A new study of more than 2000 individuals who are diagnosed with chronic obstructive pulmonary disease (COPD) found that patients struggle with a range of other physical and emotional symptoms, which go beyond the respiratory impairments that are well known to providers.

The study which was conducted by the Health Union national survey, ‘COPD in America 2017’, was released through COPD.net which is the Health Union’s online community. It found that, health care providers were often not very helpful in addressing issues related to the emotional impact that COPD patients were struggling with.

COPD is an umbrella term used to describe progressive lung diseases including chronic bronchitis and emphysema, where changes in the airways block the normal air flow in and out of the lungs causing shortness of breath. It is estimated that over 65 million people worldwide have moderate to severe COPD this is including 15 million adults in the United States.

Breathlessness is the most common and toughest symptom to manage according to 84 percent of the respondents, yet they also mentioned a number of other frustrations and problems that they face. 81 percent of the respondents reported experiencing fatigue and getting tired easily; 66 percent reported weakness and being tired while exercising and 52 percent reported pain, chest tightness and pressure.

Leon Lebowitz, respiratory therapist and COPD.net contributor explained that while a number of people may think that COPD is just a disease of the lung, the reduced oxygen as a result of lung damage can affect every part of the body. For instance, fatigue is exacerbated by the lack of oxygen making daily functioning more difficult.

{{cta('b59df0c1-c4de-47a8-8e1c-0d33d4b414aa','justifycenter')}}

“It is a difficult balancing act. Breathing is the primary issue – it is what brings people to the Emergency Department,” Lebowitz said. “People often come in and say ‘if I can breathe, I can deal with everything else.’ For a person to adjust, they have to learn to pace themselves. So if they have a bad day, they take it easy, and when it is a good day, they enjoy life.”

Another mysterious yet frequently reported symptom is rib cramping. Thirty-nine percent of respondents reported that they had experienced this symptom the preceding month. 42 percent stated that they had spoken to their health-care providers about it, but 69 percent of this portion reported that they walked away from the visit without a solution or treatment for the problem.

“I wish my physician understood the cramping in my ribs. I feel that they don’t have an explanation as to why I get these cramps and they are very painful,” reported one of the respondents.

Keeping that frustration in mind, the survey also not surprisingly unveiled the emotional impact of COPD which often takes a back seat to the physical challenges, even though it can be more overwhelming than it is perceived.

For instance, 51 percent of the respondents reported problems with panic disorders or anxiety to their doctors, and only 40 percent of this portion mentioned that their doctor was effective in helping them manage it. Additionally, 24 percent have a mood disorder such as bi-polar disorder or depression.

“Depression is a real symptom of COPD,” said Michelle Vincent, COPD.net patient contributor. “Finding support groups was a huge boost. I like being able to talk to and get to know people who are going through the same things that I am. It makes me feel like I’m not alone. I like being able to give back to the community too.”

A majority of the respondents stated that they did not feel confident that they could keep the emotional distress caused by COPD from interfering with their lives. Regardless of the challenge they faced, only 19 percent reported that they are currently involved in a COPD support group. A patient contributor from COPD.net said, “I wish my doctor would better understand the anxiety and stress I am feeling about it. He never helps me address this.”

The survey revealed that chronic coughing, having trouble sleeping and unintended weight gain were among the issues raised under the most challenging and frustrating symptoms the respondents faced. The respondents also reported that it was not easy to avoid COPD triggers since they are everywhere in the environment.

A flare can be triggered by almost anything especially strong scents and weather changes among many others. Examples of such triggers include mildew, smoke, mold, dust, chemical fumes, grass, cleaning products, perfumes and respiratory infections.

Thirty-five percent of the respondents found it to be somewhat easy to avoid the triggers, 27 percent reported that it was not easy at all, 25 percent reported that it was slightly easy, 12 percent reported that it was moderately easy and 1 percent found it to be very easy.

When a flare hits, it is very common for a patients to experience incontinence. It isn’t just the lungs that get affected during a flare, the breathlessness and the intense coughing causes incontinence in 59 percent of the respondents. In the survey, 19 percent reported experiencing incontinence often, 23 percent experienced it sometimes and 17 percent experienced it rarely. 41 percent did not experience it at all.

Many of those that experience incontinence find it to be very embarrassing and due to the shame that many sufferers feel, it is under-discussed, leading many to think that they are the only ones with the problem. Incontinence refers to the inability to hold your urine or bowel movements long enough to get to a toilet.

The fear of embarrassment prevents very many patients with COPD from enjoying various aspects of life and leads to them distancing themselves from other people. Incontinence should however not be seen as unacceptable or embarrassing behavior because it is an involuntary operation of the body.

When the respondents were asked to describe COPD in one word some of the descriptions included; irritating, avoidable, nasty, lonely, draining, thief, misery and nightmare. They expressed a lot of anxiety and fear over the future with COPD. It is however important to note that COPD is not a death sentence and that there are very many people that are willing to lend a helping hand at any given time.

“The results of this survey clearly illustrate why COPD.net has been so successful in providing support to people living with COPD,” said Tim Armand, president and co-founder of Health Union. “ The world of the COPD patients can seem a lonely, confusing and isolating place, but here they can find a community that understands, is willing to listen, and provides information they can use in their daily lives.”

{{cta('fa8abc2a-1e88-4fa3-82fd-1cb5b9ed43b2','justifycenter')}}