Whats with the attitude of minimising others feelings and suffering?

[Tulip]

Todays, well ok this weeks bugbear for me is exactly this. Why do some people insist on minimising other peoples feelings, suffering, pain and in this case illness?. Is it because they grew up with cold parents and they lack empathy for others? They feel crap about themselves? Or what is it?. These types of people view grief as self pity and tell you to snap out of it.

Whats your theory? And how do you deal with this type of sociopathic attitude?.

 

[Esther12]

A few suggestions:

Hearing about others hardships makes people feel worse. They can then blame the person for making them feel worse.

Some people have a sense that we have a responsibility to talk down our own difficulties in order to avoid making others feel bad. They'll try to keep their own hardships hidden, and resent those who don't do likewise.

CFS is a rather meaningless diagnosis, and can lead people to assume we're all just whinging losers - making them rather unsympathetic to our complaints.

Some people do complain a lot, and it gets boring.

 

[Nielk]

Ignorance, ignorance, ignorance, ignorance, ignorance and more ignorance.
Because "normal" people know so little about our illness and because it is an "invisible" illness, people have -0- sympathy for us.
If you would tell them that your dog is sick, they would have more empathy because they can probably relate to that more.
That's why they say: do not judge others until you walked in their shoes.
I don't think that people are generally mean, I think they are ignorant and thoughtless.

this is why I never know how to answer people when they ask me how I'm feeling, because If I say well than they will think I'm just lazy because I don't do anything. If I say, I'm feeling very sick, I can see their brains churning and thinking "well, she doesn't look sick = she must be a hypochondriac). so either way, I lose. But, not to worry, this happens so seldom since I have "lost" all my friend and my neighbors see me about every three months so on the upside, I don't have to deal with that question that much anymore.

 

[Carrigon]

I have an old family friend who does this to me all the time. She will often say in a very disgusted voice, "That's right, no one has anything as bad as you. We are all in pain, but we ignore it." And she has many other crappy phrases she throws at me. This is a person who has never been sick a day in her life, just minor colds. She's never been in real pain. The only thing she has ever complained about is some kind of arthritis in her neck over the years. Most likely from her cushy desk job, where she never got off her butt for half her life. She's never had real problems. She just has zero clue. So I don't know if it's totally ignorance, but there's definitely a real lack of any feeling for anyone. Just no empathy or sympathy. And she can't imagine in her wildest dreams the level of severe pain and fatigue we go through.

I don't argue with her anymore, but I really hate ever speaking to her because she always says something horribly crappy to upset me.

 

[Esther12]

The only thing she has ever complained about is some kind of arthritis in her neck over the years. Most likely from her cushy desk job, where she never got off her butt for half her life.

See how easy it is!

 

[WillowJ]

why the Wessely school is sociopaths I don't know, can't answer

why everybody else has no understanding and no sympathy is very easy. Respected sources of info such as Mayo Clinic and CDC tell them to believe patients are symptom-focused, somatizing, and not seriously ill, yet behaving debilitated. A quick look at the literature (if they have time for this) only adds to the confusion. Yes, some interesting findings, but mostly in small, pilot-sized groups, and on the other hand a multiplicity of studies saying the same thing as Mayo and CDC.

it takes some digging to understand the definition confusion, which must be understood before you get the variation in studies thing. it also takes some digging to understand that funding for biomedical research into ME/CFS is, and has always been, negligible (thus the small samples in the otherwise interesting studies).

so you have these patients who, when assessed for disease pathologies that "normal" people (i.e. Lupus and diabetes patients) have, you come up with little meaningful information (no one has told them how to assess for ME or ME/CFS; indeed most think this is impossible--CDC certainly says it's impossible). and important respected sources tell you to believe that the patients exaggerate, somatize, and catastrophize, if not actually malinger. you are taught to believe that these people are wasting your valuable time, taking up resources which should be devoted to more deserving patients.

the media portrays a layman's version of this to the public, incessantly

what other response is expected? whiners deserve no sympathy, ever. those who wallow in self-pity (symptom-focusers) deserve no help.

the problem all goes back to Wessely school who originate and proliferate these myths, and the CDC and Mayo Clinic and NHS who participate in them, and the NIH and DHHS and other health authorities who stand back approving, and Congress and Parliaments and the WHO and heads of state who do nothing

 

[Tulip]

Yes I think it is ignorance but it seems to be something else as well. I have seen it done to people who have lost a baby to SIDS, someone that lost her husband and just recently a family with a child that had a very rare disease, people said his family didn't deserve the help they got from a tv show because there were others worse off! The poor kid died 2 weeks ago, only about 5 months after his family recieved the help.

The people who had lost a loved one especially the baby were told "it's not that bad", "it's only a baby" you'll have another one" etc. Now none of these people whinged or complained or anything unhealthy, they just grieved which is normal. But people got sick of it after about 6 weeks. Maybe it is because some people, not all can only deal with short term suffering? Or something that has a clearly defined ending?.

 

[Esther12]

This needs a mention: http://en.wikipedia.org/wiki/Just-world_hypothesis

 

[maddietod]

Esther, that hits it square on the head. I think people get anxious because they think they're getting mixed signals - we say we feel awful, but we look OK relative to their mental image of devastating illness. My ex-husband's mental picture of illness is his mother having cancer. Lots of attention from doctors, major drug intervention, cut the illness out, and bed rest eventually leading to being up and fine. As Willow says, there is no storyline in the culture/media explaining what our illness looks like.

Some family members are teachable, some are not. I've seen that my Mom didn't really 'get it' until I started showing my illness directly (my cfs is moderate). Instead of retreating to my bed, I said "I have to lie down right now" and I lay flat on the couch for 3 hours, absolutely still, and then I went to bed for the night. The next morning she assumed less and asked more, about what I felt I could do. I had been describing my 'reality' for days, to no avail; she had to "see" it.

 

[MEG]

Most interesting discussion. I initially was given an "Atypical MS" diagnosis...that brought all sorts of sympathy, empathy, and "oh my gosh, how can I help you's" Ha! Then I got my CFS diagnosis from Hunter Hopkins in 2009. I had been homebound/mostly bedbound for 6 years....my Primary Care physician had determined I had Fibro. But really bad Fibro, as she would say. Now back to the CFS thing...friends and even my kids think I should just "snap out" of this. (this CFS thing) My oh my...if they only knew how I would like that to happen. It is hurtful...but as so many of us know, the NAME is what is killing us....this really stupid name, so nondescript, so minimising. I really wish someone would give this illness a deserving name. I will take time, and someday people who want to will understand. In the meantime "That's OK"....I am what I am....those friends who dismiss my illness are mostly gone. That's a good thing. And family...well, I just love them and understand that when my own mom was ill, I was in denial for a long, long time. Wasn't able to face that I was going to lose her...yes, some of what we experience is people's denial...maybe because they love us so much....maybe that's it....

 

[MEG]

Love the Wikipedia explanation....we all should take a look....thanks Ester12

 

[WillowJ]

This needs a mention: http://en.wikipedia.org/wiki/Just-world_hypothesis

that is a good theory, has explanatory power... thanks

 

[richvank]

that is a good theory, has explanatory power... thanks

I agree. It reminds me of the actions of Job's "friends" in the Old Testament book of Job. They spent hours and hours arguing that he must have done something terrible to have brought all the woes he was suffering upon himself, which was not true.

Rich

 

[Carrigon]

Yes, unfortunately, bad things happen to good people who do not deserve it all the time.

I saw an interesting saying on the net. It went something like, "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." I thought it kind of fit us. No matter how bad it is, we still have to find a way to have some kind of life, I guess.

 

[Carrigon]

Mini rant. I had someone on the net tell me that my SS is charity, and since I'm well enough to type, I should get off my butt and work. UGH! It was a shallow, empty person, the kind who has never been sick or anything. Just no clue at all. And he made a comment that he's poor and basically resents or is jealous of all of us who get disability payments. And I was like, all over him about how much we suffer and we didn't choose this and it's horrible, and most of us don't get much money in, we are not rich or comfy. And I finally ended it with, maybe one day, you too, will be gifted with a disability. Just.......UGH!

 

[voner]

To all thanks for the comments - I find this an interesting subject. The "just world hypothesis", certainly explains some of the minimization behavior it certainly is an interesting theory and I enjoyed learning about it.

There must be some other factors involved also. I know a woman who takes action to help out anybody in "real" need, but has made statements about me that indicate complete denial of this disease. I think part of it also is -- they have to see it to believe it, and at least in my case be postexertional malaise part is the most confusing to others. I'm well enough that there are certain days when I will do some physical activity or participate in some social activity that I am sure will cause postexertional malaise, and it does -- but they only see me participating in the activity and so then others think, well I saw him do this activity -- he must be okay etc. " they never see the malaise part

Hopefully this makes some sense to you guys. Hell -- a lot of times I have a hard time predicting the severity of the postexertional malaise. Sometimes I get away with an activity that 95% of the time would crash me for a week or two or three or whatever. Of course I push things more than most.

Hope this adds something to the discussion .

 

[Carrigon]

I used to go through that so much with my mother. If I made dinner one night, she'd be like, why can't you do it every night. Or if I was able to do one thing, it was always, why can't you do a few more on top. She just never got it that just because I had temporary energy to do something once, that doesn't mean I will have it again for a very long time.

 

[taniaaust1]

Todays, well ok this weeks bugbear for me is exactly this. Why do some people insist on minimising other peoples feelings, suffering, pain and in this case illness?. Is it because they grew up with cold parents and they lack empathy for others? They feel crap about themselves? Or what is it?. These types of people view grief as self pity and tell you to snap out of it.

Whats your theory? And how do you deal with this type of sociopathic attitude?.

I dont think it all simply comes down to just one answer for all, as people are reacting out of various different views of things.

Ive had one of the kindest people in my town treat me like crap due to her not believing in ME/CFS. Her treatment of me is all due to what I believe a doctor friend of hers told her about it. She truely believes I could just snap out of it.
I put her reaction and the reaction of many others due to the false understanding people have of it. We can blame Wessley school for a lot of that.

Others find ill people scary was it makes them feel vulerable themselves, others sicknesses show we arent invincible... those people arent very compassionative to not just us but would act similarly discompassionative towards those with other things too eg cancer patients. (cancer patients get people including previous friends trying to avoid them etc etc).

Others dont want to see the badness in this world and seem to think they can immune themselves from it by ignoring it or dismissing it... hence denial eg You can snap out of that.

So fears, disbelief, misunderstanding and more things are coming into the bad treatment of us.

Fortuantly "some" (but it still wont be smooth riding) of this will change when that day comes when the Wessley school beliefs are gone but it still will be tough at times with others even then as so many people will treat ones with long term illness not well cause they just dont understand/resonate to being sick long term themselves.

 

[Carrigon]

I think there's alot of general ignorance out there. That same place where the guy just told me we're all on charity and should work, someone else posted that she sees many "younger" people on disability who aren't sick and are just lazy and bilking the system. And I said to her, how do you know they aren't sick? And she was like, I just know. And I said, no you don't. And I went into the whole speech about how there are tons of invisible diseases out there where you cannot tell if someone is sick. And she still insisted that everyone is lazy and bilking the system. Some people are just plain ignorant, or they just plain want to believe whatever they want to believe and that's it. There's just no educating them or anything. Unless they experience it for themselves, they just don't want to believe it.

 

[alex3619]

Hi, I have a saying I am starting to use when talking to people like this: "Your prejudice and ignorance are obvious."

I think most of it is ignorance, or secondary to ignorance. The work ethic that underlies western civilization is in direct conflict with what they see as chronic fatigue. Fatigue is not an excuse in common thought, just get over it. Chronic fatigue therefore just means you have work a little harder to get over it - wake up! If you don't do so, you are by definition a malingerer.

They have no idea on the severity of disease. Something I have started saying lately is that in three studies on morbidity rankings that I have read, CFS is listed as either the most disabling disease (two studies) or the third most disabling disease. In the study that said it was the third most disabling, the two more disabling disease include prostate cancer and some other cancer I don't recall. That study was published in 2000 or so, I don't recall any details. However, the outcome is this: according to these morbidity ranking studies, CFS is the most disabling disease that is not imminently fatal. Most people do not know any of this. It is in many cases because they think CFS is just fatigue.

As for the just world hypothesis, I believe the universe is inherently unjust and uncaring: we create justice and care from human effort. It is something we bring to the universe - but we don't seem to be that good at either. People who believe in Universal Justice as a matter of course will inevitably have major problems coping with reality.

Bye
Alex