Supporting a Loved One with a Chronic and Progressive Lung Condition
Posted: December 16, 2019 | Word Count: 734
Having a friend or loved one with a chronic and progressive condition teaches you many things: patience, understanding and adapting to lifestyle changes after diagnosis. But for Mary, supporting her friend, Barbara, living with a serious lung condition called nontuberculous mycobacterial (NTM) lung disease taught her the importance of listening.
While taking weekly walks together, Mary first noticed Barbara was experiencing respiratory symptoms, such as coughing fits and getting tired very easily. Barbara’s symptoms continued for two years, and Mary later found out that Barbara was living with NTM lung disease — a serious and progressive condition caused by bacteria that can lead to lung damage and respiratory symptoms.
From speaking with Barbara, she realized that while Barbara was relieved to have an explanation for her symptoms, she also felt overwhelmed and scared by her new diagnosis.
Mary recalls, “As her friend, I was upset that she had to face this health issue and wanted to know how I could help. I realized the best way I could show Barbara my support was to ‘walk with her’ and let her know she wasn’t alone.”
About NTM Lung Disease
NTM bacteria are common in the environment and can be found in tap water, showerheads, steam from hot tubs, and soil from parks and gardens. While everyone comes into contact with NTM bacteria during their daily lives, most people do not develop NTM lung disease because their lungs are healthy enough to clear the bacteria. However, people with a history of lung conditions, like bronchiectasis, chronic obstructive pulmonary disease (COPD) or asthma, are more likely to develop NTM lung disease because the damage from these conditions can make it easier for NTM to infect their lungs.
NTM lung disease is considered rare, but cases are growing 8 percent each year. In 2018, it is estimated that 75,000–105,000 patients were diagnosed with NTM lung disease in the U.S. Since awareness of NTM lung disease is limited and the symptoms of NTM lung disease, like chronic coughing, feeling tired often and shortness of breath, are similar to other lung conditions, many people who have it may not even know it for months or sometimes years.
Providing Encouragement and Understanding
Following an NTM lung disease diagnosis, patients may have a hard time coping with the impact the disease can have on their lifestyle. Emotional support from family and friends is crucial to help patients navigate these new challenges.
After learning about Barbara’s diagnosis, Mary encouraged her to speak about the tests she was undergoing and treatment she was taking as well as how she was feeling. Mary was also there to support Barbara through some of the lifestyle changes that she was making to help manage her condition — whether it was hearing about the adjustments she made when traveling or ways to help limit her exposure to NTM bacteria at home.
Mary also understood that keeping up weekly walks helped Barbara physically and emotionally. She made sure that they stuck to their routine and made adjustments whenever necessary, such as walking for shorter distances or slowing down their pace based on how Barbara was feeling.
“Barbara’s diagnosis made our friendship stronger because she knew she could confide in me and receive the support and reassurance she needed — even if that just meant listening,” Mary shares. “While everyone’s experience with NTM lung disease is different, sometimes knowing there is someone willing to listen to what you’re going through can make a world of difference.”
Like many other loved ones of NTM lung disease patients, Mary had never heard about the condition before Barbara’s diagnosis. She let Barbara be her teacher and learned a lot about the condition through her experience. Today, she’s more informed about NTM lung disease and can be a better source of guidance and support for Barbara.
There are also several online patient resources available to learn more about NTM lung disease, such as the Voices of NTM Lung Disease eMagazine on AboutNTM.com, which provides information on living with and managing NTM lung disease through first-person stories from different members of the community, like Barbara and Mary. On AboutNTM.com, you can also access more information on how to join support groups to connect with others who have NTM lung disease, and how to sign up to receive helpful resources.
Sponsored by Insmed Incorporated.