Kara didn’t realize her shortness of breath was anything to worry about at first. She grew up with severe scoliosis that required multiple spinal fusions and which meant that, due to her spinal curvature, she dealt with reduced lung capacity most of her life. Though her family had a history of lung disease, the stress from her condition, as well as being diagnosed with adult ADHD, led Kara to turn to smoking for comfort. Though she always felt guilty about it, and tried to quit multiple times, Kara would continue to smoke even after a routine chest X-ray was irregular.
Early warning signs of chronic obstructive pulmonary disease (COPD) include shortness of breath, cough that may bring up mucus, chest tightness, fatigue and reoccurring lung infections like bronchitis. In her early 40s, Kara was diagnosed with COPD. “I was really angry at myself because I know smoking is one of the main causes of COPD. So, when I was diagnosed, I felt a great amount of shame,” Kara said. “I didn't feel like I could share my feelings with anyone because of the stigma around smoking. It was very isolating. And this stress had me reaching again for a cigarette and the cycle continued.” Kara also discovered that smoking rates are higher for people with ADHD, which added to her hopeless feeling.
It took about 18 months but Kara was able to quit smoking after over 30-years of nicotine dependence.
Since her diagnosis, Kara has made major life changes to make it easier to manage her COPD. Besides quitting tobacco, she now works out regularly and maintains a healthy diet and sleep schedule. “I stopped smoking completely and make sure I am not exposed to any smoke or fumes. I have changed cleaning products to lessen exposure to lung irritants, and I even avoid using hairspray,” she said.
In addition, she worked with her pulmonologist to find a medication regimen that worked best for her. She continues to monitor her symptoms daily and has monthly check-ups to make sure that she is working closely with her healthcare providers. “I even asked for a low-dose CT scan to screen for lung cancer, which my doctor was surprised about because I no longer smoked. But I explained my history and she helped me get approved by my insurance company and I got the scan,” Kara said.
COPD and Emotional Health
Kara is the first to tell people that if you are diagnosed with COPD, you need to take it seriously. “You should find a pulmonologist that you have a good rapport with so that you can be open and honest and get treated as a whole person,” she said.
In addition, Kara believes the link between emotional health and a COPD diagnosis is something that needs more attention. “If someone has an underlying undiagnosed or untreated mental health issue like anxiety or ADHD, receiving treatment for that is just as important and will ultimately help with your COPD treatment,” Kara explained.
Kara understands firsthand how long-term smoking can be linked to anxiety, as she used it for years as a coping mechanism. “I think it might be a good idea for psychiatrists and therapists to be involved in the COPD treatment process because there is such a range of mental health issues that can make identifying and living with COPD more challenging,” she said.
What adds to this anxiety is the stigma that still exists around chronic lung diseases like COPD and lung cancer, in which smoking is a leading cause. This is why Kara doesn’t tell many people about her condition, she fears that they will shame her for the smoking habit that led to her COPD diagnosis. “It’s one thing if you are in your 80s, but if you are younger people look at you differently. Most people know that COPD is linked to smoking, and they don’t understand that it is not enough to know that smoking is bad for you. It is incredibly addictive, the tobacco company makes it that way,” she said.
Connecting with Others
For anyone struggling with the day-to-day management of COPD, the American Lung Association has resources that help. The Patient and Caregiver Network is a free, online support program that provides direct access to resources and connection. Support communities like Better Breathers Club in person meetings and Inspire online communities offer the option to connect with other people with a similar diagnosis. In addition, the Lung HelpLine offers assistance, with an expert just a phone call away.
“It’s important to forgive yourself and not let your fear or anger stop you from getting the best care. Also, though it may feel like it sometimes, you are not alone,” Kara said. Learn more about COPD and emotional health at Lung.org.
Blog last updated: April 25, 2023