Impact of social support on the relationship between illness invalidation and shame among individual

[valentinelynx]

This thesis has a beautiful intro too.

By the way, @Elizabeth Kendrick made a few posts on this forum a few years back and some of us were a bit skeptical, to say the least:
http://forums.phoenixrising.me/index.php?threads/interactions-with-medical-professionals.20199/

I'm glad that she wasn't dissuaded from completing her study.

I remember that discussion. Glad we were wrong.

 

[Valentijn]

I remember that discussion. Glad we were wrong.

In the final paper she was clearly talking about ME/CFS, and didn't mention chronic fatigue except as a symptom. So I'm extremely glad to see that she learned something from that thread which definitely improved the paper

 

[valentinelynx]

In the final paper she was clearly talking about ME/CFS, and didn't mention chronic fatigue except as a symptom. So I'm extremely glad to see that she learned something from that thread which definitely improved the paper

Good point!

 

[Chrisb]

:thumbdown:

W-what. What. What.



What. What.

Early is when you might be able to stem the tide. I think this is going to be quoted in a deposition someday.

One can only hope.

I seem to think that in "The Prince" Machiavelli wrote metaphorically to the effect that in the early stages illness was difficult to diagnose but easy to treat; and in the later stages easy to diagnose but difficult to treat.

I had thought the Wessely school was merely 50 to 100 years behind the times. Perhaps 500 years is a better estimate.

 

[alex3619]

I had thought the Wessely school was merely 50 to 100 years behind the times. Perhaps 500 years is a better estimate.

Sadly the poor methodology used in psychogenic research was almost the norm prior to maybe 1940, and its all about validating and not testing a point of view. Its since died out in science for the most part. What is left, those disciplines still using the old ways, are arguably not science.

The problem is not that they are not scientific. Lots of good academic research is not science. The problem is they cloak it in the mantle of science, call it evidence based, and then use unscientific methods to promote and defend it.

 

[Chrisb]

This Thesis ought to be compulsory reading for all medical students, probably in the vacation before they start the course.

 

[A.B.]

I had thought the Wessely school was merely 50 to 100 years behind the times. Perhaps 500 years is a better estimate.

In the middle ages, the catholic church stated that the ill were sick because they were sinners.

So Wessely is arguably more like 1000 years behind.

 

[alex3619]

In the middle ages, the catholic church stated that the ill were sick because they were sinners.

So Wessely is arguably more like 1000 years behind.

In ancient times it was evil spirits, later it was demons, witches and curses (remember the Spanish Inquisition and the Hammer of Witches). More recently the evil of man came back into vogue.

Right now there is a social and political move to blame the poor, the sick, and those who are politically weak, for many ills of society, and that includes actually being sick. Its the politics of negative. Pick a scapegoat. Blame them. Otherwise ignore the real problems. Its the political and social issue of seizing power by stuffing problems under the rug and hoping nobody notices, while pointing at everyone else. Left or right wing politics does not alter this either.

This is of course tied into other politics of oppression. A different skin colour, social class, religion, language, culture, female, etc ... obviously inferior! I once read this described in terms of groups. You demonize what is called an outgroup so you can bolster power in the ingroup. Indeed you can create a group this way. Quoting a line from a computer game I am playing "You and me, we are the only two around here who are not complete fools!".

The four things that counter this, though historically not very well, include facts, reason and compassion. The big thing historically occurs after things get so bad there is massive social change, often with war, and everyone says "never again". Then we forget. "Lest we forget" doesn't seem to matter to later generations.

 

[Forbin]

A valuable question that might be raised pertains to whether a link exists between the gendered nature
of ME/CFS and its association with illness invalidation.

If it's any consolation, my personal experience suggests that the warranty on male exemption from illness invalidation expires at about 6 weeks. After a month and a half, I was getting progressively worse when I heard the six most unhelpful words in medicine, "Maybe it's all in your head."

At that point, my doctor suffered "confidence invalidation" from his patient and I found a new physician..

 

[alex3619]

If it's any consolation, my personal experience suggests that the warranty on male exemption from illness invalidation expires at about 6 weeks. After a month and a half, I was getting progressively worse when I heard the six most unhelpful words in medicine, "Maybe it's all in your head."

I have read it discussed that males might more often get more acceptable diagnoses, as if diagnostic criteria were a matter of preference and prejudice. I have also read denigrating comments about males with CFS. Males with a "women's disease" face a slightly different prejudice in my opinion, but its similar enough that we can relate to what women with CFS go through.

In my experience I think I have been treated better than most women with CFS, at least much of the time. Though it is also an issue that having two bachelor degrees changes the way people look at me. This is about social status and how it changes views, as if a disease cares about such things.

The expert on women's issues and CFS or ME is Angela Kennedy, who also wrote a book that discusses related matters. http://www.amazon.com/Authors-our-own-misfortune-explanations/dp/1479253952

 

[beaker]

I've only skimmed, it seems to deal w/ experiences/validation w medical docs and not family, media, society in general. I think that would be an interesting inclusion. I've been lucky w/ MDs ( w/ a few notable exceptions ) but family, and portrayal in media, and some friends responses have been harder for me.
anyone else feel this way ?

 

[Valentijn]

Though it is also an issue that having two bachelor degrees changes the way people look at me.

I've got a bachelor's degree and a doctorate - doesn't help

 

[Forbin]

I have read it discussed that males might more often get more acceptable diagnoses, as if diagnostic criteria were a matter of preference and prejudice. I have also read denigrating comments about males with CFS. Males with a "women's disease" face a slightly different prejudice in my opinion, but its similar enough that we can relate to what women with CFS go through.

In my case, I got this form of "illness invalidation" several years before they even came up with "CFS" and labeled it a "woman's disease" (in the U.S., M.E. was all but unknown at the time).

It was simply a matter of my doctor not knowing what I had, so, therefore, I had nothing.

I think you're right, though, that I might have been treated a bit differently if I had been an "established" adult male. The ink on my degree was barely dry when I was hit with M.E., so I was more easily dismissed due to my youth. Thus, I think that not only gender but also age is a disadvantage in such a circumstance, regardless of your education. Still, I suspect that even some doctors who have come down with M.E. have been told that "it's all in their head."

 

[alex3619]

I've got a bachelor's degree and a doctorate - doesn't help

Sorry. Sigh. It depends on who I am dealing with. It seems to help with government types.

 

[alex3619]

Still, I suspect that even some doctors who have come down with M.E. have been told that "it's all in their head."

I think this is why so many sick doctors stay silent.

 

[Sean]

At that point, my doctor suffered "confidence invalidation" from his patient and I found a new physician.

 

[waiting]

I've only skimmed, it seems to deal w/ experiences/validation w medical docs and not family, media, society in general. I think that would be an interesting inclusion. I've been lucky w/ MDs ( w/ a few notable exceptions ) but family, and portrayal in media, and some friends responses have been harder for me.
anyone else feel this way ?

Good point -- I agree inclusion of family, friends, general public and the media would have been interesting -- maybe in another book someday.

I think the disparagement from all of the above damages patients in a myriad of ways. When it's doctors, it's poor medical care & financial security (insurance).

When it's from family & friends, it's emotionally painful that people who know us well disbelieve us.

When it's the media & the public, it's humiliating.

And all of the groups perpetuate the falsehoods between each other. MD's are members of the public listening to media as well.

All of it translates to little research interest, little research funding, little government interest to intervene.

 

[MeSci]

In research involving a large sample of adults (N = 915), half of the participants
reported experiencing at least one interaction with a medical doctor in which they felt
ashamed, with shame- provoking situations including those in which a physician
engaged in illness invalidation of their health complaints (Harris & Darby, 2009).
Wow, only half?

I'm not surprised. Some people will internalise someone else's blame towards them, others will be more sure of themselves and reject that blame - with anger. I am in the latter category. Not sure of myself in every sense, but when it comes to my illness, I soon (well - after a few years) came to understand that it was real. Still had a scintilla of doubt that I might be causing it to some extent, but as time went on it became increasingly obvious that I wasn't.

The only type of shame I have experienced with a doctor is embarrassment over intimate and/or messy stuff!

 

[Snowdrop]

The four things that counter this, though historically not very well, include facts, reason and compassion. The big thing historically occurs after things get so bad there is massive social change, often with war, and everyone says "never again". Then we forget. "Lest we forget" doesn't seem to matter to later generations.

And sometimes economic abundance. People can be more forgiving if they think that their financial security is not threatened by helping the poor fools who get sick.

I've been lucky w/ MDs ( w/ a few notable exceptions ) but family, and portrayal in media, and some friends responses have been harder for me.
anyone else feel this way ?

It is better if you have people who believe you. Because this illness sucks this much it's still a problem that they can't really understand your inability to function. And I try to a large extent to keep my children out of it. I do says things periodically and share news etc but I don't want them as young adults to feel that they are the adult caring for me. I had that role as a child. It really is hard to 'see' lack of functioning.

And as far as friends; for me I've been blessed to know lovely people. But I've also been forced to move a lot so those friendships can't sustain long distance and my ill health and the people who are close have asked what they can do to help but I am ill enough that I can't manage the 'training' if you can think of it that way. It's been me who's cut the ties and not because these friends were a drain in the sense that they were negative. I have personally real trouble thinking that I can't reciprocate and take equal part.

 

[MeSci]

Overall perceived social support (MOS Overall Support Index) evidenced a significant negative relationship with state shame

State shame??