Hidden Suffering and the Effects of Adverse Childhood Experiences

Abstract

Abstract:To understand suffering is to understand what it means to be human. Suffering focuses our attention on our vulnerability, which we would rather ignore or deny. As health care professionals (HCP) we need to be able to listen, to attune and be empathic to the suffering patient. If we act as an "enlightened witness" we provide a safe place for a suffering patient to grieve their loss and be vulnerable. This is skilled and demanding work, it is also important to tend to our own needs through a practice of self-care and reflection to prevent burn-out and compassion fatigue. The topic of adverse childhood experiences (ACE), which are common in the general population, are addressed in the second part of this paper. Their effects are profound, and increase with the degree of maltreatment. The maltreatment and suffering of these children usually remains hidden into adulthood beneath years of shame and denial. One aspect of our job in health care is to help patients acknowledge, experience, and bear the reality of life with all its pleasures and heartache. In order to do this well, we need to keep in touch with our own humanity, but also continue to take care of ourselves.Keywords: suffering; meaning; healing; grieving; enlightened witness; spiritual; adverse childhood experiences; healthcare professional Avoiding ChangeWhen we see a nurse, or a doctor we want to be cured. We want them to remove, or correct our problem. A surgeon's knife cuts out an inflamed appendix. The patient is happy, she has survived, and her scar will not show on the beach. She returns to her family, friends, job, and all that makes up a life. She is essentially unchanged back to normal. We all like to be cured; we want to return to our regular life. We want to avoid change [1]. Suffering and LossIn most human suffering, there is often nothing to see. We all suffer at some time or other in our lives; it is usually related to love or loss. We fall in love, we get rejected. As we move through our lives loved ones die, or dreams disappear. We feel it to the core of our being, if we can allow it.Suffering is a state of distress associated with a symptom or an event that threatens our integrity [2]. We become fearful of the significance of a symptom, or how an event may affect our future. The perceived negative meaning may involve the actual or perceived loss of one's integrity or autonomy. The interpretation and the ensuing anxiety will be unique and personal even in an identical situation [3]. It is caused by the loss or threatened loss of what we most cherish [4]. To understand suffering is to appreciate what it is to be human. In contrast to pain, suffering is our experience of being cut off. No matter what we do, we have lost touch with our vital center, the deep well of our being. The loss of love or the life-altering implications of serious disease for instance, enforce change into our lives. How do we heal that suffering?

Zabbaleen Women’s Perspectives on Suffering

“…Even though many of these authors are based in Western culture, recurrent themes may be seen across cultural lines uniting the human spirit. In summation, suffering is personal, threatening to self and influenced by multiple factors; however, travail is changed by assigning meaning to it through the process of telling about the torment (Fulford, 2017). Suffering and its meaning are complex and oriented on the individual's life experiences.…”

“…Fulford describes this role of the health care professional as an "enlightened witness," providing a safe place for the patient to share, grieve, and be vulnerable (2017). Ferrell and other researchers (Ferrell, 2008;Fulford, 2017;Musa & Hamid, 2008;Selby et al, 2009;Hearns & Deeny, 2007)also noted that for those who work in situations that involve anguish, the distress of others could be taken on and become personalized, as it becomes personalized for the witness, creatingboth a conflict in understanding and a conflict to self by not being able to alleviate the angst of the sufferer. Thus, it is necessary to find meaning in suffering whether experienced by self or by others and to practice self-care and reflection to prevent compassion fatigue and burnout (Fulford, 2017).…”

“…In both religiosity/spirituality and non-religious/spiritual patients, (positive) spirituality is seen as an important dimension of one's life where in the patient seeks control of his disease through partnership with a higher power, perhaps through seeking support from the healing power of icons, and finding the place of worship to be a place in which to escape their problems and ultimately find deeper meaning and connection (Fulford, 2017;Tzounis, Kerenidi, Daniil, Hatzoglou, Kotrotsiou & Gourgoulianis, 2016;Balboni, Vanderwerker, Block, Paulk, Lathan, Peteet&Prigerson, 2007;Tarakeshwar, Vanderwerker, Paulk, Pearce, Kasl&Prigerson, 2006). Accordingly, much of the research and theory points to the critical aspect of meaning in suffering.…”

“…Though they faced radically different life experiences, Frankl as a Nazi prisoner and Lewis who became a mourning widow, the two converged on the idea that suffering understood results in a connection with self, others and possibly an existential being, which Lewisidentified as hisGod. These views on suffering are often caged within the Western philosophy of life, death and a greater being, with an emphasis placed on maintaining composure rather than grieving our losses and therefore accepting realities of life (Fulford, 2017). Researchers in the healthcare and social sciences join psychologists in positing that suffering is lessened depending on the understanding or meaning one attaches to their agony (Fulford, 2017;Tzounis, Kerenidi, Daniil, Hatzoglou, Kotrotsiou & Gourgoulianis, 2016;Kéri, 2015;Koenig, 2012;Balboni, Vanderwerker, Block, Paulk, Lathan, Peteet & Prigerson, 2007;Tarakeshwar, Vanderwerker, Paulk, Pearce, Kasl & Prigerson, 2006;Copp 1974;Kahn and Steeves, 1995;Cassell, 1982;Parameshwar, 2006;Råholm, 2008).A review of literature focused on healthcare based research of meaning in suffering will be discussed followed by a review of Coptic history and the Coptic view of suffering.…”

“…However, the interpretation and expectation of suffering is shaped by many factors. In the last decade, social scientists have focused on social-cultural aspects of suffering and have found that religious and personal beliefs change the perception of suffering and therefore the interpretation of suffering (Fulford, 2017; Tzounis, Kerenidi, Daniil, Hatzoglou, Kotrotsiou & Gourgoulianis, 2016; Kéri, 2015;Koenig, 2012;Balboni, Vanderwerker, Block, Paulk, Lathan, Peteet & Prigerson, 2007;Tarakeshwar, Vanderwerker, Paulk,Pearce, Kasl & Prigerson, 2006; Wilkinson, 2001;Williams, Jerome, White & Fisher, 2006;Gordon, Feldman, Crose, Schoen, Griffing & Shankar, 2002). The purpose of this paper is to examine the influence of religion and culture on the meaning of suffering in Zabbaleen women of Cairo, Egyptfrom a healthcare perspective in the context of having Hepatitis C. This community lives in a society that incorporates traditional Egyptian beliefs and strong Christian religion in a larger society of Islam.…”