The circuit of symbolic violence in chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) (I): A preliminary study

ABSTRACT

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.

Acknowledgements

This research has been carried out within the framework of the Sociology PhD program of the Department of Sociology of the Universitat Autònoma de Barcelona (Autonomous University of Barcelona).

Disclosure statement

No conflict of interest at all.

Funding

This research has not had any public or private funding or crowdfunding in any of its stages for any purpose. The author also does not receive any funding of any kind.

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.”

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