and healthcare that is killing people slowly.
And in a very nasty cruel dishonest and cowardly way.

Above all else this stuff is just utter cowardice in the face of appalling truths, especially about themselves.

Which, incidentally, is ultimately why I have no respect for them whatsoever and am so hard on them. They deserve it. Moral cowards are the most contemptible of all.
Anyone who uses that hope silencer in any context other than in relation to a big good new research project or being properly, genuinely knowledgeable that eg we can transform the space in which you live to be more manageable and hopefully you can have more from life is just an aggressor.

It's funny see because they've got you because if you call them out for being rude and coercive and incorrect by saying it then they think because they've worded it as some positive intention for you then you can be accused of being a grouch or whatever. A rebrand of minimisation. I believe it's real honest guv that you mightn't get better but am now rebranding it as hope to force you to say the same thing yourself otherwise it's you not saying the mantras out loud 'not helping'.

If their intention in saying it was true and consistent with their claims then they would be doing little nice things that made life better without hurting the illness because they'd heard us and educated themselves. Life really being made worth living. Not us being told we have to say that all out loud so they can lie about reality without us being a hiccup to that.

Actual actions showing things will change because people are now getting it to the extent what they do is now supportive and will give us space to exist without being harmed. Not forcing us to pretend and tell them what they do is OK and will end differently.

God help any one actually allowing someone ill to plan and manage their illness rather than obstructing them to make them more ill with every action because of their own 'issues'.

It's like how now forevermore future birthdays are about the obligation on you to perform as if you aren't terribly ill to make all of those around you feel less bad. Particularly as most of them did the wrong thing to you, ignoring the consequences the first time and so doing it repeatedly until you were where you are. And now they have to pity you and it doesn't strike most to not puzzle how you ended up there because they imposed the decisions that could have made it less worse onto you as not decisions because if you made the wrong one they undermined it to make it just as exerting thanks to this nonsense.

Apparently I still owe them even though what is really owed is an apology and that to be the size of the consequences they chose for me rather than their preferred 'all I did was' they'd like to minimise it to. LIke saying 'I just stuck my foot out' rather than sorry your broken leg might never be the same after I tripped you up thinking it was a good idea. Fine to claim we both have to put it down as an accident and forgiveness when it happened once and somehow they weren't to know, not when it is 20 times in a row and then thousands and not protecting from the 10,000s of others than happen several times a day (because you half understand them and would rather they didn't get annoyed with you over stopping harm).

Yea yeah some get awkward and don't know what to say, but people with other illnesses are allowed to, if they are so disposed, say to them that its inappropriate on these types of errors and not get talkback from most. And yet the types we get lumbered with prime everyone that should we do so then it says something about us.

But that's the cod/anti psychology BS that's been allowed to be dumped on this illness, and everyone's happy because it means this smelly grim part of society that doesn't want to be corrected doesn't have to be dealt with by anyone else if everyone else just does a pact of letting us be their one freebie focus. And boy do you find out how many people have this little bit inside them that just needs to kick the dog.

We all have to remember how hard it is for those having to look at us and to use all our effort to make it easier on them to carry on regardless without feeling bad.

If one of those aspects of feeling bad hidden deep down somewhere is guilt at having the wrong attitude, being callous and doing obstructive things then they should be firmly directing it at the bps stuff and its followers who misled them. Weird how most of them never do.
This.
 
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