Family & Friends

Family

Building positive family relationships is no easy task. All members have unique personalities that interact in different ways. As children grow, they are learning from their parents. They are being shaped by the whole family experience. These experiences will influence their values and attitudes as an adult. When families have a child with Chronic Granulomatous Disease (CGD), sometimes challenges are magnified, and it can take a physical and emotional toll on every family member.

In addition, family stability can be affected by many factors, such as finances, divorce, substance abuse, or chronic illness. Overall family stability is measured by its ability to adapt to change and stress. Families that maintain stability during these times become more resilient and stronger.

You can manage your teen’s CGD and the effects it has on your family stability. Here are some proven family coping skills:

  • Create family balance. It would be easy to spend more time with a chronically ill child and neglect the other children. Making a conscious effort to spend time with each child is important. Find the time for each child individually.
  • Be a positive role model especially as it relates to coping with your child’s illness. Children will follow your lead. Model positive and effective coping strategies on a regular basis and encourage them to develop their own.
  • Keep the lines of communication open. Educate yourself about CGD and share honest information with your children. Answer all their questions and talk to them about how they are feeling.
  • Develop normal family routines. Having regular family meals is a time when everyone has a chance to share. Family traditions and family outings create a feeling of unity.
  • Make time for yourself. People only have so much gas in the tank. Finding ways to re-energize will make you a better parent.

You can also turn to IDF for guidance. Visit IDF Friends, a discussion forum designed for those living with PI, including parents, where you can connect with others parenting a teen with CGD or other type of PI. You can also request to talk one-on-one with a volunteer through IDF Peer Support.

Sibling relationships strongly influence family dynamics, which is the way family members interact with one another and in relation to the group. Siblings are one of the most important connections people have throughout their life. At an early age, however, brothers and sisters compete for their parents’ attention. This competition can put a strain on the family. When one member of a family has a chronic illness, it can further affect family dynamics.

It is hard to predict how a brother or sister will deal with their sibling’s CGD. Some siblings may feel guilty because they are healthy and others may feel anxious about becoming sick themselves. Siblings might feel angry if they are asked to do more around the house or don’t get the attention they desire. You should acknowledge the siblings’ feelings and develop ways to help them cope:

  • Take a positive approach. Siblings who help their brother or sister cope with their chronic illness feel a sense of pride. Their bond can become even stronger when caring and kindness is shown.
  • Communication is essential. When siblings start having negative feelings, they need to talk about it. For example, if they are feeling neglected, they need to be able to talk about it with their parents.
  • Keep the relationship as normal as possible. CGD does not define sibling relationships. Siblings need to understand that their relationship will have the usual ups and downs that all sibling relationships have.
  • Family dynamics and sibling relationships are extremely complex. The bond among family members is influenced by many different factors. Learning how to adapt and cope with those factors will allow each member to be more resilient.

Friends

As a parent, you want to know who your kids are hanging out with. Your teen’s friends have tremendous influence on them. This is what peer pressure is all about. It makes sense that you want your teen to hang out with people who will have a positive influence on their lifestyle choices. Their friendships have deeper meaning to them and last longer than as a preadolescent. Their friends are very important to them. Your teen’s friends are not replacing you. Their friends are becoming more important, and your teen still needs you to be supportive as they mature into young adults.

Helpful information for both teens and parents can be found in the teen section of the IDF website, www.primaryimmune.org/teens and in the Immune Deficiency Foundation Patient & Family Handbook for Primary Immunodeficiency Diseases chapter titled “Adolescents Living with Primary Immunodeficiency Diseases.

Click here to be connected with others through IDF Peer Support or call 800-296-4433.
Click here to communicate with others with CGD through IDF Friends.

Source: Immune Deficiency Foundation, www.primaryimmune.org/teens.Copyright 2014 by Immune Deficiency Foundation, USA. This page contains general medical information which cannot be applied safely to any individual case. Medical knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical advice