The Silent Struggle

By Barbara Moore

2 min read

It is true that when you have a chronic illness like COPD, your daily suffering will be a struggle that others cannot understand.

My symptoms go over their heads. I am never truly sure if they want to understand or if it is just too much for them to understand.

Gasping for air and unspoken fear

I see them from the corner of my eye, just watching me as I am gasping for air, and sometimes, I can see the terror in their eyes. Unfortunately, it doesn’t last long enough for them to ask me what it feels like.

Once my breathing has recovered and the event is over, everyone simply moves on as if nothing is wrong. But I know better.

After these events, my lungs continue their decline.

The silent truth behind shortness of breath

Doctors, friends, and family have never asked me to explain what happens or what it feels like when the shortness of breath episode is in full swing. They assume they know what is happening, and everyone has their own special opinion of what can heal me.

But their assumptions are often very wrong. Since we all suffer from the same disease but with different symptoms, how can they know what is happening when they don’t ask?

Just once, I would like to be asked about how it feels. I would never want anyone to feel the anxiety that comes from being unable to catch their breath.

I would never wish them to feel the terror I do when my lungs fail me, but I would like to be acknowledged. Maybe they don’t care to know, or perhaps they are not brave enough to ask for fear of finding out the truth.

It isn’t easy to watch, but I think it is a question I would ask because I would want to know. Saying it out loud helps.

It is cathartic, and if only someone listened, I would be happy to tell them.

Blame, guilt, and unfair consequences

Some people could be feeling guilt every time they look at me. After all, they smoked as much as I did or perhaps more and loved it the way I did, but they didn’t get caught.

They have not had to pay for their sins the way I do every day. In spite of that, many will still point the finger at me and say that I made my bed, and now I should lie in it!

This attitude is far from playing fair and should not be tolerated.

Living life on my own terms

It is up to me to live my life in a fashion that I approve of and do my best for myself. Regardless of what others think or feel, I still have a good life and am entitled to be heard.

When people don’t ask, I won’t tell.

Editor’s Note: We are extremely saddened to say that on January 7th, 2024, Barbara Moore passed away. Barbara’s advocacy efforts and writing continue to reach many. She will be deeply missed.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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tomboyer46 Member
 Another good one...I am fortunate as I have not had one of those "fits" around people. the privacy of my own home is bad enough...
1. Leon Lebowitz, RRT Member
 <inline-mention username="tomboyer46" user-id="4140736"/> Hi again, Tom - it's always good to hear from you here. I will wish you 'good luck!" for the pulmonary function test (PFT), that is scheduled for today. (As it is already 11:20 am, perhaps you have already had the diagnostic study). And, we will look forward to hearing whatever you choose to share - about the test itself and/or the doctor's visit scheduled for Tuesday. Warm regards, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
2. Melissa.Arnold Community Admin
 <inline-mention username="tomboyer46" user-id="4140736"/> Hi Tom, how are you doing? Did you end up getting your PFT done as planned? I wonder if you have gotten results and, if so, how you feel about them. Remember that whatever your results are, the numbers don't tell the entire story of your health or future. Some people have better numbers but are really struggling, some have low numbers but are doing pretty well, all things considered. The key is to keep doing the best you can to take good care of yourself! We are here for you and are rooting for you. -Melissa, <a href='http://copd.net' target='_blank'>copd.net</a> team
kloker Member
<inline-mention username="Barbara Moore" user-id="2412663"/> - Oh, yeah! This is one of those things where I find it unfathomable when my kids get angry with me when I start "harping" at them to stop smoking! Do they not see me and how I have to live? Do they not understand the fear I have to live in? Are they stupid? DO they just not care about me? All these things and a bunch more run through my head every time this comes up. Nowadays this is mostly only with my youngest son Ryan and his wife Casey, who are more fully immersed in smoking. They will interrupt and stop me - they don't want to hear it, and I am the bad guy if I say anything. It's very frustrating. But then I have to remember that I was just like that until I had no other choice. Until the day I found myself unable to breathe! Was I really that Freaking stupid? YEP!!! But then I have to remember that this is the power of addiction to the most powerful, most addictive substance known to man - nicotine. And I full well know because I've been down ALL the roads. My modes of transport included big trucks, papers, bottles, and syringes. In my lifetime of "adventure" I was addicted to literally everything possible. I was then able to become clean and sober, except for the cigarettes, till recently. Every one of them tried to kill me, and it looks now like the winner will definitely be nicotine. My only still remaining addictions are Prednisone and ice cream. So I have set a fine "bad example" for my descendants, and they are not listening, and that is very frustrating, most especially because I know - I didn't listen either. It makes me want to wring their necks or hit them in the kneecap with a hammer to get their attention, but even though they are looking right at (when they see me) why they need to quit smoking and do it now, they have not. I will never give up, but I also know it will probably never work. They are just like me. Promising themselves that they will quit in time, just not yet. They still have time to enjoy the bad habit before they have to quit. And I cannot convince them. But I will keep trying, because I love them and I don't want to see them have to go through this. It's the circle of death. It's also why they never visit.
1. Barbara Moore Moderator
 <inline-mention username="kloker" user-id="4235094"/> I have the same issue with my kids. That is the power of free choice and I learned a long time ago not to harp on it because it does no good but it will harm our relationship. We understand that this addiction is a powerful one. My doctor told me it was worse than being addicted to heroin! Imagine the power it has and with todays struggles out kids may need that crutch. One thing I know for sure is that one day they will quit. One way or the other. Barbara Moore (author)
whirledpeas Member
Hi Barbara, I makes me angry to think that someone is either minimizing your symptoms, or justifying your panic and fear because you smoked. My brother did that to me for years. He would say, "You earned it." I finally said, "I know I earned it, but can I please be done paying for it?" He sheepishly agreed, and hasn't mentioned it since. However, he lives half the continent away in Wisconsin, and I haven't seen him in years, or he would probably still be trying to lord it over me, like big brothers do. I am lucky to have married a man, and raised daughters, who are compassionate and helpful, so I don't have to deal with the rudeness and lack of understanding. But I can remember, having a brother, how unpleasant it is. In my limited experience with others in the last few years, most of them dismiss it as similar to having a chest cold or something. Don't know, don't care. I really think some people are afraid to acknowledge it, because it is too big. Too deadly. If they minimize it, you won't get sicker. That can be a form of kindness, or cowardice. I would rather lay it out on the table. My husband and I discuss it, but then we laugh it off, so it doesn't hang heavy in the air over our conversation.
1. whirledpeas Member
 <inline-mention username="Barbara Moore" user-id="2412663"/> Never quit talking! You are one of those critically important connecting threads that hold us all together.
2. Barbara Moore Moderator
 <inline-mention username="whirledpeas" user-id="2415812"/> Thank you so much. I can't tell you how much that means to me. You too are appreciated. Barbara Moore (Author)
Tom B Member
Yep. Confusing as it may be. The results were the same as they were in June of last year, still 40% capacity. Why then am I so very SOB as I asked the Dr? His response was it is a seasonal "thing". I replied that the seasons have never bothered me before and I am doing the same stuff. His response was He is seeing more of it this year than he has seen in a long time. I asked then it will go away then right? He said he did not know...as the issue is in the lower section of my lungs................Of course I can not locate any notes on this conversation while other Dr.'s will post notes. 
1. Leon Lebowitz, RRT Member
 <inline-mention username="Tom B" user-id="4219668"/> Hi Tom, and thanks for weighing in and sharing your own recent experience managing this disease. In my experience, the kind of question & answer session you had with your doctor would not typically appears in the medical record. From my perspective, this is simply an anecdotal conversation (from the doctor's view point), with the patient (you!). As you may be aware, COPD can change how it affects patients - it can also change in how it affects one patient from day-to-day, season-to-season and yes, even year-to- year, through the years. This may be the kind of explanation that applies in your case. What do you think? Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)

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