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

[MeSci]

Females were found to develop significantly more 92 associated symptoms

?

 

[MeSci]

Richman and Jason (2001) argued that the failures of the medical community to identify biological markers for ME/CFS has been used to reinforce social ideas that link female gender to psychiatric explanations of illness.

Important to remember that it is the scientific community whose job it is to find biomarkers. The medical community will then have something to use. And one reason the scientific community hasn't found definite biomarkers yet is lack of funding, and the monolopolisation of funding by the psychoquacks.

EDIT

otherwise good

 

[alex3619]

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.

Yes, though I tend to think of this the other way around. People are less forgiving and less generous in hard financial times. Others take advantage of that too, preying on fear and using misdirection such as scapegoating.

 

[MeSci]

Both health professionals and laypersons tend to view illnesses in a dualistic manner, namely that the source of the disorder is either physiological or psychological (Chalder, 2005).

and when did Chalder make these training videos?

 

[MeSci]

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.

So sad, but so true.

When will they ever learn...

 

[JaimeS]

?

Page number, sorry.

 

[JaimeS]

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.

Bachelor's and master's in science, the latter in a medical discipline - if anything, it caused my original GP to adopt a knowing look, as if he'd 'pegged' me: a female who's read a lot and thinks that somehow this raises her to the level of his expertise - which would be, of course, impossible.

It's not a 'logical' bias, if there can be said to be such a thing. I have now studied this illness in depth for over a year; it's unlikely any physician who is not a specialist could say the same. At this point, I am more informed than the average physician, within this tiny niche; but it makes very little difference. If anything, I lose points for my knowledge because I'm not playing into the helpless female role to induce enough interest from the physician.

I'll never forget when my pragmatic feminist of an older sister advised me to "cry, but just a little" during an upcoming important doctor's appointment. "It's how they know you're serious," she said. "And be sure not to act as though you know what you're talking about." She held up a hand. "I know you do, but you have to play it a little helpless, a little clueless, or you'll put them off."

It's a mad world.

-J

 

[JaimeS]

State shame??

I read this as shame imposed by societal views.

-J

 

[Kyla]

State shame??

I read this as shame imposed by societal views.

-J

"State" of shame vs. "trait" of shame. Ie - it is induced by circumstances rather than being an innate attribute.

 

[JaimeS]

"State" of shame vs. "trait" of shame. Ie - it is induced by circumstances rather than being an innate attribute.

Although debilitating effects of experiencing shame are posited in several theories of emotion and motivation, little research has been conducted on individuals' "in-the-moment" feelings of shame (i.e., state shame).

Uhhh, we may both have been incorrect! (Feeling a slight amount of 'state shame' at the moment!)

[Edit: LOL, or you are correct, actually - just viewed from a slightly different perspective. "In the moment" vs "intrinsic" still does make sense. ]

-J

J Psychol. 2014 Sep-Oct;148(5):577-601.
Researching state shame with the Experiential Shame Scale.
Turner JE.

 

[Kyla]

Uhhh, we may both have been incorrect! (Feeling a slight amount of 'state shame' at the moment!)

[Edit: LOL, or you are correct, actually - just viewed from a slightly different perspective. "In the moment" vs "intrinsic" still does make sense. ]

-J

J Psychol. 2014 Sep-Oct;148(5):577-601.
Researching state shame with the Experiential Shame Scale.
Turner JE.

Traits vs. States

Unlike traits, which are stable characteristics, states are temporary behaviors or feelings that depend on a person’s situation and motives at a particular time. The difference between traits and states is analogous to the difference between climate and weather. Los Angeles has a warm climate, but on some days it may have cool weather. In the same way, a person who has the trait of calmness may experience a state of anxiety on a day when he or she faces a difficult challenge.

 

[Sean]

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.

'Twas always thus. Nothing new here, sadly.

 

[SOC]

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

I've got bachelor's and master's degrees in engineering and they still treat me like I'm stupid and irrational. So apparently intelligence, calm, and education (even in a predominantly male field) are no proof against the assumption that one is a "hysterical female."

 

[MeSci]

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

My Master's degree (in medical science) seems to help with my current doctor, but most previous doctors have still treated me as an idiot. One even wrote in my notes "Is studying human biology!" or similar. (The exclamation mark was his, presumably indicating amusement.)

 

[MeSci]

Page number, sorry.

Oh, I see. Quite apart from grammatical weirdness, I thought that 92 symptoms was a lot, but if any illness can have that many, ME can!

 

[MeSci]

I'll never forget when my pragmatic feminist of an older sister advised me to "cry, but just a little" during an upcoming important doctor's appointment.

That may help with some doctors, but have the opposite effect with others. During bouts of depression/distress, I have cried twice during appointments. The first time, the doctor walked out, and didn't come back. The second time, the doctor (a different one) actually teared up with empathy. But even that second one lost his empathy when I turned into a CFS patient.

 

[JaimeS]

My Master's degree (in medical science) seems to help with my current doctor, but most previous doctors have still treated me as an idiot. One even wrote in my notes "Is studying human biology!" or similar. (The exclamation mark was his, presumably indicating amusement.)

Ugh, that's exactly what I'm talking about. Like, "wow, I understand now; she thinks she's informed. That's darling."

And me:

 

[JaimeS]

That may help with some doctors, but have the opposite effect with others. During bouts of depression/distress, I have cried twice during appointments. The first time, the doctor walked out, and didn't come back. The second time, the doctor (a different one) actually teared up with empathy. But even that second one lost his empathy when I turned into a CFS patient.

Agreed. I absolutely sobbed during my autonomic panel, out of a combination of emotional distress and feeling physically horrible, added to the helplessness of being strapped in place and unable to 'fix' my situation myself by sitting/lying down/putting my head between my knees. Two other times I've cried in appointments. Just as you say, it made one doctor look empathetic, and the other practically roll his eyes. Either way, I think you lose something if you show yourself to be distressed, never mind how natural that may be / feel. Yet if you act dismissive and bored, you can't possibly be ill. This PhD thesis has some qualitative data to support that this is the case.

I've settled on dismissive and bored, anyway, as an accurate reflection of how I currently feel in the typical physician's office. And as weird as it sounds, I refuse to tell my 'illness story' anymore, either. I've told my most recent GP, "you can ask me questions, but there's not much use in throwing everything at you at once. It's too confusing."

I get an irritable look, and usually a work-around: "why don't you tell me your worst symptoms in order of severity." Again, it's the patient that's doing all the work, presenting a bulleted list for the physician, rather than having a conversation. Very done with that.

-J

 

[MeSci]

I get an irritable look, and usually a work-around: "why don't you tell me your worst symptoms in order of severity." Again, it's the patient that's doing all the work, presenting a bulleted list for the physician, rather than having a conversation. Very done with that.

-J

I seem to have hit on the right formula for keeping my current doctor sweet.

1. Don't mention ME AT ALL if at all possible.
2. Be friendly and polite.
3. Keep the conversation like one with someone of similar intelligence and knowledge.
4. Be alternately lighthearted and serious, like a normal conversation.
5. Show appreciation and understanding for what the doc says and does.

He responds well to all that, and actually asks me if I am willing to try this or that instead of just telling me or just changing or stopping something without warning/consultation, as others have done.

For example, during an annual medication review (which he is happy to do over the phone and accept my own blood pressure readings), he asked me if I was willing to consider a different medication, and I wrote down the name and said I would do some reading-up and get back to him if I wanted to try it. He was concerned about the cost of the one I am on (and it's the NHS so they do have to budget), so I showed understanding and willingness to compromise. We eventually agreed that I would have a larger dose of my current one prescribed and cut the tablets in half, which works out a lot cheaper.

I wish he was willing to take the ME on board, but there is not much I am interested in trying for it, and I don't want to risk messing up the good relationship, having been through so many bad doctors before finding him. I would just like him to understand ME's effects on things like fluid and electrolyte balance and the heart. So it means I am very hesitant to mention any worries about my heart, as not knowing about ME means that he might over-react and start insisting I take nasty drugs for it, or have other treatment I don't want.

 

[JaimeS]

1. Don't mention ME AT ALL if at all possible.

My mom, who has "Epstein-Barr Syndrome" lives by this. She simply doesn't mention her most major health concern.

I know it's practical, but it does burn my biscuits!

-J