Skip to main content

Advertisement

SpringerLink
Log in

Ways of Hoping: Navigating the Paradox of Hope and Despair in Chronic Pain

  • Original Paper
  • Published:
Culture, Medicine, and Psychiatry Aims and scope Submit manuscript

Abstract

In this paper, we explore hope in the context of living with chronic pain. Individuals with chronic pain from temporomandibular disorder(s) were interviewed four to five times over the course of their 18-month participation in a clinical trial investigating the effectiveness of Traditional Chinese Medicine. We sought to understand shifts in participants’ descriptions of expectations and hopefulness, particularly with regard to the work involved in counterbalancing positive thinking with buffers against disappointment. We found hope to be a dynamic and multifaceted mindset as distinct from being a single entity to be measured. Drawing upon Polanyi’s concept of tacit knowing, we explore how different ways of hoping emerge and index one another in participant narratives. We offer a working typology of hope and raise as an issue the manner in which the paradox of hope—hoping enough to carry on while keeping hopes in check to avoid the ever-present possibility of despair—complicates simplistic notions of the relationship between positive thinking and the placebo response.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  1. Contemporary evidence-based medical culture in the U.S. intensely values truth-telling, full disclosure of prognosis, realism, and adherence to “the facts” (Caspi and Holexa 2005; Oliffe et al. 2007; Pergert and Lützén 2012; DelVecchio Good et al. 1990). This has not always been the case. Indeed, it runs counter to the values espoused by clinicians in the U.S. medical culture in the not too distant past (DelVecchio Good et al. 1990), where greater credence was paid to both the psychosocial state of the afflicted, and the wishes of family members responsible for a patients’ therapy management who may desire to provide a more peaceful and positive treatment environment where hope is sustained (Kagawa-Singer and Blackhall 2001; Kodish and Post 1995). The issue of disclosure and the weighing of autonomy versus non-malfeasance is a particularly sensitive in end of life issues or in cultures where dashing the hopes of chronically and terminally ill individuals is considered immoral (de Pentheny O’Kelly et al. 2011; Gongal et al. 2006; Harris et al. 2003).

  2. It is beyond the scope of this paper to map ways of hoping onto ways of knowing. We draw from this framework as a useful way to explore the range of cognitive to embodied experience subsumed under the term hope.

  3. This mode of hoping is comparable to Webb’s (2007) “estimative hope” (described as evidence-based hope), Lohne and Severinsson’s (2004) “small hope” (described as possible hope), and Wiles et al.’s (2008) “hope-as-expectation” (described as the high end of a continuum of probability of a desired outcome).

  4. We chose to include wishful hope due to its resemblance to widespread usage of the term hope in studies of expectation (Lynch 1962; Leung et al. 2009). Hope is often described as similar to expectations, but a wish or want, rather than a realistic projection. Among our participants, this form of hope was not widespread and was represented clearly in only a few participant statements. The relative absence of this form of hope supports the need for a more nuanced understanding of the experience of hope in chronic pain and illness.

  5. In contemporary Western culture, hope has become a moral imperative (Rose and Novas 2005). Ignorance, resignation, and hopelessness in the face of the future are deprecated. In cases where there is little hope for resolution in a realistic sense, individuals are encouraged to pin their hopes on the promise of new technology and medical advances (Brekke and Sirnes 2011).

  6. Hope presents a paradox for the afflicted and clinicians alike. For the afflicted, hope is needed, but too much hope risks disappointment to the point of despair. For the conventional medicine practitioner, “truth-telling” (and full disclosure of the facts, costs, benefits, etc.) is deemed the ethical thing to do by the standards of evidence-based medicine, which favors rational decision-making. Yet in practice clinicians often face an ethical dilemma when trying to balance truth with inspiring hope (de Pentheny O’Kelly et al. 2011; Oliffe et al. 2007; Pergert and Lützén 2012). This dilemma will only grow with increasing evidence that hope is a powerful healing mechanism (Clarke 2003; Herth 1992; Nekolaichuk et al. 1999; Snyder et al. 1991) and ethical arguments identifying hope as an existential aspect of the individual that must be treated with respect and sensitivity (Kodish and Post 1995). CAM practitioners appear to be particularly sensitive to the hope dilemma and to the impact of their words and actions on the patient’s healing response (Caspi and Holexa 2005; Schafer et al. 2012). The paradox for clinicians is therefore to consider the patient’s right to be informed while at the same time to avoid undermining both the placebo response (the body’s natural ability to heal) and the emotional necessity of continuing to hope.

References

  • Adams, Vincanne, Michelle Murphy, and Adele E Clarke 2009 Anticipation: Technoscience, life, affect, temporality. Subjectivity 28(1):246-265.

    Article  Google Scholar 

  • Aickin, Mikel 2010 Editorial: Ways of Knowing. Journal of Alternative & Complementary Medicine 16(8):819-820.

    Article  Google Scholar 

  • Antelius, Eleonor 2007 The Meaning of the Present: Hope and Foreclosure in Narrations about People with Severe Brain Damage. Medical Anthropology Quarterly 21(3):324-342.

    Article  Google Scholar 

  • Averill, J.R. and L. Sundararajan 2005 Hope as Rhetoric: Cultural Narratives of Wishing and Coping. Interdisciplinary Perspectives on Hope pp. 133–165.

  • Barnard, D 1995 Chronic Illness and the Dynamics of Hoping. In Chronic Illness: From experience to policy. S.K. Tooms, D Barnard, and A Carson, eds. Pp. 38-57. Bloomington, In: Indiana University Press.

    Google Scholar 

  • Bletzer, Keith V., Nicole P. Yuan, Mary P. Koss, Mona Polacca, Emery R. Eaves, and David Goldman 2011 Taking Humor Seriously: Talking about Drinking in Native American Focus Groups. Medical Anthropology 30(3):295-318.

    Article  Google Scholar 

  • Brekke, Ole Andreas, and Thorvald Sirnes 2011 Biosociality, biocitizenship and the new regime of hope and despair: interpreting “Portraits of Hope” and the “Mehmet Case”. New Genetics and Society 30(4):347-374.

    Article  Google Scholar 

  • Brown, Nik 2015 Metrics of Hope: Disciplining affect in oncology. Health 19(2):119-136

    Google Scholar 

  • Bury, Michael 1982 Chronic illness as biographical disruption. Sociology of Health & Illness 4(2):167-182.

    Article  Google Scholar 

  • Caspi, Opher, and Joshua Holexa 2005 Lack of standards in informed consent in complementary and alternative medicine. Complementary Therapies in Medicine 13(2):123-130.

    Article  Google Scholar 

  • Cassel, Eric J. 1982 The Nature of Suffering and the Goals of Medicine. New England Journal of Medicine 196(11):639-645.

    Article  Google Scholar 

  • Chesla, Catherine A. 2005 Nursing Science and Chronic Illness: Articulating Suffering and Possibility in Family Life. Journal of Family Nursing 11(4):371-387.

    Article  Google Scholar 

  • Clarke, David 2003 Faith and Hope. Australasian Psychiatry 11(2):164-168.

    Article  Google Scholar 

  • Corbett, Mandy, Nadine E. Foster, and Bie Nio Ong 2007 Living with low back pain–Stories of hope and despair. Social Science & Medicine 65(8):1584-1594.

    Article  Google Scholar 

  • Crites, Joshua, and Eric Kodish 2013 Unrealistic optimism and the ethics of phase I cancer research. Journal of Medical Ethics 39(6):403-406.

    Article  Google Scholar 

  • Crowley-Matoka, Megan, and Gala True 2012 NO ONE WANTS TO BE THE CANDY MAN: Ambivalent Medicalization and Clinician Subjectivity in Pain Management. Cultural Anthropology 27(4):689-712.

    Article  Google Scholar 

  • de Penthenyokelly C, Urch C, Brown EA (2011) The Impact of Culture and Religion on Truth Telling at the End of Life. Nephrology Dialysis Transplantation 26(12):3838-3842

    Article  Google Scholar 

  • DelVecchio Good, Mary-Jo, ByronJ Good, Cynthia Schaffer, and StuartE Lind 1990 American oncology and the discourse on hope. Culture, Medicine and Psychiatry 14(1):59-79.

    Article  Google Scholar 

  • Good, Mary-Jo DelVecchio, Paul E. Brodwin, Byron J. Good, and Arthur Kleinman 1992 Pain as Human Experience: An Anthropological Perspective. Berkeley: University of California Press.

    Google Scholar 

  • Desjarlais, Robert 1992 Body and Emotion: The Aesthetics of Illness and Healing in the Nepal Himalayas. Philadelphia: University of Pennsylvania Press.

    Google Scholar 

  • Eaves, E.R., M. Nichter, C. Ritenbaugh, E. Sutherland, and S.F. Dworkin 2014a Works of Illness and the Challenges of Social Risk and the Specter of Pain in the Lived Experience of TMD. Med Anthropol Q 29(2):157–77.

  • Eaves, E.R., C. Ritenbaugh, M. Nichter, A.L. Hopkins, and K.J. Sherman 2014b Modes of Hoping: Understanding Hope and Expectation in the Context of a Clinical Trial of Complementary and Alternative Medicine for Chronic Pain. EXPLORE 10:225–232.

  • Garro LC (1992) Chronic Illness and the Construction of Narratives. In: Good MJD, Brodwin PE, Good BJ, Kleinman A (eds.) Pain as Human Experience: An Anthropological Perspective. University of California Press, Berkeley

    Google Scholar 

  • Geurts KL (2002) Culture and the Senses: Bodily Ways of Knowing in an African Community. University of California Press, Berkeley

    Google Scholar 

  • Glenton, Claire 2003 Chronic back pain sufferers—striving for the sick role. Social Science & Medicine 57(11):2243-2252.

    Article  Google Scholar 

  • Goffman E (1959) The Presentation of Self in Everyday Life. Doubleday, New York.

    Google Scholar 

  • Gongal, Rajesh, Pradeep Vaidya, Rajshree Jha, Om Rajbhandary, and Max Watson 2006 Informing patients about cancer in Nepal: what do people prefer? Palliative Medicine 20(4):471-476.

    Article  Google Scholar 

  • Good BJ (1992) A Body in Pain: The Making of a World of Chronic Pain. In: Delvecchio Good MJ, Brodwin PE, Good BJ, Kleinman A (eds.) Pain as Human Experience: An Anthropological Perspective. University of California Press, Berkeley

    Google Scholar 

  • Good, Byron J. 1994 Medicine, Rationality, and Experience: An Anthropological Perspective. Cambridge: Cambridge University Press.

    Google Scholar 

  • Good, Byron J., and Mary-Jo DelVecchio Good 1991 In the Subjunctive Mode: Epilepsy Narratives in Turkey. Social Science & Medicine 38(6):835-842.

    Article  Google Scholar 

  • Hahn, Robert A., and Arthur Kleinman 1983 Perspectives of the Placebo Phenomenon: Belief as Pathogen, Belief as Medicine: “Voodoo Death” and the “Placebo Phenomenon” in Anthropological Perspective. Medical Anthropology Quarterly 14(4):3-19.

    Article  Google Scholar 

  • Hall, Beverly A. 1994 Ways of maintaining hope in HIV disease. Research in Nursing & Health 17(4):283-293.

    Article  Google Scholar 

  • Hammer, Kristianna, Ole Mogensen, and Elisabeth O. C. Hall 2009 The meaning of hope in nursing research: a meta-synthesis. Scandinavian Journal of Caring Sciences 23(3):549-557.

    Article  Google Scholar 

  • Harris, Julian J., John Shao, and Jeremy Sugarman 2003 Disclosure of cancer diagnosis and prognosis in Northern Tanzania. Social Science & Medicine 56(5):905-913.

    Article  Google Scholar 

  • Herth, Kaye 1992 Abbreviated instrument to measure hope: development and psychometric evaluation. Journal of Advanced Nursing 17(10):1251-1259.

    Article  Google Scholar 

  • Jackson, Jean E. 2005 Stigma, Liminality, and Chronic Pain: Mind-Body Borderlands. American Ethnologist 32(3):332-353.

    Article  Google Scholar 

  • Jackson JE (2011) Pain and Bodies. In: Mascia-Lees FE (ed.) A Companion to the Anthropology of the Body and Embodiment. Wiley-Blackwell, Chichester

    Google Scholar 

  • Kagawa-Singer, M., and L. J. Blackhall 2001 Negotiating cross-cultural issues at the end of life: “you got to go where he lives”. JAMA 286(23):2993-3001.

    Article  Google Scholar 

  • Kaptchuk, Ted J, Jessica Shaw, Catherine E Kerr, Lisa A Conboy, John M Kelley, Thomas J Csordas, Anthony J Lembo, and Eric E Jacobson 2009 “Maybe I Made Up the Whole Thing”: Placebos and Patients’ Experiences in a Randomized Controlled Trial. Culture, Medicine and Psychiatry 33(3):382-411.

    Article  Google Scholar 

  • Kaptchuk, Ted J. 2011 Placebo studies and ritual theory: a comparative analysis of Navajo, acupuncture and biomedical healing. Philosophical Transactions of the Royal Society B: Biological Sciences 366(1572):1849-1858.

    Article  Google Scholar 

  • Kirmayer, Laurence J 2006 Toward a Medicine of the Imagination. New Literary History 37(3):583-605.

    Article  Google Scholar 

  • Kirmayer, Laurence J. 2011 Unpacking the placebo response: insights from ethnographic studies of healing. The Journal of Mind–Body Regulation 1(3):112-124.

    Google Scholar 

  • Kleinman, Arthur 1988 The Illness Narratives. New York: Basic Books.

    Google Scholar 

  • Kodish, Eric, and Stephen G Post 1995 Oncology and Hope. Journal of Clinical Oncology 13(7):1817-1822.

    Google Scholar 

  • Kylma, Jari 2005 Dynamics of hope in adults living with HIV/AIDS: a substantive theory. Journal of Advanced Nursing 52(6):620-630.

    Article  Google Scholar 

  • Labov W (2013) The Language of Life and Death: The Transformation of Experience in Oral Narrative. Cambridge University Press, Cambridge.

    Book  Google Scholar 

  • Lamm, Maurice 1995 The Power of Hope: The one essential of life and love. New York: Rawson Associates.

    Google Scholar 

  • Leung, Karen K., James L. Silvius, Nicholas Pimlott, William Dalziel, and Neil Drummond 2009 Why health expectations and hopes are different: the development of a conceptual model. Health Expectations 12(4):347-360.

    Article  Google Scholar 

  • Lohne, Vibeke, and Elisabeth Severinsson 2004 Hope during the first months after acute spinal cord injury. Journal of Advanced Nursing 47(3):279-286.

    Article  Google Scholar 

  • Lynch, William F 1962 Images of hope: Imagination as healer of the hopeless. Baltimore: Helicon Press.

    Google Scholar 

  • Marcel, Gabriel 1962 Homo Viator. New York: Harper & Row.

    Google Scholar 

  • Mattingly, Cheryl 2010 The Paradox of Hope: Journeys through a clinical borderland. Berkely: University of California Press.

    Google Scholar 

  • McCann, Sharon K, Marion K Campbell, and Vikki A Entwistle 2010 Reasons for participating in randomised controlled trials: conditional altruism and considerations for self. Trials 11(1):31.

    Article  Google Scholar 

  • Moerman, Daniel E 2002 Meaning, Medicine, and the “Placebo Effect”. New York: Cambridge University Press.

    Book  Google Scholar 

  • Moerman, Daniel E, and Wayne B Jonas 2002 Deconstructing the placebo effect and finding the meaning response. Annals of Internal medicine 136(6):471-476.

    Article  Google Scholar 

  • Muhr, Thomas 2011 ATLASti Qualitative Data Analysis Program. Berlin, Germany: ATLAS.ti Scientific Software Development GmbH.

    Google Scholar 

  • Nekolaichuk, Cheryl L., Ronna F. Jevne, and Thomas O. Maguire 1999 Structuring the meaning of hope in health and illness. Social Science & Medicine 48(5):591-605.

    Article  Google Scholar 

  • Nichter, Mark 2008 Coming to Our Senses: Appreciating the Sensorial in Medical Anthropology. Transcultural Psychiatry 45(2):163-197.

    Article  Google Scholar 

  • Nichter, Mark, and Jennifer Jo Thompson 2006 For my wellness, not just my illness: North Americans’ use of dietary supplements. Culture, Medicine and Psychiatry 30(2):175-222.

    Article  Google Scholar 

  • Novas, Carlos 2006 The Political Economy of Hope: Patients’ Organizations, Science and Biovalue. BioSocieties 1(03):289-305.

    Article  Google Scholar 

  • Oliffe, John, Sally Thorne, T. Gregory Hislop, and Elizabeth-Anne Armstrong 2007 “Truth Telling” and Cultural Assumptions in an Era of Informed Consent. Family & Community Health 30(1):5-15.

    Article  Google Scholar 

  • Pergert, Pernilla, and Kim Lützén 2012 Balancing truth-telling in the preservation of hope: A relational ethics approach. Nursing Ethics 19(1):21-29.

    Article  Google Scholar 

  • Polanyi, Michael 1962 Tacit Knowing: Its Bearing on Some Problems of Philosophy. Reviews of Modern Physics 34(4):601-616.

    Article  Google Scholar 

  • Polanyi, M. 1969 Knowing and Being: Essays. London: Routledge and Kegan Paul.

    Google Scholar 

  • Pruyser, Paul W 1963 Phenomenology and dynamics of hoping. Journal for the Scientific Study of Religion 3(1):86-96.

    Article  Google Scholar 

  • Pruyser, Paul W 1986 Maintaining hope in adversity. Pastoral Psychology 35(2):120-131.

    Article  Google Scholar 

  • Ratcliffe, M 2011 What Is It to Lose Hope? Phenomenology and the Cognitive Sciences 1–18.

  • Ritenbaugh, Cheryl, Richard Hammerschlag, Samuel F. Dworkin, Mikel G. Aickin, Scott D. Mist, Charles R. Elder, and Richard E. 2012 Harris Comparative Effectiveness of Traditional Chinese Medicine and Psychosocial Care in the Treatment of Temporomandibular Disorders–Associated Chronic Facial Pain. The Journal of Pain 13(11):1075-1089.

    Article  Google Scholar 

  • Rose, Nikolas, and Carlos Novas 2005 Biological Citizenship. In Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. Aihwa Ong and Stephen J. Collier, eds. Malden, MA: Blackwell Publishing.

    Google Scholar 

  • Schafer, Lisa M, Clarissa Hsu, Emery R. Eaves, Cheryl Ritenbaugh, Judith Turner, Daniel C Cherkin, Colette M Sims, and Karen J Sherman 2012 Complementary and alternative medicine (CAM) providers’ views of chronic low back pain patients’ expectations of CAM therapies: a qualitative study. BMC Complementary and Alternative Medicine 12:234.

    Article  Google Scholar 

  • Scheper-Hughes, Nancy, and Margaret M. Lock 1987 The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology. Medical Anthropology Quarterly 1(1):6-41

    Article  Google Scholar 

  • Simpson, Christy 2004 When Hope Makes Us Vulnerable: A Discussion of Patient–Healthcare Provider Interactions in the Context of Hope. Bioethics 18(5):428-447.

    Article  Google Scholar 

  • Stone, D. A., C. E. Kerr, E. Jacobson, L. A. Conboy, and T. J. Kaptchuk 2005 Patient expectations in placebo-controlled randomized clinical trials. Journal of Evaluation in Clinical Practice 11:77 - 84.

    Article  Google Scholar 

  • Strauss, Claudia 1997 Partly Fragmented, Partly Integrated: An Anthropological Examination of “Postmodern Fragmented Subjects”. Cultural Anthropology 12(3):362-404.

    Article  Google Scholar 

  • Sulmasy, Daniel P., Alan B. Astrow, M. Kai He, Damon M. Seils, Neal J. Meropol, Ellyn Micco, and Kevin P. Weinfurt 2010 The culture of faith and hope. Cancer 116(15):3702-3711.

    Article  Google Scholar 

  • Tambiah, S. J. 1968 The Magical Power of Words. Man 3(2):175-208.

    Article  Google Scholar 

  • Tambiah SJ (1977) The Cosmological and Performative Significance of a Thai Cult of Healing Through Meditation. Culture, Medicine and Psychiatry 1(1):97-132.

    Article  Google Scholar 

  • Tanggaard, Lene 2009 The Research Interview as a Dialogical Context for the Production of Social Life and Personal Narratives. Qualitative Inquiry 15(9):1498-1515.

    Article  Google Scholar 

  • Taylor, Shelley E 1983 Adjustment to Threatening Events: A Theory of Cognitive Adaptation. American Psychologist 38(11):1161-1173.

    Article  Google Scholar 

  • Taylor, Shelley E., and Jonathon D. Brown 1988 Illusion and well-being: A social psychological perspective on mental health. Psychological Bulletin 103(2):193-210.

    Article  Google Scholar 

  • Thompson, Jennifer J, Cheryl Ritenbaugh, and Mark Nichter 2009 Reconsidering the Placebo Response from a Broad Anthropological Perspective. Culture, Medicine & Psychiatry 33(1):112-152.

    Article  Google Scholar 

  • VanMannen, Max 1977 Linking Ways of Knowing with Ways of Being Practical. Curiculum Inquiry 6(3):205-228.

    Article  Google Scholar 

  • Webb, Darren 2007 Modes of Hoping. History of the Human Sciences 20(3):65-83.

    Article  Google Scholar 

  • Wikan, Unni 1990 Managing turbulent hearts: A Balinese formula for living. Chicago: University of Chicago Press.

    Google Scholar 

  • Wiles, Rose, Cheryl Cott, and Barbara E. Gibson 2008 Hope, expectations and recovery from illness: a narrative synthesis of qualitative research. Journal of Advanced Nursing 64(6):564-573.

    Article  Google Scholar 

  • Yorks L, Kasl E (2006) I Know More Than I Can Say: A Taxonomy for Using Expressive Ways of Knowing to Foster Transformative Learning. J Transform Educ 4:43-64

    Article  Google Scholar 

Download references

Acknowledgments

Funding for this research was provided by a Grant (U01-AT002570) from the National Center for Complementary and Alternative Medicine, the National Institutes of Health. The authors thank Allison L. Hopkins, Elizabeth Sutherland, Jennifer Jo Thompson, Karen J. Sherman, Samuel F. Dworkin, and our participants and study practitioners for contributions to the research and to the conceptualization of this manuscript.

Author information

Authors and Affiliations

  1. Department of Family and Community Medicine, School of Anthropology, University of Arizona, Tucson, AZ, USA

    Emery R. Eaves & Cheryl Ritenbaugh

  2. School of Anthropology, Department of Family and Community Medicine, College of Public Health, University of Arizona, Tucson, AZ, USA

    Mark Nichter

Authors
  1. Emery R. Eaves
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Mark Nichter
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Cheryl Ritenbaugh
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Emery R. Eaves.

Ethics declarations

Conflict of interest

Emery R. Eaves declares that she has no conflict of interest. Mark Nichter Declares that he has no conflict of interest. Cheryl Ritenbaugh declares that she has no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. All procedures were approved by the University of Arizona Committee for the Protection of Human Subjects, and the Oregon College of Oriental Medicine Institutional Review Board.

Funding

This study was funded by the National Center for Complementary and Alternative Medicine, the National Institutes of Health (Grant Number U01-AT002570).

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Eaves, E.R., Nichter, M. & Ritenbaugh, C. Ways of Hoping: Navigating the Paradox of Hope and Despair in Chronic Pain. Cult Med Psychiatry 40, 35–58 (2016). https://doi.org/10.1007/s11013-015-9465-4

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11013-015-9465-4

Keywords

Search

Navigation