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Defeating the shame in illness narratives

“Shame is a soul eating emotion.” Carl Gustav Jung

Maria Giulia Marini at the Trinity College

Maria Giulia Marini at the Trinity College

Shame is a feeling which has to do with humiliation, inadequacy, disgrace, and inferiority. To experience the feeling of being ashamed, there should always be someone else, “the else”, who is judging and moralizing both verbally and non-verbally. In my opinion, of the many types of emotion shame is the most social one: when one is angry or happy. Other emotions may or may not be present, but in the majority of cases shame has to do with a tertiary point of view, which could be the microcosm or macrocosm of the society it belongs to. As microcosm, it is seen in family, work, school and friends; as macrocosm, in the wider community, the city, the country of belonging and internationally or globally.

Before entering the health care world, let’s examine the word “shame”, and its Italian counterpart- vergogna. In Italian, the word “vergogna” comes from latin “vereri” and has a slightly different meaning from the English word. It means to feel pain and humiliating perturbation inside; to feel ashamed, and is very much related to the word “verecondia” which is concerned with a proper way of behaving and respect for others, generally among upper classes, nobles, and in the relationship between men and women. “Verecondia” was a virtue for women, the opposite of pride and not related to “humiliation”, but instead for respect towards men. Although not my mother tongue, I understand from my studies that the word “shame” comes from Skam, a proto-german word with a very strong impact, related to a committed sin: “shame on you” is almost like cursing.

When considering these nuances of interpretation, we move between these different historical derivations of “vergogna” and “shame. The Italian word has to do with the noble sentiment of “humbleness”, which is not totally or exclusively humiliation. Symbolically it is the ritual of village people removing their hats in front of knights or nobles, or of the peasants who concealed their dirty hands because they were feeling inadequate. These are just a few examples to explain why “vergogna”- shame has to do with social class, beliefs and roles.

Robert Plutchick, in his wheel of emotions to study the evolutions of feelings, provides an interesting explanation about the ingredients of shame: he says that this feeling is originated by two primary emotions, as disgust and fear. Their combination results in shame and embarrassment, and humiliation.

If we consider the classical definition of Arthur Kleinmann, we know that with the word “disease” we call into action the biomedical model, the body/mind as broken machines to repair; with the word “illness” the inner living of a patient with a disease, and with the word “sickness” as the way a disease is considered by society. Therefore, the word “shame” falls more into the definition of sickness with a constant impact on the illness, the ”inside” of the patient. What strikes a chord is the relationship between patient and social context: in this case, even with ups and downs, the predominant emotions and behaviours are inclusiveness, attention, compassion, shared fears and shared rage, if any. There is a dynamic alignment, between the ill person and others which changes hand in hand with the development of the disease.

When there is no tuning between the realm of the ill person and the realm of the others outside, sharing is very hard to achieve and eventually exclusion and loneliness are consequences on both sides: shame – vergogna- could be one, the “culprit” of discrimination.

When is shame present in sickness? When the disease undermines the body’s aesthetics? When the disease affects functionality? When something odd starts to appears, the “irregular outlier”? All of these could be valid, but their predominance is very different according to the eco system within which the ill person resides.

Shame is a very difficult emotion to uncover because when someone feels embarrassed, he/she is not willing to speak about the causes of these feelings. It is precisely this type of situation where narrative medicine can be of help: patients, in the comfort zone of anonymity can finally be empowered through writing, with openness and intimacy. Whilst the oral interview with patients often does not allow expression of the feeling of humiliation, the words “shame” and “feeling ashamed and embarrassed” are recorded more easily by the pen or by the keyboard.

Narrative medicine is based on the interaction among patients and health care professionals, with attention to when the disease showed up, how the disease is considered and treated and to the possibile health care outcomes. Our narratives are basically all real, and they don’t belong to the “fiction” of “fantastic fantasy”. The aim of narrative medicine is to create aligned relationship between carers and patients, to allow patients to achieve and display the factors for coping, that is to master the stress induced by the disease. In Fondazione ISTUD, we have collected more than 6000 narratives of patients, family members and physicians and most of these stories are structured and they unfold the disease according to the “falling ill” phase, “the being ill phase” and the two possible futures “getting worse or getting better” provided that, the Happy Ending could be the resolution of a profound depression despite the serious body impairment is still there.

 

The coping factors

When we read – often by two separate independent story- we study whether narratives are rich of coping abilities, that is the mastering of a stressful event as an illness, or it lacks of these factors. Carver is one main reference name on the study of coping and he highlighted five variables which do enhance coping as:

  • Agreeableness
  • Openness
  • Awareness
  • Responsibility
  • Optimism

 

The three negative factors for coping:

  • Denial
  • Isolation
  • Obsessive thought

In the narratives, we ascertain if the Carver’s factors are there. However, coping after the trauma of a disease is very much multifactorial and goes far beyond these elements that we have mentioned.

 

Patients’ narratives on shame and coping

In our western world, skin diseases which impact the aesthetics of the face and the body, such as acne, psoriasis, atopic dermatitis, hives, are lived with in shame by most of the affected people. Below are some verbatim statements from narratives of patients affected by psoriasis:

“Taking away my clothes for me was a cause of shame and looking myself in the mirror was every time a trauma. Today, I have overcome the milder problems, phototherapy makes me feel good. I feel that because of psoriasis I have not lost anything, I do not have to let me go down … bad illness are others..”

“They said there was nothing to do. I just had to be more serene and less nervous. But how do you do it? There were times that I was a crust walking, not leaving home for the shame and because the people around me, my family, was remarking it and I was ashamed that they were ashamed of me. Psoriasis has taught me that we should never judge by appearances, that everybody of us suffers for something and we must go beyond, listen and become good and sensible.”

“After psoriasis appeared in my family, at work and with friends I felt so ashamed. Dressing up for me was impossible, looking at the mirror was not a nice thing. If I were to tell psoriasis today with an image for me it would be a bad image but I think that there is worse in life. Today I’m resigned.”

In the three written narratives on psoriasis above, the words “vergogna” and “vergognarsi” were automatically translated into or linked with “shame” and “feeling ashamed”.

If skin diseases evoke a strong feeling of shame – from our narratives, this is much more present within people who are ill than in the external world. There is a cruel inner judge of aesthetics, who shows no compassion for the disease but continues to criticize it. However, despite this inward persecution, we learnt also from the narratives the three main factors for coping: Firstly, rationalising that there are worse diseases. Then being helped, especially for young people, by their partners who accept and love them in an unconditional way. And lastly, learning to approach the illness more sensibly and therefore help others to respond in a similar way.   

However, there are other diseases, considered in common belief (personally, I don’t want to provide any ranking on the severity of illness, but prefer to respect every disease as it is) more severe: cancer for instance. Cancer has to do with survival, with the fear of dying, with invasive and “cruel” drugs and tests: however, what is one of the most common things considered by patients, even before the chance of survival? “Doctor, will I lose my hair?” The loss of hair has to do with identity, but also with aesthetics, and the social code of our society. Recently, there have been many campaigns which promote bold men and women after chemotherapy, such as the Bald Mona Lisa, to educate people and reinforce patients’ self-esteem. However, the shame, especially for a woman, in appearing bald, is still there. Hair seems more powerful than the life wish: something which may have to do with heritages of the past where women accused of witchery had their hair cut off (something still witnessed during August 2017 at Agra in India). How to cope with hair loss? Strategies for women coping with hair loss are narrated through the use of beautiful silk and cotton scarves, something which is becoming more popular than the use of wigs which seem too artificial.

Moving on with shame, there are striking cases of embarrassment, when dealing with patients who have undergone an ostomy and the consequent use of pouches for ileum and colon cancer. We have collected their narratives, both in Italy and in Australia and in only a few cases is the word “shame” clearly mentioned, but it is clearly identified between the lines: “I don’t want to look at myself”, “I don’t want to touch the pouch” and even more extremely, “I have a disgust of it”. Here, there is a mutilated body with an external bag collecting their faeces. Shame is definitely there, however the miracle of life comes to at least half of these patients and teaches patients sharing their illness with relatives and health care providers that the feeling of humiliation can be overcome. Patients’ Associations count for a lot and help at a peer level people who live with a stoma…. Following a good coping strategy, the outcome is a sort of pacification or ‘coming to terms with’ the traumatized body: “now, after the surgery, I’m happy to wear a bikini and I go regularly to swim”, this is the happy ending of the narrative of a girl. The goal of being able to show, with less invasive and visible pouches, the body again is a recurrent theme of a coping activity: also in this case, an intense rationalization was carried out. “I’m alive, thanks to the ostomy, and the stoma is now a part of me”.

The names given to the different stoma are symptoms of an achieved coping and signs to understand if shame is still there. Below are the four possibilities: emotional acceptance, technical acceptance, passive (resignation), mode, and difficulty, furthest away from coping.

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I strongly believe that if there were no anonymous collection of these narratives from patients with stoma, the embarrassment and difficulty of living with shame would not have emerged through purely oral investigation.

 

Another narrative on cancer

A Spanish Lady, now  aged 52,  had a cancer, at first initiated through the discovery of nasal polyps, then cancer invaded the back of the eye bulb and the only thing the doctors could do was, after a standard series of chemio and radiotherapy protocols, “to take the eye off, and a piece of nose was partially rebuilt.” After the eye surgery that occurred seven years ago, she decided not to take any further action to put a fake eye on. In her writing , she tells that she recently enrolled in a master on the ancient Mediterranean and wants to take advantage of this second opportunity that life has given her to study the Greek beauty and thought, and feel alive and happy.

I’ve never felt the loss of my eye as a loss, for me it was the Door to Life. It is my medal, I feel very proud to be able to show that life deserves to be lived. ”

If these are extreme case where the body is seriously involved, another situation where shame is often seen is in the narratives of elderly people: in this case, this feeling is not associated with a particular disease, but with the natural aging of the human mind and body over the years. Here, shame is even more difficult to decode, because it is not so clearly expressed by old people. The continuous complaints of elderly people of their doctors, the places they visit, the food they eat, and the constant attitude to look at the past, “When I was young…” as the Golden Age, when the body was strong and the mind was faster (perhaps less sharp)….. all of this could be signal of shame.

An old woman, very dear to me, after many days of constant complaining, started to cry in tears expressing her fears of discrimination, not able to use technology, “I am shameful of my heart which is not beating at the right pace, and I am afraid of being put in a nursing home. Furthermore, I’m a disaster with Internet and everything now goes through that technology”. Nobody around her suspected this, because she was appears outwardly as a very active and even proactive woman. The shame was silent, difficult to unmask, and was hidden by complaints and nostalgic feelings. The good news is that after sharing this with friends and relatives, and the clear request for help, shame melted away like snow exposed to sunlight for this Lady.

All of this is to say, that in some cases shame is “put into words”, written and reported, as in the narratives of people with skin disease. But in many cases, this feeling is often masked to others. Since shame has to do with showing oneself to a public, the untold here is very present, and to facilitate a good coping, it will take time before this emotion is revealed. It is shameful even to feel ashamed. However, as we know, the first step to begin coping is the making aware of the felt emotions.

 

Shame and the health care providers

In a study carried out in Italy, narratives from paediatricians on children and adolescents affected by severe asthma were analysed to see if this writing approach allowed fine-tuning  of both patients’ and physicians’ cultural construction, including emotions and values of the illness and the pathways to care.  Out of 68 parallel charts, the full narrative of a clinical case including also the attention to the illness, the sickness and the quality of the relationship, the most frequent risk factors for difficult relationships were physicians’ moral judgment (73%), and patients’ anger (50%). The full mechanism that induced the patients to explode with anger is often a sense of feeling ashamed for something that should not have been done: keeping an animal at home, parents who continue smoking, or the mere sensation of feeling judged by looking at how they are dressed, how they talk or how they behave, by doctors. And indeed, there are comments in their writing on the poor or excessive parenting style of the mothers of the children. Sometimes doctors are evaluators of the qualities of being a good parent, and they can be deeply judgmental where they see possible shortfalls in these skills. “The girl should go to live with the father because the mother is totally inadequate, lacking of empathy”. All of this, if not definitely related to shame, does in any case create an embarrassing relationship between doctor and patient  which has led to a refusal to change therapy in half of cases (50%) and to a lower rate of restored activities. That is to say, that the feeling of being humiliated and judged, creates in patients the need to leave a physician and the suggested treatments to choose less moralizing carers. Physicians who are able to control this judgmental attitude can master, beyond acceptance and listening, patients’ emotions of fear and sadness and provide reassurance and comfort. This last behaviour improved the alliance with patients’ and the effectiveness of treatments.

In the list of ‘TO DO’ things for a good carer, whenever possible, is to restrain from falling into the trap of moral judgement, verbally or otherwise, to avoid the feelings of inadequacy and inferiority that contribute to shame and lead patients to a passive attitude or an aggressive reaction, both of them ineffective in the  pathways of care. Kindness is the antidote to moral judgement; and that is both rational (intelligent) and emotional (compassionate).

 

Medicine in (post)contemporary society

(Post) Contemporary society which has a health care system made by lab tests, investigations and images, neglects more and more the presence of the body and the soul, putting in emphasis the mind and rational technology. It is like we assist to a schizoid separation: on one hand the disembodied medicine, with no flesh, no bones, no blood, no entire body, but mainly microsurgery and laser techniques, and invisible receptors and neurotransmitters, and on the other hand the body and the soul in their wholeness of the human beings. Changes in the bodies and in the minds, because of illness and old age, and other possible events, will ever exist for the self and the society. Belonging to the history of the humankind, we all bear the catalogue of emotions including shame.

Therefore, trying to answer the question of how to cope with shame, what have we learnt reading patients’ and doctors’ narratives: some of the Carver’s factors are still there: awareness, (rationalization, sense of reality), agreableness (the sharing with the others, looking for loving relationship, being  extrovert, and being kind also with selflimits, up to accepting and to forgiving), responsibility (starting to cure the illness,  ranking the illness with a responsible attitude towards more severe diseases) and get away from the obsessive thought of shame by doing something else, a creative activity.

Beyond the ordinary factors, Pride might be an interesting antidote to shame: if shame originates from fear and disgust, pride, according to Plutchick,  is a secondary emotion, born from “mother Joy” and “father anger”. As we have seen shame blocks the person in his/her life, limiting the potentiality of having nourishing social life. A moderate dose of anger, together with joy could be useful for continuing to live in the existential position of shame. I allow myself to write this because I learnt personally a lot from the Medal of the Lady of the Lost eye and from women who dare to show after the breast mastectomy, no plastic surgery anymore but scars decorated with Tattoos.In Japan, there is an art called Kintsugi: when a pot is broken into pieces, they don’t use invisible glue, and they don’t throw away the pot. With Kintsugi, they put gold all along the broken pieces and they rebuild the pot again. They will have a new pot, in which every rupture now is proud in its golden coating. Scars are all there and visible: the more scars there are, the more precious is the pot.

“When you make a hole in your dress, don’t repair it with invisible mending, but sew laces and embroidery to make it even more beautiful.” (Italian anonymous saying).

Cultures of Shame POSTER PNG

On September 19th I’ve held a lecture entitled: Defeating Shame in Postcontemporary Illness. An Analysis from Patients’ Narratives at the Trinity College of Dublin into an event “Cultures of shame in medicine: an interdisciplinary workshop”. Here you can dowload mypresentation entitled “Defeating the shame in illness narratives“, here you the program of the event.

 

References:

  • Assessing Coping Strategies: A Theoretically Based Approach, Charles Carver et al, Journal of Personality and Social Psychology Copyright 1989 by the American Psychological Association, Inc. 1989, Vol. 56, No. 2, 267-283
  • Narrative medicine: bridging the gap between medical humanities and evidence based care, Maria Giulia Marini, Springer Edition, 2016
  • The emotions, Robert Plutchick, University press of America, 1991
  • The illness narratives: suffering, healing, and the human condition, Arthur Kleinman—Basic Books, 1988
  • Living with a stoma, 2016
  • Narrative medicine to evaluate the relationship between clinicians and patients living with severe asthma A. Cappuccio , M. Latella , G. Pelaia , F. Menzella , G. Pellegrini , M. G. Marini, 12.01 – Medical Education, Web and Internet, 2016
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Written by

Epidemiologist and counselor – 30 years of professional life in health care. Classic humanistic background, including the study of Latin and ancient Greek, followed by scientific academic studies, chemistry and pharmacology. First years of career, in private international environment. I worked in medical research, moved to health care organization, getting academic specialization in Epidemiology. Later, in consultancy and health care education. Counselor with transactional analysis orientation. Currently, director of Innovation in Health Care Area of Fondazione ISTUD, an independent not for profit Italian Business School with an humanistic approach acknowledged by the Italian Ministry of Researech.. Active member of the board of Italian Society of Narrative Medicine, tenured professor of Narrative Medicine at Hunimed, Milan, and in 2016, referee for World Health Organization for “Narrative Method in Public Health.” Writer of the book; “Narrative medicine: Bridging the gap between Evidence Based care and Medical Humanities,” edited with Springer and of international publications on narrative medicine in scientific journals. Last book “The Languages of care in narrative medicine: words, space and sounds in the healthcare ecosystem”. Lecturer in different international contexts from Academy to Public and Private Foundations.

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