This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

Bronchiectasis and NTM lung disease can impact every aspect of our daily lives and the lives of our children. Parenting while dealing with a chronic lung disorder can be very challenging at times, to say the least. Children pick up on cues, signs, and body language from an early age. Your child is always observing you.

Speaking with Your Child About Bronchiectasis and NTM Lung Disease

Communicating to your child honestly about your medical issues is of utmost importance. As a parent, we want to protect our children from the difficulties in life. As a nurse and a parent, I was anxious to communicate honestly with my daughter since I did not want to place a burden on her. I did not want her to feel as though she had to look after me. At the time, she was the child, and I was the parent. I just wanted her to enjoy her childhood.

The goal of the conversation is for them to understand how NTM and bronchiectasis impact your life. Explaining your condition on an age-appropriate level can assist in lessening their fears. The following suggestions may help you prepare to speak with your child:

• Choose the right time and place for the discussion.
• Discuss how NTM and bronchiectasis impact you physically and emotionally and how it can impact the family unit. Do not minimize the impact of the symptoms you are experiencing.
• Make sure to simplify your medical language.
• Accent your strengths, not just your weaknesses.
• Be honest; ongoing trust is key to this discussion. If your child does not understand what is going on, then she/he may become more anxious when you are not feeling well, which may lead them to think the worst-case scenario.
• Listen to her/his response and answer their questions.
• Remind your child that they can always come to speak with you if they have questions or concerns.

Be certain to communicate to your child that you are doing your best to live life to the fullest, so you can be there for them. You and your child are working as a team. We must learn to practice better self-care to enjoy the best quality of life possible. As they say on the airplane, put an oxygen mask on yourself before you take care of someone else; the same applies here.

This conversation and experience will allow your child to grow in their compassion and empathy. It will also teach them how to be resilient and how to deal with adversity. Open communication encourages your child to communicate with you about this and future challenges.

My daughter, Joy, received an award in her high school choir of 130 students for being the most inspirational choir member. Her teacher observed a great deal of resilience when she was faced with challenges. She is now a compassionate, empathetic young woman who recently graduated from college and is figuring out her career path. I am very proud of who she has become.

Despite the odds, we got through the biggest hurdles, and we are looking forward to many great adventures ahead. I got to the other side; you can do so as well. We must continue to keep on keeping on. The BronchandNTM360social community is here for you. If you have any questions, please contact me at Info@BronchiectasisandNTM360.org.