Helping a Child with Cystic Fibrosis Find Hope

Cystic fibrosis is a serious and debilitating illness that is lifelong, affecting people often from infancy. What some people may not realize is how difficult it may be for children to understand what is happening to their body.

Most small children with the disease have gone through more difficult times than an average healthy adult. This ranges from having extreme discomfort and difficulty breathing to hospitalization for several days or more because of life-threatening infections.

Kids with cystic fibrosis might be socially isolated

As kids get older and become more aware of their own situation, parents might find a lot of trouble explaining their disease to them. On top of that, the schoolyard is not always the nicest or welcoming place for kids who have a chronic illness. Often times, kids with cystic fibrosis become the butt of other kids jokes, and many kids get ostracized from social settings. Some may even get severely bullied, which can not only hurt your child's emotional well-being but also reduce his or her self-esteem overall.

Parents struggle to communicate with their child suffering from cystic fibrosis

Parents to teens with cystic fibrosis might struggle with how best to communicate with their kid. Teens are a special case because they are mature enough to understand the disease process. However, their social and emotional maturity is at its peak of development, meaning they are going through one of the most sensitive times of their life. Teens are learning where they stand in the world as well as finding their independence as young adults.

What can parents do to help their teens cope with cystic fibrosis?

Emotional well-being has everything to do with overall health. It's important to pay attention to your child's mental health if you want to help them live healthier and happier.

One thing you can do as a parent is to help your child plan for the future. Career planning is a major aspect of this and kids typically start thinking about this in high school. Often times, the school will actually host events and seminars to encourage students to explore their options, and you should support your teen to participate in these activities as much as possible. Make sure to engage them in the planning process for their future.

Goals and aspirations - tell your child to go for them!

Try asking your teen "If you didn't have cystic fibrosis, what would you want to be when you grow up?" Whatever they may answer with, encourage them to pursue it despite their illness. By using some creativity and scouring through community resources, you can help your teen reach his or her future goals. Encourage them to enjoy making themselves happy.

Of course, there are some physical limitations when you suffer from cystic fibrosis. For example, if your teenager's dream s to become a firefighter, it's likely that their disease is going to prevent that from ever happening. But don't lose hope! Your teen can still be actively involved with his or her dream despite the health barrier. You can help your child learn about ways they can work for the fire department in the future, or perhaps they can indirectly help the fire department through another career avenue. Talk to your local fire department, and engage the help of counselors. A little bit of creativity can go a long way.

Give back to your community

Another way to inspire confidence in your child is to have them engage in community service. Feeling helpful and appreciated by your peers can help you feel more self-worth and boost confidence as well. Helping others will also teach your child that it's important to empathize with others. Being too self-focused fosters a sense of entitlement and leads to poor independent functioning in the future. By teaching your child that they are an important contributing member of society, they can find meaning and purpose in their life. By seeing others who suffer from various misfortunes, teens can refocus their self-pity to a drive to make a difference.

Stay positive, but stay realistic too

Most teens appreciate more honest and straightforward advice. As mature adults, it's easy for your teen to sniff out people who are beating around the bush when they are discussing their future. This can make them feel belittled, and it can even anger someone to feel like they are not being taken seriously. Nobody wants to be lied to or deceived about what they can expect for their future. The best way to go about counseling your child is to be straightforward but encouraging at the same time. Acknowledge the limitations and pitfalls that your teen will most likely face, but also follow those discussions up with creative advice on how they can best move forward.

Sometimes, your teen will feel frustrated about their situation. This is a time when you can help your teen open up about his or her feelings, and work with them in a healthy manner. Acknowledge how they feel and support them by asking them to explore what makes them feel the way they do. Avoid offering cliche statements or false assurance. With a little bit of empathy, your teen will start to trust you and feel heard. You can then work together to find new ways to help him or her cope with having cystic fibrosis.

Express gratitude, and practice it every day

Encourage the entire family to practice thankfulness. Count your blessings every day and share them with your whole family. Make it a habit for everyone to engage in so the whole household may become a more positive place. Try keeping a gratitude journal that everyone should share on a weekly basis. It could even turn into a fun family event or get-together.

For better or for worse, parents are a powerful example for their kids. Even if your teen doesn't want to actively engage in the activity, just seeing their parents or family members act a certain way will leave a lasting impression on their minds. Being more grateful yourself will eventually help your kid feel more grateful too.

Be happy with just being "you"

A lot of times, kids feel a pressure to be doing something rather than simply being themselves. Part of the reason for this is that our culture focuses so much on celebrating achievement or excellence. Why not try celebrating just "you"? Self-worth and life meaning have nothing to do with what you've accomplished, but rather just a simple matter of liking yourself. Teach your child that it's okay to just be. Celebrate each other even though nobody had done anything special. Just enjoy each other's company and celebrate you!

With a little guidance and love, your child living with cystic fibrosis will find their own way as they mature into adulthood. You can help them as best you can by paying attention to their mental health and emotional well-being. Stay positive yet realistic, and redirect their energy towards purposeful engagement rather than self-pity. A healthy mind means a happier and healthier child.

References

https://www.cff.org/CF-Community-Blog/Posts/2015/5-Ways-Parents-Can-Empower-Hope-in-CF-Teens/