Trust in the Context of ME. My #MayAwareness blog post

[Keela Too]

Hope this is okay to share. I've included an audio version of the post too.

"Trust issues run through every level of the ME experience.

Being unable to trust our physical bodies to perform, is just the beginning. Trust, in the context of ME, goes way beyond personal, physical problems. The problem of trust, runs right to the top of our medical establishment."

continues here:

http://sallyjustme.blogspot.co.uk/2018/05/trust-in-context-of-me.html

 

[Sly Saint]

The problem of trust

I would add another to that..........I also trusted that the ME charity that I joined when I was diagnosed in 2001 would be giving me the best advice and was acting in my and other pwME s best interest........
It took me nearly 15 years before I found out that this was not the case.

 

[arewenearlythereyet]

Very nice piece. I particularly enjoyed listening to your dulcet tones Sally very impressive and very relaxing ...have you thought about talking books? Or even better perhaps a collection of our limericks (tasteful ones of course).

Such a big topic ...Trust also also goes as far as other establishment areas ..teachers, social services, PIP assessments, insurance that doesn’t pay out, in fact you could probably write a whole book on it ...I guess no one expects to be so thoroughly put on the scrap heap so quickly by so many people and companies you thought were there to help/protect you.

 

[Invisible Woman]

There is also the most sinister (for me) part, where vulnerable patients are told not to trust what their own bodies are telling them, that they are not reliable witnesses to their own lived experience.

The damage to their health, their relationships is hard to express.

 

[Keela Too]

Thank you @Sly Saint @arewenearlythereyet and @Invisible Woman for your kind comments.

Once I started writing about trust I found there was so MUCH I could write about. I admit I considered tackling the issue of the charities and other organisations in which we are expected to place our trust, but the topic already seemed big enough, and I ran out of energy to go further.

I think the angle about how ME patients are told not to trust the signals from their bodies is particularly pertinent - I'm actually annoyed I didn't think of that angle myself!

 

[Allele]

Well done, Sally, and so nice to hear your soothing voice as well

 

[Keela Too]

Thank you. The audio seems to have had quite a few listens, so I'm hoping it was useful to some.

It's an interesting testament to my improved stamina these days that I was able to read the whole 8.5 minutes in one single take.

Back in September 2015, when I did the audio for the ePatient presentation shown at Queen's Uni Belfast, I was only able to do the audio in 2 minute chunks. So, in the end that audio (pasted into a powerpoint with images) was a very long project of doing just a little each day over a period of several months.

 

[Luther Blissett]

Once I started writing about trust I found there was so MUCH I could write about. I admit I considered tackling the issue of the charities and other organisations in which we are expected to place our trust, but the topic already seemed big enough, and I ran out of energy to go further.

This piece might have bits of what you want to say. https://blog.ted.com/how-to-trust-intelligently/

 

[Barry]

Do NICE simply accept these assertions on trust? Have they not investigated the flaws of the PACE Trial for themselves?

When I was a young aircraft engineering apprentice in the RAF, the mantra they hammered home to us pretty much every day was "Don't assume - check!" NICE would do well to ponder it.

 

[Gecko]

There is also the most sinister (for me) part, where vulnerable patients are told not to trust what their own bodies are telling them, that they are not reliable witnesses to their own lived experience.

The damage to their health, their relationships is hard to express.

This is what I now realise happened to me. By professionals who were very nice and I believe, in some cases at least, genuinely trying to help. It wasn't outright, I was never told "it's all in your head" in those or equivalent words. Just gently told that pain after exertion (e.g. walking to the loo) is normal, that I shouldn't shield myself from noise as this will only make things worse etc..
I've been meaning to write a letter to my first CBT therapist, she still has CFS listed under her specialties..

Will go listen to audio now, thanks @Keela Too really good to have a recording.

 

[Keela Too]

I tweeted a snippet to Jeremy Hunt - for all the good it will do.

 

[Sly Saint]

In light of recent revelations about the new alliance being formed, I was just thinking where would we be if everyone had just gone along with what we were being told (or not told).
There would have been no questioning about the PACE trial, Esther Crawley would be heading up the MEGA project, with Peter White as advisor. The decision not to update the NICE guidelines would not have been reconsidered, David Tuller would not have been funded, and UNREST would have just been another documentary about chronic fatigue.............

 

[Inara]

This piece might have bits of what you want to say. https://blog.ted.com/how-to-trust-intelligently/

Thank you for this, too. I personally think trust is an important topic.

I like this from @Luther Blissett's link:

Sensible people want to place their trust where it is deserved. They also want to place their mistrust where it is deserved. They want well-directed trust and mistrust.

That is exactly what I think.

I once spoke to a psychotherapist, and we had a conflict. I told her right now she doesn't give me any reason to trust her, so I won't, and she insisted I simply cannot trust and that I had to learn it (what a standard sentence of therapists...this deepened my mistrust and disgust for her). I never went to her again.

I learnt one thing from this: " Trust" is often misused by power people; by forcing others to "trust" them, even blindly, they can control and dominate people.

I know from this psychotherapist that she is a very dominant person (I knew a friend that worked with her), so I admit that I had more mistrust than I would have had without that knowledge. To be fair, she very clearly said that in her view the doctor is the master and the patient has to follow. Well...not for me.

I can only motivate people to trust themselves - their feelings and thoughts - and not to succumb to that crap that some or even many psychotherapists say, "you cannot trust yourself because you - and your feelings and thoughts - are sick; I have to correct that".