Chronic illness is one of the most painful and discouraging situations a family can face. It requires coping skills from everyone in the family, not just the sick child. The journey is long, but it shouldn't be traveled alone. A chronic illness affects everyone in the family. Therefore, it is important for family members to work together to get through it. Allow everyone to struggle together and learn ways to support and comfort one another. The following suggestions will help you and your family cope as you struggle to deal with this very painful and difficult process.
1. Learn about the illness
Many parents struggle with feelings of inadequacy and helplessness when they initially learn about their child's illness. Read up on your child's illness so that you will know what to expect. Seek out information from support groups or organizations that research your child's particular disease. Learning about the possible types of treatments available, long or short-term effects, consequences of the illness, etc. will help you feel more comfortable and in control of the difficult decisions that must be made.
2. Join a support group
There are many support groups around the country for parents and children facing the same concerns and problems that your child is facing. It is comforting to know "you aren't the only one." Support groups provide social support for children that are struggling and answers to many questions that parents have.
3. Face the possibility of death
Though it is painful to consider this scenario, facing it and dealing with it will help you and your family cope in the event that it does happen. In some studies, as many as 8 out of 10 couples with children who have died from chronic illness have gone through divorce. Many suffer from communication breakdown, or are painfully reminded of their child every time they look at their spouse. Talk about the possibility and how you will support each other in the event that death becomes a reality. If that happens, allow yourself to grieve and turn to each other for comfort.
4. Maintain open and honest communication
Often this is the single key that helps most families deal with chronic illness. Frequently, parents try to shield the child from knowing about the illness. You don't have to give gory details or destroy their feelings of hope, but you do have to be ones to be honest with them, even if that only means saying, "You are really sick and the doctors are doing everything they can." Let them ask questions and let them know that you are there.
5. Share leadership
It's a frequent problem in families dealing with chronic illness that one parent becomes the "leader" and tries to control all decisions. This is difficult for everyone, especially the spouse who has taken on this overwhelming burden. Husbands and wives need to maintain constant communication and work as a team. When life gets busy, and you don't make time to talk - a husband and wife can drift apart. Beforehand decide together what you would do in the event of particular situations or outcomes.
6. Include your other children
Siblings often feel alone and deal with frustration and guilt because they are left out of the picture. Other children need to be aware of what's happening and in an ideal situation, would be allowed to help in making decisions and fulfilling responsibilities. It's well known that many children with chronic illness don't talk to parents about their problems because they don't want to hurt their parents. By allowing the siblings to be involved, parents are providing a way for their children to talk. Sick kids will often tell their brothers and sisters things they would never tell their parents. This form of communication is vital to everyone.