Just need to talk

[JayCS]

Hmmmm I'm not sure morally we are owed that. I did use the word fairly but I think the word reasonably might be better...

OK, let's concentrate on 'reasonably', that's the other one I was thinking you might mean.
But again: what does the word mean to you? Reason can mean scientific evidence based probability, but is actually used as a judgement: Someone being 'unreasonable' or 'reasonable' is making a wrong judgement in our eyes, so we are judging them compared to their opinion, and I often don't see that too evidence based...

It's true. Expecting less prevents disappointment but it also bears some negatives as well.

Yeah, so I don't expect, but don't passively accept, but actively try to work on improving what I feel could be, and own to what I feel is good.

Now that's a surprise to me! I can't see myself not believing a neighbor who said they were in pain unless there was a reason like character faults.

Well, I "know" it, but I can't say I "feel" it, it's not as real as things I can see, their pain isn't, and my own isn't.
Even if I can see someone obviously in pain, there's one part of me saying it hurts me and/or nauseous to see this, but that's my own pain, and there is secondly an empathy part saying poor them, they "must be" suffering, but there's also thirdly a big part saying: But I can't see the pain, I can 'only' see the contortions, the blood etc.
So what I'm trying to say is that whilst I do fully accept it with my brain when someone tells me and behaves as if they are in pain it doesn't hit into my emotional system by far as much as my brain accepts it. So yes I do "believe" it, to all intents and purposes, but there is an emotional part is in doubt and sometimes even a kind of distrust. And if "even I" "can't" fully take the pain of another person in, how much less may that be the case for someone with less empathy than myself?
Additionally, there are experiences which make my "appreciation" of others' pain even a bit harder.
Ever seen a soccer player fall over in total agony, and once the decision's been made if it's a foul or not, jumping up and running without any problems? Now I do often have such total agony which is suddenly gone again enough to blend over it by continuing doing something. And I do gasp or shout as said in the other thread, and my wife believes me I've really hurt myself bad. But I haven't. It was a sharp shock, but a very short one, nothing to worry about. (And even if there is quite an after pang, I don't "believe" it much myself.) Now that player seems to be overdramatizing, praps reasonably so, so the referee pays attention amongst all the fray of the match and makes a fair decision. But the overdramatizing remains a big impression in my brain that people do overdramatize. Which reminds me of recent studies about the difference in female and male fibro pain saying that females tend to catastrophize. Are those studies fair or not in their judgement? I think I tried to look into it, but couldn't find their criteria. But I do know my wife castrophizes my pain, and I believe I don't at all. Meaning I "take it as it is", or even "don't take it in", I "let it go", whilst my wife "takes it in" much more than I do myself. She seems to "believe" me more than I believe myself? Or more than my pain actually is. I then have the problem that she cares so much, but doesn't believe that I don't have much pain or suffering, doesn't believe that I'm happy. Cos she's in her mindset.
Which points to the problem that it's not just about if there is pain or not, but also about the amount of pain.
pretense.
From the way I move she infers that I am in pain, whilst I am moving in that way to not have pain, so she says I'm in pain, I say I'm not.
Ever walked with crutches or a walking stick as a young person? If we lean on them a lot, then it can hurt more, and we increase our wonky body position. Also we may use them 'just in case', to stabilize in certain situations, make sure we're safe even if we buckle, or prevent that from happening. But I've several times heard (broken femur as a youth) onlookers doubting my use of the crutches, so I get the feeling I have to pretend I need them more than I actually do. I've had that with fibro a few times too: When I was still at work walking where lots of people can see me I sometimes felt the need to walk slower not cos I needed to, cos I had the feeling if I don't, they'll understand even less that I am "severely ill" or whatever. I usually don't act upon this impulse, because I hate lying, but sometimes "lying" is more truthful than the actually very complicated truth, so I don't bash myself for sometimes doing it.
Another problem is our conditions aren't just pain at all, it's about believing all our symptoms. They are so hard to describe, to distinguish, even pinpoint what they exactly are. My pain is now probably the least of my symptoms. Or even "worse": my local pains are under control, it's my Ache that isn't. But even here I have to explain that my Ache is so severe that it actually is a pain. And that's just one example where I've had to "explain" / "defend" myself here. And when people doubt, I also start doubting and question and re-check and then have to decide what the heck is it? One of my worst symptoms is excruciating unrest in my lower back that makes me mad if I forget to keep it under control (incl. with cold showering). I don't understand it, there's no doc explanation for it, it's very hard to "believe" even when I'm in it and feel like pushing a red hot rod up my spine so that I only have pain (or die), again unbelievable.
Are these exceptions? To me they used to make up a great deal of my day whilst getting used to this strange condition. And even now I'm in a conscious effort to believe and relieve my symptoms a lot of the time.

(Sociopaths do have some empathy and have the capacity to develop and express more empathy as do autistic people.) I feel like we would find it easier to examine the issue outside of the outliers.

I just glanced at the outliers to remind us of the various grades of empathy. There might be many with "even" less empathy than myself. For that point I think we don't need to go into the semantics of how much exactly people with autistic or sociopathic traits have empathy. But from my knowledge from reading and people I know I'd simply say it seems to be usually reduced and varies.

Well, maybe it depends on which nature we are acting out of? I say this to my brother <wink wink>

Yeah, it does, but doesn't seem too relevant here(?) I'll think about it.

This does not mean you are incapable of believing yourself, does it? It sort of seems this is an acquired habit. A child does not usually distrust it's feelings of pain, hunger, etc. You, along the way, may have elected to distrust yourself?

Well, I think neglect leading to self-neglect is/was probably more like it than deliberately to elect it.
But whether acquired or not, whether capable or not, what I'm getting at is that I've heard that I'm not the only one that disbelieves his own pain. Praps the examples above can help you believe my disbelief.

As for wishes: I wish they did understand more for a myriad of reasons, mainly selfish ones but some not.

Oh, wishing, yes, rather than expecting...!

Well, clearly we like you gabbling I do feel like this confession has reopened the door for me to invite your personal attention to others' posts . Your fault

I plead guilty....

herein we venture away from attitude to physical ability. My focus being on attitude...

Ah, that would now be a big difference to me. And maybe sunkacola also means "physical" ability. But not only. As said, if belief doesn't come easy to myself, how much harder may it come to someone with less empathy. And empathy is my focus, so maybe "emotional ability"?

Yeah, not expecting anyone to understand what they are. I do think it's reasonable for someone to believe what I'm saying instead of a lie like I'm lazy or I'm faking something. They can choose to believe one side or the other. If I haven't disqualified my word, it is socially harmful when someone chooses to believe an explanation with no known basis in the instant situation.
Yes, I do believe you Jay! Why wouldn't I? And I believe everyone here that drops in to say how bad their day was or how fibro symptoms affected them. I feel like when we all chat we are implicitly extending trust and good faith to one another and that it's a necessary action for good communication. It's simple to me and reasonable to expect someone to believe you.
Is it because people have disappointed us by not believing us that we make excuses for that behavior? Or is it because we see ourselves struggle to believe people that we make excuses for our behavior? I don't know. I just think we can have reasonable expectations of people (and should) and that this expectation of mine is reasonable.

Hmm, what sunkacola has now detailed is also what I mean. It may be reasonable, normal etc., but I can easily imagine how exceptions can come about, so I don't expect it, because that expectation is no use to me, doesn't do anything for me, and doesn't fit to my belief system either....

 

[JayCS]

If you are lucky.

That sounds as if your experience is really bad in that respect?

It'd interest me how great a portion of people we feel believe vs. disbelieve our symptoms.
I spose I'm at the extreme end of 95%+ of people I talk to seeming to believe 95%+ of what I say about them. Whilst they I guess may actually "comprehend" about 50% at most, depending on their life experience. But all of them, whether they know me or are a chance first time acquaintance on the street, seem to take what I say as its face value, no one has ever expressed any direct doubt that I can remember, not even docs.
(If they have too high expectations of what I am able to do, it's because they forget or don't know the details that well. Like someone the other day, a believing person in all senses, asked regarding some voluntary work I've ... volunteered for, if I can take part in meetings at 7:30. Where I wondered how after several long talks she didn't realize that that is absolutely impossible. So I didn't feel "believed", but that was an unfair expectation on my part.)

So now I'd be interested, like a poll, if I say 95-100% belief, what proportion is it in your experiences, all of you? And also: How come?!

 

[JayCS]

And then we could also go into more semantics which would be what is empathy? Does one have to feel it or does one have to express it or…? I think I’m looking at empathy as expressing it, not feeling it…

Good thought. Yes, I've now attempted to distinguish these two. Still not sure if you believe my disbelief

 

[cookiebaker]

Does one have to feel it or does one have to express it or…? I think I’m looking at empathy as expressing it, not feeling it…

ah, semantics.. yeah.. not for me, thanks..

I, personally, dont think you can show empathy if you dont feel it..

Oxford dictionary definition: "empathy (noun) - the ability to understand and share the feelings of another."

just my nickles worth.

 

[sunkacola]

ah, semantics.. yeah.. not for me, thanks..

I, personally, dont think you can show empathy if you dont feel it..

Oxford dictionary definition: "empathy (noun) - the ability to understand and share the feelings of another."

just my nickles worth.

Actors show all kinds of things that they don't really feel, and are very convincing with it. A person can act as if they feel any way, whether or not they actually feel it. Some people would be able to tell it wasn't genuine, certainly. But not everyone.

 

[cookiebaker]

Actors show all kinds of things that they don't really feel, and are very convincing with it. A person can act as if they feel any way, whether or not they actually feel it. Some people would be able to tell it wasn't genuine, certainly. But not everyone.

and acting is not genuine.. it is just that.. acting.

i was referring to genuine empathy... but, semantics, i guess...
I am out of this discussion.

 

[sunkacola]

That sounds as if your experience is really bad in that respect?

Some, yes, but others not. I was only saying that a person is lucky if everyone around them believes them about how fibromyalgia affects them. The number of posts we have from members that say that the people close to them don't understand or refuse to believe them would certainly indicate that it is a very common thing.

 

[sunkacola]

Oxford dictionary definition: "empathy (noun) - the ability to understand and share the feelings of another."

To share the feelings of another is not something everyone can do. Or can do in all circumstances.

I certainly can't do that with some people. I cannot, for example, feel any empathy for someone who abuses animals or children, and have no interest in even trying to feel that.

And, at some times, like when I am completely overwhelmed with my own problems and don't have the energy for anything else, I cannot find the emotional space to feel empathy for another even though normally I would. I know from experience that when a person is in sufficient pain, whether emotional or physical, they are often not capable of thinking of others.

Usually when the word "lack" is used it means none rather than some. As in, a person who is blind lacks the ability to see.
You can interpret it any way you choose, of course. And believe whatever you choose to believe about other people. After all, everyone does that to one degree or another, right?

We would like to have people show empathy for us by not expecting us to do things we cannot do because we have fibromyalgia.

Showing true empathy and compassion for other people includes not assuming that everyone is capable of the same things you are.

 

[sweetkamie20]

Good thought. Yes, I've now attempted to distinguish these two. Still not sure if you believe my disbelief

I absolutely do believe that you don’t always/often believe yourself. And you’ve done such a thorough job explaining it, too, that it’d strike me as an insult for someone to claim you are lying about disbelieving yourself!

 

[JayCS]

lying about disbelieving yourself!

Well again: it'd be unreasonable to make an outright claim I'm lying of course, considering how frantically I'm trying to make myself understood: but praps misjudging, misguided... finding it 'unbelievable'...

That is one of the points I'm trying to make: "Believing" or not can mean a whole variety of things.
So it's by far not as simple as it seems. So same goes for "not believing we are in pain".
It's harder to understand things we're not accustomed to. So people that don't know pain much may find it harder to know what it's like, will find it "harder to believe".... so while - as we are agreeing on - most will take it to be true, sunkacola and I are still trying to convey that some people will not be able to. And it is good for our feelings to expect that some people will not be able to, so we don't get thrown out of our tracks by it, which is how it comes across, it being a common topic on fibro forums.
Yes, it is reasonable to expect that most people will be able to, but I don't find it reasonable to expect that everyone will be able to, I find it self-destructive and pain-worsening to do so.

I'm actually observing myself on this now, my wife is crying several times a day, triggered by the news pictures about earthquakes in Turkey (where a relative was living...).
This observing doesn't make me 'heartless', it shows me where emotions of empathy, sympathy, pity, compassion, sadness and love etc. come up, why, how, what kind. Which interestingly takes me straight to the deepest part of the "acceptance and commitment therapy" ACT online course / study for people specifically with fibro that I took part in Nov/Dec, so is very much still on topic.
Even though I've worked on my emotions and read about them a lot, I'm seeing surprising differences between what I believed I feel to what I actually do feel. For instance seeing her crying face I looked to the side to take the brunt off the bodily reaction and then the only emotional feeling I had was love for her, no connection at all to what she was so sad about. Totally unexpected to me. I know I've been practicing distancing because my compassion used to be much too much for my own good - I used to get intense stress when I saw other people in stress or dead animals etc., that used to paralyze me, made me sick. I think this compassion was forgivable, but nothing like as 'good' as it sounds, because whilst it gave me a lot of will power to help others, but together with my anxiety made me a bit helpless, especially to help myself.

So coming back to the Oxford dictionary definition regarding empathy: I've kept my understanding, but learnt to curb my sharing of emotions. Extremely helpful to keep balanced and sane when the other person opposite is going "down the drain" in panic or sadness. The type we need to help in "emergencies".

Going back to "having empathy for pain", it's similarly necessary for doctors to understand but not share our pain too much, otherwise a surgeon could hardly work. But what does happen is that this necessity not to share too much can end up in reducing understanding. The neurosurgeon who honestly said he'd delight in getting my spinal tumor out made me laugh, and it helped me that he has absolutely no qualms at all what with him (not) feeling, sharing, believing my pain afterwards, that that doesn't influence and then perhaps deter him from doing the operation as perfectly as possible in that moment. He said that bit about pain is my decision, together with the other docs who see my pain and emotions in more of a balance. (And all of us hold against him: Don't let him operate, cos the pain afterwards will not be worth it!) And he felt like a man with little empathy, cold, but clever and brilliant. And that's how I recommend him: He'll do a brilliant job, but don't expect him to pat your hand and comfort you afterwards. Same 1 or 2 other surgeons I have been operated by in the past.... Now of course we could reasonably expect them to believe our pain, and we could wish they do. And we hope they do their best. But their best is not "enough", empathy wise. But it is for our own sanity better to expect that they perhaps don't (fully) "believe" our pain, whether they belong to those that are still able to help or whether they treat us badly.
To take this point to a max. and hold against, using the same words, but showing how they can also be understood:
It is better for us to "reasonably expect" that people may treat us badly, and one reason for this is likely that they don't comprehend our pain, and again one reason for this may be that they can't share it.
And to demonstrate how easy it is for this to happen, I've been trying to explain (and watch) my feelings, how even I find it hard to 1) "share" pain (empathy wise), as well as to 2) "believe" pain (comprehending wise), being an unsuspicious witness. You may be surprised that 95-100% seem to believe all of my pain - whether they share even half of it I doubt. I am surprised that more than 60% seem to believe it. Regardless of whether I am an unsuspicious witness or not. And that is a very pleasant surprise, which I'm glad to have. I wouldn't like it to be the other way round, and if it were, I would work at my expectations to make sure I "reasonably expect" much less.

But I also want to work at making everybody understand and share our pain as much as possible. And for this end it is very important to me to realize that some don't, and why, what exactly is stopping them from being able to, not just hard facts like mainly the invisibility, but also how intricate beliefs and empathy are.

 

[sunkacola]

sunkacola and I are still trying to convey that some people will not be able to. And it is good for our feelings to expect that some people will not be able to, so we don't get thrown out of our tracks by it, which is how it comes across, it being a common topic on fibro forums.
Yes, it is reasonable to expect that most people will be able to, but I don't find it reasonable to expect that everyone will be able to, I find it self-destructive and pain-worsening to do so.

Exactly.

And especially being people, ourselves, who are often expected to be able to do things or feel a certain way emotionally when we are not able to do so, and disbelieved when we say we cannot, it seems odd to me that any one of us with fibro would think that everyone is capable of any one certain thing: a feeling or a way of thinking, or a physical ability, or anything else.

I sure don't want anyone to assume I am capable of everything they are capable of, on any level.

This amounts to not having empathy for or belief in another person who doesn't have the same capabilities you do.

To say that every person is capable of believing something or understanding something or feeling something, and not to be willing to consider that not everyone is capable of the same things, is essentially the same thing as some other people not being willing to believe us when we talk about our pain.

This is exactly what non-fibro people sometimes do to us. Expect things of us and not believe that we are not capable.

And I agree that it is self-destructive and pain-causing for the person who cannot believe that not everyone is able to offer what they expect.

 

[fimi]

I think we are all aware that people can be just as different on an an emotional level as they are physically. And I agree that expecting others to feel in a certain way, to believe, trust and always show empathy when it is expected can be damaging.

However the problem is that some people are built that way. It's a huge part of who they are - for many, feelings are paramount. I for one have always been a sensitive, trusting person that believes people, who listens and gets extremly upset when people don't seem to react with as much empathy as I do. (and yes, I've been trodden on along the way - I get what you're saying here)

What I'm saying, is that while we are all different, for some, who wear their heart on their sleeve ( and there are a few on here that seem to do just that) it's a lot lot harder. And to say they shouldn't expect so much of people is (although trying to be helpful and stop the fall) in a way actually asking them to change who they are as a person - their personality and how life has shaped them.

Believe me, I've tried not to be as trusting and that dragged me down just as much, it wasn't who I am and it made me sad.
And yes I realise there are people people who do not have the ability to show as much empathy because that's how they are, that's their personality. But I also believe that people can learn to have more empathy, to listen and trust in people more.

Empathy isn't just something that has to be shown through words, or an outpouring of emotion (not everone is great with that stuff) it can be shown by doing the little things in life that show you care. Even a smile can mean the world.

 

[JayCS]

And to say they shouldn't expect so much of people is (although trying to be helpful and stop the fall) in a way actually asking them to change who they are as a person - their personality and how life has shaped them.

Brilliant, this is taking our discussion even deeper, thank you!! Making things clearer and clearer to me.

I agree that personality may to some extent curb our ability to curb our expectations.
And I fully agree not to expect from anyone to curb their expectations, nor to ask them to change that.
However I've also seen many people believe and say they can't change themselves at all and thus therapy for instance is impossible for them. This is something I don't judge. But it's not at all my experience that people can't change, I've seen too many people change for the better, including changing their expectations, which to me seems to be one of the most destructive of (?)"attitudes", and also one of the most easy to change.

It is of course something totally different from someone=you saying you are not able to change these expectations, have tried, to thinking of this as something that no one can change and no one should change.

As you've tried not to be as trusting and that was just as bad for you as keeping your expectations up, it first puts up the question which is worse, and if you say you want to remain a trusting person, then reducing expectations does seem to be worse. In that case I('d) work on the disappointment about expectations not being lived up to, i.e. to expect that someone will believe your/my pain, but try not to be too disappointed about it if they don't. Dangerous (I feel and experience) this becomes when people run against brick walls, like trying again and again to convince family members of their pain, because they "trust" and "believe" that they are able to convince them. I think it's a difference to hope and trust that people generally might be able to learn, and to hope that a specific person might be able to learn from someone, but it's a totally different set of beliefs to jump to the conclusion that I am the person that is going to definitely and now be able to, be the right person in the right context at the right time to do so. I'm not saying that you add this different set of beliefs to it, we haven't touched upon that yet, but it seems to me that expectations very often not only suggest and exaggerate what others are able to do, but in the wake of that also very quickly what I myself am able to do. (I would say most of my partners believed they are the best people to convince family members of certain 'fair', 'reasonable' things, yet completely unsuccessfully so - if at all most successful when they let go of this belief.) And that is where it gets to less noble expectations which can go into the direction that I am able to do "everything", rather than let it go and let someone else or a higher power do the job.
But whilst we're on to letting go of whether I can (and should) do that, praps in the wake of that it would be a fitting to let all these expectations go too. That is what I've been trying to get at above too: Expectations are something I have learnt to let go by giving them over to my Higher Power, which is in accordance to my belief system.

As to who I am, want to be and how I go about this: I do actually continue to show trust, "be" trusting, like you. 100%. I behave as if I do, although I expect some people not to believe me. As you know I tell people openly about myself, and I first "reckon" they believe me, because the chances in my environment are very high, but I'd also do it in an environment where they are not, e.g. a doc who doesn't look as if I can trust him, also even an environment like maybe all of yours, where I'd be regularly disappointed.
But without any expectations. Sounds contradictory? Maybe. I am sad when my trust is abused, when people don't believe me. But not because any expectations are disappointed. It's because I personally like to be believed and because it is fair to believe someone, and I am very much for fairness, I fight for fairness. Now I'm wondering whether some of you might say: But that's just what I mean with expectations... - well, partly, but there's big differences. Expectations are not just about emotional disappointment, they put up a moral framework. Now I need to come back to where we touched upon that, where is it, back a page, ah there, and my text is still there:

Hmmmm I'm not sure morally we are owed that. I did use the word fairly but I think the word reasonably might be better...

Hmm. Not sure now. There are more objective seeming and some subjective parts to this. @fimi has taken it to the more subjective level, "reasonably" can be understood both objectively (what are the chances) and ?subjectively (what might be sensible for a good society).
But I'm wondering if it's "morals" lurking in the background of both that make it hard to let go of the expectations: moral expectations towards others and towards ourselves. It's however nothing for me to decide if that's the case for you, just putting up the question to be taken up or ground down with further good ideas.

 

[sunkacola]

@JayCS I think I get what you are saying, and agree with you. One thing I know is that any sentient being can make a choice or decision to do something, but none of us actually have control over the outcome of that choice, decision, or effort.
So, a person can expect something of another or of themselves for that matter, can put effort into making that happen, but they will not be successful at it some of the time. Expecting it to be successful is not always going to make it so.

So, the way I approach things is that I allow myself to think that something is possible and that i can do it, and then i do my best to make that happen, but i don't actually have expectations of success to the degree that I won't be able to accept it if I am not successful. And this applies to the tenth degree when it comes to another being, whether that being is human or dog or horse or other. Because I, or you, are not in control of everything. I can hope, if i wish, and I can certainly try, but I won't ever assume success is a given, or even necessarily possible.

@fimi makes a good point, that just as some people are not able to feel the level of empathy or have the ability to trust or believe that other people may want to expect, so also it is true that if a person cannot help themselves from continuing to expect even in the face of disappointment, that may very well be just as much a facet of who they are. This is something I was not considering, so thank you fimi.

I also think Jay makes a good point in saying that people can change even if they think they cannot. Certainly I have seen that a great deal in my life. However, whether or not they can succeed in changing this or that specific thing is another matter. (see above, we can try to do something and not necessarily have success). I have certainly seen this is action as well. If something is a basic personality building block of a person or animal it is unlikely ever to change. The behavior around it can certainly change, but not necessarily the personality aspect itself.

 

[JayCS]

An example just jumped in my way, true story, ongoing process:

A is aging, slight senility slowly increasing, cause unclear, and physically visibly sickening too.
B doesn't see most of that, doesn't believe it, and definitely doesn't behave accordingly at all. Can't and also probably doesn't want to. In this case because "probably" mentally sick, no one will ever find out, and shows this by continuing with high expectations, not necessarily "dumb", but somehow yes, and pretty "bad".
A believes, trusts and expects that B is actually able to believe A, as that would be reasonable, morally ought to be, would be fair. And C want to help both and also does the same. C also trusts that both are fairly open about the demise of A, for the same reasons.
C is questioning more and more, cos nothing is changing and nothing is being done.
So C started thinking that it may be better to distrust both, to stop = let go all expectations of believing A and B will "see and believe" and that B will stop being bad to A. That opened up the possibility to act by checking, realizing that they both had been holding back information because they both didn't "believe" what was even visible to see, now being able to try to install everyday help and very pressing physical operations the docs have been recommending for a year, which might decrease both the physical and mental problems of A. With the possibility that both of these will yet be torpedoed by A and B still not believing what C and the docs are saying.
Denial is maybe the central word for all this...
The example is going beyond saying that trusting and believing people may be bad for ourselves, it's now saying it may be life-threatening for everyone concerned....
And also what C is seeing is that acceptance of what is is crucial for their own well-being but also to save a life. And acceptance is the letting go of expectations.

,And just talking we found other similar examples, I'm pretty sure each of you has several, now I've put it this way....