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Having an "Invisible" Condition… Like COPD

  • By Jenn Patel

    What “invisible” part of COPD do you wish other people could see?

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  • By TracyCarnahan

    IOne of the worst things about having an invisible condition is slowly bowing out of friendships. Every friendship has a base, a place where it lives and thrives. Most of mine were activity based. I was a very active person and most of my friendships reflected; this. Hiking and camping buddies, walking our dogs in the woods, etc. As my illness progressed I did these things less and less. Even though I told my friends about the illness they couldn’t see it . The friendships couldn’t adjust to less active based. They continued to schedule our time doing strenuous activities that I would have to say I couldn’t make it to. They just couldn’t understand, there was no visible change in me. Some; thought I was just blowing them off. Over time all of them stopped calling. Now when we run into each mother they are shocked, its not invisible any more.

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    • By Jenn Patel

      Hi TraceyCarnahan –

      I’m so sorry to hear about what you’ve been through with friends. It’s really hard, and we appreciate your sharing about it because others can certainly relate. Were you able to meet anyone through the COPD “base”, like if you go to any programs or events to help with the condition?

      Thinking of you and grateful you’re part of the community.

      Best,
      Jenn (COPD.net Team)

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  • By buckybuck

    This topic excludes those of us who are on oxygen..It would be interesting to know if the majority are. I am and I am encouraged because many people tell me how well I handle my oxygen. I welcome any and all questions they might have about it.

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    • By Ginny13

      I’ve been lucky so far so I haven’t had the need to use oxygen. I am not quite ready for that but I know of some people who adapted well and others that resent having to cart it around.

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    • By Leon Lebowitz, BA, RRT Moderator

      Hi again, Ginny13 and thanks for your post about oxygen (above). The best way to approach supplemental oxygen use and COPD is that when you need it (and it’s physician prescribed), it is prudent to use it. Oxygen can be a big help to those with COPD who need it. I thought this article might provide you with some additional insight for your concern: https://copd.net/treatment/medication-overview/oxygen-therapy/. I do hope you find it to be helpful. All the best, Leon (site moderator)

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  • By Jenn Patel

    Great point, buckybuck! Thank you so much for bringing that up. I’d be curious to hear what you do to handle your oxygen so well – please do explain! I look forward to hearing more.

    Best,
    Jenn (COPD.net Team)

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  • By Leon Lebowitz, BA, RRT Moderator

    Hi buckybuck and you’re certainly correct about that. Using supplemental oxygen does prevent someone from falling into the ‘invisible’ category. Like Jenn, I too would enjoying hearing your story of how you handle it and how you handle it so well. All the best, Leon (site moderator)

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  • By buckybuck

    Jenn and Leon,

    There’s no big secret as to how I handle my 02. I think it’s a matter of attitude, maybe. When I was first diagnosed with COPD, I knew it was my own doing. So whatever the future brought, only I would be responsible for handling it. I am an active person, age 85 now, about 75 then, and I love life too much to let things such as this interfere too much. I know I am fortunate in that, although I get very tired, I feel pretty well most of the time, am not bothered by a cough, and am blessed with a helpful family. But mostly I am just determined to live my life as I choose to. Get rid of the destructive attitude of feeling sorry for oneself. It’snot always easy, I admit. Thanks for asking.

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    • By Anonymous

      Lucky buck, I realize I’m replying to a comment you made a year ago, but I’m encouraged by your level of activity. I’m 64 and am exhausted after one or two isles at the grocery store. I’d love to be able to be as active as you! I sincerely hope your health continues and you don’t have to slow down.

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    • By Leon Lebowitz, BA, RRT Moderator

      Hi j914 and thanks for your post in response to buckybuck’s post (above) from a year ago. It’s never too late in our community to join in the conversation. If the member has remained active, they will most likely see it. If not, the rest of the community has an opportunity to read your comment/opinion. Wishing you well. Leon (site moderator)

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    • By buckybuck

      Please don’t think I am superwoman…far from it! But I am just not willing to give up. I might miss something, after all! I will admit to getting quite tired and more easily as time goes on. But I figure I’m allowed to rest more often now that I’m 86! I do try to inject a sense of humor as often as possible. It helps!

      I’m curious..how many of you used portable concentrators rather than 02 tanks when you are out and about? Are then better or worse than portable tanks?

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    • By Leon Lebowitz, BA, RRT Moderator

      Hi buckybuck and thanks for your post from earlier today (immediately above). We appreciate you being on the website and responding to members who’ve commented on your post(s). Wishing you well, Leon (site moderator)

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    • By Ginny13

      I may have brought some of my illness on but even as a young child, I spent a lot of time in the hospital with bronchial issues.
      I had also worked in many fields that may have added to my breathing issues.
      I grew up in a bakery so flour and such were always in the air. I worked for Dunkin Donuts for about 15 years as well.
      Then there were all my years working at a newspaper with stuff floating all over. And so on.
      At first I couldn’t understand WHY I was sick and then over the years, I finally started to understand and deal with it.

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    • By Leon Lebowitz, BA, RRT Moderator

      Hi again, Ginny13, and thanks for your post (immediately above). We appreciate you sharing a bit of your medical history with the community. It’s good to hear you feel you have a better understanding of this condition. All the best, Leon (site moderator)

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  • By Jenn Patel

    Buckybuck, you sound amazing! Thanks so much for sharing your awesome attitude with us – we love hearing about it. <3 I thought you might like this article, which sounds very similar to your approach: https://copd.net/living/attitude-stress/. Additionally, have you ever shared your story with our site on our Stories page? I’m sure many people would love to hear from you. Here is the page, if you’re interested: https://copd.net/stories/.

    We’re so glad (and lucky!) that you’re part of our community here – thanks again!

    – Jenn (COPD.net Team)

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  • By buckybuck

    Jenn, Thank you. I have read a number f Derick’s helpful offerings and actually, we are friends on Face Book. I will consider posting my story once I find some time to get it together properly. You certainly have boosted my ego!

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  • By Leon Lebowitz, BA, RRT Moderator

    Hi buckybuck – I have to echo what Jenn has said – the way you’re handling all this is admirable and commendable. It’s so good to hear you’re doing so well – it’s that sensational attitude of yours!
    Please do give some consideration to sharing your story, as Jenn suggested. I’m quite certain our community would really benefit from hearing your story!
    Warmly,
    Leon (site moderator)

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  • By PrincessFiona60

    Other than a cough and SOB, I have no outward signs of COPD. I work 12 hour shifts, I do fairly well with the first half of my shift, but by the second half I am slowing down, feeling wobbly. Some co-workers don’t understand and think I am flaking off. My close co-workers make me sit down and take 5. I also have a tough time convincing services that help with yard work that I am unable to work for more than 10 or 15 minutes at chores like shoveling the walk, mowing the grass. Shoveling my walk takes me a whole day…tough to do when I have to conserve energy to go to work.

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  • By Leon Lebowitz, BA, RRT Moderator

    Hi Princess Fiona – it sounds like you certainly face some challenges with the 12-hour shift schedule. Add to that the work you’re doing shoveling snow and mowing the grass, and it makes even more of a challenge for you. Your outward signs of COPD (you mention SOB and coughing) are enough to demonstrate to those around you the difficulty you’re having breathing and catching your breath. Your close co-workers seem to understand, which is a good thing.
    If I may ask, how do you plan on coping with all this?
    We’re with you for support, so please lean on us in any way we can provide assistance.
    All the best,
    Leon (site moderator)

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  • By Maxwell100

    For a while I too was invisible, then I needed oxygen 24/7. Now I feel like the whole world notices me and they want an explanation. I know this really isn’t true and I am getting more comfortable with my new normal. I retired from work, started asking for help, I take advantage of all of the services can find. I have hired a house keeper, started using a grocery service, got a stair chair to get to the second floor, and hard wired a generator in case of power failures. I have been blessed with a husband that is a natural born care-giver. I still have difficult days and experience fatigue often. I am learning how to take care of myself and to ask for help when I need it. Sometimes I long for the days when I was invisible with COPD.

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  • By Leon Lebowitz, BA, RRT Moderator

    Hi Maxwel100 and thanks for your post relating your recent experiences with COPD and now utilizing oxygen around-the-clock. We have an entire online community that understands what you’re going through! It sounds like you’re very fortunate to have such a supportive and caring husband. It also appears that you’ve set up all the ‘trappings’ in your home environment to facilitate managing your condition extremely capably. It’s impressive. Oh – for the days to be living ‘under the radar’ again. Please know you can always come here for support – you are always welcome here!
    All the best,
    Leon (site moderator)

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  • By Kini

    I have good days and bad
    I have quit smoking but I have allergies too. My invisible disease is panic attacks. So when I can’t breathe because of COPD I get anxious. I used to be more active but I am not so active as I once was. I am a lot more fatigued than ever. I am glad summer is almost over because of the humidity and my allergies. It’s depressing to have COPD

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  • By Leon Lebowitz, BA, RRT Moderator

    Hi Kini and thanks for your post. It’s so good to hear that you have quit smoking. Congratulations on that significant accomplishment! We also hear that the symptoms of COPD (difficulty breathing) have increased your anxiety and fatigue. It may help you to know that you are not alone – we have an entire online community that understands how you feel and knows what you’re going through. We are always here to lend support! Wishing you well, Leon (site moderator)

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  • By Kini

    Thank you for your response. It also gets lonely when you want to do things with others and you don’t last very long or can’t keep up with others and then you have to stop. Some people just don’t understand why. I missed some outings this summer because of the humidity and hot weather. I’m thinking about a pulmonary rehab program. Can you tell me how that works?

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  • By Leon Lebowitz, BA, RRT Moderator

    Hi again, Kini and thanks for this post, too. We know that pulmonary rehabilitation can help many people who have COPD. I thought this overview article would provide you with some insight for how it works: https://copd.net/living-with-copd/pulmonary-rehab/. I believe you may also find that pulmonary rehabilitation programs can be a form of socialization and may help resolve some of the loneliness you’ve stated you’re feeling.
    Warm regards,
    Leon (site moderator)

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  • By TKemp81

    This is all still new to me, I think the hardest part is that most people dont really understand the severity of the disease. I also find it hard/embarrassing trying to “keep up”. Even simple things like shopping with friends.

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    • By Lyn Harper, RRT Moderator

      Hi Tkemp81 – You’re not alone in feeling that way. Especially with a new diagnosis, it can be challenging to absorb all the new information. You’re very right, most people don’t understand the consequences of COPD on the body and the toll it takes on you.
      My simple advice is, don’t push yourself to the point of exhaustion just to keep up with your friends. They’ll learn to pace themselves to you and I’m sure as good friends, they’ll understand.
      In another post you mentioned some of your symptoms – here’s an article that I thought might help: https://copd.net/symptoms/chest-tightness/
      -Lyn (site moderator)

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    • By Leon Lebowitz, BA, RRT Moderator

      Hi again, TKemp81 and thanks for this post. Having a new diagnosis with COPD can be a challenge to adjust to and manage. You’ve certainly come to the right place as COPD.net is all about COPD and all things COPD related. You may also find it interesting to check out our COPD Facebook page. You can find the link located at the bottom of this page. Wishing you well, Leon (site moderator)

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