This blog post was written by Katie Keating, RN, MS, patient advocate and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee
I have learned that most people have never heard of NTM lung disease or bronchiectasis let alone understand what it is like living with such baffling diagnoses. However, the pandemic and the media’s attention to long haulers’ syndrome has shed some light on what it is like to deal with an ongoing chronic illness. Nevertheless, no one truly knows the impact chronic illness has on daily functioning unless he/she is the patient or someone who lives with a patient.
Bronchiectasis and NTM lung disease are often invisible diseases – to a stranger there are no visible signs that we have bronchiectasis or NTM lung disease. As opposed to other chronic diagnoses, we do not frequently use any durable medical equipment. In reality: the many differences in the sequelae of bronchiectasis and NTM lung disease and other chronic lung conditions are huge.
Overall, patients who have been diagnosed with NTM/bronchiectasis may experience a wide array of symptoms after the initial diagnosis. Some may fare well after getting treated and do not have a reoccurrence of infection; others may have ongoing reoccurrences and face lifelong challenges. In this blog, I will point out some challenges that you may face, but at the end of each section, I will give you some advice on how you can tackle these challenges and tips for managing your condition.
Chronic illness impacts every aspect of your life.
Family dynamics
The stamina needed to deal with basic needs of self/children/family is greatly affected by bronchiectasis and NTM lung disease largely because most patients deal with some level of fatigue. Spouses or significant others may not understand the patient’s endurance and will continue to push their partner to do more than she/he is capable of. It is hard for a young child to comprehend that her mom or dad just does not have the energy to do simple tasks such as help with homework nor attend every school event.
My advice: Patients must prioritize what activities they feel are most important to them. I took a class on energy management while I was a patient at National Jewish and actively chose to use my energy for caring for my young daughter over other possible (and appealing) energy-consuming options.
Recreational/social
Bronchiectasis and NTM lung disease patients’ symptoms frequently fluctuate with variables outside of their control — the humidity, rapid weather changes, barometric pressure, ozone, etc. These symptoms impact breathlessness, endurance, and stamina. Many patients cancel plans due to lack of stamina or may want to leave early from an event. By making these adjustments, we may at times be misunderstood by others.
My advice: If you communicate your needs, your true friends will accept your predicament and will not get upset when you cancel plans. I have learned that the quality of our relationships is more important than the quantity of relationships; it is not the number of friends but the connectedness that matters.
Staying Healthy
Individuals that have bronchiectasis and NTM lung disease have compromised immune systems.
My advice: Patients should consider making lifestyle changes. Avoiding crowded places like movie theaters, concerts, and public transportation may help prevent exposure to germs. This is a lifelong shift in thinking, not the temporary change that most people have experienced and complained about throughout the pandemic. Major psychosocial adjustments need to be made. Setting boundaries with others is key.
Daily life
Being a bronchiectasis and NTM lung disease patient is often a full-time job. Finding the right doctors and pulmonary rehabilitation therapists with experience and empathy can be a challenge. The time involved in MD visits (pulmonologist, audiologist, ophthalmologist, infection disease specialist, immunologist) — waiting in a doctor’s reception area and then in the exam room — can be brief or may take hours. Daily tasks like airway clearance, nasal washes, lab work, medication management, going to the pharmacy, insurance company communications add to the exhaustion which may already exist from and exacerbation or a new diagnosis of an NTM infection.
My advice: These illness-related activities do not end for many patients but become a way of life — the “new normal.” Although these activities may curtail much of your free time (and energy), find time in your day for a “mental health break”. Spend a small time each day doing something that your love or an activity that calms your anxiety and relaxes your mind.
Career
At times, patients with bronchiectasis and NTM lung disease may feel the need to stop working or modify their current job. In doing so, many give up the personal fulfillment and the monetary rewards of a career. This alone can be extremely depressing for those who have obtained advanced degrees and are at the pinnacle of their career when diagnosed with this disease, it’s especially heightened for people who thrive with social activity. Subsequently, cabin fever year-round can be very frustrating leading to loneliness and social isolation. Being out of the workforce may affect a patient’s feeling of competence and self-esteem. Angst, hopelessness, and helplessness are emotions that many patients with chronic disease experience.
My advice: Self-acceptance and self-worth do not have to be defined by certain roles. It is possible to find new meaning, purpose. Self-compassion and self-care are crucial. Get involved in programs that inspire you and others. You may find that your strengths can still be used for programs and organizations that give back and help others.
Mental Health
Some bronchiectasis and NTM lung disease patients feel as if they are losing control of their lives, which can be extremely difficult and frustrating.
My advice: I denied grieving my losses for years. If you have been recently diagnosed, I encourage you to go through the stages of grieving as one should. Share how you are feeling with someone you trust. Most psychologists and social workers still do not understand the impact NTM can have on the lives of patients. Seek professional help with someone who truly understands chronic illness. A counselor who is trained in acceptance and commitment therapy is highly recommended.
Acceptance and commitment therapy (ACT) is an action-oriented approach to psychotherapy that stems from traditional behavior therapy and cognitive behavioral therapy. Clients learn to stop avoiding, denying, and struggling with their inner emotions and, instead, accept that these deeper feelings are appropriate responses to certain situations that should not prevent them from moving forward in their lives.[1]
We can’t always be acting “happy, happy, joy, joy”— for this may be indirectly toxic. “Toxic positivity” is a new term for always being happy regardless of what you are dealing with. It can silence negative emotions, demean grief, and make people feel under pressure to pretend to be happy even when they are struggling.[2]
I believe that we must make our health our new priority, find that new normal, and identify strategiesto effectively deal with the impact of this chronic illness. If we identify the values in our daily lives that are most important to us, we can then set goals and recognize the obstacles that are keeping us from moving forward. The positive aspect of NTM is that it has opened my eyes to what is truly important in my life. I have learned not to sweat the small stuff and I am still working on accepting my “imperfect life.”
Don’t lose hope. Life is always changing. I was reluctant to work indoors or in a health care setting due to concerns with exposure to germs. Now, Zoom and at other at-home opportunities have opened up for all — working within your limitations may be a new possibility.
We must be strong and not let our chronic conditions win. Many pharma companies are in clinical trials for NTM and bronchiectasis drugs. More research is being funded. We have come along way and are now on the right trajectory. There is now HOPE, light at the end of the tunnel.
Hold on, let us offer you the support and education to empower you to improve your quality of life via the Bronchiectasis and NTM 360 website.
Be proactive with preventative measures, not reactive to infections and their sequelae. An old favorite quote of mine is from Winston Churchill: “I never worry about action, but only inaction.”
References:
- https://www.psychologytoday.com/us/therapy-types/acceptance-and-commitment-therapy
Other references:
https://positivepsychology.com/act-acceptance-and-commitment-therapy/
https://www.psychologytoday.com/us/blog/the-high-functioning-hotspot/202107/what-is-toxicpositivity
https://www.verywellmind.com/what-is-toxic-positivity-5093958