The patronising attitude of holistic medicine and the inherent irony of the term

[hotblack]

I started to writing this elsewhere but decided it better sat in its own thread. I talk a lot about the science but wanted to touch on something perhaps more fitting with the spirituality thread although also more wide ranging.

One of the reasons the holistic thing gets to me is it is both wrong but also patronising. I am a vegetarian, who ran, I meditate, didn’t drive, all that, these are all things which I think are good for me and due to that for those around me and for the environment. I think it would be great if others also were vegetarian and mindful and exercised, used less private transport etc. the world could be a bit nicer. But I do not mention them often or preach, I find that annoying. And I believe doing so makes the world a less good place, defeating the point. I digress a little but I wanted to lay out a bit of my, for want of a better word, philosophy. I get things wrong, make mistakes, haven’t always been as nice to myself (in fact I’ve had self destructive periods), my body or others as I could, but who is. I try. Because I think it’s worth it and right. BUT. These things do not make a sick person well!*

My problems and frustrations are not even really caused by my illness (although that does have a part, I came to terms with it a while back) but with others attitudes towards my illness and the needs that necessitates. I cannot control others, but sadly I do entirely depend on them to stay alive and have any quality of life. So I need them to recognise my illness, my needs and how their actions have a direct impact on my health. And to recognise that saying things can make me well which cannot is not helpful, that patronising me is not helpful. Now, we all have to and indeed have put up with a lot of these things. And tbh, despite our reputations in some circles, I don’t think have pushed back much. All disabled people face far more prejudice and frankly bullshit than they return to the world, this is well studied.

So all this is to say. Sometimes people who are into the holistic thing make a significant mistake. They are often not being holistic but instead being very very narrow. Because much as ‘nice things are nice’ and we should create a society and environment that encourages them, the real barriers, the real,things which need challenge and change are not how we breath, eat or think. But how entire societies think and how the systems they create see us. That level of holistic thinking would be welcome.

*(There may be some, albeit small, evidence that things like eating well and having a positive attitude and good social support etc can help people to have slightly better outcomes when done in conjunction with proper treatments for illness, or indeed as seems to be the case in ME/CFS, support people in what would be without them still an entirely spontaneous recovery)

 

[hotblack]

Before we had treatments for now treatable disease all we had was spontaneous recovery.

Look at the history of TB and the sanatorium. Those who could afford it went to nice clinics in the countryside and were looked after, some recovered, others didn’t. Various ‘treatments’ were tried. Those who were poor didn’t have such support so died in less salubrious environments, perhaps more often because they didn’t have support and couldn’t rest to recover or be isolated. But fundamentally it was antibiotics that changed things. Similar things happened with other diseases.

So yes, the idea of recovery and supporting that is not new. Nor is quackery. The disappointing thing is that the spontaneous nature is not accepted nor is the need or indeed the requests for the support we need to live or the research needed to find our equivalent of antibiotics.

 

[Evergreen]

Can you explain a bit what you mean by holistic medicine or the holistic thing?

 

[hotblack]

Can you explain a bit what you mean by holistic medicine or the holistic thing?

That’s part of the problem, there isn’t one definition so it means different things to different people. So it can range from perhaps just making sure someone is getting enough good food and rest to healthy or ethical living, managing physical and mental health, the idea of looking at the ‘whole’ person rather than focussing on one area of an illness, through to various forms of alternative medicine and quackery.

But here’s a recent mention in the context of people who say they’re caring for people with ME/CFS.

She has a holistic team to help people eat properly, breathe properly, sleep properly, be emotionally regulated 'to develop the landscape for health'. This is apparently a cornerstone to recovery. Some aspects of her model are similar to what we are suggesting, but some aspects are definitely similar to the rehabilitation clinics that we are rejecting.

 

[BrightCandle]

It seems to me its a eyphemism for diet and exercise added into the medical repoitiore to "to make people healthy not just treat disease". Only those things don't actually bring health, absence of disease does. Its just quackery with a different name, none of what they are adding is well evidenced.

 

[Evergreen]

That’s part of the problem, there isn’t one definition so it means different things to different people. So it can range from perhaps just making sure someone is getting enough good food and rest to healthy or ethical living, managing physical and mental health, the idea of looking at the ‘whole’ person rather than focussing on one area of an illness, through to various forms of alternative medicine and quackery.

But here’s a recent mention in the context of people who say they’re caring for people with ME/CFS.

Gotcha. The meaning I'm used to is mainstream health professionals just making sure they're not being an idiot and trying to focus on X when what the person really needs now is support for their son who is an addict or whatever, working on things that will actually have a meaningful impact on their life, that kind of thing. Seeing the big picture of the person's life rather than just the little section they know something about.

But it's clear the term is now used to mean something like "the unevidenced stuff I'm going to foist on you to pass the time while you spontaneously improve/stay the same/deteriorate, some of which will give you the warm fuzzies, but none of which will do anything for your ME/CFS so your meagre energy would be better spent elsewhere".

I cannot control others, but sadly I do entirely depend on them to stay alive and have any quality of life. So I need them to recognise my illness, my needs and how their actions have a direct impact on my health. And to recognise that saying things can make me well which cannot is not helpful, that patronising me is not helpful.

This is really hard. Have you been sick a long time or is it still early days? This kind of stuff eased off for me over the years, but I did have to gently push back a lot and it was and is wearing. Or maybe it's just that I can't really talk to people now so they don't get to say it to me!

 

[rvallee]

So all this is to say. Sometimes people who are into the holistic thing make a significant mistake. They are often not being holistic but instead being very very narrow.

I take the term as typically used in biopsychosocial/psychosomatic ideology as being entirely Orwellian. It never meant the same thing as the actual word means, it's only ever used to push a singular, obsessive viewpoint at the exclusion of all other options, the exact opposite of holistic thinking. And it's entirely intentional, the exact same as a religious extremist calling for someone to be 'open-minded' about their cult.

I don't think anyone who uses it in this context actually believes what they say. They know it's reductive, and use the term as a weapon, to force their singular, obsessive focus on us, and they do so because when it's mixed with power, it just works. It works in the same way as a prison guard working in a prison where they are free to abuse inmates can simply do that, abuse the inmates. They can simply always get away with it because they are in total control of the situation. It's not just defended, it's promoted, encouraged, rewarded.

The big tell is that scientific medicine was always much more open-minded about these things, it simply acknowledged that they didn't know, but physicians were always happy with dismissing concerns based on stress or whatever term was fashionable at the time. This perverse version of holistic thinking is far more reductive than how traditional, scientific medicine has worked, because it explicitly shuts the door whole to all biological explanations. And since health is all biological, even if they actually did fully take all other things into account, it would be far more reductive than the old ways.

It has simply never been a sincere thing, and privately I'm pretty sure everyone involved know it. But it's so damn easy and convenient. They just think that their singular obsession is right, and that it justifies anything they do to force it on us, while the rest don't question it because they don't have the time and are not involved anyway.

 

[Hutan]

Thank you @hotblack, this is a useful discussion.

Yes, 'holistic medicine' could mean something good, but usually does not. It often makes the lives of people with ME/CFS worse.

There is the impact on mental health, where the person ends up feeling that they have caused their disease because, for example, their diet was not always perfect, or lose confidence in their ability to make decisions for themselves - after all, it seems that they can't even breathe right. This impact can be multiplied when the doctor makes pacing a highly prescriptive joy-sapping exercise that is extremely difficult to live with. Prescriptions for things like scheduled meditation and mindfulness can use up time and energy, leaving none for the things that really help the person get through the day with some level of pleasure (such as the distractions of streaming services).

Holistic medicine can greatly stress families at a time when there is already great stress on relationships. Parents can enforce regimes on their children, out of love but causing great harm - for example trying to enforce a 'healthy sleep pattern', or limiting the screen time that is actually their child's only remaining pleasure or opportunity for social interaction. People with ME/CFS can get angry with their family caregivers, because they are not able to provide the high quality food, or afford all the alternative therapies and supplements that the doctor says is essential to get well. Caregivers can get angry because they believe recovery is possible if only their sick loved one would comply.

There is the impact on physical health. Holistic medicine can create a whole lot of busy work, appointments with counsellors to discuss why you are a people pleaser, appointments for vitamin infusions, appointments for traditional Chinese therapies... Often it will also include a version of graded activity therapy, yes, often gentle, some yoga, some tai chi, but still, activity that adds to the load of the day. There are tradeoffs, if someone has to get to an appointment for acupuncture, it can mean that they run out of energy to wash or brush their teeth or sort out how to get a mammogram. It can increase the chance of PEM.

The cost of all of this can result in financial stress and so, perversely, emotional stress and cut backs on costly things that could truly help maintain good health, such as dental care.

And there's one last negative impact I can think of. Holistic medicine can make the person seem a bit crazy to medical professionals and to others. It makes the person 'that person' who turns up to hospital with a vast collection of supplements and weird ideas. It won't matter that the ideas were given to them by another doctor.

 

[Felis Catus]

I really enjoyed reading this thread and wondered if a letter/opinion based on your posts could be submitted somewhere for publication. (Obviously that's not on me to impose or decide... it was just an idea.)

I went to the BMJ to see their formats and topics only to spot a patient letter titled "Linking my chronic pain with trauma" on the homepage in Education section...

 

[Felis Catus]

Holistic medicine can greatly stress families at a time when there is already great stress on relationships.
...
Caregivers can get angry because they believe recovery is possible if only their sick loved one would comply.

It's easy to be frustrated with other's compliance when you accept doctor's advice as truth and don't feel confident or competent to analyse and challenge it. It doesn't help if the advice seems easy - avoid sugar, take supplements, enjoy a massage, relax by meditating,... Can it be easier than that? It's almost trivial taken outside the context in which the patient lives and has so little capacity left, most of which goes to constantly fighting way too many battles anyways.

My caregiver's enthusiasm about doctors' advice on lifestyle changes came to an end when it turned out that they would have to prepare all my meals according to a nutritionist's plan alongside working full time, being my full time carer and maintaining the household.

Someone who hasn't had any major health issues or caring responsibilities would maybe wonder why someone wouldn't be able to follow a meal plan with recipes someone else compiled for them. After all, people follow recipes and diets all the time for all sorts of reasons. In this case they wouldn't even have to look for recipes and make decisions.

This also creates an additional problem where caregivers can feel inadequate. Furthermore, they might not confide in friends and family fearing blame and judgement, which further perpetuates self-blame and negatively impacts the caregiver - patient relationship.

 

[Hutan]

It doesn't help if the advice seems easy - enjoy a massage

Yes. As just a small example of how things can go wrong, I bought a bulk deal 10 massages early on in my illness, thinking massage might do something - relaxing, getting something moving, I don't know exactly. It felt like I was doing something constructive for my health. Anyway, I found I was getting three day PEM after each massage. I didn't believe it, I kept going and kept feeling as though I had been run over by a truck for days afterwards. I learned slowly. The massage therapist said nonsense stuff like 'releasing the toxins'. I didn't use up the 10 massages, but I must have got to number 6 before I gave up.

I still find it hard to believe, but massage reliably triggered PEM for me. Perhaps it was the whole thing of needing to shower before hand and get down the road to the massage clinic, but I think it was something about damage to muscles. I don't expect a caregiver would believe it, or a doctor.

'Have a massage' seems such an innocuous suggestion. But, there was a substantial financial cost and it caused harm, it certainly didn't help. I am concerned every time I see it included in suggestions for people with ME/CFS.

And that's the thing with all of these suggestions that have no evidence behind them. There is probably some sort of down-side to every suggestion, and often there are many down-sides. If there is no benefit, then the down-side is all there is.