The Silent Suffering: When COPD Meets Lack of Understanding

By Barbara Moore

2 min read

Editor's Note: This article discusses domestic abuse and neglect, which may be distressing for certain readers.

The cruelest part of having COPD is the people that refuse to understand. It’s common for friends to lack understanding of the scope of your illness.

They have not seen the depth of your pain closeup. However, the deepest cut comes from family members who have seen your pain up front and personally and refuse to acknowledge the seriousness of your situation.

Heartbreaking confession of mistreatment

My girlfriend was saying how tired she was, and when I asked why she didn’t just rest for a few minutes at midday, she confessed to me that she was not allowed to rest or nap in the daytime.

It confused me, and I asked if those were doctors’ orders, and she replied it was her husband’s orders.

No matter how she felt, she had to be up to make dinner for the family and she had no days where she could catch up on the continuous fatigue that comes with COPD. He told everyone that she was lazy and useless.

Hearing her admit that she was so badly treated broke my heart. With a bit of education, he would have known better.

The unsupportive reality of COPD

Having COPD is no laughing matter. We learn that once we are diagnosed. Our disease is progressive, and currently, there is no chance of a cure.

Even if there is a chance for a cure in the future, we will likely be too far advanced for it to pertain to us. When people ask her husband what is wrong with her, he flippantly says she has a little cold.

Most of us rarely ask for sympathy. In fact, most of us are so busy beating ourselves up about how we contributed to our own disease that we have a tough time coming to terms with it.

The last thing we need now is a lack of support from those that have vowed to love us.

Recognizing and addressing emotional abuse in relationships

I am not sure how she lives like this, and I wonder if she recognizes this environment as an abusive one. Emotional abuse includes constant criticism, ignoring boundaries, and being very controlling.

You end up feeling manipulated the longer your feelings are ignored.

Your judgments are not helpful. Lend her an ear to listen, not to be judgmental. Ask if she wants change to happen.

She may have come to terms with it and has found a way to live this way. Ask if she is safe and if she is not, helping to find a safe place would be good.

Bullies are not often called out and are not used to you talking up to them. Doing so could help to alleviate some of the pressure. However, being safe is the most important thing.

Encourage her to talk to her doctor or social worker for any help they can provide.

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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CommunityMember518453 Member
I wish I had some way to help this story made me cry. I was a social worker for dfcs for over 17 years this is abuse of an adult abuse is not OK hope she will reach out and get help she will be in my thoughts and prayers 🙏 
1. Barbara Moore Moderator
 <inline-mention username="CommunityMember518453" user-id="7048433"/> Thank you. I reached out to let her know that I would provide a safe place for her if she was in need. It is hard as an adult not to interfere but we have to let her hold on to some dignity. Thanks for your concern. Barbara Moore (author)
Jennette B. Member
When I sat my 4 kids down to explain how much worse I was getting, & needed them more than ever, my 3 sons acted like I was exaggerating!! I was so heartbroken. After my last ER visit, my daughter messaged all 3 of them & read them the riot act! She is the only 1 of the 4 who is consistently on my side. She also has 5 Children, the last 4 being 7, 6,5 & 2, so she has her hands full, and 2 of her boys are on the Autism Spectrum. Obviously I can't make grown adults do anything, but it really hurts that my daughter is the only one stepping up. I will pray for your friend, that her eyes be opened to realize she is being emotionally, & mentally abused...just so sad😔🙏
1. Jennette B. Member
 @Janet Plank, Thank you so very much🥰 Y'all are like family to me, a better one😁 I have ppl in my life that also care, and help me a lot too. I just get frustrated with my sons, and yes, they all understand this disease & that it will eventually kill me, if not, one of my other comorbidities will😜 Thank you again for your kind words! Have a blessed day!
2. eat2017 Member
 <inline-mention username="Barbara Moore" user-id="2412663"/> I appreciated the article as well. It also reminded me of decades ago in my own past. Sad. We all go through things. It makes me understand how really connected we all are. This group has a lot of shared issues in our life associated de from our lung diseases.
kloker Member
<inline-mention username="Barbara Moore" user-id="2412663"/> - You make some very salient points here. I spend much of my mental life locked in a state of self-blame for my COPD and other ailments. After all, who else would I blame? It's a toxic thought process. The outcome is that in my head I deserve whatever I get from others, especially family, since I totally wrecked my own life with my smoking. My shame makes me feel I deserve how I am treated. My youngest son Ryan is the problem. Since my floor fell completely out from under me, he tricked me into believing he was the only one who cared and the only one who would help. Like a sucker I bought it. I gave him all of my medical and legal power of attorney and made him my executor. He made me a deal, that he would move me to his house and take care of me for my remaining years. Then, halfway through the move, he and his soon-to-be wife backed out completely. He said I'd have to live in a rent-controlled facility, with no support. He now had half my belongings (my shop equipment, which is worth some real money. He has since been selling it and pocketing the money, saying I owe him for legal fees and moving expenses. I am stuck here in my original house, alone since my brother (the mooch) died last summer after eating up every last penny of my retirement money covering his bills. Now Ryan has me boxed in and wants to totally control my life. Between he and Gene they have wiped me out. I am now seriously considering talking to adult protective services, as he has now checked all the boxes in their list, other than physical abuse. And all this after I spent years and all I had taking care of them. I am left high and dry. On top of all the medical stuff I am now facing, I have to do something about this, or I am going to be living under the bridge, where I cannot survive. And of course my magic mind blames me for letting myself get left in this position. The hole keeps getting deeper, and it's getting dark down here. I'm a grown-ass man, and somehow I let myself get into this, so I am going to have to get myself out somehow, if it's even possible. Yet I keep sitting here doing nothing, because it's all my fault. Aargh! Just like that woman in your pot, I am the only one who can get out of this pickle. That's the moral of the story, and I need to learn it. Years ago, I helped a friend of my wife's. She was gorgeous, literally hot. She had two little ones and an abusive husband. He was beating her badly. My wife asked me to help. We let here stay with us for a bit. I went over there with a friend, and I beat the living hell out of this guy. He needed it badly. He had put his wife in the hospital several times and it was getting worse. I beat him badly enough to send him to the hospital and told him I'd make him famous if he laid a hand on her again. He didn't. Instead, over the next year (of course she went back to him), his abuse turned mental and emotional. Then she committed suicide. The guy wound up in prison, and the grandparents took the kids. It broke my heart so badly I swore I would never get involved again, and I didn't. I will never forget the pain that came knowing that no matter what I did I could not save her. She was only 29. The lesson there is that no one can help me unless I help myself. Oh, and this: Domestic abuse is not something that can be solved by anyone but the victim. You cannot help. All you can do is try to convince the victim to get the help herself. It always works on tv, but real life is much sadder.
1. eat2017 Member
 <inline-mention username="kloker" user-id="4235094"/> I’m so so sorry you have had to live with the heartbreak of what happened to you & your wife’s friend. What a sad thing to happen to a family. I’m also sorry you feel you deserve whatever happens because you smoked. You don’t! I do not believe it’s all our fault. If we started young and it became an addiction; it is extremely hard for people to change bad habits even when they hurt us or will hurt us. Especially because we don’t feel the effects until much later, after the damage has already occurred. And none of us knew if we had DNA that made us more likely to be addicted or that our DNA had markers that made it more likely that we would get lung cancer or COPD. As far as I’m concerned we were targeted by the tobacco companies. And the FDA, CDC, and the rest of the powers that be, have no problem with it because it’s about the revenue. Still is about the revenue. Even though they know what it does to people. They throw some money at it, but certainly never enough to create real change for those who are sick now. They do try to prevent kids from starting now. Not everyone has an addictive personality and not every smoker gets this dreadful disease. The things we know now we didn’t know then. Give yourself a break and take care of yourself the best you can. Forgive yourself for the mistakes you made when you were young. None of us had any idea that our lives would be THIS! Because THIS cannot be imagined, which is why no one understands what we feel. Take care!
2. eat2017 Member
 <inline-mention username="kloker" user-id="4235094"/> I wanted to say, I agree with others about getting your POA changed to someone else who will protect your interests and not their own. I’m sorry family is not doing right by you. It happens a lot to people. I live with my son and his wife and it’s been stressful to say the least. I really can’t afford any place else. But I’m walking on egg shells and they don’t help me much at all. Never offer to do things to help me. I have to ask if I want help and I’m made to feel it’s a burden. And I’m no happy so maybe that’s why my post sometimes are more negative than they should be. Plus I’m trying yo take care of my 84 year old dad. I have a lot on my plate. But I understand how you feel. I need to change some of my own paperwork.

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