BPS attempts at psychologizing Long Covid

@Sid I experienced it myself when I became ill with a viral infection. Lots of eye rolling and asking me about my 'love life'.

 

It's like watching a trainwreck in slow motion.

 

It is. I dread it happening to someone close to me

 

@Sid My experience as well.

 

Same. A good friend who is a doctor said to me that he had changed his scepticism towards CFS because "you're not the kind of person to make this up". However he slowly and steadily distanced himself from me over the years.

Part of me thinks that he distanced himself because he felt uncomfortable that he was unable to help me. However I could sense that 'terror' in him whenever we interacted that you refer to.

 

When being assessed by a psychiatrist this came up in the conversation.

We discussed the BPS viewpoint & personality types & the inherent contradictions.

Also that it would be so much simpler all round if we would comply, surely she could see that if we could, we would. Especially, those who were the athletic and motivated types.

At every turn we are penalized, judged as wanting & dismissed, abandoned by friends and loved ones & neglected. There is no secondary gain and only a liar or a fool could claim one.

There is only one reason, as far as I can see, where people already deeply disadvantaged should be treated this way. Fear.

Why are they so afraid of us?

 

Nosophobia? I wonder if their pulse increases when they see us?

 

I think another part of it is that our diagnosis is highly stigmatised and therefore very low status. People, consciously or not, don't want to be associated with that in any way.

In addition, doctors are taught during training that if you ignore "functional" symptoms, they improve. Any "attention" from other people or mobility aids or disability payments are thought to be harmful and reinforcing of the condition (so-called secondary gains).

Family member of mine is a doctor and she won't even bring her kids (who like me and ask to see me frequently) over to my place more than once a year max. It's always "you should come over" when in fact everyone knows well that's impossible. When we're in the same room she interacts with others but never says a word to me and pretends I don't exist. We've never had an argument or even discussed my condition; the cold shoulder came out of nowhere. She even ignores clear-cut, non-ME/CFS related medical issues I get like having an infection or surgery. This is the sort of person who runs to urgent care for every minor symptom when it affects her and her nuclear family whereas I'm the bad one even though I always hide and minimise my very serious symptoms, never discuss them with anyone IRL and don't seek medical attention even for "real" illnesses unrelated to ME/CFS until the last possible moment.

The terror/phobia is real. I suspect that the MDs who have contracted long covid will face total ostracism from their colleagues. Many of them won't admit it but on some level they feel inherently superior to the rest of us, superhumans who shouldn't get sick, let alone with something so shameful (in their view) as this.

 

We have a disease that strikes out of nowhere, causes pain and disability, has no cure or explanation and can leave both adults and children bedridden being tube fed in a darkened room for decades. Even cancer has treatments.

They have to believe that only "weak" people get it or that there is a cure if anyone is willing to do the work. That is obviously not them so they and their families are safe.

 

At this point honestly I think the bulk of the fear is "what if it was wrong all along?", which is a very reasonable fear to have in the circumstances. Because once this gets acknowledged the horror of having doomed millions to lifelong suffering and early death has to be dealt with. Especially since this is the nth time this happens, every time with the same outcomes. It basically threatens the very integrity of medicine, to have committed harm that is on a scale with massive continental warfare.

Except of course this fear is easily addressed, it just takes money and letting people do their thing without other weird people being offended that people disagree with their beliefs. But now it's too late, decades and millions of lives have been deliberately wasted on this and there's no coming back from having committed such an atrocity. Except for all the times it happened before, of course. Every time things went back the same they were and no one was punished, hence why it keeps happening. So I think this is mostly a matter of conscience, of preferring not to look at whether the cat is dead. Keep the lid closed and you can imagine how fuzzy and purry it should be.

 

That's just awful. I've had that 'cold shoulder' from many GPs in their offices but it would be much worse from family. I'm sorry.

I agree. There are a few doctors with ME in the various local social media groups I frequent. Most of them don't use their real names and they hide their condition from their colleagues.

 

Along with the well-reasoned theories already given, I'd say that nobody goes into medicine so they can tell their patients "I don't know what's wrong with you and there's nothing I can do to help you." I would think that ME represents everything clinicians most want to avoid in medicine: a severely debilitating condition that cannot be quantified or even objectively diagnosed. It does everything to remind clinicians of their inadequacies. You can't show off how smart you are. Or really help the patient. ME patients just waste their very limited time with our weird symptoms that don't seem to make much sense. I would think that the more insecure the medic, the more severe the terror @Sid mentions (and, like @Art Vandelay, can I just say how sorry I am that your relative acts so appalling to you).

 

I think the fear is visceral.

In a just /fair world no one wants to be the one who "deserves" ill health.

We all like to have some (false) sense of control and self determination. When I was growing up and someone experienced bad luck, especially financially, the attitude was "as long as you've got your health...." or " your health is your wealth". You don't know how true that is until you lose it.

In recent years some doctors have started to deplore the lack of understanding and stigma attached to mental health problems, yet then go on to stigmatize and discriminate against us in the same way. In fear of their own lack of control over life & wanting to be " worthy" of health, they suspend their ability for critical thinking and allow gut reaction to take over.

In accusing a vulnerable patient group of abnormal beliefs, weakness, malingering & so on they are projecting their fears on to us and justifying that by claiming that it is the patient who fears stigma, rather than themselves.

To me, when a healthcare professional reacts to ME patients this way they're demonstrating that either they lack the capacity or will for critical thought, or they're own fears about health & status have become irrational/abnormal to the extent they are no longer capable of doing their job.

 

I just read the text of a recent Financial Times article which displays a degree of use of unconscious stigma in its treatment of a case history.

Its behind a paywall so I am quoting a relevant excerpt as fair use for discussion. The story of Cesar Abreu is related in such a way that it creates an impression of artistic neuroticism, in particular by quoting his phrase "what worries me" adjacent and subsequent to the report of panic attacks. I think this was deliberate and the motive on the part of the author was to create a sense of controversy because controversy sells. This is one reason ME gets backhanders from some journalists, because they make money out of our torment and they prefer to keep it going than treat the subject fairly.

 

Thats good, SlySaint found a link which works

I recently found an example of how the medical profession closes ranks.

Its from 2009 but the well known British actor Kenneth Cope who played Marty Hopkirk in the original Randall and Hopkirk Deceased was barred from his GP after complaining about his GPs negligence in failing to notify him that tests had revealed his previous diagnosis of mesothelioma was a misdiagnosis.

I think medics are only human, they do make mistakes but as Ken Cope pointed out, they/we need to learn from mistakes and the closing of ranks prevents this and no matter how embarrassing it is to admit a mistake, it is worse not to and compounds the problem. As my grandad used to say, the only thing worse than making a mistake is failing to learn from it! I was fortunate to have a wise grandad.

I think the psychologizing of medical illness occurs when a medic is trying to work out what the real cause of the patient's reported symptoms is. They naturally ask themselves what is causing the symptoms but are trained in scientific scepticism which encourages disbelief of anecdote, which any patient report is by definition. So there arises a moment where the medic has to decide whether the symptoms reported correspond to a known condition or if not whether the patient's own account is reliable. ME and longcovid have as yet no reliable tests or unambiguous symptoms.

What happens next depends on the calibre of the medic but there is a natural inclination to avoid wasting effort which many ME patients will recognise all too well, since it is not in the interests of living things to waste energy. In common parlance it can be seen as laziness but it is natural and instinctive impulse to calculate effort required versus likely reward which is brought into sharp relief when you have ME and PEM to contend with.

IMHO psychologizing ME and longcovid is a lazy strategy, in which the pleasures of saving energy incorrectly reinforce the circular thinking that if a patient is unreliable then any attempt to discover what is wrong with them is a waste of time and effort. Its this intellectual tautology and presumption which the psychologists who parasitise this kind of illness feed on. You have to make that presumption for anything they say to make sense.

Unfortunately ME patients have this very difficult karma of being forced to conserve energy and so are in a sense obliged to be lazy and I wonder if this may have an influence at some socio-cognitive level, in a way which encourages some medics to fall for this presumptious and lazy thinking about the very patients they are contemplating. I cannot say for sure and it probably depends on the individuals involved but I do wonder why we have such a hard time shaking off this kind of sloppy thinking. Bad karma seems like as good an explanation as many, in my book, but not due to anything we have done, just unfortunate circumstances colliding with more unfortunate circumstances creating a perfect storm of misconceptions.

On a positive note I do believe the incidence of longcovid will be sufficiently high that non-sloppy scientists will have the opportunity to study it and are likely to uncover truths about it which may well have relevance to ME diagnosis. I think its too big to brush under the carpet this time but we should still be on our guard for lazy thinkers and those who seek to exploit them.

 

In general, how many people/what percentage of e.g. post Covid patients would it need for a BPS approach to be dismissed?

We know that over decades there were millions getting ill post viral, but it was from different viruses over time and not enough attention.

Now with Covid, it's ONE virus in the spotlight and some say 1/10 experience a long(ish) aftermath.

Isn't that enough to maybe say: It's the virus, not the people? Does it have to be the majority, e.g. 6/10 to dismiss psychologization? Or will BPS be a part of ANYTHING and you BPS-die from a shotgun wound because if your childhood had been better, your body could have fought the injury better?

I'm being cynical but serioisly wondering, at what point would they step back?

 

Voluntarily accept they are wrong - IMO never.

Which doesn't mean that some other agency may not knock them back - but the likes of SW - never.

 

They might if they were suddenly held to account for their claims. If they had to take responsibility for the woeful figures in terms of improved health, recovery in real terms etc.

They might be stopped if suddenly health trusts were held to account for the damage caused to patients.

Currently, there's far too much money to be made with spin offs by way of new improved therapies such as ACT (improved by my new definition de jour meaning makes naff all difference) and apps - see the apps are great for bringing in ££££ from venture capital. Especially as drug companies have to demonstrate at least some rigour in their research, so no big payday there.

They won't until they're stopped.

 

This is not universally true, though nearly so, but this here will be a textbook case of as Buckminster Fuller put it: "You never change things by fighting against the existing reality. To change something, build a new model that makes the old model obsolete". Which is basically a fancy description of the asymmetry of bullshit and the reason why evidence-based medicine is a massive failure: once a solution is put in place, no matter how flawed, it takes far more effort to displace it than it would have been to simply build something better in the first place.