In 2015, Phyliss DiLorenzo was prepared for the worst after spending several days in the hospital for severe breathing problems. She suspected lung cancer based on her family history and was relieved when her doctor told her she had chronic obstructive pulmonary disease (COPD).
Then DiLorenzo thought about her grandmother, who had been diagnosed with emphysema, a type of COPD, years ago, and how much the disease had changed her.
“I watched my grandmother transform from an on-the-go, on-the-go woman to a person who never left home,” DiLorenzo said. “She even stopped walking her dog.”
It wasn’t long after her diagnosis that DiLorenzo realized the connections between anxiety, depression and other mental health issues and living with COPD. Her struggle to breathe increased her anxiety and she became depressed when fatigue left her unable to complete her daily tasks at work. Her health care team at the time could address her physical needs, DiLorenzo said, but didn’t know how to respond when she mentioned she was depressed.
The “downward spiral” of mental health
DiLorenzo is one of nearly 16 million Americans living with COPD, with an estimated 15 million more still undiagnosed. COPD, a group of chronic diseases that prevent airflow to the lungs and make breathing difficult, is one of the top 10 causes of death in the United States. Emphysema and chronic bronchitis are among the diseases that fall under the umbrella term COPD. 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 making it easier for patients to breathe and preventing further lung damage. However, ignoring potential mental health problems can worsen overall outcomes. It is estimated that up to 55% of COPD patients suffer from anxiety, and other studies suggest that COPD patients are more than twice as likely to suffer from depression as the general population. Research also suggests that between 26% and 43% of COPD patients experience both anxiety and depression, leading to more severe physical and mental health symptoms.
“Providers need to be aware of the likely mental health issues their COPD patients face,” said David Mannino, MD, chief medical officer and co-founder of the COPD Foundation. “It can be difficult to distinguish how much of what is happening in a patient is related to the worsening of COPD or the associated psychological problems.”
Anxiety, depression and other psychological problems in COPD patients have several causes. There may be anger and frustration at the diagnosis itself, or a sense of loss associated with the loss of the ability to breathe freely, move without fatigue, and engage in activities that one once enjoyed. This makes some patients more socially isolated. Patients may also suffer from sleep disorders and chronic stress due to their breathing problems. These feelings don’t stop with the patient themselves either. Caregivers can suffer from stress, burnout, and other mental health issues as they try to help their loved ones.
Read: Caring for someone with COPD >>
In some cases, some patients may experience anxiety or depression related to the external stigma associated with COPD. Because COPD is significantly linked to smoking, some studies have found that patients may blame themselves for causing the disease.
Mannino noted that the physical symptoms of COPD lead to mental health problems, and these mental illnesses can, in turn, worsen patients’ physical health. COPD patients with mental illnesses may experience more severe flare-ups, more frequent hospitalizations, and higher mortality rates than COPD patients without mental health problems.
“Because one of the main symptoms of COPD is not being able to breathe, this can cause anxiety in people,” Mannino said. “Medications used to treat COPD increase the heart rate, which can also feel like an anxiety attack. COPD can decrease a person’s activity, which can lead to social isolation and depression. As COPD worsens, symptoms worsen and activity tends to become more limited.”
With any illness, chronic stress weakens the immune system and leads to increased susceptibility to respiratory infections and flare-ups in COPD patients. Because depression saps motivation and energy, patients may also have difficulty eating properly, exercising, sticking to their treatment plan, and getting the rest they need. Fear of breathing problems can prevent a patient from engaging in physical activity, which is critical to conditioning the heart and lungs to better process oxygen.
“[Decreasing activity] is the worst thing patients can do,” he said. “We emphasize activity as a way to break this downward spiral.”
DiLorenzo also recognizes that shame and stigma can prevent patients from receiving the care they need. Her grandmother, who had emphysema, never smoked, but her mother, who smoked, developed lung cancer.
“I believe my mother blamed herself and refused treatments because of her shame and blame,” DiLorenzo said. “That wasn’t the attitude I wanted to take for myself.”
Read: Stigma can be a barrier to COPD treatment >>
Treating all aspects of COPD
DiLorenzo, 68, has lived with COPD for more than a decade. She had recent hospitalizations that made her more anxious and depressed because she had more difficulty doing household chores, carrying groceries, or taking long walks. She said she has become slower, has more physical limitations and needs more breaks between tasks.
Still, she said she makes time for the things she knows can improve her mental health, such as meditation, exercise, spending time outdoors, reading and enjoying music. She has also found purpose through advocating for COPD and all patients with lung disease, serving on COPD Foundation committees and taking on leadership roles.
“It’s important to stay involved in meaningful activities that keep my mind occupied,” she said.
To maintain their physical and mental health, Mannino advises patients to talk to their doctors about their current COPD therapy to make sure it is still working well for them, and to continue to seek treatment options as more new therapies come onto the market. He said patients should continue to focus on the areas they can control – diet, exercise, vaccinations and environmental avoidance – while continuing with their treatment plans.
“One of the best treatments is pulmonary rehabilitation, which focuses not only on improving physical activity but also on creating a social network with other patients who also have difficulty breathing and may be socially isolated,” Mannino said.
Support networks can play an important role in promoting mental health. In-person and online COPD support communities provide patients with connections to share their stories and receive accurate information, advice and help. DiLorenzo thanks her partner and family, as well as her current doctor, for their care.
“If a COPD patient is experiencing anxiety or depression, I strongly encourage them to talk to their doctor about it,” she said. “They should know that they are not alone.”
This educational resource was created with support from Sanofi and Regeneron.
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