Explaining COPD To Family and Friends
My mom talked about it to some of her friends and family, but over time, she stopped talking to most of them about it unless they opened the conversation. Maybe it was because they didn't want to know what it was really like, or maybe it was because they felt helpless to make things better.
I always felt that her close family and friends should know more than they did.
If I would have been given permission from my mom, this is what I would have told them:
COPD is serious. Time may be passing without much change visibly, but that doesn't mean that life is not difficult. Things that are easy for those of us without this disease are incredibly difficult for those with the it. For example just reaching up into the cabinet for a box of cereal can cause shortness of breath. Cooking a meal or taking a shower can take twice as long simply because of the number of times needed to stop and rest.
The loss of independence weighs heavy on the heart. Things that they never thought would require help, no longer happen on their own. From needing someone to tag along while out of the house, to dealing with the fear of not being able to breathe, to needing someone to help bathe them, each one chips away at their independence. It doesn't take long for them to feel that they are no longer the person that they used to be.
Anxiety increases as SOB, shortness of breath, episodes become more frequent. Being short of breath can feel like death is near. Then as the oxygen levels increase, emotions are raw. Imagine having a bag over your face. It's not a pleasant image, is it? Imagine the fear that will cause. Then imagine that the bag is removed, but you know that it will happen again. You just don't know when. Remember this the next time that you get frustrated with someone that you know with COPD because of their anxiety.
What you should know beyond this is that they are still alive! They still love, still laugh and still cry. They want to know that you will remember them beyond the disease, and most want to simply be heard. As many times as they tell you that they don't want to go and do things with you anymore, you should know that this eats away at them. It's not that they don't want to be with you. It is that they are dealing with so many different things. They are wondering if they are a burden, if they will be able to keep up, and if the fears that they deal with daily are true.
These are the things that you should know about COPD.
Mom never let me get that real with any of her family and friends, but I really wish that they had known. If they would have known this little bit of information, just the tip of the iceberg really, they would have seen her the way that I did, the most courageous woman I have ever known.
Do you have questions about your COPD diagnosis?