Learning about HD – a child’s response

Learning about HD – a child’s response

Each family reacts differently to a diagnosis of Huntington disease and the way in which each family member copes can vary from person to person. Some families love quite well with the knowledge, but it’s not unusual to see common emotional reactions from children who are suddenly faced with the news that a parent has HD.Many children go through a grieving process, reacting to the changes that HD may have brought into their lives.

They may have lost involvement with a physically active parent or feel that their carefree childhood is over due to the worries associated with having an ill parent. They may be needed to take on more responsibilities and, as a result, lose some of their free time.Shock is another normal reaction, particularly when first learning of the diagnosis. This can lead to the child feeling frightened or worried.Denial often follows shock. Some children may pretend that nothing has really happened and others may not ask any questions, hoping that the disease will go away if they ignore it. Denial can actually serve a purpose, allowing children to absorb the news and get over the initial shock without having to deal with painful emotions.

Anger is often the next emotion to follow and may be directed at various people, including the person with HD. Though it’s not wrong to feel angry, children may not always express their anger in the most appropriate ways. Family members should remember that anger is a natural reaction to the disease and any changes in the family’s lifestyle.

Sadness and guilt may be next, particularly if the child feels guilty for getting angry or feels responsible for the disease and some of its symptoms. Though sadness diminishes in most cases, there are times when it can turn into depression. If children become withdrawn and isolated, or their relationships with friends and social activities become restricted, depression could occur and may require outside help.Fear of the future is another worry that children may have.

Most are afraid of losing their parent or relative to HD and some experience concerns about their own futures due to genetic risk. Anxiety can also increase as young people worry about their parents, other family members and themselves.Having a parent who looks or acts differently due to HD can cause feelings of embarrassment. They may avoid bringing friends home and may not want their parent going to school or to social activities.It’s important to remember that each child is unique and will react differently to the diagnosis. Try to be attentive to the needs of each child. Being aware of and understanding your child’s emotional reactions is the best way to help your child cope with the impact of HD.

Adapted from the fact sheet: Learning About HD-a Child’s Response. Click here to access the fact sheet.