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Identity, mental health and living beyond the diagnosis
The second major part of the day explored the psychosocial impact of chronic illness and, in particular, the relationship between illness and identity.
Professor Koen Luyckx presented research on identity, body image, quality of life, depressive symptoms, treatment adherence and family dynamics in young people and adults living with chronic conditions. Although much of the existing evidence comes from conditions such as type 1 diabetes, congenital heart disease and other long-term illnesses, the concepts resonated strongly with the PKD community and provide a basis for dedicated research in ADPKD.
Identity is not fixed in adolescence and then completed. People revisit questions about who they are, what they value and what future they want throughout life. A chronic genetic condition can enter these questions long before symptoms become visible. Young people may see the disease in a parent or grandparent, anticipate their own future and make educational, professional, relationship and reproductive decisions in its shadow.
Four different ways of integrating illness into identity were described:
- Engulfment: the illness becomes the dominant part of the person’s identity and seems to affect every area of life.
- Rejection: the illness is pushed away and treated as incompatible with the person’s sense of self, sometimes as protection from feeling overwhelmed.
- Acceptance: the illness is recognised as one part of life and identity, but not the whole of the person.
- Enrichment: the person experiences growth, strength, meaning or a desire to help others as a consequence of living with the illness.
These are not rigid categories. A person may feel acceptance one day and engulfment the next. Nor does time automatically resolve the process: someone may feel overwhelmed shortly after diagnosis or after living with a condition for decades.
Research presented during the session suggested that acceptance is associated with greater life satisfaction and fewer depressive symptoms, while engulfment is associated with greater emotional distress. Rejection may reduce motivation to engage with treatment. Enrichment can coexist with worry and emotional impact: finding meaning in an experience does not mean that the experience is easy.
This has practical consequences. Psychosocial care should not aim to force positivity or tell patients that illness must make them stronger. It should help people find a sustainable place for PKD within a much larger identity—as a parent, partner, friend, professional, student or community member.
The family context is central. Parents influence how children understand risk, but children’s reactions also affect parents. Siblings who do not inherit the condition may experience guilt or receive less attention, while affected siblings may feel singled out. Support should therefore consider the whole family, not only the individual with a diagnosis.
Participants also discussed disclosure at school and work. Concealing a condition can protect privacy, but may prevent people from asking for adjustments or support. Employers and educational institutions need environments in which disclosure is safer and practical accommodations can be discussed without stigma.
Patient organisations can help people move away from feeling like victims by creating opportunities for connection, volunteering and leadership. One organisation described recruiting dozens of ambassadors who shared information and personal stories about PKD.
Participants became proud of their contribution and felt able to turn difficult experience into something useful for others—an example of acceptance and enrichment in practice.
At the same time, researchers and organisations must be alert to selection bias. People who reject or avoid their illness are less likely to join a patient association or answer a survey, which means their perspectives may be missing from research. Reaching beyond already-engaged communities will be essential if we want a complete picture of life with PKD.