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What COPD Actually Feels Like

This one is primarily for friends, family, and the general public.

You know that we COPD patients can’t breathe. We say we’re tired all the time. We talk about having chest pain and pressure. We have what we call exacerbations where we’re weak and may not get out of bed.

But our symptoms are confusing.

One day we are fine to do something and then the next day we say we can’t. We make plans and then end up cancelling them. Then talk about being lonely. We don’t do everything we used to. We don’t keep up with stuff like we used to. We forget things sometimes. We require so much, well, work just to go out and do simple stuff: there might be a manual or power wheelchair to load; there might be an oxygen tank and tubing to deal with; and then all of it to unload again when you get back home. We have so many prescriptions and so many doctor’s visits to keep track of and/or take us to. Wow.

Is this all really necessary?

I mean, are COPD patients just being lazy? Are we exaggerating about how little we can do so we don’t have to do it? Can’t we just push through the shortness of breath and the tiredness? Wouldn’t we feel better just exercising more? What does this disease actually do to us?

Is it really so bad?

YES!


Here’s approximately how it feels.

BREATHING

To learn what normal breathing is like for us: First, get a straw. Now roll that straw up into a nautilus from end to end and then straighten back out. Put a clothespin on your nose so you can’t breathe through your nostrils, put the straw in your mouth and breathe only through that. Go about your normal day.

No, really.

This is really what it can be like to breathe, especially when we’re short of breath or in an exacerbation. Kind of makes you tired, doesn’t it? It’s kind of the foremost thing in your mind, isn’t it, getting a good breath?

Breathing is the thing I think about all the time. No, that’s not true; cats and chocolate are the things I think about all the time. But breathing is high on the list.

EXHAUSTION

Pretend like you’re back in college pulling an all-nighter before finals and stay up for 30 hours straight. When you get to the point that all you want to do is go lie down, you’re there. Now go about your day as normal…and don’t forget to breathe through your straw. You might not be able to. We get it. We understand. This is how we feel on a daily basis. And when we’re in an exacerbation, it’s twice as bad. We simply need rest more than most people.

CHEST WALL PAIN

We feel a lot of pressure and pain in our chests. Sometimes it’s from inflammation in the lungs, sometimes it’s the cartilage connecting our sternum and ribs. Sometimes it’s from other causes. Sometimes it’s a sudden flare of sharp pain that we call “rib cramps.”

To understand this, there are a couple of things you can do. You can ask your overweight uncle to stand on your chest for a while. You can put a large sewing needle in a flame until it’s red hot and then stab yourself in the ribs. You can force yourself in an iron corset that’s two sizes too small.

Now, with your straw to breathe through, after no sleep for 30 hours, and your new fashion accessory that constricts and immobilizes your whole chest, go about your day.

You know, the pain is a symptom of COPD that I wasn’t ready for. Of course, I wasn’t ready for COPD at all, but when I had a horrible bout of pneumonia, the pain in my chest was like a consuming fire.

BRAIN FOG

With all the exhaustion and lack of oxygen you might be feeling like you can’t think straight. You might not remember whole conversations, might not do little things like finishing your sentence, or even forget data you’ve known forever like your date of birth or address. Welcome to brain fog. We get this pretty often. It’s kinda scary, too. But we live with it.

UNDERSTANDING US

If you’ve read through this article and visualized my examples, thank you. Even though I’ve been kind of tongue in cheek, our disease does feel like this. I hope you have a little bit of better understanding and I hope I’ve helped.

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.

Comments

View Comments (10)
  • dunman
    11 months ago

    This article really describes well many of the symptoms and issues I currently am having with the disease. COPD is fairly predictable until one has a severe exacerbation and then everything changes in a hurry. I am just recovering from the worst one i’ve had so far, and now I’m just hoping the physical damage isn’t too severe, although I can’t seem to get back to where I was a week ago. This one came on fast along with all the panic and anxiety I could handle. It can also still be a problem convincing the doctor that I need medication NOW, and that shouldn’t be. Thanks for putting it into words that people without this disease can understand. No one knows like we do.

  • Leon Lebowitz, BA, RRT moderator
    11 months ago

    Hi dunman and thanks for your post. We’re so glad to hear how this article resonated so well with you. I have to agree with you – no one understands this disease like we (all) do.
    All the best,
    Leon (site moderator)

  • suzannebigras
    11 months ago

    Thank you so much for this site and article.
    I was diagnosed with mild mid-section COPD a few years back and nothing else was done. I also have had a heart attack which left the back part of my heart dead and a sten was put in my aorta and now have an EF of 28% with no tolerance to meds and GERD.
    Knowing that my COPD can mimic my low EF has brought an amazing amount of mental and emotional relief. I truly thought that I was not doing enough to help myself and turns out that I was doing more damage by trying to work through it.
    I am sending out Universal Hugs to everyone who find themselves in this place.
    I don’t feel alone anymore nor do I feel neurotic about my life now. I so appreciate the comments about feeling that it is laziness or avoidance. I can tell you that I am far from those things which makes it so much more difficult to accept where I end up some days (couch).

  • Leon Lebowitz, BA, RRT moderator
    11 months ago

    Hi suzannebigras and thanks so much for your post and for sharing you current experiences with both COPD and the aftermath of your heart attack. That’s quite a lot for one person to cope with but it certainly does sound like you’re handling everything quite well. We’re so glad to have you as part of our online community. All the best, Leon (site moderator)

  • BettyB
    12 months ago

    I feel this article is somewhat frightening and not accurate for everyone with COPD. I am 84 years old, have had COPD for 3 years this month. It seems to me our symptoms depend on what percentage of our lungs are working or not working. I started with approximately 80% lung function and now have around 70 % lung function. I have had pneumonia 3 times and a doctor told me I had chronic bronchitis when I was 23 and foolish enough not to pay much attention to his words. No bronchitis symptoms over the years despite smoking which I stopped when I was 60.
    In any case I now take no meds, no inhalers, nothing – as I had bad reactions to all. For me I think the cures were worse than the disease itself!
    I wear a fitbit and walk 6000 or so steps a day [in my apartment!], I follow Donna Wilsons breathing exercises on youtube and I eat an improved diet including Cider [which seems very helpful for me? non alcoholic!], sleep well, have very little sputum or pain or even shortness of breath. My COPD is not nice but it is certainly not a huge handicap. All in all my symptoms are nowhere near as drastic as the comments sound, nor are they all that bad for many in my COPD exercise class. Just sayin!
    I wish I had know all this 3 years ago!

  • Allyson.Ellis moderator
    12 months ago

    BettyB, thank you for sharing your thoughts. COPD will feel different to each person as everyone’s body is unique. Lung function can play a significant role in how various symptoms manifest. I’m glad your own experience of COPD is not as severe at this point as what the author describes. It is wonderful you are able to walk 6000 steps each day and participate in a COPD exercise class. Keeping active can be so helpful for COPD symptoms! It’s great you have a treatment plan that is working well for you! ~Allyson (COPD.net team)

  • Margiesalsa
    1 year ago

    This article is exactly how I feel. Not quite as severe yet, though.. The cramping was a surprise to me that it was also a symptom of COPD.. I thought I just moved wrong or was needing to drink more water. I have learned so much from this website that has truly helped me understand the disease better. People have used the word hypochondriac when I have mentioned my cramps, burning chest in cold weather, being forgetful and tiring easily after a full 8 hours of sleep. I am definitely going to share this information so I can help others understands I am not making things up and they can learn more about how bothersome and frustrating COPD can be. Thank you.

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi Margiesalsa and thanks for the kind words. It’s so gratifying for us to hear the genuine value you find in our website and published material. If it helps you to explain what you’re experiencing by sharing our information with others, go right ahead. We hope it helps them to understand what you’re going through with COPD.
    We’re glad to have you as part of our online community.
    All the best,
    Leon (site moderator)

  • Gacosta
    1 year ago

    This article hits the nail on the head! Thank you – I am going to share this with friends and family. COPD can be complicated to explain and even more difficult for those around us to understand – how is that we can be good one day but not the next? Why does it take us so long to recover from a very busy day? Cooking dinner can be exhausting let alone working a full time highly stressful job. And yet, very few understand what it is like to push through it EVERY day and never get caught up on the rest we so desperately need. And – I need people to understand that breathing – just breathing – takes concentration. I may not be doubled over and panting to get air – but I’m still having trouble breathing. Thank you for this article.

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi Gacosta and thanks for weighing in with your views on he content of Michelle’s excellent article. We’re so glad to hear this article really resonated with you and that you took the time to let us know.
    All the best,
    Leon (site moderator)

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