The coping energy through narrative medicine

800px-echo_and_narcissus

 

Poor Echo was neglected by Narcissus. The handsome boy despised everybody; all the nymphs and young men living in the wood. Echo never had her own voice, but she kept repeating what the others were saying… another victim of Narcissus’ cruelty, Nemesis, prayed to Zeus for Narcissus to fall in love with somebody who was always out of reach. And  the prayer was answered; Narcissus fell in love with his own image mirrored in the water spring, and eventually died of thirst, hunger and lack of sleep.  Eventually he fell into the river and metamorphosed into the beautiful yellow flower we all know at spring time. What we are not familiar with is that Echo had to go on living  in the caves  forever, as a  skin and bones woman, left only with her voice, repeating the last  letters or tune of the words or music she was listening to [1].

On one hand, the Narcissus’ case; the total lack of extraversion-  to the world, on the other hand the total absence of self- identity and personal frame of mind, the Echo case, overwhelmed by the others.

In both cases, they fail to cope with the destabilised and broken balance, which reflects the falling into a changed state of consciousness, an insane passion. Echo is a symbol of the complete lack of personality in a human relationship: neither assertive nor aggressive, she is just a passive and flimsy girl, as  in the transactional analysis is defined as a Submitted Child [2], totally thoughtless. She is merely dominated by her tremendous passion for Narcissus, so engulfed by her emotions that she cannot figure out how to cope with his silence, without destroying herself. Their story is a drama of isolationism from both sides, two frantically ill people who are unable to t share any  glimpse of rationality. The Real metamorphoses would have been for Echo to transform herself through independent thought and speech, therefore keeping her body, and for Narcissus to be able, for the very first time, to listen to other people’s words and to enter into a dialogue, abandoning his monologues.

Mythology is there to provide inspiration from human behaviour: in the real world there are many people affected by Narcissus’ and Echo’s syndromes. On Narcissism, tons of paper have been consumed, whilst the “Echoist”  syndrome is  not so well known because, of course, this is more hidden and not so easily perceived.

Coping is defined as the conscious effort to solve personal and interpersonal problems, and seeking to master, minimize or tolerate stress or conflict [3] [4].  However, the effectiveness of coping does not only depend  on the type of stressor, which could be the onset of a disease, the death of a beloved or  a job loss,  but also on personality traits as reported by Carver [5]: optimism, extraversion, openness to new experiences, agreeableness and consciousness which are positive markers to  engage with coping. But neuroticism, with obsessive thought, is related to disengagement with coping, therefore personality is a key factor for activating coping strategies against a stressor. However, beyond personality, social factors have also been proven to be responsible for better coping with, for instance, the falling and being ill phase. With cancer for instance, it has been shown that  belonging to the British Asian Indian immigrant population in the UK rather than to the British White Population activates less coping resources mainly due to communication hurdles as the language, which constrains the potential  for extraversion  as well as  sharing the burden of  illness [6] with the providers of care and with  society at large, outside  the Asian Indian community.

If the mythological pair of Narcissus and Echo couldn’t talk, couldn’t share, couldn’t express their personality and subsequent behaviour defeated them: and, unable to escape from the given plot, they failed.

From a Medline overview, coping strategies, applied to different fields of life, especially in health care, have been investigated mainly through strict and quantitative questionnaires, with closed items: as in the Brief Cope questionnaire [7] The closed items were basically referring to self-distraction, active coping, denial, substance use, use of emotional support, use of instrumental support, behavioural disengagement, venting, positive reframing, planning, humour, acceptance, religion, and  self-blame. However, there is no general consensus about the effectiveness of coping on all these items. Cavers reports that denial works only for short term coping and.as with  religion, there is a huge open debate to evaluate whether to be religious is a sign of fragility or  having faith is a further inner  resource.

The stressor event is very much related to coping and also the measurement of stress is, from a sound scientific  point of view, evaluated through standard questionnaires, such as the Caregiver Self Assessment Questionnaire [8].  This 18-item, caregiver self-report measure was devised by the American Medical Association as a means of helping physicians to assess the stress-levels of family caregivers accompanying chronically ill older adult patients to their medical visits. Caregivers are asked to respond either “Yes” or “No” to a series of statements, such as “During the past week or so, I have felt completely overwhelmed” or  “During the past week or so, I have felt strained between work and family responsibilities”. For one item, family caregivers are asked to rate their level of stress on a 1-10 basis. For another item, they are asked to rate their perception of their current health compared  to their health a year before. A simple scoring system allows family caregivers to score their results and to determine whether or not they are highly stressed. The accompanying scoring sheet suggests that, in the case of high stress results,, they should consider seeing a doctor for a check-up  and reach out for caregiver support services.

How does all this fit with narrative medicine?

Narrative medicine is a tool which explores  living with illness by the patients, their caregivers and their providers of care. Narrative medicine uses completely different tools from standardized questionnaires and aims to achieve a wider and deeper understanding of how the patients and their family think, feel and act facing the illness. It sounds logical that whilst patients and caregivers write their stories, they refer to the level of stress (the stressor agent) and to the engagement or disengagement of coping strategies. By reading the stories of patients, a first very impressive classification could be envisioned in those stories in which a change occurs in thoughts, feelings and actions and in those other ones in which no change occurs. There is a second cluster of stories, where no change occurs, mirroring stuck  lives on themselves, and no further change is given, after the first trauma of communication, when the disease occurs.

It is known [9] that immediately after  the communication of a diagnosis of a severe condition, there is a loss of the health/disease balance: the announcement of a disease, especially if chronic and which might be fatal, represents a source of sorrow and fear in most of the collected stories; up to  85%.  The trauma of this broken balance is clear from the written text in many different diseases, moving from acute disease to chronic conditions.  However there is  another 15%, by semantic analyses, who show by writing impassively, no ability to reveal any  bitterness or  sorrow. As time goes by, we assist  the activation and  metamorphisms  of coping: people who initially wrote  that they couldn’t see or hope for any future, later state that by means of activated thoughts, emotions and behaviour that they can start to see again a possible future, even in their impaired condition or severe disability. These stories- autobiographies of  living with illness, are evident proof of change towards a positive coping, showing extraversion, consciousness, openness and agreeableness.

In one National Italian study that we carried out [10], presented at the European Haematology Association congress of 2014, we analysed both the results from the Self Assessment Caregiver Questionnaire and the narrative plots of stories of caregivers of patients affected by myelofibrosis, a chronic myeloproliferative neoplasm, seriously impacting quality of life of patients and their families. The 98 caregivers who participated in the study were 41% men and 55% women with a mean age of 55 years. As a result of the impact of the disease, 87% of caregivers  showed high levels of stress, as measured with the “Caregiver self-assessment questionnaire ” mentioned before in  the AMA. Nevertheless, through narrative analysis, carried out with a first step of  a direct reading of the stories and a second step using a semantic analytic software,  it came out that active coping was present in 53% of the experiences. The success factors were responsibility, affection and the possibility of  relying on health professionals, friends or colleagues. Therefore, what  seems at first glance to represent a risky population, from the AMA “Caregiver quantitative self assessment questionnaire” of burn out, in reality could be less since 60% of caregivers showed,  in the narratives, features of personality more prone to a better coping: extraversion first, with the capability to share with others sorrow and sadness  also reinforced. Consciousness, that sense of responsibility and duty  related to rational and moral parts of the individual:  the Adult according to Transactional Analysis, and The Normative Parent according to Transactional  Analysis.  From the narratives, people who don’t share, who keep on complaining, who live segregated in their rooms are more at risk of disengagement to coping. The stories of coping to a stress agent are all showing an attitude to change from the initial existential position of sorrow and fear at the moment of the diagnosis of their beloved one, to hope and serenity and calm. Relationship does indeed matter since in chronic condition they are facing long lasting levels of stress: however, it became apparent that the best type of coping was achieved through open, intimate, and authentic relationships, in which there was the possibility to fight each other and yet to make  peace afterwards.

From  the narratives of caregivers, love was one of the most powerful coping factors: and love is only rarely mentioned in scientific literature on coping: it sounds very bizarre in a structured questionnaire to pose a question such as “From 1 to 10, How much do you love…?”  and no scientific community would validate such an item. But here, through narratives, caregivers can freely express themselves, writing down their deeper feelings, dropping the social mask which protects but also inhibits revealing inner emotions and thoughts.

Love associated with consciousness might be the energy which, following an initial absence of communication (the patient- an ill Narcissus too frightened by his/her illness to talk and to communicate and a caregiver, the poor Echo, who does not know what to say and how to behave), activates the interrupted relationship, and transforms an introverted system into an extraverted one in which people react and cope. And we could even dare to change the ending to the sad story of Narcissus and Echo: we don’t dream of  a honey moon,  simply a healthier dialogue between them.

Narrative medicine is able to probe deeper than any questionnaires and highlight the complexity of the human being: despite living with stress, people can still find unexpected resources for coping. Therefore caution is recommended  before attaching quantitative deducted labels of “population at risk”; quantitatively, in a “yes” or “no” box,  they could be in a risky situation, but qualitatively they write about their inner treasures.

Therefore, the warranted metamorphosis of  unifying quantitative and qualitative research would bring energy and richness to both methods:  we are carrying out a study to evaluate the light and shadows in illness of people  affected by multiple sclerosis. For this study, the standard Brief Cope questionnaire is used together with a very free plot for narrating their illness,  from the time of onset to the present, with a glance toward imagining the future.

And there is another issue which brings more coping; the mere action of each writing each own pattern of living with the disease, is already shown to be therapeutic in itself.[11]

 

 


 

  1. Ovid, The metamorphoses, III book
  2. Eric Berne, What Do You Say After You Say Hello?; 1973, Bantam Books
  3. Weiten, W. & Lloyd, M.A. (2008) Psychology Applied to Modern Life (9th ed.). Wadsworth  Cengage Learning
  4. Snyder, C.R. (ed.) (1999) Coping: The Psychology of What Works. New York: Oxford University Press.
  5. Charles S. Carver,  and Jennifer Connor-Smith, Personality and Coping, Annu. Rev. Psychol. 2010. 61:679–704
  6. Karen Wendy Elizabeth Lord, Coping with Cancer : a comparison of British South Asian and British White patients following referral to a UK Cancer Centre, a cross sectional study, 2013
  7. Valvano A, Stepleman L. Critical Synthesis Package: Brief COPE Questionnaire . MedEdPORTAL; 2013. Available from: www.mededportal.org/publication/9453
  8. Epstein-Lubow, G., Gaudiano, BA, Hinckley, M., Salloway, S., Miller, & I.W. (2010). Evidence for the validity of the American Medical Association’s Caregiver Self-Assessment Questionnaire as a screening measure for depression. Journal of the American Geriatrics Society, 58(2), 387-388.
  9. T. Greenhalgh, B. Hurwitz, Why study narratives? BMJ. Jan 2, 1999; 318(7175): 48–50.
  10. Marini MG et al, BACK TO LIFE -LIVING, TREATING, MANAGING MYELOFIBROSIS: THE BURDEN OF ILLNESS FOR PATIENTS AND THEIR FAMILIES, Communication at EHA, June 2014
  11. Baikie, Karen A. and Wilhelm, Kay. “Emotional and physical health benefits of expressive writing.” Advances in Psychiatric Treatment 11 (2005): 338-346.

 

Maria Giulia Marini

Epidemiologa e counselor - Direttore Scientifico e dell'Innovazione dell'Area Sanità e Salute di Fondazione Istud. 30 anni di esperienza professionale nel settore Health Care. Studi classici e Art Therapist Coach, specialità in Farmacologia, laurea in Chimica e Tecnologie Farmaceutiche. Ha sviluppato i primi anni della sua carriera presso aziende multinazionali in contesti internazionali, ha lavorato nella ricerca medica e successivamente si è occupata di consulenza organizzativa e sociale e formazione nell’Health Care. Fa parte del Board della Società Italiana di Medicina Narrativa, Insegna all'Università La Sapienza a Roma, Medicina narrativa e insegna Medical Humanities in diverse università nazionali e internazionali. Ha messo a punto una metodologia innovativa e scientifica per effettuare la medicina narrativa. Nel 2016 è Revisore per la World Health Organization per i metodi narrativi nella Sanità Pubblica. E’ autore del volume “Narrative medicine: Bridging the gap between Evidence Based care and Medical Humanities” per Springer, di "The languages of care in narrative medicine" nel 2018 e di pubblicazioni internazionali sulla Medicina Narrativa. Ha pubblicato nel 2020 la voce Medicina Narrativa per l'Enciclopedia Treccani e la voce Empatia nel capitolo Neuroscienze per la Treccani. E' presidente dal 2020 di EUNAMES- European Narrative Medicine Society. E’ conferenziere in diversi contesti nazionali e internazionali accademici e istituzionali.

Lascia un commento

Questo sito usa Akismet per ridurre lo spam. Scopri come i tuoi dati vengono elaborati.