Beyond Self-Identifying With a Disease
Beyond Self-Identifying With a Disease
Joy Stepinski, MSN, RN-BC
January 1, 2026
How often have you heard someone speak as though they are their disease? Common expressions like “my anxiety,” “my heart condition,” “my cancer,” or “I am diabetic” easily become part of everyday language. We have probably all said statements like this, even referring to a minor cold as “my cold.” However, self-labeling and self-identification of a condition may cause unintended consequences. When a health condition becomes part of one’s self-concept, coping and healing can be hindered. Research shows that coping strategies can play an important role in physical and mental health in the face of chronic disease.
Self-conception is the perception a person has of oneself. Certain elements, such as one’s profession, cultural background, or nationality, influence self-image and self-identification. A medical diagnosis can significantly change this image, especially with chronic illness. Individuals navigate symptoms, treatments, and limitations, which may change how they view themselves in the world around them [1].
Health literature distinguishes between chronic conditions that are outwardly visible (e.g., paraplegia) and those that are concealable (e.g., endometriosis, diabetes, fibromyalgia) [1]. A physical or psychological limitation may require a significant adaptation. Researchers note that “ingrained personal views and valued attributes, such as strong personal control, can be met with stark opposition with a sudden illness diagnosis, subsequently requiring to be accommodated into one’s evolving illness self-concept” (p. 138).
Adapting to life with an illness involves confronting a new reality. Some may become preoccupied with pervasive thoughts about their chronic condition. One researcher analyzed interviews on how chronic disease affected the sense of self [2]. Of 57 people diagnosed with chronic conditions, results showed feeling less freedom and independence, loss of control due to life restrictions and unpredictability of the disease (e.g., side effects from medications, inability to drive, sexual impotence), and social isolation. Others expressed concerns about being a burden on their loved ones, facing financial hardship, and feeling a heightened sense of vulnerability.
In one survey of 446 people [1] with concealable illnesses, findings showed that chronic diseases were associated with internalized stigma, causing a reduced sense of control and diminished personal growth. The study used the Stigma Scale for Chronic Illness (SSCI), analyzing 13 of 24 queries specifically related to internal stigma, such as feeling embarrassed, worrying about being a burden to others, and considering oneself as different. Internal stigma was associated with internalizing the perceived societal attitudes and negative stereotypes. In other words, people sense negative expectations from society, which impacts how they view themselves and cope.
A separate study examined whether illness identity related to healthcare use. In an observational cohort study, 216 adults with congenital heart disease were followed for one year. The participants self-reported one of four feelings. These included engulfment (being controlled by the illness), rejection (viewed as a threat to self, where the person often neglected disease management), acceptance (acknowledgement of the illness without feeling overwhelmed), and enrichment (considered as positive and contributes to self-growth) [3].
According to the authors, an Illness Identity Questionnaire was used. The subjects reported on whether they avoided thinking about their illness, felt that their illness consumed their thoughts, and if they had become a stronger person. This was compared to the quantity of healthcare visits over six months. The results concluded that the greater the engulfment, the more hospitalizations and doctor visits occurred. The researchers discussed that patients may feel overwhelmed by their illness and be more apt to seek out medical care, or that the necessity of healthcare use may lead to engulfment.
In the book Radical Remission by Kelly Turner [4], the author interviewed people who survived cancer despite poor prognoses. One theme she identified was the influence of mindset on the body. Patients’ beliefs and attitudes often affect health outcomes. For example, when an individual is excited about life and living, they may experience a more favorable outcome than when focused on fear or hopelessness.
Other positive coping methods are discussed in research on successful adaptation to chronic illness [5]. In a qualitative study, 35 individuals with a rare genetic disorder were interviewed to understand the process of adaptation and the discovery of meaning in the face of the disease. Several themes emerged from the analysis. For example, participants reported that practicing self-compassion enabled them to share about an illness more easily. Increased self-awareness of thoughts and feelings allowed participants to choose how to respond to challenging situations, such as focusing on periods of wellness. Gratitude and living in the present moment were important to successful adaptation.
Identity was also discussed. Participants shared that integrating the illness into their lives was crucial in adapting, instead of letting the condition define them. Regarding their chronic disease, one individual stated, “But at the end of the day, that’s not all of who I am. I can be so much more than the person that was just a victim to an illness” (p. 121).
Although chronic illness is challenging, coping strategies may offer ways to live with an illness without self-identifying with the disease. Individuals often navigate changes in daily routines, body image, and perceived control. Yet reframing an illness may also bring freedom. As research on successful adaptation strategies suggests, opportunities for self-growth may emerge. When an illness serves as a teacher, resilience, self-determination, and confidence may flourish. This new insight may influence health-related decisions, such as advocating for oneself, seeking information, and actively participating in one’s care. Rather than defining a person, illness may be a source of empowerment in the face of life challenges.
References:
O’Donnell, A. T., & Habenicht, A. E. (2022). Stigma is associated with illness self‐concept in individuals with concealable chronic illnesses. British Journal of Health Psychology, 27(1), 136-158. https://doi.org/10.1111/bjhp.12534
Charmaz, K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health & Illness, 5(2), 168-195.
Van Bulck, L., Goossens, E., Luyckx, K., Oris, L., Apers, S., & Moons, P. (2018). Illness identity: A novel predictor for healthcare use in adults with congenital heart disease. Journal of the American Heart Association, 7(11), e008723.
Turner, K. A. (2014). Radical remission: Surviving cancer against all odds. Harper Collins.
Beers, B. J., Davidson-Swinton, H. R., Lewis, K. L., Setzer, M. R., Walkiewicz, M. A., & Similuk, M. N. (2025). “I am sick, but that’s not all that I am”: patient perspectives on psychological adaptation over time to inborn errors of immunity. Journal of Community Genetics, 16(2), 117-130.