Dimensions of illness identity
People living with the same diagnosis can describe its place in their lives very differently. Illness identity offers a way to investigate those differences. Instead of asking only whether someone has adjusted well or poorly, the approach considers how the condition relates to their wider sense of self.
Evidence from inflammatory bowel disease
Our work with Antonia Krömeke examined illness identity, health-related quality of life, and flourishing among 244 German-speaking people with inflammatory bowel disease. Lower engulfment and higher enrichment were associated with flourishing. Engulfment concerns illness taking over the sense of self; enrichment concerns perceived positive changes associated with living with the condition. The survey design does not show that either process causes flourishing.
Interpreting adjustment and wellbeing
Finding an association with enrichment should not become an expectation that people must find benefits in illness. Nor does acceptance mean being content with symptoms or inadequate care. For our research program, the value of distinguishing identity dimensions is that it permits more than one account of living with a condition. A person’s illness-related identity is not a judgment of their character or effort.
From one condition to another
Extending an identity measure to another population requires more than replacing the diagnosis in an item. We need to examine whether its dimensions are meaningful, whether the items function as intended, and how scores relate to other experiences. Ongoing work with long-COVID data takes up these measurement questions. Any profiles identified in such analyses will need interpretation and validation rather than being treated as permanent categories.