Whatever Our Souls Are Made Of: Reclaiming Identity from Illness

“Whatever our souls are made of, his and mine are the same.”
— Emily Brontë, Wuthering Heights

***Note: Some of what I share here might sound familiar if you’ve followed my earlier reflections on labels, especially those conversations I’ve had about my son and his dyslexia diagnosis . This piece is a little different. It’s not just about how labels shape perception; it’s about how illness or grief can start to reshape identity from the inside out. It’s about the moments when your story feels hijacked by your symptoms, and what the research says about how to gently take that authorship back.

The Diagnostic Shadow

Illness can cast a long shadow over identity. Many patients report feeling that their diagnosis becomes a defining label. A lens through which they and others see them. Modern research is increasingly examining this phenomenon, often referred to as "illness identity": the extent to which someone integrates a disease into their sense of self (Commissariat, Helgeson, & Wiebe, 2025). A growing body of clinical studies explores how chronic illness or grief can possess one’s identity, often with profound psychological and social consequences.

Illness identity refers to how much a person’s chronic condition is incorporated into their self-concept (Sematlane, Knight, Masquillier, & Wouters, 2022). Health psychologists have identified four dimensions of illness identity: engulfment, rejection, acceptance, and enrichment. Engulfment describes a state in which the illness dominates one’s identity, such that the person feels the illness invades all aspects of life. Rejection refers to a denial of the illness as part of identity. Acceptance describes acknowledging the illness as one aspect of the self, while enrichment involves finding positive meaning or growth through the illness experience (Oris et al., 2018).

Why It Matters & The Weight of The Label

Acceptance and enrichment are considered adaptive forms of illness identity, whereas rejection and engulfment are often maladaptive (Shneider, Robbertz, & Cohen, 2024). Patients who report high levels of engulfment tend to experience worse health outcomes and lower psychological well-being. Conversely, those who integrate illness into their identity in positive ways often report better emotional adjustment and improved self-care. For instance, individuals living with inflammatory bowel disease who viewed their illness as an accepted part of their identity demonstrated better adherence to management practices (Hajdarević, Norberg, Lundman, & Hörnsten, 2025).

The psychological toll of being identified primarily by a diagnosis is substantial. Patients often describe feeling reduced to their disease in the eyes of others and, over time, in their own self-perception. In psychiatry, this dynamic is referred to as self-stigma, where a person internalizes a diagnostic label. Research has shown that such identification contributes to hopelessness, low self-esteem, and poorer recovery outcomes (Yanos, DeLuca, Roe, & Lysaker, 2020).

This dynamic is similarly evident in medical diagnoses. Cancer survivors often describe profound shifts in self-concept following treatment. While some embrace the label "survivor," others find it burdensome. The diagnosis often necessitates a reconfiguration of identity, especially when physical changes or altered social roles make prior self-concepts feel obsolete (Smith, Klassen, Coa, & Hannum, 2016). The individual becomes consumed by the role of patient, losing sight of their pre-illness self.

Labeling from others reinforces this identity distortion. Referring to someone as "the diabetic" or "the cancer patient" may seem convenient in clinical contexts but can be psychologically detrimental. Over time, such labeling encourages patients to internalize a narrow view of self, which can result in isolation, diminished self-worth, and a sense of living in a story written by others. These experiences align with what Fuchs and Schlote (2021) describe as existential loss of identity.

In grief, this erosion of identity can be particularly acute. Complicated grief is often marked by identity confusion. Individuals may report that a part of themselves died with their loved one. A study by Bellet et al. (2020) found that bereaved individuals experiencing complicated grief could list significantly fewer self-descriptions than those with adaptive grieving. The grief becomes a haunting presence, crowding out other aspects of identity and obstructing emotional healing.

The Narrative Turn

A promising body of research highlights narrative as a pathway to identity reconstruction. Narrative medicine encourages patients to retell their experiences in ways that affirm agency and meaning. According to Frank (1995), patients are "wounded storytellers" who use narrative to voice what clinical language cannot capture. By reframing their experiences, individuals can reposition illness as part of their story, not its totality.

Clur and Barnard (2024) describe a three-stage process by which individuals reconstruct identity following chronic illness: broken identity, vision of an ideal self, and reconstruction of a meaningful self. Patients move from a fractured sense of self toward a revised, resilient identity. The study highlights the importance of fostering a purposeful, connected, and determined self. This reconstruction is not a denial of illness but a re-contextualization of it.

This approach aligns with the practice of narrative reframing. Research shows that individuals who engage in meaning-making, such as benefit-finding or value reflection, report better psychological outcomes, including lower depression and greater post-traumatic growth (Eisma & Stroebe, 2021).

What Literature Teaches Us

Literature provides powerful metaphors for these experiences. In Emily Brontë’s Wuthering Heights, Catherine claims, "Whatever our souls are made of, his and mine are the same." This total fusion of identities mirrors the psychological engulfment that patients often describe. After Catherine's death, Heathcliff is haunted by her presence, confessing, "I cannot live without my soul." The parallel to prolonged grief is striking. Individuals may feel as if the deceased lives on inside them, blurring the boundary between self and other. Susan Sontag cautioned against rigid metaphors in illness narratives, warning that they can pathologize or stigmatize. However, when patients are empowered to choose their own metaphors and narrative frameworks, these stories can facilitate healing and meaning-making (Frank, 1995).

Why This Work Matters

Helping patients separate their identity from their diagnosis has concrete benefits. Emotional well-being improves when individuals view themselves as more than their illness. Psychological research indicates that maintaining a multifaceted identity reduces depression and fosters hope (Yanos et al., 2020). Adaptive health behaviors also improve when patients see themselves as active agents rather than passive victims. This distinction supports better self-management and resilience (Commissariat et al., 2025).

Social relationships benefit when identity is preserved. Friends and family are more likely to engage meaningfully when the individual maintains roles beyond that of patient. Finally, individuals with a distinct, resilient identity demonstrate greater adaptability, especially in chronic conditions where cure is not possible but quality of life remains a central goal.

Storyline Health Navigation supports this evidence-based identity work. By guiding patients to explore and re-author their narratives, the model encourages healing, autonomy, and clarity. Illness is part of the story, but never the whole story. Reclaiming authorship of one’s identity is not only emotionally liberating; it is clinically supported and deeply humanizing.

References

• Bellet, B. W., LeBlanc, N. J., Nizzi, M. C., Carter, M. L., van der Does, F. H. S., Peters, J., ... & McNally, R. J. (2020). Identity confusion in complicated grief: A closer look. Journal of Abnormal Psychology, 129(4), 397–407. https://doi.org/10.1037/abn0000520 pubmed.ncbi.nlm.nih.govpubmed.ncbi.nlm.nih.gov

• Commissariat, P. V., Helgeson, V. S., & Wiebe, D. J. (2025). Identity with diabetes: Unpacking an overlooked but essential dimension of the diabetes experience. Current Diabetes Reports, 25(1), 45. https://doi.org/10.1007/s11892-025-01600-7 pubmed.ncbi.nlm.nih.gov

• Hajdarević, S., Norberg, A., Lundman, B., & Hörnsten, Å. (2025). Becoming whole again – Caring for the self in chronic illness: A narrative review of qualitative empirical studies. Journal of Clinical Nursing, 34(3), 754–771. https://doi.org/10.1111/jocn.17332 pubmed.ncbi.nlm.nih.govpubmed.ncbi.nlm.nih.gov

• Shneider, C. E., Robbertz, A. S., & Cohen, L. L. (2024). A systematic review of relationships between illness identity and health-related outcomes in individuals with chronic illnesses. Journal of Clinical Psychology in Medical Settings, 31(1), 130–142. https://doi.org/10.1007/s10880-023-09973-1 pubmed.ncbi.nlm.nih.gov

• Clur, L. S., & Barnard, A. (2024). Reconstructing a meaningful self: The identity work of people living with chronic disease. Qualitative Health Research, 35(13), Article 10497323241303393. https://doi.org/10.1177/10497323241303393 pubmed.ncbi.nlm.nih.govpubmed.ncbi.nlm.nih.gov

• Yanos, P. T., DeLuca, J. S., Roe, D., & Lysaker, P. H. (2020). The impact of illness identity on recovery from severe mental illness: A review of the evidence. Psychiatry Research, 288, 112950. https://doi.org/10.1016/j.psychres.2020.112950 pubmed.ncbi.nlm.nih.gov

• Smith, K. C., Klassen, A. C., Coa, K. I., & Hannum, S. M. (2016). The salience of cancer and the ‘survivor’ identity for people who have completed acute cancer treatment: A qualitative study. Journal of Cancer Survivorship, 10(3), 457–466. https://doi.org/10.1007/s11764-015-0489-0 pmc.ncbi.nlm.nih.gov

• Sematlane, N., Knight, L., Masquillier, C., & Wouters, E. (2022). A cross-cultural adaptation and validation of a scale to assess illness identity in adults living with a chronic illness in South Africa: A case of HIV. AIDS Research and Therapy, 19(1), 44. https://doi.org/10.1186/s12981-022-00454-2 researchgate.netresearchgate.net

• Fuchs, T., & Schlote, A. (2021). ‘I am just a shadow of who I used to be’ – Exploring existential loss of identity in chronic illness. Journal of Evaluation in Clinical Practice, 27(3), 645–654. https://doi.org/10.1111/jep.13481 researchgate.net

• Oris, L., et al. (2018). Illness identity in adults with chronic illness: Scale development and validation. Journal of Clinical Psychology in Medical Settings, 25(4), 429–440. https://doi.org/10.1007/s10880-018-9552-0 researchgate.netresearchgate.net

• Eisma, M. C., & Stroebe, M. S. (2021). Self-identity processing and grief: The role of self-concept clarity, self-disclosure, and avoidance. Personality and Individual Differences, 171, 110531. https://doi.org/10.1016/j.paid.2020.110531 apa.org