조현병 부모에게 ‘정보와 연대’가 필요한 이유 [건강한겨레]

A recent Japanese film chronicling 20 years of one sibling's battle with congenital heart disease has been released. This work captures the complete transformation of a family's life, not just of the patient but also of those surrounding them. Congenital heart disease is a long-lasting and deeply intertwined illness for both the patient and their family.

The first words that parents of a congenital heart disease patient often share are, "What did I do wrong?" They may blame their parenting style, workaholic habits, or even a genetic flaw, but these are all unanswerable questions that leave parents to grapple with their own faults. Guilt is the first and longest-lasting emotion for parents.

When their child starts speaking in strange ways or exhibiting unusual behavior, parents often attribute it to illness rather than adolescence or stress. Upon hearing a diagnosis, the confusion becomes a self-accusation. Regrets for not recognizing the condition sooner and self-blame for contributing to the illness follow. However, congenital heart disease is not a result of specific parenting methods or parental shortcomings.

It is a biological condition stemming from an imbalance in brain neurotransmitters and often involves both genetic factors and environmental influences. The emotional aftermath is profound grief. Watching a child who once excelled academically and socialized with friends become withdrawn and isolated is a heartbreaking experience.

This grief does not end with a single bout of mourning but resurfaces with each relapse. The fear of disclosing a child's illness to others further isolates parents, as they carry this burden alone. The strain of constant care takes a toll on both body and mind, leaving parents with a double bind of exhaustion and guilt. To alleviate this, parents need accurate information first.

Understanding the disease can alleviate guilt. Second, connection is crucial. Meeting other parents facing similar situations through mental health support centers or family support groups can significantly reduce feelings of isolation. Knowing they are not alone provides comfort. Lastly, distance is essential. Focusing solely on the child's symptoms while neglecting one's own life can prevent burnout.

Parents must prioritize their own health and relationships, stepping back from a child-centered life to maintain their own well-being and ensure they can continue to care for their child.