The circuit of symbolic violence in CFS/ME (I): A preliminary study (Gimeno Torrent, 2021)

Pyrrhus

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The circuit of symbolic violence in CFS/ME (I): A preliminary study (Gimeno Torrent, 2021)
https://www.tandfonline.com/doi/full/10.1080/07399332.2021.1925900

Excerpt:
Gimeno Torrent 2021 said:
Objective:
How can it be that a disease as serious as CFS affecting such a large number of people could be so unknown to the general population? The answer given to this question is based on Pierre Bourdieu’s analyzes of symbolic violence.

Method:
The “letters to the editor” by CFS patients to three national Spanish newspapers were subjected to various qualitative and quantitative analyzes.

Results:
Based on the qualitative analyzes and their theoretical interpretation, 13 mechanisms of symbolic violence were identified: non-recognition, institutionalized un-care, condescension, authorized imposition of illegitimate verdicts, delegitimization, disintegration, imposition of discourse, euphemization, silencing, invisibilization, isolation, uncommunication, and self-blaming. Multiple Correspondence Analysis made it possible to identify that the structural mechanisms (non-recognition, disintegration) were combined with the most symbolic ones, which came to the forefront producing the observed effects of symbolic violence. The 13 clusters obtained in the Agglomerative Hierarchical Clustering confirmed this result.
 
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"The “letters to the editor” by CFS patients to three national Spanish newspapers were subjected to various qualitative and quantitative analyzes"

I"d love to see the actual research paper, as I don' t understand what the heck they are talking about ?

CFS patients send letters to the Editors?
 

SNT Gatchaman

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maybe they mean that the letter writers, with CFS- in their writing we hear about non recognition, self blaming,
I can’t see the full paper either, but I expect the analysis is of community replies to ME/CFS patients‘ letters, with the negative features as summarised. Also “letters to the editor” may not be a feature in all countries - it’s also a bit old-school, likely supplanted by social media postings particularly in the “younger” demographic.
 

wabi-sabi

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This is really long- but I love it.

Appendix/Annex Examples drawn from the letters of each mechanism of symbolic violence (themes and subthemes)
Non-recognition
[Non-recognition of the sick and the disease:] “They deny me the condition of chronic condition disease […]”
[Humiliations and systematic mistreatment of CFS patients by Public Administration as a deterrent strategy for the recognition of disabilities:] “His illness is not recognized by the Spanish Social Security Administration, so by pure process they decide to make his life more difficult [..]. They take away her joy. They discourage her. They take away her desire to fight. They kill her little by little. And nobody feels responsible. She wants to be happy, but her illusions are stolen. It seems incredible that our society, instead of helping CFS patients, could destroy the small steps that they are taking.”
[Non-recognition of patients as human beings:] “How sad to know that as people we do not count for much.”
[Violation of the rights of CFS patients:] “High Court of Justice of Catalonia ruled that fibromyalgia is a reason to obtain absolute disability, and these people ignore so that you despair and give up.”
[Repeated social abuse to patients:] “Because abuse is being told that you need a good fucking when what really happens is that you are extremely sick.”
[Delay of recognition requests as a mechanism of resignation and non-recognition of CFS patients:] “The request for a first disability impact assessment, a function that depends on the Catalan Ministry of Social Affairs and Citizenship, takes two years to be attended. Everyone who has requested it, knows it. The request for a subsequent review of the disability impact assessment also takes two years to be attended. Everyone who has requested it knows it.”
[Difficulty of the patient to accept himself and his limitations; internalization of the denial of recognition:] “It is very hard to accept weakness; it has cost me 40 years. With psychological help I have done it and now I know that life can continue even if you have poor health, you can lean on all the good things you have and continue to live and be useful and capable of something.”
[Violation of the right to dignity of affected families:] “It is very painful what my daughter and my husband suffer [said by a woman CFS patient].”
[Double bind:] “In October 2015 I applied for absolute disability and they sent me to the Catalan Institute of Medical Assessments (CIMA) for an assessment. CIMA’s doctor told me that my disability was totally justified. In February 2016, after delivering a lot of reports from different specialists, they notified me that they rejected my request. I do not understand how they can omit the diagnosis of so many doctors who agree that I cannot do any kind of common daily or work activity and that they ignore the 11 different medications that I have to take each day.”
[Judicialization of disability recognition:] “At the time I was denied disability by the Spanish Social Security Administration, but after going to trial, a social court granted me absolute disability due to an accident at work. After two years, the Superior Court of Justice denied me disability.”
Institutionalized un-care
[Medical un-care:] “I do not have doctors to take care of me.”
[Scientific un-care:] “What we really need to cure ourselves is research.”
[Discrimination resulting in un-care:] “There is the ironic paradox that a small bonus has been applied to me in a spa because I am a member of a club. And, nevertheless, in my condition of fibromyalgia and severe chronic fatigue syndrome patient, recognized by the Spanish Social Security Administration, no right protects us.”
[Social services un-care:] “institutions do not help them.”
[Socio-sanitary un-care:] “The situation has also affected his family. Her husband lost his job because he had to constantly take care of Sílvia and her two children, who have grown up living with the mother’s illness. ‘They do not deserve this burden without anyone helping us.’”
Condescension
[Condescension:] “On the other hand, before the explanation I gave to the psychologist about how helpless we were the affected by these diseases on the part of public healthcare system, she told me that it is due to the lack of consensus around these diseases [..]”
Authorized imposition of illegitimate verdicts
[Authorized imposition of illegitimate verdicts:] “CIMA’s doctor has made her stand on tiptoe and move her arms up and down, and just with this he has told her to return to duty overlooking all medical reports.”
[Doxical imposition:] “What I see every day is how many people try all kinds of things, like her, looking to lighten their suffering.”
[Assignment of successive verdicts over time until correctly diagnosed:] “It took me six years to find a doctor who could explain what I had.”
[Arbitrary determination of a maximum period of incapacity for work for a disease that is chronic and without treatment:] “They say I am able to work only because the sick leave is finishing.”
Delegitimization
[Incomprehension:] “At the beginning, everyone understands me, but this changes as outbreaks arise because of the increased effort [in the workplace]. Then nobody understands me.”
[Incomprehension:] “If society in general and our families in particular come to know CFS, at least we will have the comfort of their understanding.”
[Delegitimization:] “and then in addition to all that, they call them neurasthenic, hysterical, exaggerated..”
[Generalized questioning of CFS patient:] “As a CFS affected, I am very angry and fed up with having to continually explain myself.”
[Decredibilization:] “What do they think, that I invent my illness? That doctors invent my medical history?”
Disintegration
[Social, labor-productive and labor-reproductive disintegration:] “Being healed means being able to eat what you want without feeling bad, going to work and fulfilling your responsibilities without bursting, running the household, taking care of your children and having time and strength to enjoy leisure time, among many other things.”
[Lack of expectations:] “There is no self-projection into the future.”
[Resistance to social and labor disintegration and difficulty of adaptation to it:] “I resisted recognizing that I had to change my life, because for me work was not a sacrifice. I had a good time. I enjoyed.”
[Resistance to social and labor disintegration and difficulty of adaptation to it:] “I, who went to [X] every day and who was in contact with so many people.. That part has been very hard, I’m still adapting.”
[Conflicts between customs and labor/social rhythms of sick and non-sick:] “Do not be angry if yesterday I told you that today we would see us, but today I cannot stand it anymore and I cancel the appointment.”
[Necessary re-adaptation of CFS patient and his social circle to the social rhythms and customs required by the disease:] “We can control many things, but not everything. [..] We have made all the changes that were in our hands.”
[Divorces:] “My husband got fed up with me.”
[Consequences over identity of labor disintegration:] “I have had to sacrifice my profession, my life.”
Imposition of discourse
[Imposition of heroic discourse:] “but you have not chosen well at all, because in another body you could have been more harmful if possible, on a psychological level, so you have failed in that purpose. Since we have to live together, I’m getting to know you thoroughly, studying you, so as not to provoke your outbursts of unbridled violence that hurt my physique so much. Although, remember, you only have my body.”
[Imposition of normality discourse:] “I spend the week pretending I’m fine and crying secretly [..]”
[Imposition of non-victimist/non-self-pitying discourse:] “His prospects are grim, but he resists self-pity.”
Euphemization
[Making a virtue of necessity:] “But I would not like to convey a pessimistic view of my situation. [..] That this has made me learn. That here I have realized that you have to be happy with the little things that life puts you ahead.”
Silencing
[Silencing:] “I have never wanted to make public something that I considered too personal.”
Silencing behaviors: Some patients send anonymous or signed letters with their acronyms. This is assimilable to the silencing, since the person hidden that suffers from CFS.
Invisibilization
[Invisibilization:] “It is imperceptible in the eyes of society.”
[Absence of biological markers:] “It is lacking of any physiological marker could identify it.”
[Without any sign capable of operating as negative symbolic capital:] “These people do not look bad, they can walk, they do not have the signs that usually define a disabled person.”
Isolation
[Isolation as a product of disintegration:] “Well, think that they are people who live.. Some live in the most absolute loneliness.”
[Isolation as a protective mechanism:] “I just leave home; I feel protected there.”
Uncommunication
[Uncommunication:] “[..] that they feel lonely [..]”
Self-blaming
[Self-blaming:] “For years I have come to think that I had lost my mind or that I was a lazy person who did not know how to run the household and take care of my son.”
[Psychologization of symbolic violence with the effect of self-blaming:] “No miracle: I have worked hard to learn about what is happening to me, to understand it.., and to change myself, to correct my old psychic structure, which was harmful to me.”
[Medicalization of symbolic violence:] “Did you get medication to cope with depression? Yes.”
 

SNT Gatchaman

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I expect the analysis is of community replies to ME/CFS patients‘ letters
Then I don't see replies to letters to editors often
Appendix/Annex Examples drawn from the letters of each mechanism of symbolic violence (themes and subthemes)
@Rufous McKinney looks like you were correct :) and that these are primary letters, from patients describing the negativities. Thank you for listing @wabi-sabi.
 
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The circuit of symbolic violence in CFS/ME (I): A preliminary study
It looks like reading the entire paper is somehow Mandatory.

I'm immersed in the Intro- fascinating stuff.

Reminds me of a favorite film of all time, Cloud Atlas.

And the main line from this film: I will not tolerate criminal abuse.

so while plenty of that hs happened to me, over the decades...no more. Nope, I won't tolerate it.
 
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Maybe reading this is gonna - have to be done in small batches and doses and- with PEM breaks.

Because this is so stunningly sad.

I mean- here we are:

Under these circumstances, it should not be surprising that some informants consider life “a death in life.” A description that, however figurative and metaphorical it may seem, must be taken literally because
the circuit of symbolic violence in the CFS inevitably leads in the social death of the CFS patients.
 

SNT Gatchaman

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Thats a stunning summary of indignations.
Disintegration happened big time, for me.
I'm personally still pretty new to this disease (6 months) but my experience indicates it's definitely biologically pathophysiological in origin - albeit with some secondary negative psychological effects (understandably).

However, I was taught in medical school (in 1992) that ME was a real physical disease, just that we didn't know what caused it. I very clearly remember the lecturer saying that the most important thing we could do for our patients was agree and accept their symptoms and tell them we can help support them, even though we don't understand it and can't cure it. (This seems quite progressive in hindsight and the world-at-large appears to have lost significant ground here).

Despite all the above, I still find that I am questioning myself and asking "could it be burnout / depression / anxiety etc?" For the record, every time I ask myself this, the answer is a resounding "no!". All my friends and colleagues agree too.
 
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albeit with some secondary negative psychological effects
there is alot of psychological baggage associated with all this , that can emerge over time, that has to be also dealt with.


r, I was taught in medical school (in 1992) that ME was a real physical disease
sounds like you went to a good school...what we hear frequently is its a subject they 1) don't teach ; or 2) warn you to avoid any further interest in it...
 

wabi-sabi

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Despite all the above, I still find that I am questioning myself and asking "could it be burnout / depression / anxiety etc?" For the record, every time I ask myself this, the answer is a resounding "no!". All my friends and colleagues agree too.
I frequently have this self-doubt myself. While I know in my bones it's not burnout/depression etc., it is still frightening to question your own sanity that much.

That questioning I find to be worse than the disease itself. As well as the fear of how I will support myself when I am too ill to work and I can't convince any medical person there is actually something wrong with me. I try not to think about this too much as it just frightens me to no purpose. But those sorts of thoughts keep me awake at night.
 
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Just found this. Despite how people may see this as stating the obvious in academic language I Actually think its good , since it starts an ethical conversation and conversation about power wrt cfs. One wants to bring up the term "biopower" and the general idea of the "biopolitical" but also "necropolitics " when it comes to cfs. And "cryochronology" the study of frozen time