It's okay not to be okay with NTM/Bronchiectasis: Overcoming fear related to being diagnosed and dealing with an ongoing chronic diagnosis

Posted on November 17, 2023   |   
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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

Feelings of anxiety following a diagnosis of a chronic illness are normal. A diagnosis like bronchiectasis and NTM lung disease can bring shock, denial, anger, and fear of the unknown.

Understandably, some may go through a grieving period when there is a change in their health or when learning of a new diagnosis. It is important to mourn your losses, feel the emotional pain, and not bury your feelings. Your health can be at risk if you choose to cope in a negative way. People with new diagnoses should process their feelings instead of finding ways to numb or ignore them.

Beyond the grieving period, we must somehow learn to accept the “new normal,” and find ways to adapt to any limitations that we have. One of my favorite quotes is “Worry is a substitute for not taking action.” We can choose whether we want to stay in the “mudhole” or get up and out of the hole to live a fuller life. It is important to set goals and to go forward. Develop an action plan to include your airway clearance schedule, medication/nebulizer schedule, exercise routine, and activities that bring you joy.

Coping skills and emotional support are extremely helpful in dealing with the frustrations faced along the way. Feelings of disappointment and despair occur with any chronic condition. Identify your coping skills and learn new ones as needed. According to the APA Dictionary of Psychology, coping refers to "the use of cognitive and behavioral strategies to manage the demands of a situation when these are appraised as taxing or exceeding one’s resources or to reduce the negative.”

Many people need to feel some control of their life events. Losing control can contribute to the development of anxiety or depression. Ongoing stress can cause increased levels of stress hormones and possibly decreased strength and further illnesses.1

My personal suggestions to assist you in coping:

  • Ask others to help you.
  • Engage in problem-solving.
  • Maintain emotionally supportive relationships.
  • Lower your expectations.
  • Distance yourself from sources of stress.
  • Utilize energy-management strategies.
  • Do not overbook yourself. Learn to say “no” when appropriate.
  • Learn to deal with JOMO, the Joy of Missing Out. Sometimes we push ourselves to do things when we are not feeling well, out of obligation.
  • Identify what you can control and what you cannot control.
  • Educate family and friends on your limitations of our “invisible condition” (especially before the holidays begin).
  • Improve communication skills and become less passive. Take a class in effective communications.
  • Practice relaxation exercises such as yoga, prayer, meditation, tai chi, or progressive muscle relaxation
  • Engage in fun activities regularly. Join a group within your local community.
  • Make a list of everything you are grateful for each day. Accent the positives and be grateful for what you can do. Try to focus on your abilities instead of your disabilities daily.
  • Get enough sleep, eat a well-balanced diet, limit caffeine and alcohol, and exercise, regularly, all of which will help you to cope with your stressors more effectively.

Further Words of Advice

Hold onto hope — you are not your disease. There are several new drugs, therapies, and treatments are in the pipeline. However, they must go through a long safety evaluation process that takes time.

Seek information — Learn as much as you can about your diagnosis. Many great online resources can be very helpful.

We are here to assist you on your journey. You are not alone. Please post any questions on coping mechanisms or any other bronchiectasis and/or NTM-related topic on the BronchandNTM360social community activity feed. Empower yourself with the knowledge to live the best quality of life possible. I have developed coping skills out of necessity to deal with the challenges of chronic issues over time. There are hidden gifts of living with a chronic condition you may see down the road that you cannot see at present.

Take baby steps with improving coping skills, one day at a time. Believe that things can get better — the mind-body connection is powerful.


References:

  1. Stressors: Coping Skills and Strategies, Cleveland Clinic, https://my.clevelandclinic.org/health/articles/6392-stress-coping-with-lifes-stressors. Date accessed, October 19, 2023