Talking about HD is difficult because it is a complex diagnosis and it can have a profound and devastating impact on family dynamics. Parents often believe that HD is too complicated for an infant to understand, and too distressing for school age and adolescent children. In addition, the already challenging task of telling a child about his or her parent's chronic illness is amplified in the case of HD, because the child is at risk of inheriting the disease. Caregivers fear that their child will someday develop symptoms of HD and want desperately to provide him or her with a normal childhood, free from the anxiety, sadness, and anger that living with HD entails. Moreover, some parents worry that by telling their child about HD, they will subject him or her to genetic discrimination, which could limit social relationships and opportunities. Despite all of these concerns, most families and social workers agree that establishing open and honest communication about HD from a young age, rather than avoiding this topic altogether, is less damaging and more beneficial for all members of the family.
While keeping quiet about HD in the family seems like a way to protect a child, it often does more harm than good. Even when the condition is not discussed, small children commonly pick up on the notion that parents are anxious and worried, and that something is wrong with the parent with HD. If the diagnosis is not at least explained in simple terms to the child, he or she might feel responsible for causing the strange behavior of the affected parent. In addition, a common symptom of HD is irritability. If a parent's irritable behavior is not explained properly, a child may not understand that the parent's anger is not directed at him. Inability to discuss HD can also eventually lead to poor preparation for future changes in the family as the symptoms of the parent with HD grow more severe.
Talking to a child about HD helps the child understand why his mom or dad is acting strangely and can make it easier for the whole family to cope with the diagnosis. Open communication creates a safe environment to discuss and ask questions about a very distressing illness, and it reduces individual feelings of isolation for the child as well as the stress of secrecy for the parents.
Last Modified: 05/22/2009
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