In 2015, Phyliss DiLorenzo was prepared for the worst after a multi-day hospital stay for severe breathing issues. She suspected lung cancer because of her family history with the disease and was relieved when her clinician told her she had chronic obstructive pulmonary disease, or COPD.
Then DiLorenzo thought about her grandmother, who’d been diagnosed with emphysema, a type of COPD, years earlier, and how much the disease changed her.
“I watched my grandmother change from an out-and-about, on-the-go woman to someone who never left her home,” DiLorenzo said. “She even stopped walking her dog.”
It wasn’t long after her diagnosis that DiLorenzo experienced the connections between anxiety, depression and other mental health challenges and life with COPD. Her fight to breathe increased her anxiety and she grew depressed when fatigue left her unable to complete her daily tasks at work. Her healthcare team back then could address her physical needs, DiLorenzo said, but didn't know how to respond when she mentioned she was depressed.
The mental health “downward spiral”
DiLorenzo is one of nearly 16 million Americans living with COPD, with some estimates suggesting another 15 million remain undiagnosed. COPD, a group of chronic conditions that prevent airflow to the lungs and make it difficult to breathe, is one of the top 10 causes of death in the United States. Emphysema and chronic bronchitis are among the conditions that fall under the COPD umbrella, and risk factors include long-term exposure to smoke, fumes, dust and chemicals. Cigarette smoking is the most common risk factor for the disease.
After a COPD diagnosis, treatment options focus on helping patients breathe more easily and preventing further lung damage, but ignoring potential mental health concerns can worsen overall outcomes. As many as 55% of COPD patients have been estimated to be living with anxiety, and other studies estimate COPD patients have more than double the instances of depression than the general population. Research also suggests that between 26% and 43% of COPD patients experience both anxiety and depression, resulting in more severe physical and mental health symptoms.
“Providers need to be aware of the mental health difficulties their COPD patients are likely to have,” said David Mannino, M.D., chief medical officer and cofounder of the COPD Foundation. “It can be difficult to separate how much of what is going on with a patient is related to worsening COPD or to the mental health issues associated with it.”
Anxiety, depression and other mental health struggles in COPD patients have multiple causes. There can be anger and frustration about the diagnosis itself or a sense of loss related to losing the ability to breathe freely, move without fatigue and do activities one used to enjoy. Some patients become more socially isolated as a result. Patients can also have difficulty sleeping and chronic stress due to their breathing issues. These feelings also don’t stop with the patient themselves. Caregivers can experience stress, burnout and other mental health concerns as they attempt to help their loved ones.
Read: Caring for Someone with COPD >>
In some cases, some patients can experience anxiety or depression related to external stigma surrounding COPD. Because COPD has a significant correlation with smoking, some studies have found that patients can blame themselves for developing the disease.
Mannino noted that as the physical symptoms of COPD create mental health issues, those mental health conditions in turn can make patients’ physical health worse. COPD patients with mental health conditions can have more serious flare-ups, higher rates of hospitalization and higher mortality rates than COPD patients without mental health issues.
“Because one of the main symptoms in COPD is being unable to breathe, this can cause people to feel anxious,” Mannino said. “Medications to treat COPD increase the heart rate, which can also feel like an anxiety attack. COPD has the potential to decrease a person's activity, which can lead to social isolation and depression. As COPD gets worse, symptoms get worse and activity tends to become more limited.”
With any illness, chronic stress weakens the immune system, and in COPD patients, that makes them more prone to experiencing respiratory infections and flare-ups. Because depression saps motivation and energy, patients could also struggle to eat properly, exercise, follow their treatment plan and get needed rest. Anxiety about breathing issues can prevent a patient from getting physical activity, which is crucial to conditioning the heart and lungs to better process oxygen.
“[Decreasing activity] is the worst thing that patients can do,” he said. “We stress activity as a means of interrupting this downward spiral.”
DiLorenzo is also aware of how shame and stigma can also prevent patients from receiving the care they need. Her grandmother with emphysema never smoked, but her mother, who was a smoker, developed lung cancer.
“I believe my mother blamed herself and refused treatments due to her shame and blame,” DiLorenzo said. “That was not the stance I wanted to adopt for myself."
Treating all aspects of COPD
Now 68, DiLorenzo has lived more than a decade with COPD. She’s had recent hospitalizations that have made her more anxious and depressed because she’s had more difficulty doing household chores, carrying groceries or going for long walks. She said she has gotten slower, faces more physical limitations and requires more breaks in between tasks.
Still, she said she makes time for the things she knows can boost her mental health, like meditation, exercise, time outdoors, reading and enjoying music. She’s also found a sense of purpose through advocacy for COPD and all lung disease patients, getting involved with COPD Foundation committees and taking on leadership roles.
“Staying involved in meaningful activities that engage my mind is key,” she said.
To maintain their physical and mental health, Mannino advises patients to talk with their clinicians about their current COPD therapy to make sure it’s still working well for them and to continue exploring treatment options as more new therapies enter the market. He said patients should continue focusing on the areas they can control — diet, exercise, vaccinations and avoiding exposures to environmental triggers — while continuing their treatment plans.
“One of the best treatments is pulmonary rehabilitation, which not only stresses improving physical activity but provides a social network with other patients who also have difficulty breathing and may be socially isolated,” Mannino said.
Support networks can play a significant role in boosting mental health. In-person and online COPD support communities provide connections for patients to share their stories and get accurate information, advice and help. DiLorenzo credits her partner and family for their care, as well as her current clinician.
“If any COPD patient is experiencing anxiety or depression, I urge them to speak with their doctor about it,” she said. “They should know they’re not alone.”
Resources
American Lung Association - Finding COPD Support
This educational resource was created with support from Sanofi and Regeneron.
- COPD 101 ›
- Healthy Living With COPD ›
- Clinically Speaking: Questions and Answers About COPD ›
- Freedom to Breathe: Disparities and COPD ›
- Stigma Can Be a Barrier to COPD Care ›
