@Yann04 I'm sorry you have to deal with this BPS nonsense from your caregiver. This feels like emotional abuse on some level. I would full stop this convo if I was in this situation but maybe it's not something you have control over. I hired a homecare worker in the 90s for shopping and errands only because there was no internet back then. One day she said, 'you have to try a little harder sometimes' and I fired her on the spot! She used to leave messages on my answering service telling me to 'pick up the phone, I know you're home', so I picked up and had a very frank conversation with her, then I filed a harassment complaint to her supervisor.
What I do with other stuff is I leave it until I can face it. I have some post (not urgent) I need a lot of energy to open, so I haven’t opened it yet. Once I do it will be a lot of reading and emotion. I have planned to leave it until next week. With the caregiver I’d be wary, that must feel like such a strain.
I’m so sorry you went through that. My caregiver situation is fortunately far better and more privileged than what you went theough. The problem for me is more that they don’t really understand how small my limitations are and and how crucial it is to respect them, even though they really try to. They also have a hard time letting go of their institutional trust. So it’s difficult for them to trust what I say about my illness more than what the doctor says (or what BMJ says), if that makes sense. But at the core they really care about me, I’m really lucky about that.
@Chestnut tree If it’s of any help, I can say that both of you have taught me things during my short time here. So even if you can’t contribute in the way you want, your presence impacts those who interact with your content.
@Yann04 I’m in pretty much the same situation, although I’m less severe than you. It’s really scary to think of how the people that wants to help you might end up hurting you in the process. Wanting to help really isn’t enough, you have to know how. When the safe people are unsafe, it’s no wonder we react. I don’t have any good suggestions for how to deal with it. The only thing I can say is that I’ve had some limited success with telling them that they have to focus on my needs and not their intuition. Learn what I need now, understanding why can come later.
@Yann04 Are you able to provide something in writing, like downloading and printing out a pamphlet that explains in detail your medical condition? I don't mean to stress you with this and I understand. Our support group in the 90s made up these informative well designed pamphlets to give out to family and had them set up in doctors clinics that explained our illness. This was how I found my ME doctor. I handed them out to everyone so I didn't have explain myself over and over again. Whenever they asked questions or tried giving me unsolicited advice I would hand them a pamphlet. They took my illness seriously after that.
I have used resources. But none of those pamphlets really manage to describe my severity accurately. Like my inability to tolerate sound at all, things like that. I never thought about writing myself. Good idea!
I have to guard myself and recognize when things are hitting too hard. Take a break. I avoid threads that are too much. I am better at doing this these days and I also am better at recognizing when to take a break.
it's maybe different for me because that's what nearly everyone I meet is polluted by, so there is some sense of validation of at least knowing it is their delusion and where it has come from. I had years of not knowing why I was being treated the way I was by most around me and what was wrong with them, so there has been some relief in seeing that it isn't an accident and they were just being taught/programmed in it. And I've had this young, so only been treated with respect when I've bargained with the devil to hide it and 'act normal' and even to do so am required to bigot myself (to not give it away) by being self-deprecating to things that were disability rather than personal flaw - and the pressure requiring me to do that and give up most rights have been extreme and without pause. ie none of this is really a shock, it just explains people to me. I get some relief of seeing it as hopefully one day these people writing their own bigotries down (which means they can be dissected and unpicked in a way it is hard when you are talking to someone and they are undermining you or saying something inappropriate, to get under the skin of where that came from) means that history will maybe look back, hold up a mirror, and rename psychosomatic literature as a relic in how bigots deluded themselves for a good historical lesson of how people came up with excuses to justify what I don't think is much different to a nasty combo of misogyny and disablism underneath it. ie I sort of see it as propaganda and focus on the job of picking apart the sophism, methods and where it doesn't add up. I also remember when I was doing my degree about how for the science of psychology they noted there were certain areas that weren't really psychology but got included under the term in order that they were analysed. The line said by one of the module leaders was 'there are some areas of psychology that are hounded out by science proving against them, and then every few decades they just regroup and come back again and the job has to be done again'. So I know how their 'notions/beliefs' and standard of work have been seen as a joke subject/laughed/marvelled at before and assume one day it will revolve back there. So I guess I've always been a bit sanguine to it and think of it as an issue about/problem with them rather than us. I also find it being written down at least gives us a roadmap to unpick what some might have as deep held 'isms' but don't really explain or even ask themselves the 'why' on. ie I guess that because of my background it is because I'm actually not realising it is different to others when I look at it because I'm actually studying 'them' [the writers] and seeing it as a straightforward psychology methodology and/or marketing task. I forget that I'm supposedly the object. What I do get frustrated by is why others do the emperors new clothes on these things because looking at most of them they are so blatantly poor the only conclusion for these people making such a good living from them is others choosing not to look (and it isn't even too closely). SO I almost see it as my job to where I can spend to few minutes to open it and write the one-liner pointing out the switch-and-bait/normally obvious flaw. I guess just as so many people will write a review for an item that didn't cost them much and they won't buy again but feel it is the right thing to do for all sorts of reasons. I also have learned that most of their papers if they are at least up to the level they've tried to put in some sort of research under the propaganda lines (some just seem to be manifestos of ideas without any actual experiment) that it doesn't tend to take me more than a 5min scan of the common areas where the significant 'major faults' are likely to be in order to write them off. A recent example was when I finally found the link that led me to the full paper (normally the bit that takes longer than finding the faults once there) I realised the claims in the abstract were based on interviews with just 3 people who had done the actual intervention and follow-up. Going straight (particularly on retrospectives) to the chart in the method/results where you see the drop-out process tends to be revealing of how they Krypton-factored a survival of the fittest process to filter out those illest then claim the reason the end group was 'more well' was their treatment. Or they just straight off take the results that they actually got then misrepresent them in the abstract. SO it makes me realise how happy/chosen dumb most who are reading them are that they aren't taking 2mins to just notice particularly that last one by looking at the results section itself. And I guess it gives me some comfort to know that those who I'm surrounded by are just choosing to either be swindled or really don't know what they are doing at all and susceptible to words they don't check the authenticity of ie I'm superior to them either in intelligence and/or morals, so yes I read it looking down on/to look down on (and tut at) these people who write it and read it with belief and definitely on those who reference it. Or because those people think they are so busy they can't so I'm hoping that I make it easy/more possible for them, particularly if they are having to stand up to bosses who are just parroting one-liners that no longer add up.
So I find the fact in my daily life I'm permanently having to waste my energy overlooking these people's flaws and sensitivities (based on their reframing so they believe their life is harder than mine because...) to avoid their faux-offence exhausts me. And it can be for me like sanity-therapy getting it written down to dissect the crazy-thinking written down that is behind the stuff making my life hard that I have to tip-toe around. Plus I'm probably sometimes a bit business-like in my contact with some of these papers, because my studies taught me that if you are to be critically evaluative then you go striaght to the methods section etc. And that is lighter on energy looking at those bits because the 'automatic processes' with checking that involve less concentration until I have to actually read or write a line of what that particular method bit was claiming/about. It might be useful one day on this forum for us to put a list of the common 'errors' these papers tend to have which might help spread the job but also turn looking at these into more of a 'spot the difference' type task of finding which of the classics on said tick-list are in that paper. I will admit that when I do see certain names like Ross-Morris however I can be a bit hesitant and feel physically sick at the moment of clicking due to being wary of the tripe I might uncover, and that certain feeling of from some authors there just being a weird viciousness I feel comes from them in the beliefs that must be behind thinking of some of those things in such a way, it is so led by insinuations of personality (which in my degree I learned personality is a how area of tosh that cannot be studied as a 'science' or as proper psychology given it has no construct validity to most things particularly 'perfectionsism' given everyone means something different by that term, so so must they have yet still decided to carry on regardless). ie I find the personality-driven stuff particularly coming from nowhere and a bit scary - where the aim seems to be that they've decided these slights and want to justify them (it's not about illness at all), but also because that stuff is a full step beyond even where the culture actually is. I also see that as politics (certainly not health, definitely anti-mental health/psychology, and not science). Others/other areas it seems to be the same old one trick pony thing ie from laziness of having one belief and thing on their belt they are just getting away with churning out variations of the same thing several times a year as if it is something new (and being fascinated whether they think it is something new or realise what they are doing). At least it is explained that they are doing it only because others are letting them and paying for it, so why would they think too hard about what it might mean for patients (as they've bills to pay and it must be 'useful' if they are beign paid). And of course that bubble/ad populus/group dynamics issue. I've also found it interesting watching the lines trace back to eg certain Royal Colleges etc and know what it is like when someone is going about their normal day job and they don't blink an eyelid/think too hard about if you agree (and critically evaluate) when their boss asks them to just trot off something on x. So I'm curious to keep abreast where I can because I can see habit and just not having time to stop and question orthodoxy plays its part. And some of the methods and sample (the frequent flyer stuff still amazes me)/outcome switching shows what knots some have had to tie/contort themselves into in order to write something backing up the correct punchline. I guess that also, people interest me, and whilst I don't watch too much dark stuff others (who don't have ME) might - like serial killer things because I don't want to know about the depths of human nature and what people do to others, but some get fascinated by watching interviews of how they think or operate - there is something of that type of things. vs also being interested in the power and ways propaganda can operate/persuade people who are downstream in how they think, I feel I need to keep on top of and dissect because it is sophism being marketed as if it is research. What we don't have yet is some research from psychology looking into that next tier down, of those who aren't writing these manifestos necessarily but are happy to be persuaded by them out of their own convenience or 'matches' with some value or ambition (career-related ideology stuff), or aren't even actually persuaded just using it having not really thought about the end patient in the career path or following the herd myths if they have a job that is Healthcare or not even related (it seems to be taught in management policy classes, teaching and so on) so just parroting. And I think that would be a fascinating new subject area - I just might be a bit unusual/niche in that!
interestingly he is one I do tend to avoid, there's normally not much to what he says or behind it, so there isn't much to add or dissect ie it just seems to be opinion to irritate and not even trying to put any explanation or pretend method behind it even. I also have my own theories on that maybe being a special case based more on the influence of who you hang round with type thing and how that can impact people when they go through a vulnerable time, so having seen it happen before in other totally non ME-related people over the years it feels like I'm watching something quite different to 'just' a bps thing - so would need to take more time than the quick dip-in I could give it to make my mind up on what's going on there
I have always taken the approach that other people start from a place of unknowing regarding ME, just as I did and its my job to lead them through the experiences I have had to help them understand at a practical level why I have to be the way I am. This has always worked for me. I have training as a teacher but also a good backstory of ten years undiagnosed when I tried my best to do voluntary work for MIND, OXFAM and SCOPE and made myself much iller in the process, so I have made mistakes myself and can use these to illustrate why making more effort is the wrong thing to do and why pacing is the right management strategy, which is counterintuitive to anyone who has not had this condition. I take the view one has a perfect right to challenge by disagreeing in a friendly way with a view one regards as mistaken and then explain in a conversational way to get them over the hump of recognising ME as a distinct condition and not comparable to the way they feel after a long day at work. Which means one has to go to them in terms of world view "I thought that too but then..." and then lead them to understanding by telling them how one learned different. Treating it as an educational challenge and telling them my story and experience helps me to get other people on my side. At the very least they know how I look at it and why and are entitled to their own opinion, as long as it doesn't lead to actions which harm me. It is easy to see anyone who does not understand as a threat but its also an opportunity to educate, if you think about it those who do not understand are the very people we need to educate, as the saying goes, better to light a candle than curse the dark.
That sounds really sensible, boolybooly, but it's not as straighforward as you suggest. I am also a teacher, but while continuing to teach part time with mildish ME/CFS for over a decade, I didn't find my colleagues or bosses interested in learning about my experience or symptoms. None asked what it was like or what my difficulties were, very few saw any reason to make adjustments for me, and I was only offered an occupational health assessment in the last year when it was becoming clear I wouldn't be able to continue. Even friends and relations made false assumptions and weren't interested in learning more. I guess it's partly about personality. I have never liked drawing attention to my health problems, even with close friends.
Same here. I only ever talk about it when faced with helpful suggestions that I'd feel better if I went for a little bike-ride, and then I explain the reality of things every so gently, like @boolybooly does. Most people are genuinely trying to help, and if I didn't know about ME/CFS, maybe I'd be coming out with similar stuff, all with the best of intentions.
I did for a few years after onset because I wanted family/friends to understand and then stopped after realizing no one was interested. The funny thing is that complete strangers were more interested about my well being
