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

[JaimeS]

IMPACT OF SOCIAL SUPPORT ON THE RELATIONSHIP BETWEEN ILLNESS INVALIDATION AND SHAME AMONG INDIVIDUALS WITH MYALGIC ENCEPHALOMYELITIS/ CHRONIC FATIGUE SYNDROME

By Elizabeth Kendrick

Yup, someone did it... and as her doctoral thesis, no less!

 

[Denise]

Have you read it?

 

[JaimeS]

Anthropologists have noted that Western culture has shifted
toward new explanatory models of illness that are “blame focused” and that place
responsibility for disease processes and their outcomes upon the
patients themselves,
often ignoring the complexities of disease processes (Finerman & Bennett, 1995, p.1).

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?

Despite being a relatively well-educated sample, 43.7% of participants
indicated household incomes of $29,000 per year or less. Roughly half of participants (47.6%)
reported being without employment, and 45.9% indicated disability status.

...nearly one of ten of participants weren't diagnosed for 11 or more years after onset.

Race evidenced a significant negative relationship with the Lack of Understanding subscale of the I*3
(r = - .24, p  .01) , such that participants of color reported higher levels of illness invalidation

Am I wrong, or is this the first time that has been reported? Lovely.

The more recent the onset, the more acute the shame the participants were feeling. I guess you have time to get used to the fact that your culture does not always acknowledge your illness. Also, the lower the household income, the more the participants felt (were made to feel?) ashamed for their 'choice' of having ME/CFS.

This I had observed myself, but still find insane: the more terrible and severe the symptoms, the more they are discounted. I remember our conversation here about limiting how many symptoms you state you have and making sure the ones you choose to mention are serious but not so serious that they will be discounted:

An additional finding of this study was that symptom severity was significantly
and positively related to experiences of illness invalidation in the form of discounting.
These results may reflect trends found in other research, indicating that chronicity,
ambiguity, and invisibility of symptoms may be particularly related to illness
invalidation (Dickson, Knussen, & Flowers, 2007; Johnson & Johnson, 2006;
Kool, Middendorp, Boeije, & Geenen, 2009).

A shocker was, if your doc was male? There was a better chance of less illness invalidation. I wouldn't have guessed that would necessarily be true.

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. Mik-Meyer (2011) noted the gender biases in medical care as follows:
"In this case a man’s illness story appears normal whereas a woman’s illness story is an exotic mystery. The thinking seems to be that she might not, like ill men, have the pain she describes..."

I feel like we have Freud to blame for that.

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

As it should. Thank you, PR, for existing. Thank you, mods, for helping make it happen!

 

[JaimeS]

Have you read it?

Reading it now, Denise!

-J

 

[dancer]

I started skimming...I appreciated this quote:

Anthropologists have noted that Western culture has shifted
toward new explanatory models of illness that are “blame focused” and that place
responsibility for disease processes and their outcomes upon the
patients themselves,
often ignoring the complexities of disease processes (Finerman & Bennett, 1995, p.1).

Oh, I see you already posted that one (was writing this while you posted more)

 

[JaimeS]

I will say that the author's sliding scale of ability and disability is very poorly-done. Rather than have categories with descriptions, it's simply a scale from 0-100. I think it would have been more useful to specify what each level signified, though perhaps she had a rationale for letting people make up their own minds.

I missed this quote:

Gender differences were found to become more pronounced as definitions of fatigue became more stringent (Furberg et al., 2005) and as symptoms became more severe (Reyes et al., 2003). Females were found to develop significantly more 92 associated symptoms and at significantly younger ages than males (Furberg et al., 2005). Women were also found to score significantly higher on problems pertaining to memory, concentration, and information-processing than men (Jason et al.,2002).

-J

 

[JaimeS]

“It must be in your head." 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). Substantial research suggests that when medical explanations are not readily available, medical professionals may default to psychological explanations (e.g., Nettleton, 2006). Given the current lack of a fully understood medical model of ME/CFS, and given the current absence of biomarker assays, ME/CFS patients are sometimes diagnosed with a psychological explanation for their symptoms (Anderson et al., 2012)

 

[evatious]

People are [mostly] ableist. Almost all of them. Invisible illness and disability is the last bastion of [acceptable] unacknowledged bigotry... Some of my doctors are among the worst.

 

[Snowdrop]

People are [mostly] ableist. Almost all of them. Invisible illness and disability is the last bastion of [acceptable] unacknowledged bigotry... Some of my doctors are among the worst.

It's a really knee jerk reaction. People generally want to do better and achieve things. The media is constantly saturated with images of health and fitness and how to achieve it and the 'Just do it' attitude. I think it has a part in forming aggressively hostile opinions toward the disabled. Disabled people in fortunate/lucky circumstances get trotted out as if everyone can overcome anything with enough will.

I haven't read it in detail but it seems very positive.

 

[L'engle]

Thank you to the author of this study!

 

[Snow Leopard]

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.

 

[JaimeS]

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.

Me, too! Her paper is very empathetic and reasonable.

-J

 

[JaimeS]

I keep finding awesome quotes:

ME/CFS symptoms to psychosomatic sources is a form of victim blaming, in which
patients may be blamed for the lack of inadequate scientific knowledge of ME/CFS.
Horton-Salway (2002) described it as the construction of “a narrative associated with
low accountability for doctors and high accountability for patients” (p. 416). Given that
women are more likely to suffer from ME/CFS (Bierl et al., 2004; Furberg et al., 2005;
Jason et al., 2009), 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. Furthermore,
qualitative research has revealed that the psychological explanation for unexplained
illness symptoms was found to contribute to social isolation. Nettleton and colleagues \
(2004) described this social dilemma, as follows:

"She is in a double bind; if she reveals that she feels ‘down’ or ‘depressed’ this
would only reinforce those psychological interpretations. She has therefore to
work hard at her presentation of self. To get angry, anxious, depressed, unhappy,
or suicidal would serve to confirm an identity that she has to work hard to dispel. (p. 56)

 

[JaimeS]

Posing the question, “...should we tell [a patient they have ME/CFS] or not?”
Huibers and Wessley (2006) recommended that individuals who are in the acute or
early stages of ME/CFS should not be informed of their diagnosis “because the label
may stimulate chronicity” (p. 899). They proposed that physicians should only share the
news of diagnosis with individuals who have suffered with ME/CFS for an extended
period of time, who are in an advanced stage of illness, and who evidence only low
chances of recovery.

:thumbdown:

W-what. What. What.

Qualitative research with Swedish physicians noted that they, too, refrained
from providing diagnoses to ME/CFS patients during the early stages of their illness, as
a strategy “for hindering the patient from becoming too focused on his/her diagnosis
and problems” (Asbring & Narvanen, 2003, p. 717).

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.

 

[JaimeS]

....less than 30% of physicians reported having enough
information about making an ME/CFS diagnosis (Brimmer et al., 2010). Furthermore,
doctors noted experiencing difficulties associated with being unable to provide causal
explanations to patients, with having limited treatment options to offer, and with having
inadequate answers to patients’ questions (Asbring & Narvanen, 2003; Brimmer et al.,
2010). Feelings of incompetence and helplessness, combined with patient
dissatisfaction, appeared to threaten professional identity and contributed to physicians’
experiencing negative opinions of treating patients with ME/CFS (Asbring & Narvanen,
2003)

I have wondered about this many times, whether the helplessness doctors feel as the ones who 'should' have the answer informs their attitudes towards those with incurable chronic illness.

-J

 

[JaimeS]

Some ME/CFS patients have reported that their physicians appeared to resent
their active involvement in the diagnostic process and seemed to perceive the
involvement as a threat to their medical knowledge and their position (Cooper, 1997).
Other patients expressed that, in trying to demonstrate that they were “good” patients,
they did not “provoke” their doctors by sharing information they had learned about
ME/CFS from other sources (p. 199).

I'm sure this doesn't sound familiar to anybody.

 

[Valentijn]

:thumbdown:

W-what. What. What.

What. What.

I keep forgetting you're somewhat new to the club.

Imagine the most horrible things a doctor or therapist might say about an illness or patients who have it, and odds are the biopsychosocial (pyschosomatic) proponents in the ME/CFS arena have already said something worse.

I went through Professor Sir Simon Wessely's compiled research at one point to pull out the gems. A lot of it is explaining the theories (okay, horrible enough) but the bits near the beginning under headers for "BIOLOGICAL INVESTIGATION AND TREATMENT" and "DISABILITY PAYMENTS AND CARER ASSISTANCE" are especially egregious.

I recommend wearing a heart rate monitor before starting through the list of quotes, and taking a break when it gets too elevated It's also worth searching the entire page for "national archives", since those are semi-private communications to a government agency which were later released via FOIA request. He really lets loose when he thinks the cray-cray patients won't hear about it

 

[alex3619]

I'm sure this doesn't sound familiar to anybody.

Never. Except that one time. Oh, and the other twenty. Oh, ok, a lot.

 

[alkt]

I have wondered about this many times, whether the helplessness doctors feel as the ones who 'should' have the answer informs their attitudes towards those with incurable chronic illness.

-J

as in don't blame the medical profession for their lack of knowledge blame yourself for having the symptoms we cannot give you answers for. we will now pass you on to the psychiatrist who are really good at confounding you and us with psychobabble.

 

[evatious]

I went through Professor Sir Simon Wessely's compiled research at one point to pull out the gems.

That's an impressive selection!

I can't unsee that lot What a massive tool. So much bias...