While the physical impacts of COPD have been studied extensively in the clinical setting, little research exists on the emotions and feelings a patient faces while living with this chronic disease.
Understanding what the patient is experiencing – both physically and mentally – is critical for health care providers to guide individual care. This is why more research must be done.
I recently had the results of a series of interviews with severe COPD patients published in The Journal for Nurse Practitioners. This research uncovered several common themes that COPD patients struggle with psychologically, and also showed that health care providers may not fully understand this burden.
Making Sense of the Diagnosis
Breathlessness is by far one of the first, and most commonly reported, symptoms of COPD. In many cases, this is accompanied by feelings of fear and panic.
It is easy to feel afraid when you don’t know what is happening to your body. All of the patients in the study spoke about being confused when they first experienced symptoms of COPD. They knew something was wrong, but their health care provider gave a vague diagnosis or little to no education about the condition. Many times, they were just told to quit smoking or use an inhaler. They didn’t fully understand or feel supported by their health care provider.
Many patients also felt guilt for allowing their bodies to get to this point. They blamed themselves for smoking and believe that they caused this to happen.
Feeling Like a Burden
In the study, patients overwhelmingly felt like they were a burden – to their loved ones and their own bodies.
Carrying supplemental oxygen triggers feelings of depression, anxiety and social isolation.
If I leave the house will I run out of oxygen? What if the sound of the machine bothers people around me? It’s so hard to move around with this machine – it’s dead weight. Patients even commented on their physical appearances while wearing oxygen.
Preparing for End of Life
Severe COPD is often met with increased fear about the end of life. Many patients in the study admitted having a difficult time accepting that this is how they were spending their last years. They also often had a hard time being optimistic about the future.
These patients were brave enough to share their stories, but I know that there are many more patients out there struggling with these same emotions and feelings. It is important to know you are not alone, and that sharing anything you might be feeling with your health care provider helps them provide the best possible treatment for you.
There are many resources they can offer, including social support groups, end of life planning, and counseling.