Coping With Cystic Fibrosis


How to Cope with Cystic Fibrosis (CF)

If you or someone in your family has been diagnosed with cystic fibrosis (CF), there are many resources that can help you better cope with the disease.  If you're the parent of a child with cystic fibrosis, you and your child can still lead normal, fulfilling lives by understanding how the disease, treatments, and symptoms affect your child from day to day. Here are some ways parents, teens, and young adults can cope with CF.

Coping as a Parent of a Cystic Fibrosis Patient

If you are the parent of a young child with cystic fibrosis, there are several ways you can be an encouragement to your child.  One thing to remember is that showing frustration toward your child could cause them to feel that having the disease is their own fault. They might feel isolated or unwanted at times because of their special care needs. So always reassure them that you don't mind caring for their needs and that they are special to you no matter what. 

With a young child, it's important to care for them on a daily basis and make it a normal part of their routine. Don't single them out in the family because of their illness, but try to make treatment times and procedures seem as natural for the family as possible.  Also, talk to their siblings about being patient and helpful.

Don't Feel Guilty or Overprotect Your Child

As a parent, you might tend to feel guilty or that you somehow caused your child's cystic fibrosis. Rest assured that you did not cause the disease. Most carriers of the disease don't know it. Many people don't even know that the possibility of being a carrier exists.  Replace that guilt with determination to help your child become all that he or she can be.

Don't overprotect your child, but encourage them to participate in activities with other children. Give them small goals to reach on a daily basis to build self-confidence. Allow them to make some small mistakes so they can learn from them. Teach them that having an illness or disability shouldn't be an excuse for not striving to be all they can be. Help them to become self-reliant and to administer certain treatments on their own as they grow older and mature.

Educate Yourself and Others

Another way to help your child is to educate yourself and others about the disease. Family members and friends should know that the disease is not contagious.  Their children can play with your child without risk of catching cystic fibrosis.  Also, ask your family and friends to explain things to their own children ahead of play time so the children will understand about the treatments and how they work.  This helps to reduce their curiosity so they can play normally together.

With all these things in mind, keep a positive attitude. Displaying the right attitude in front of your child can make all the difference in their well-being. They need to see a light of hope even when things aren't going so well. They need to know you love them but also that you have a positive outlook for their future.

Coping with Cystic Fibrosis as a Teen

If you are a teen or young adult with cystic fibrosis, coping can be difficult at times. Even when you're feeling well, CF can be in the back of your mind because it must be consistently treated. As a teen still living at home, talk things over with your parents if possible when you feel frustrated. There might be times when you don't feel like taking treatments.  Let your parents know about these times so they can help.

Also, be open with your doctor about cystic fibrosis. Let him know how you feel and the struggles you are having. Doctors might have found solutions that work just from dealing with so many other patients with cystic fibrosis. Your parents might even research with you online to learn more about CF and to find others who can offer advice. Also, check to see if there are any groups of other teens with CF in your area so you can meet others who go through the same struggles.

Keep active with your friends and family so you won't become depressed. Sitting around and thinking about it will only make things worse.  Even if you don't feel up to strenuous activity, there are other things you can do to have fun.  See a movie, visit a friend, ask your parents about taking a mini-vacation for the day or the weekend.

At school, don't be afraid or embarrassed to discuss cystic fibrosis with others. The more open you are about it, the more willing others will be to help. You'd be amazed at how your openness can cause other students to relax around you, and they will feel more comfortable talking with you about other things as well.

Advice for Young Adults with Cystic Fibrosis

If you're a young adult with cystic fibrosis, try working a career that you enjoy or taking college classes that stir your interests. Strive to be your best, make good grades, or do your best on the job.  Explain to those you work with or go to school with that you have cystic fibrosis and that some days are better than others.

Keep up-to-date with the latest cystic fibrosis research. Scientists are finding better treatments and working toward a possible cure through genetic therapy. The more you know about it, the better.  Also, ask your doctor frequently if there are new treatments or medicines that will work better than those you are currently using.

This guide has covered the very basic aspects of cystic fibrosis.  If you or a family member suffer from the illness, be sure to keep an open relationship with a cystic fibrosis specialist so you can better cope with the disease using an expert's advice.