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Living with Cystic FIbrosis

Putting a New Spin on Normal

By

Updated June 10, 2014

For past generations of cystic fibrosis sufferers, living with CF meant spending much of one’s time struggling to breathe and avoid suffering until succumbing to an untimely death in early childhood. Fortunately, this is no longer the case. People with cystic fibrosis are living longer than ever before, usually into middle-adulthood. Today’s generation is discovering that living with CF means learning to cope, daring to hope, and finding normal in the abnormal.

Newly Diagnosed: Learning to Cope

The initial period after a child is diagnosed with CF is a tumultuous time. Learning that their child has a potentially fatal disease is a life shattering experience for parents. Once the initial shock is over, parents should begin to arm themselves with the things that they will need in order to cope with caring for a child with CF.

Some things to put in your coping toolkit:

Knowledge: Ask, watch, study, and read everything about CF you can get your hands on. You are going to have many questions, and there is a lot to learn. Don’t rely on memory, it will fail you in times of stress. Write down questions in a pocket-sized notebook as they pop into your head. Keep the notebook with you and pull it out each time you see your doctors.

Support: Get involved with support groups. Connect with other CF patients and their families. Nobody knows a road better than somebody who has already been down it. Surround yourself with people who can guide you as you forge your own path.

Plan: Getting through daily life with CF can be overwhelming. Get familiar with all of the things that will be needed to treat CF. Make a written plan about how you will include activities such as medications and therapy treatments in your daily routine.

Strength: You may hear a lot of discouraging words from well-meaning but misinformed people. Remember that cystic fibrosis used to be a lot of things that it no longer is, but many people do not know this. Expect to encounter negativity and be prepared to keep it in perspective. When you do find yourself confused, filter out the background noise and listen to the voices of those that know the truth - your child’s health care providers.

Moving On: From Coping to Hoping

Now that you’ve developed a strategy for coping with the diagnosis of CF, you’ll need to begin planning for the immediate and long-term future. Children with CF can plan for life as adults, but not because the disease has changed. The reason that people with CF are living longer, more productive lives is because we’ve learned better ways to treat CF. Preventing damage from an early age on is the only way to give children with CF a chance to become adults. This is a big responsibility for parents and involves some sacrifice, but it is absolutely essential.

Some things you can do to ensure that your child has the best future possible:

Establish a Routine: Treatment of CF usually requires taking medicines before each meal, inhaling medicines a couple of times a day, and having therapy treatments up to four times each day. Fitting these things into your life can be a challenge, but consistency is the key to success. Having a scheduled time for everything can help ease the burden.

Be Diligent: Once you have a routine, do your best not to stray from it. When things get hectic, you may be tempted to skip a treatment once in a while or postpone a medication, but don’t do it. Missing even one step of the treatment routine can cause setbacks. Following your routine to the letter will help you stay on course and teach your child good habits for the future.

Learn to Juggle: Many parents of children with CF find that they become so consumed with their child’s needs that they forget to take care of their own. Don’t let this happen, or you will quickly run out of steam. CF is a lifelong commitment. It’s not going to go away. You’ll need to find ways to make CF a part of your life, without letting it be your life.

Settling in: Discovering a New Kind of Normal

After a diagnosis of cystic fibrosis, things will never be the same as they were before. Even after your child has reached adulthood, CF will still play a big part in your life. Your child may require some help with physical care when he or she gets older, and you will need to consider the treatment routine when planning family events.

It’s hard for anyone to define what a normal life is, but with CF it can be even harder. With a few tweaks here and there, the definition of normal for people with CF can be very similar to their definition of normal in a healthy person.

Some things that people with CF might realistically expect to do:

  • Go to school
  • Have friends
  • Play sports
  • Get married
  • Have children
  • Have a career

When figuring out what normal means for you, the rule of thumb should be to dream big but proceed with caution. Set short-term goals to help you accomplish your life plan, but be flexible. You may need to make some adjustments along the way.

A Word about Siblings

Learning to live with CF can be stressful for everybody involved, but it is often terrifying for siblings who may be too young to understand what is causing the turmoil in their lives. Even older siblings sometimes have feelings of fear that their brother or sister will die, jealousy of all the attention their sick sibling receives, or guilt that they are healthy. It’s important to remember to include siblings in the equation when learning to live with CF and not let them get lost in the shuffle.

Source:
Carpenter, D.R., & Narsavage, G.L. (2004). One breath at a time: Living with cystic fibrosis. Journal of Pediatric Nursing. 19, 25-32.

Havermans, T. & De Boek, K. (2007). Cystic fibrosis: A balancing act? Journal of Cystic Fibrosis. 6, 161-162.

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