“I miss who I used to be,” she says softly. We sit for a moment, both considering the limitations of life lived with chronic pain and the sense of self felt left behind. She pauses for a moment, perhaps to consider the climate of this space – another clinic, another doctor, another evaluation, another day for this now familiar story – and chooses to continue. “Sometimes, I just feel like a different person now.” She looks to me, perhaps expecting dissent or dismissal, as she had described from numerous past providers. No such rebuttal here. We both knew that in many ways, she was painfully right.
As a pediatric pain psychologist, exploring pain experiences with youth is part of my daily work. Hundreds of conversations later, I still hold solemn recognition for the weight of identity loss these patients and their families often share.
I am concerned that…
It worries me that…
How do we deal with…
What’s going to happen if…
Perfect attendance, active athlete, social butterfly, happy-go-lucky.
Missed days, always in bed, not invited, easily frustrated.
A different person.
Earlier this week, I tuned in to a talk discussing the concept of identity paralysis, a state of feeling stuck in being unable to develop or understand one’s own identity (Toubiana et al.). Multiple factors can contribute – pressure and expectations, perfectionism, past trauma, fear of change – much like chronic pain. These conversations, my young patients, and their stories came to mind.
I miss who I used to be…
I don’t know who I am anymore…
Their words and stories of “stuck-ness” seemed aptly captured by this phenomenon.
It seems unsurprising that the onslaught of navigating chronic pain and its limitations would seemingly stunt, divert, and lengthen the process for identity formation, especially in such formative periods of adolescence and young adulthood. Adolescence is a key period for the complex and wondrous process of developing a stable sense of self (Erikson). Researchers have largely agreed that identity formation includes progressive shifts between states of exploration of and eventual commitment to chosen identity domains (Meeus). It is critical then, for youth to find opportunities to experiment with values, beliefs, hobbies, and friendships. For those who experience chronic pain, changes in the ability to perform certain actions, others’ reactions to their pain, and mood and temperament effects may all disrupt this process (Voorhees). When a teen has identified “talented athlete” as a budding identity commitment, only to be significantly and indefinitely sidelined by chronic pain, it is no wonder the path towards identity achievement seems suddenly blockaded. In the emotional reckoning that comes with uncertainty and loss, patients must grapple with not just who they are but who they can (now) ultimately become. Yet, as we consider support for pediatric chronic pain coping, the push, from both parents and practitioners, often seems to be towards a return to who these young patients “used to be.” Instead, perhaps we could be moving towards the more adaptive “who they will become” through the navigation of a major life challenge.
In the business sector, it has been suggested that pathways for avoiding identity paralysis include acceptance of change, crafting a cohesive story to bridge past and present, acknowledging challenging emotions, focusing on other meaningful identity domains, and cultivating dreams for the future (Toubiana et al.). Given the empirical support we have for the benefits of chronic pain acceptance and acceptance-based therapies for improving quality of life (Pielech et al.), I cannot help but wonder if a similar interventional shift could provide my patients, and others in similarly altered health and life circumstances, a more effective path forward.
As clinicians, we have the incredible opportunity to help others craft meaningful stories. In those initial conversations, and then in the shaping and processing of patients’ illness narratives, we may choose to listen, absorb, and validate; but also, to help move the narrative from “I miss…” to “I can be…,” from identity paralysis to re-exploration and recommitment. Adaptive coping to chronic illness often requires individuals to develop a coherent illness identity, or ability to effectively incorporate a diagnosis into one’s overall understanding of how to relate to the world (Morea et al.). Towards this aim, it follows that shifting from a sole focus on returning to one’s baseline to promoting curiosity about an evolved and changing identity may provide a more reliable pathway forward. Pain acceptance, narrative development, emotional health support, values identification, and goal-setting strategies would all be applicable in this regard. To start, clinicians might facilitate this through helping patients to anticipate and prepare for common relevant identity shifts, emphasizing that some shifts may in fact be positive and helpful, and empowering individuals to more thoughtfully identify and pursue their values, despite chronic illness or pain.
My patients and I often meet for weeks or even months for pain psychology support. We cover pain coping skills teaching and practice, graduated reintegration to daily life routines, and enhance mood and stress management. At the end of our course, we typically take some time to debrief their progress. Four months following her initial descriptions of missing her “old self,” one patient, in her 17-year-old wisdom, reflected, “Dealing with chronic pain is a lot about change. It makes you better at recognizing what affects your body. It makes you know better what is important to you. It makes you better at taking things one day at a time. It’s like it makes you a whole different person.”
Erikson, Erik H. “Identity: Youth and Crisis. 1968.” Journal of Extension, vol. 6, no. 4, 1968.
Meeus, Wim. Adolescent Development : Longitudinal Research into the Self, Personal Relationships and Psychopathology. First edition., Routledge, 2018.
Morea, Jessica M., et al. “Conceptualizing and Measuring Illness Self-Concept: A Comparison with Self-Esteem and Optimism in Predicting Fibromyalgia Adjustment.” Research in Nursing & Health, vol. 31, no. 6, Dec. 2008, pp. 563–75. PubMed, https://doi.org/10.1002/nur.20294.
Pielech, Melissa, et al. “Acceptance and Commitment Therapy for Pediatric Chronic Pain: Theory and Application.” Children, vol. 4, no. 2, Jan. 2017. PubMed Central, https://doi.org/10.3390/children4020010.
Toubiana, Madeline, et al. “When a Major Life Change Upends Your Sense of Self.” Harvard Business Review, 28 Jan. 2022. hbr.org, https://hbr.org/2022/01/when-a-major-life-change-upends-your-sense-of-self.
Voorhees, Heather L. “‘I Was Literally Just Not Myself’: How Chronic Pain Changes Multiple Frames of Identity.” Health Communication, vol. 38, no. 8, July 2023, pp. 1641–53. DOI.org (Crossref), https://doi.org/10.1080/10410236.2022.2025702.
Image Credit: 13th self-portrait. Charnley, Bryan. Part of: Bryan Charnley Self-portraits. June 13, 1991. Source: Wellcome Collection.