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For many of us, a sense of purpose is a fundamental psychological and existential need. Indeed, decades of health psychology research link a strong sense of purpose in life with less illness and a lower mortality risk (Alimujiang et al.; Shiba et al.; Boyle et al.). Conversely, chronic illness and pain are associated with significant reported declines in a sense of purposefulness (Sias and Turtle). In the clinical practice of pain psychology, these themes surface consistently through patients’ often raw and vulnerable reflections of loss and disruption. Their stories prompt powerful questions about why we live, what we value, and how we thrive.
A Crisis of Meaning
Chronic illness and disability often disrupt the foundational aspects of identity, stripping away long-held roles and sources of meaning. Tasks once completed easily, goals that seemed promising, perceptions of self formerly held closely are swept devastatingly out of reach. Amidst these losses, patients grieve the failure of the former pillars of their sense of purpose: productivity, autonomy, social engagement. They cite meaningful things left behind: work, physical ability, friends, and a sense of well-being. In many conversations, the heavy, underlying question lingers, “What does my life mean when former sources of meaning are gone?” Perhaps as importantly, how does one reconstruct meaning when former touchstones have faded away?
The Psychology of Meaning-Making
Research in psychology supports the idea that meaning-making is often an important contributor to well-being for those facing chronic illness. In psychology literature, meaning refers to a general sense of coherence: a “mental representation of possible relationships among things, events, and relationships” (Baumeister, p. 15). Related constructs include sense of purpose, development of global beliefs, and the process of meaning-making (Roepke et al.). Especially pertinent to chronic illness and pain patients, meaning-making refers to an ongoing search or reappraisal of meaning and represents a key form of coping in the face of an upending event (Roepke et al.; Steger et al.). In this vein, meaning-making can also be informed by the study of posttraumatic growth, which has been described to encompass endeavors such as developing new self-formations, growing greater appreciation of one’s vulnerability and relationships, and recognizing changes in worldview (Calhoun and Tedeschi).
In terms of clinical practice, studies in existential therapeutic approaches and of Acceptance and Commitment Therapy (ACT) emphasize that loss and suffering do not have to negate meaning; rather, meaning can emerge through reconnecting with values via new and/or modified pursuits. This re-arranging of relationship and perspective may be bolstered by an expansion of psychological flexibility and acceptance of life changes alongside intentional nurturing of meaningful relationships, personal growth, and moments of beauty (Hayes et al.). For instance, research has shown that those who engage in creative outlets, mentorship, advocacy, or spiritual practices often report a stronger sense of purpose post-illness. Meaning-making often arises from an ability to relinquish the old self and begin to appreciate an evolved one – a self that integrates limitations without being wholly defined by them (King and Hicks; Kashdan et al.).
Case Study: 100 Names for Love and the Reinvention of Identity
A favorite read on my bookshelf is Diane Ackerman’s 2011 memoir, 100 Names for Love, which provides a compelling case study of meaning-making in the aftermath of illness (Ackerman). When Diane Ackerman’s husband, the prolific writer Paul West, suffered a severe stroke that left him with global aphasia, his ability to engage in the world of language—a core aspect of his identity—was compromised. Deprived of the ability to write and express himself as he once did, he faced not just a medical crisis but an existential one.
With great care and patience, Ackerman helped West find new ways to engage with language, encouraging him to rework his relationship with words from one of resolute mastery to playful improvisation. He found new ways to describe ordinary objects (“light dancing mailbox” for computer, p. 255), imaginative workarounds for phrases formerly uttered without second thought (“Do you feel attached to that mug?” for “Is [that mug] safe there?”, p.288). Over time, West began to write again. His rehabilitative process entailed not only redeveloping a functional framework for language but also reimagining his identity as a writer. He discovered novel expressions of creativity, learning to better harness the fragmented and poetic ways in which his changed brain worked. West’s journey highlights the importance of meaning-making and how long-held values and a sense of purpose can persist and evolve through traumatic change, even when that loss is profound. Poignantly, Ackerman too underwent her own progression of meaning-making as she learned to see her relationship with West in a new light, embracing a dynamic in which language and linguistic play became a shared exploration rather than fixed expectation. Her personal journey of rediscovering love (and life) one day at a time suggests meaning can also be co-created in relationships and through co-adaptation to changing circumstances.
An Ongoing Process
Reinventing purpose after chronic illness is a dynamic process. While initial loss can be overwhelming, stories like that of Paul West illustrate that meaning-making can bring both challenge and resilience. We recognize that meaning is not solely derived from what we do but perhaps more importantly, how we relate to our experiences, our relationships, and the world around us.
Works Cited:
Ackerman, Diane. One Hundred Names for Love: A Memoir. W. W. Norton & Company, 2011.
Alimujiang, Aliya, et al. “Association Between Life Purpose and Mortality Among US Adults Older Than 50 Years.” JAMA Network Open, vol. 2, no. 5, May 2019, p. e194270. PubMed, https://doi.org/10.1001/jamanetworkopen.2019.4270.
Baumeister, Roy F. Meanings of Life. Guilford press, 1991.
Boyle, Patricia A., et al. “Purpose in Life Is Associated with Mortality among Community-Dwelling Older Persons.” Psychosomatic Medicine, vol. 71, no. 5, June 2009, pp. 574–79. PubMed, https://doi.org/10.1097/PSY.0b013e3181a5a7c0.
Calhoun, Lawrence G., and RG Tedeschi. Trauma and Transformation: Growing in the Aftermath of Suffering. 1995.
Hayes, Steven C., et al. Acceptance and Commitment Therapy: An Experiential Approach to Behavior Change. Guilford Press, 1999, pp. xvi, 304.
Kashdan, Todd B., et al. “Purpose in Life: A Resolution on the Definition, Conceptual Model, and Optimal Measurement.” American Psychologist, vol. 79, no. 6, Sept. 2024, pp. 838–53. DOI.org (Crossref), https://doi.org/10.1037/amp0001223.
King, Laura A., and Joshua A. Hicks. “The Science of Meaning in Life.” Annual Review of Psychology, vol. 72, Jan. 2021, pp. 561–84. PubMed, https://doi.org/10.1146/annurev-psych-072420-122921.
Roepke, Ann Marie, et al. “Meaning and Health: A Systematic Review.” Applied Research in Quality of Life, vol. 9, no. 4, 2014, pp. 1055–79, https://doi.org/10.1007/s11482-013-9288-9.
Shiba, Koichiro, et al. “Associations Between Purpose in Life and Mortality by SES.” American Journal of Preventive Medicine, vol. 61, no. 2, Aug. 2021, pp. e53–61. PubMed, https://doi.org/10.1016/j.amepre.2021.02.011.
Sias, Richard, and Harry J. Turtle. “Assessment of the Link between Life Purpose and Health.” Journal of Public Health (Oxford, England), 2024, https://doi.org/10.1093/pubmed/fdae301.
Steger, Michael F., et al. “Meaning in Life and Health: Proactive Health Orientation Links Meaning in Life to Health Variables Among American Undergraduates.” Journal of Happiness Studies, vol. 16, no. 3, 2015, pp. 583–97, https://doi.org/10.1007/s10902-014-9523-6.