A diagnosis of Duchenne impacts the full family. Dr. Moriconi, psychologist in Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, shares her insights on the challenges that siblings face.
The bond between siblings is important in the life of an individual: it runs through all the phases of the life cycle and contributes to the construction of identity. Relationships between siblings depend on how much the parents allowed them to become siblings without involving them in their couple dynamics. Every family faces events that often require reorganization.
A diagnosis of DMD is a complex event for most families. Moreover, it can cause strong trauma in parents and siblings, linked to the discrepancy between the “ideal” child they have built and the child that reality presents to them. As a result, it has a significant impact on everyone’s quality of life. It is possible that the disease, especially at particular moments, acts as a dividing element between siblings. Consequently, it is not allowing them an adequate emotional connection for different needs and requirements.
The challenges that Duchenne Siblings face
Siblings often run the risk of being voiceless. A lot of times they are invisible to parents focused on their affected child. Frequently, they find themselves managing pain on their own, unable to share it with a weakened family system. In other cases, they may be extremely involved in the cure. Siblings are often the object of a protective dynamic and do not receive information on the pathology and course: this is to avoid the pain that is difficult to process. They often develop symptoms of a psychosomatic nature. The brother with the disease could feel remorse in burdening the brother or sister, guilt or feel abandonment and therefore resentment and anger. The sister of the brother could lead a life dominated by the limit of the sense of guilt and therefore deprive herself/himself of experiences.
In each intervention, it is essential to involve the entire family system. To give voice to the suffering of each member in a perspective of circular communication of pain, to become aware that within the family there are the resources to promote a greater sense of well-being.
This article is part of the Digital Duchenne and Becker program.
For more information, you can watch the latest webinar on Duchenne Siblings.