The medical practice of silencing, 2021, Rageshri Dhairyawan

The medical practice of silencing
Rageshri Dhairyawan

No abstract. Concludes —

I am aware that my own personal experience of testimonial injustice silenced me for nearly a decade. I hope that sharing it will encourage other health professionals to reflect on the medical practice of silencing patients, its harmful effects, and why both individual and institutional solutions are needed to address it.

Link | Paywall (The Lancet)

 

Sounds like a book is due in July 2024: "Unheard: the medical practice of silencing"

https://www.waterstones.com/book/unheard/rageshri-dhairyawan/9781398718692

 

How weird! I've just finished a chapter on Epistemic Injustice quoting the same references, amongst others. It concludes that for pwME this, together with the 'multiplication' of suffering (Komaroff 21 July 2021) specific to pwME which includes silencing, over the last 67 years amounts to the systematic dismantling of their human right to health and life - the most fundamental of human rights, together with their right to liberty where patients have been sectioned.

I note she also references the Cumberlege Review which led to the Do No Harm report in 2020.

I'll take that link for additional reference. Thanks for posting.

 

I don't believe the majority of the medical profession will take this book seriously when it is published (if they even hear of it). It's written by a woman about a problem suffered largely by women. It will be ignored.

 

I'm tired of this narrative of only certain groups being affected by this. All patients are treated like garbage, we're all sub-human for doctors and other medical professionals. I won't allow anybody to tell me that I didn't suffer from decades-long medical abuse just because I'm a white male from a middle class family

 

by the way, the population of my country is as homogeneous as it can be, and we're all treated like garbage by doctors. There isn't even a notion of "different races" here, "race" is something that nobody cares about. Religion? everyone here is christian or atheist, again, nobody cares. Male of female? we achieved absolute gender equality more than 30 years ago. Oh yes, I live in Argentina

 

Not even read the paper yet. But even this line is just much needed, along with a half-decent term that I like because it puts the action and issue on the subject and not the object it is being done to

 

Yes - that's why I'm including it.

 

There's really no need to bring in trauma. At some point you simply learn that there's no point so you just stop, it's a very rational calculation that see all cons and no pros. You may as well petition the king to end his reign for it is unjust to the masses and why is everyone in the court laughing their ass off?

The creep of psychology into medicine has truly been one of the worst things to have happened to this profession, it made almost all normal discussions of conflicting issues impossible and locked it firmly in place. It basically serves as a permanent dead cat/raccoon on the table: always bringing the discussion off-topic because, well, there's a freaking dead cat and/or raccoon on the freaking table.

All they need to do is ask patients. Even when there is talk of trauma, there is simple, rational, recognition that there is simply no point trying to argue with someone who has already taken a position and will use every single word you use against you, even when it actually supports your point, because they hold not 99% or even 99.9% but 100% of the balance of power. More often than not it's not even their fault, they're taught to behave this way and are expected to or face consequences. This is like every report of mistreatment of chronic illness that simply gets batted out with a "yeah what's wrong with that? this is what we're taught at medical school"

Comatose David had a better chance against 'roided-out Goliath. We all get the point: shut up or make things worse.

 

Plus of course it isn’t that - there are actual risks and threats.

people who don’t shut up have things done to them because‘how dare you’ or ‘you can’t say that’ or then actually believing you are mad (because one of you has to be given the differences in what you think) in revenge, to hurt them so they can no longer speak, in order that whatever they have said will not be heard or believed by others - and the more wrecked you are the more they can stop it and shut you up.

it’s missing the pint that if we don’t speak it is normally Because we literally can’t because of them


Ironic if people interpret that as psychological and shows how bad and paternal breadcrumbed we are that part git twisted by ‘someone kindly speaking for us’

they need to keep looking closer and asking for testimony about the actions of the perpetrators - because that’s where it is. There’s nowt ‘perception’ or ‘in the mind/body of’ like this recent reframing from the old days where people just said they kicked em until they literally couldn’t speak but didn’t need that metaphor even (and certainly didn't suggest it was 'trauma' or that the not being able to speak was 'mental health' rather than 'injured, physically') because people knew/saw/it was obvious/logical that if someone was v ill then abused so they didn’t sleep or get rest and treatment, were shouted at, their finances attacked and told to run through hoops that made them more ill for not enough to survive and so on that they will look wretched so the doc in a suit points and says "look at them stuttering and how incredibly unbelievable what they are claiming I just did is".

Just like everyone now says they see and can relate to how bad it must have been for the sub-postmasters (particularly having the TV show playing that narrative of how what was done to them caused how they got ill, poor, done down). But how many saw people telling the truth of what happened with a stutter looking exhausted and not having their professional status behind them vs a hand-waver who slept well every night in a job with home comforts and security, suggesting it was fantastical-sounding?

In fact I think they do and say things that are so bold and outrageous because they know you can’t tell on them because it would sound so bonkers just relating it - the worse it is the more others who should be stepping in side against the person being attacked saying ‘surely not that’s far fetched that someone would do that’

So yes they have to shut up. Would the author feel safe looking clearly extremely ill and saying facts about ME that someone who had false beliefs (that you are deluded) would use as an excuse on a form to remove your freedom and put you into 're-[psych]education' ?

It wouldn't be due to trauma, but threat.

 

The thing is it isn’t proper psychology. It has been removing the science part that started to try and get in that would have told eg medics how to set things up not to harm normal people - simple stuff like spend the money speeding up test results instead of accepting it then providing counselling to help people cope with the wait. And you know things like don’t be rude and learn about autism.

what you are referring to is medics having been led to believe their own personal psychology - or some dodgy psychiatrists stuff suggesting manifestations where ‘was that a normal reaction to your rudeness and maybe do you need to look at yourself’ and the situation needs to be the start. EDIT: and yes now the subject has been taken-over by the 'everything is a pathology in the patient' (looks upset = anxiety) rather than the situation-first (looks upset = it seems to be all of your patients with x demographic, after you've shouted at them) focus of scientific psychology.

it’s a shame it’s all under one term because it ‘officialises’ what is ‘psychologies’ like bigotry as if it is science or help (the big thing with them weaponising the term then using the powers it gives of mental health when they just really want to slander someone as ‘nonsense you’re just being silly’ )

 

In fact on that note that is why I slightly am sympathetic of some of the truly evangelised or saying wrong thing pwme who’ve been thru what is a process of foot on neck to point of destruction and knowing that will just be increased as you get more ill, to then have some slimy person who says they will start reducing their abuse (and abuse of others towards you) if ……. or pat on head (that you haven't had for years) if you say what I want you to, and I’ll give you a break and will let you survive ie have more paced life than before by not being at you and putting my foot on your neck and you just have to pretend it’s my ‘therapy’ and don't mention your illness.

which is why it IS the REAL behavioural psychology that has been at play here - making sure we are aware that we will be hurt and won’t have a survival path if we insist on having a reality too. Literal punishment and reward (or 'non-punishment' by meting out less punishment, patting on head and 'giving space because you are trying' if you agree to fake it) for reality vs hiding illness.

We all know our disability is incredible. ON its own it can be 100% of body function. And yet the disability abuse levied on top is for ME as big as that too. Making even more disabled. It is horrific.

So on the basis of those deliberate threats created and pushed further and more actively by BPS which cause direct harm by hitting where it would ruin any healthy person and specifically at the weak spots of ME by it being continual, that in itself is an exertion. And for each situation , and severity/personal circumstances there will be variation between the exertion and harm associated with what is directly wielded by them vs even the extensive disability from over-exerting to avoid/escape. And that says more about how extreme the abuse regime created/allowed is than how sensitive to exertion and how ill we are. And how eager/in need some are of kindness or recognition that they can disown themselves and reality - it is better for them, and it isn't their fault it was worse before or would return to that. They might have 'trauma' but its also for them at that point genuinely pragmatic to enter into that pact when the other person offers no choice that should be there as a human right.

Sadly because the illness doesn’t get changed by that just the person at best many of us have done that by no choice to some extent as a condition of less abuse to have some life with less abuse as a holiday but our health eventually goes and at that point it doesn’t matter what we say we’ve broken the contract by being so obviously ill that effectively is our body and appearance breaking the omertà they require.

So you get severe and it can be really nasty because just your face and body being how it is and not something you can now change or fake to 'perform and avoid the abuse' is like insisting on the existence of something (invisible illness as it is enforced to be becomes unhideable)


You don’t have that ‘safety net’ of being moderate and realising summarising all your adrenaline and tricks to walk yourself out of somewhere having not talked with a smile on your face to keep time and energy as short as possible so you can avoid asking for anything special like light adjustments somewhere to sit that works don’t end up needing a wheelchair or god forbid collapsing - but it all being safer to take the hit of months of payback and some deterioration than adding abuse on top by not playing the game and calling attention to yourself.

So they think we are all ok but it’s that threat.

I spent two days horizontal and mute resting for a dental appt prepped and survived the journey then waiting room then at pint of called in ‘oh we’ve switched to upstairs room are you ok with stairs’ . It was two flights I’d waited a year for something I was supposed to have done within a month or two of previous appts but other even more urgent-risk had meant that had been the earliest I’d squeezed it in. I’d still have payback from all that and journey back anyway and have to do it all again. Even if they were lovely you’d imagine someone kind finding another ground floor room would be a huge wait

I did the stairs and I think it’s a year on and the effects still last as it was several flights in an already over filled task.

but stupid people take that as ‘can’

and people only slightly better think I didn’t speak because of what?

 

The thing is, the people who write these articles and papers should specify that this applies to certain countries such as the USA or the UK, since ME is a disease that affects people from all over the world, including countries where "minorities" is an alien concept, such as mine, Argentina