Coping Skills After The Diagnosis

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The diagnosis of cystic fibrosis can be devastating for families and the patient. Everyone will go through a range of emotions and each one on their own timetable! Some of those emotions include anger, fear, and guilt. You will have concerns about your child’s health, future, and possible financial problems. Teens will have a difficult time adjusting to a diagnosis of cystic fibrosis and it is normal for them to have all those emotions. Talking about the disease, treatments, and other issues about cystic fibrosis will help. It is especially helpful to talk to other people who are dealing with the same issues.

Parents may want to join a support group with other parents with cystic fibrosis children. If your child is older, there may be a group they can join with other teens with the disease. Talking helps ease fear and seeing how others are coping will help reassure them they can still live a full life. Consulting a psychologist may be an important step if your child is having difficulty accepting the diagnosis. Support groups can share experiences, help you find solutions, and lend an ear when you need to talk out your frustrations. If a support group is not available in your area, turn to the Internet for support. There are groups who will provide e-mail support to members. Learning how other patients deal with challenges may help solve some of your own problems.

Live a normal life and encourage your child to live as normally as possible. Parents’ natural instinct is to protect their child from harm especially if they have a disease that has no known cure. Be careful to not be overprotective. One of the best things you can do for your child is to encourage them to be like other children. Go to school, take part in sports, and have regular social interaction with their peers. Children who are encouraged to act like a regular kid will have less problems coping with their illness. Allow your child to be self-reliant and independent. Most children with cystic fibrosis will grow up, graduate from high school and college, and many will marry and have families of their own.

It is important you plan for your child’s future. Start a college fund and encourage them to make plans of their own. You can help your child cope with their disease by talking openly with them and allowing them to express their fear and embarrassment. Teenagers are especially vulnerable to being self-conscious about their difference. No matter how normal you want them to feel, they will still know they are different. Teenagers have a tough time explaining chest therapy, taking a handful of pills before they eat a meal, and the cough that loosens mucus. Encourage them to explain their disease to their circle of friends and explain why they have the cough and other symptoms of cystic fibrosis.

Teens may rebel against their disease or pretend they don’t have it. They may not willingly take their medicine, have their chest therapy, or eat healthy. They also may have peer pressure to start smoking. It is normal for a teen to go through this phase of their life but rebelling for a cystic fibrosis teen can be life threatening. If this happens you should consider a counselor or psychologist for help.