Psychology Today: Learning About Long COVID From Other "Invisible" Illnesses

[Andy]

KEY POINTS

• People diagnosed with ME/CFS must manage extreme fatigue, and their experiences have implications for those with long COVID.
• A challenge of managing an illness like ME/CFS is its invisibility to others, despite its severe impact on a person's ability to function.
• Ensuring people feel believed is central to managing both ME/CFS and long COVID.

Long COVID is now formally recognized as a medical condition with over 200 possible symptoms. Spread across multiple organ systems, these include effects on the heart, lungs, immune system, reproductive system, and brain. One of the most common and debilitating effects is extreme and unavoidable fatigue.


There is a profound need to better understand the experience of those living with long COVID, especially while there are no clear and effective medical treatments available. What will best help people manage their illness? How can employers, friends, and family best help? Some of the best clues come from listening very carefully to those who have struggled for decades in a similar fatigued limbo—those living with ME/CFS. Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is characterized by debilitating exhaustion after any sort of exertion that is not fixed by rest.

https://www.psychologytoday.com/gb/...out-long-covid-from-other-invisible-illnesses

 

[Trish]

The beginnings of quite a good article, but why no explanation of PEM? They perpetuate the idea that the central problem is fatigue. And nothing about pacing, just about being believed. The stuff about people defining themselves by their employment is quite good, but very superficial. Nothing about the harm done by psychosomatics and GET.

OK, it's a short article and can't cover everything, and the authors are anthropologists, so I guess the focus on roles and relationships in society is understandable, but we're sick - and one of the biggest failings of society is in massively failing us in terms of care. And there are highly rewarded villains in society who have put us in this position. That's something anthropologists could get their teeth into.

 

[rvallee]

I reject the premise of invisible illnesses. The issue is not invisibility, it's denial, discrimination and negligence. Those illnesses are just as "invisible" as people at the bottom of a caste system, it's an active deliberate process.

It's used a lot and it annoys me every time I see it. It's the wrong framing, it removes all blame from willful negligence. This is not like forgetting your kid in the bustle of a vacation like in Home alone. It's all intentional.

 

[duncan]

Sometimes it's the system, or part of it, that renders the illness invisible. A 1983 paper on Lyme, for example, purportedly had that very affect by reducing subjective symptoms to "minor" status. The result was that if clinicians could resolve the handful of overt "major" symptoms, the disease could be deemed cured regardless of how debilitated the subjective symptoms rendered the patient.

 

[bobbler]

I reject the premise of invisible illnesses. The issue is not invisibility, it's denial, discrimination and negligence. Those illnesses are just as "invisible" as people at the bottom of a caste system, it's an active deliberate process.

It's used a lot and it annoys me every time I see it. It's the wrong framing, it removes all blame from willful negligence. This is not like forgetting your kid in the bustle of a vacation like in Home alone. It's all intentional.

Agreed - does anyone remember the trend about a decade ago of people saying "talk to the hand not the face", I'm sure there are various jokey variations on that but it highlights an actual phenomenon of what a lot of people do. And they do it to those who have non-invisible conditions too when the suffering in front of them is in the form of struggling with something or not being 'on form' ie they probably accept cancer needs treatment but aren't necessarily giving leeway to an employee who is unreliable 'for too long' because they are going through treatment for it vs 'allowing them time off for appointments'.

I've noticed recently from having other individuals around me at various points how those who don't carry any illness but are of certain types actually on the other hand get exactly wht they need with thundering moods or threats of them, ignoring what others say or pretending not to understand in order to dominate a conversation or frame things only one way (which happens to not be objective or allowing the different agnles of impact - just what they want). Said people are astonishingly unaware that they are effectively being elbows-out takers.

So I'm really not sure that all this is about a simple battle of what some want to pretend it is - aspects of the illness or ill person itself - but a lot to do with the characters who do work on a thrust themselves first basis and a society who would find it easier in the moment to take their side and avoid the foot-stomping vs 'have perspective' where there is a need vs a want. We all know where that type of society approach leads of course without safeguards, or ones which those needing them can actually have a chance of using/they work at all. That sort of thing then cascades as everyone down the chain tends to scrabble to step on someone else they are allowed to in order to compensate for getting it from those more 'elbowy'.

Eventually the people who've broken their own toys get very mad at the toys for daring to be broken (the oens they refused to hear the information informing them that if they do that throwing them against the wall or whatever then said toys won't be there for them later should thye actually miss playing normally with them) and blame them for why life isn't going as they want ... and so on. Anyway the 'talking about' or 'acknowledging' which is really what the 'seeing/invisible' is about would make looking back and attributing where they've ended up something they don't want to reframe too, and that is where things stand rather often.