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Key points
- The experience of chronic illness can result in four "identity states" based on one's integration of illness into their self-concept.
- Each illness identity state has ramifications for one's physical and mental health.
- Awareness of illness identity states within oneself is beneficial for well-being.
Oxford Dictionary defines identity as “being who or what a person or thing is.” Identity is multi-faceted. We possess racial identity, gender identity, geographic identity, and professional identity—and these categories only scratch the surface. Your values, your relationships, your hobbies, and even tiny daily choices contribute to making you the person that you are.
Chronic illness, of course, profoundly affects identity. It changes who we are across many domains, affecting our lives in ways large and small. It’s not a chosen experience; it’s often a harrowing experience, and it becomes woven into the fabric of who we are. Many people describe a large chasm dividing their pre-illness self and post-illness selves. Crossing this divide is not easy.
When we confront the divide between our pre-illness and post-illness selves, we grapple with our identity. Before illness, we inhabited the world in a particular way; post-illness, we find that those old ways are closed off to us. We’re forced to change, to adapt to our new reality. Our task is to integrate the illness into our conception of who we are, to develop an “illness identity."
Illness Identity States
Researchers have conceptualized four different illness identity states: rejection, engulfment, acceptance, and enrichment. Each of these states have ramifications for our mental and physical well-being.
Rejection: The rejection illness identity state encompasses a refusal to accept chronic illness as part of one’s identity. The illness is seen as incompatible with one’s sense of self. People in a rejection state either refuse to believe they have an illness, or they minimize the illness’s impact. Their inability to integrate illness into their identity leads to choices that adversely affect their health. For example, they tend to not follow treatment regimens or make lifestyle changes that support their health.
Engulfment: The engulfment illness identity state is the opposite of rejection. In this state, illness overwhelmingly dominates life, becoming a preoccupation. Other aspects of identity—such as relationships and hobbies—are ignored. Understandably, depression and anxiety increase in an engulfment state.
Acceptance: The acceptance illness identity state involves an acceptance of the illness as part of one’s identity. Illness is neither ignored nor all-consuming. Grief is part of true acceptance, as is a move toward healthy adaptations. Depression and anxiety decrease for those in an acceptance state.
Enrichment: In the enrichment illness identity state, there is a recognition that positive changes have occurred as a result of the illness. These changes may include increases in resilience and strength, a renewed appreciation for life, and the clarification of values. Improved well-being is associated with this illness identity state.
Working With Illness Identity States
I believe that we move among illness identity states throughout the course of our lives. Indeed, I think we hold within us all of these states simultaneously, with a different state moving into the foreground at different times. When our illness is very active, for example, it makes sense that we would feel engulfment. It’s difficult to enjoy the other aspects of our identity when we’re in crisis. When our illness is more stable, it’s easier to lean toward acceptance and even enrichment states.
It’s useful to identify our baseline predominant state. If we’re consistently in rejection or engulfment states, it’s important to be curious about that. It may be that illness and/or pain is not controlled sufficiently, necessitating a medical consultation. It may be that it’s been difficult to move through a grieving process about the losses caused by illness, necessitating a psychotherapy consultation.
Even if your baseline predominant state is acceptance and/or enrichment, there will be times when you’ll feel strongly the wish to reject your illness identity or become engulfed by it. Recognize and name those states, allowing yourself to feel the grief that is part of living with illness.
Living with chronic illness is a complicated, lifelong journey. Understanding that these illness identity states are expected parts of the journey can ease the way.
References
Oris, L., Luyckx, K., Rassart, J., Goubert, L., Goosens, E., Apers, S., Arat, S., Vandengberghe, J., Westhovens, R., & Moon, P. (2018). Illness identity in adults with a chronic illness. Journal of Clinical Psychology in Medical Settings, 25(4): 429-440.
vanBulck, L., Luyckx, K., Goosens, E., Oris, L., & Moon, P. (2019). Illness identity: Capturing the influence of illness on the person's sense of self. European Journal of Cardiovascular Nursing, 18(1): 4-6.
