This chapter describes some of the unique challenges and opportunities associated with integrating the concepts of spirituality, chronic illness, and healing in everyday life, and offers specific implications for a more holistic approach for practical health-care disciplines. How can individuals living with long-term, chronic physical and/or emotional illness respond creatively and meaningfully to a vulnerable and wounded body/mind/spirit? What ideas, attitudes, and values do we find in our culture, society, and spiritual traditions that help or hinder people in this task? How can people address the anger, fear, vulnerability, uncertainty, and longing for a cure that neither biomedicine nor religion can manifest for many forms of chronic illness? How can people discover and live a whole and meaningful life in spite of ongoing illness and pain? How can loved ones and clinical providers who interact with them respond in ways that promote spiritual solace and healing when physical cure is unlikely?

Diverse spiritual traditions have long associated breath and breathing with spirituality and spiritual practice. Multiple forms of Buddhist meditation, Christian contemplative prayer, the Indian practice of Pranayama, and the Chinese practice of Qi Gong—all seek to cultivate spirituality, healing, and well-being by emphasizing conscious, relaxed, and present-moment breathing. But all of these diverse spiritual traditions also recognize the fact that people live and breathe by paradoxical dispositions rooted in fear and hope, anxiety and compassion, integration and separation. Any such dispositional tendencies, singularly or in combination, can be the spirit that shapes individual and collective lives as people struggle to live creatively and meaningfully moment by moment, day by day, in the presence of the ongoing vulnerability and uncertainty that accompany many forms of chronic illness.

Spirituality, like air or breath, is something that people are filled with, something that connects people with the surrounding atmosphere, something that human bodies depend on for nurture and sustenance, but this link between the spiritual and the material has not always been emphasized in some religious traditions. For example, some forms of Western Christianity have tended to view the spiritual in contrast to the physical, a concern of the soul rather than the body. This viewpoint can lead to a dualistic tendency to see the spirit as sacred and the body as profane. This perspective has found expression in the restriction of Western biomedical care to concern for the body in its disease or pain, sometimes to the neglect of the whole person in his or her spiritual and cultural understanding of suffering and healing. This dualistic approach may associate spirituality as something interior and private, rather than embodied, relational, social, and environmental; and leaves the sufferer to try to integrate a rigid, one-dimensional construct of disease, as explained and treated by the health-care establishment, into a complex, highly dimensional and personal illness experience. For example, health-care providers may be able to easily explain the autoimmune and inflammatory processes associated with a chronic disease like rheumatoid arthritis or Crohn’s disease. But all the information in the world about treatment options, possible outcomes, and the expected course of the disease does not prepare patients for the drastic toll the disease will take in every other dimension of life; or equip them to respond in ways that promote spiritual health and well-being. The individual’s spiritual response to the literal, embodied rejection of self that occurs in many forms of autoimmune disease is as real and consequential to the whole person as is the physiological response. Spirituality situates people in relational contexts that are much wider and denser than the individual. Spirituality, as it is being broadly described in this chapter, can be understood as a way of embodied dwelling in the world, a lived experience rooted in a holistic availability to learn and grow, to create meaning and purpose, from the dynamic relation among spirit, body, mind, other people, world, and multiple sources of transcendence.

One way that spiritual traditions tend to address this dynamic relationship is through the language of transcendence and immanence, connection and isolation (Garrett, 2001, 49; Cook, 2004; Bouma, 2000; Stoll, 1989). The experience of transcendence is the experience of living in a world that extends infinitely beyond one’s immediate, embodied location (Schutz, 1962, pp. 306–356; Schutz & Luckmann, 1983, pp. 106–148). To be human is to be limited by the transcendence of time (past and future); space (here and there); embodiment; and other human beings with their unique perspectives, society, and nature. Yet to be human is to be discontent with these limitations and to seek ways to be more connected to other human beings, to other cultures and societies, and even to other provinces of meaning such as dreams or to a God or Goddess of religious belief. Spirituality is the lived expression of giving meaning and purpose to life in the midst of the ongoing paradoxical relationship of immanence and transcendence, limitation and possibility, isolation and unification, illness and healing, which are always co-presented in embodied encounters with the world. Human beings are perpetually navigating multiple transcendent boundaries and changing dimensions of living while dwelling in a fragile and vulnerable body. The ongoing inner and relational adaptation, coping, or transformation to this perpetual paradox can be described by a variety of spiritual terms such as awakening, enlightenment, grace, wholeness, balance, harmony, mindfulness, or being centered.

The relationship between the terms spirituality and religion has been complicated and controversial (Koenig, 2000; Sawatzsky et al., 2005). The English word religion has as its root the Latin term relegare, which means “to tie or bind together” (Fasching & Dechant, 2001). Spirituality, as the term is being described and used in this chapter, is not bound with a specific theological or ideological model. Spirituality neither requires nor negates belief in a god or gods, it does not presume participation in a particular set of rituals, and it is not tied to any specific sacred texts. For many people spirituality is forged and cultivated by participation in a specific religious tradition, while for others it is not affiliated with religious membership. Many people use the religious rituals, values, texts, and beliefs they practice as a framework to understand the purpose and meaning of spirituality in their own lives. Religious traditions tend to be more institutionalized and compartmentalized with standard models for interpreting and responding to ethical questions, the belief in divine beings, or the experience of chronic illness. Looking at spirituality as both integral to, yet distinct from, a particular religious affiliation is important for addressing spirituality with people who might otherwise find it stigmatizing to explore because of its association with organized religious models of interpretation and response. In addition, the concept of spirituality is tempered by humility or an availability to learn from multiple religious traditions and worldviews, rather than an outright rejection of practices and ideas that are not part of a specific religious model or ideological framework. Spiritual humility empowers people to question taken-for-granted assumptions in order to be receptive to new possibilities for creative thought and transformative experience.

Since spirituality is describable but not easily definable, a challenge is to make spirituality more comprehensible while recognizing that for individuals its meaning and experience is largely subjective, unique, flexible, and transforming. The experience of spirituality arises through the emergence of paradox, novelty, and uncertainty that cannot be mastered or categorized by objective meanings or abstract scientific or religious models. Grounded by the perpetual immanence of a vulnerable body, spirituality embraces the full spectrum of human experience including joy and pain, suffering and healing, disease and health, immanence and transcendence, life and death. It is imperative for health-care providers to acknowledge the spectrum that extends beyond the measurable confines of physical disease, and allow a patient’s spirituality to inform the provider’s response to the patient’s multidimensional experience of chronic illness.

Livneh and Antonak (2005) identified eight life areas affected by chronic illness: (a) frequent and increased stress; (b) psychosocial and physical trauma connected to the onset of the disease process; (c) the experience of grief associated with the loss of abilities, functionalities, roles, or relationships; (d) alterations in body image due to disease and/or side effects of medical treatment for disease; (e) changes in self-understanding associated with present and future vocational and family expectations; (f) coping with uncertainty and unpredictability in terms of disease symptoms like pain and treatment process like side effects of drug therapy; (g) new or increased experiences with prejudicial or biased responses from others; and (h) alterations in quality of life requiring a process of on-going adaptation and adjustment.

Chronic illness can affect all elements of a person’s life—physical, social, spiritual, vocational, and psychological. In addition, chronic illnesses and their debilitating symptoms are very real but sometimes undetectable or invisible to the casual observer or even close family members, which may heighten frustration and anxiety (Stone, 1995). Finally, most people can understand and sympathize with episodic illness from which people recover (bone mends, pain subsides, scar heals) or fatal illnesses which end in death. And while health-care providers may understand the long-term physiological implications of chronic disease processes, they encounter patients only episodically when the patient enters the health-care environment. Providers, therefore, may lack insight into the reality of a patient’s daily life and needs. Chronic illnesses are neither episodic nor terminal. Therefore, they do not raise the same issues about cure or impending death, but challenge the individual to cultivate meaning and healing in the midst of daily, ongoing, long-term illness, pain, suffering, adaptation, and transformation. Faced with all of these uncertainties and complexities, individuals are often forced to question many of their taken-for-granted assumptions and reassess their lives from a new perspective (Bishop, 2005; Kleinman, 1988; Charmaz, 1991 & 1995; Kaye & Raghavan, 2002; Wills, 2007; Gockel, 2009; Wendell, 2001; Garrett, 2002).

For example, most people with chronic illnesses do not fit, and therefore must question, the dominant acute care model evident in the history of Western medical care and education. The acute care model of illness primarily attends to physical manifestation of the disease in an individual patient and associates health and well-being with eradication of the disease state. Acute care approaches to disease or pain stress a restitution narrative f...