What You Wish Friends and Family Understood About COPD
“You seemed fine yesterday.” “You don’t look sick to me.” “So, do you still smoke?”
How much easier would it be if people just understood COPD? If you didn’t have to be the person constantly correcting them. If maybe, your family understood why you were fine at lunch yesterday, but can’t go to dinner tonight because you had a flare.
As annoying as it can be, each time you educate someone about what it’s really like to have COPD, you’re gradually making it better for others. We asked what you wish others understood and you in the community agreed that the following areas of COPD management are in desperate need of further public awareness:
“When you struggle to do something as simple as breathing, it affects everything”
It doesn’t take a broken leg or sprained ankle to struggle with mobility. When you don’t have enough oxygen in your blood, it affects the entire body, especially the muscles. Between chronic fatigue and increased muscle weakness, it can be extremely difficult to move around. This is one reason why increased patience was a top desire for those in the community. “Let us be slow and catch our breath.”
“Just because I look fine doesn’t mean I feel fine”
The “nose hose” is a pretty recognizable characteristic of COPD, but not everyone with COPD uses supplemental oxygen and therefore, not everyone who is struggling is wearing a visible “nose hose.” Shortness of breath can feel “like you’re dying” but is not always noticeable from the outside looking in, which is why many of you in the community expressed frustration when friends and family say “You don’t seem sick.”
“COPD is not only caused by smoking”
While many with COPD have smoked, it is not the case for everyone and therefore, should not be an assumption made by others. For example, alpha-1 antitrypsin deficiency is a very rare genetic disorder that causes insufficient protein development within the liver. This alpha-1 antitrypsin protein is crucial for protecting the lungs from damage, so those with a deficiency can develop COPD without ever being exposed to typical irritants (such as tobacco smoke). There are also numerous other irritants or infections that can cause chronic inflammation and ultimately lead to COPD, which is why upwards of 15% of individuals diagnosed with COPD have never smoked!
“Asking for help is easier said than done”
Many people believe “If someone needs help, they’ll ask for it.” But not everyone wants to ask for help, even if we need it. Independence is a luxury that many take for granted. We all strive to be independent, but unfortunately, we all reach a point when it’s not possible 100% of the time. But that is not an easy realization, and many of you in the community wish others were a bit more understanding of how difficult that is: “I know he doesn’t mind, but it kills me when my son has to bathe me” is just one example of that frustration.
As we immerse ourselves in the holiday season and prepare for the harsher weather to come, it is especially important to familiarize others with the nuances of COPD. The public will not become knowledgeable overnight, and we cannot expect them to understand everything right away, but hopefully, the more information we spread, the more apt people will be to ask questions.
Most importantly, you are not alone! This COPD community is filled with people just like you. And we want to thank each and every one of you who shared your thoughts and experiences about what you wish more people knew about COPD. You are the voice of the community!
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to COPD?