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Things I Want My Family and Friends to Know About My COPD.

Things I Want My Family and Friends to Know About My COPD

1. It’s okay to hate this disease and be angry at it. I do and am.
I can’t be Den Leader for my son’s Scouts group anymore. I can’t play Calvin Ball (see the comic strip “Calvin and Hobbes” for the rules) with him anymore. He misses that kind of activity with me. We have talked about this a lot and I have let him know that it’s okay to be mad at COPD–not at me, but at the illness, which is a very important distinction–and that I am angry at it too. It’s a low down, dirty, awful, terrible, no-good disease. So get mad at COPD for all the things it took from you. You have a right to.

2. You can ask me questions about what I’m going through.
I really don’t mind talking about being sick. Silence can be misconstrued as “everything is all right.” Well, I’m not all right but I am very willing to educate you about how I feel and what’s happening to my lungs and what my prognosis is, as difficult a conversation as that might be. And it’s important for you to know. So ask me.

3. I need help.
A wise woman I know once said that the bravest thing someone can do is ask for help. And it is because I have to admit I’m not invincible and I can’t handle everything and I don’t want to be judged harshly for it.

So this is me being brave. This is me, asking you.

4. I am always tired. Always.
Walk slower when we’re together. Let me sit when I need to. Some days I just need to sleep all day. And that’s all right. Let me.

5. I am lonely and would love company, but can’t cook, clean, and host for you.
I miss you, friends and family. I would love to see you. It gets kind of lonely when you’re housebound like I am. But when you visit, please understand that the house may be a bit messy and I may not be able to cook fabulous dinners like I used to (see number 3 above). I’m really not up to playing hostess and keeping a good conversation going all the time. Tell me that it’s okay. Tell me that it doesn’t matter. And just be with me for a little while.

6. I’m scared.
According to the World Health Organization, COPD is third leading cause of death in the world. My prognosis isn’t good and the progression of the disease scares me silly. It’s okay if it scares you too. I don’t want to think about it, and there are chances I could live a long, long time yet, but the reality stares me in the face every now and then. I have to prepare. Let’s have these conversations in an honest way and get things settled now. Let’s tell each other how much we mean to each other now.

7. I’m in mourning for my old self.
I am not the person I used to be just a few years ago. I can’t sing, dance, garden, travel, shoot archery or throw axes anymore. I miss that old me. Sometimes I forget how limited I am and then the breathlessness comes back with each step as a bitter reminder. It’s going to take some time for me to accept and grow to love myself as this new person. If you want, we can grieve together.

8. But I’m still me.
The goofy, weird, passionate and funny person you love is still here. I can still beat you mercilessly at Scrabble. You and I still share all the same wonderful memories we made together. More importantly, we can still make new ones.

So let’s go.

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

  • Dobbo
    3 years ago

    I have no one to help me so I get on with it best I can! I still have the grankids who keep me going! Had bad rd ay yesterday, went docs and was told we are not a walk in centre! I was so upset! Just going to stay home in future and wait for inevitable!!! Loved your posts! Jane u.k

  • Jenn Patel
    3 years ago

    Hi Dobbo –

    I’m so sorry you had that experience at the doc’s yesterday! Many in our community find it helpful to change doctors if they’re not happy with the one they’re currently seeing – I wonder if that might be something you’re interested in. Or, perhaps talking to the doc about what you should do when you have a bad day like yesterday. I thought this article might be of interest: https://copd.net/living/tips-for-improving-communication-with-physician/.

    I hope this is helpful and that you get the care you deserve! Great to hear that your grandkids keep you going!

    Best,
    Jenn

  • Debbie2
    4 years ago

    My husband is the one with COPD, he has an awful time breathing…we are trying to get a portable concentrater! I think he’d feel better if we could get out more often! I understand when you say you get angry at the disease, I do too. It’s stealing and has stolen my old husband! He use to hunt, hike, we’d take the 4 wheeler out on road trips! We can’t anymore, he can’t breath and we’re both scared, he’s scared to go to sleep because he might not wake up…I’m scared he’s going to have a terrible time at the end, and I want him to just fall asleep :(. It’s nice to have ‘someone’ to listen and understand. Thank you!

  • Meaghan Coneys moderator
    4 years ago

    Hi Debbie2 – Thank you for sharing your thoughts with us. I am so sorry to hear about your husband. We hear you, and we are definitely here for you. It can be so challenging and heartbreaking to see our loved ones affected so significantly by this disease. It sounds like you truly support and love him. I hear you when you say you are scared. Please know there are people who relate and understand what you and your husband are experiencing. I hope you are able to find support here at COPD.net. I thought you would find these articles helpful – https://copd.net/caregiver/caregivers-101-importance-taking-care/, https://copd.net/caregiver/the-weight-of-care/, https://copd.net/caregiver/fight-against-loneliness/. They discuss various aspects and emotions related to being a caregiver, including the importance of self care. I thought at the very least you could relate. Thinking of you today. We are so happy you are here. Warm regards, Meaghan (COPD.net Team)

  • Jean
    4 years ago

    While all these things are true, probably for most of us at least some of the time, they’re not all true of all of us all the time. I’ve had COPD for over 30 years, I’m on O2 much of the time, my FEV1 is in the mid-30 and I have never experienced the fatigue you claim as “always”. This really sounds like a celebration of “poor me”.

    I’m much rather see some pro-active things like how friends and family can help and by recognizing and understanding our limitations, help us succeed in spite of them. I still do pretty much what I did prior to a diagnosis of COPD: I exercise every day, I do lots of church and volunteer work, I travel by air doing a part-time job I love, I enjoy my family, I do lots of things every day. It takes some planning and organization to do it all, but my life is really pretty good. A lot of my being able to do this is due to the fact that my family and friends really do understand and accept my limitations and accommodate me when necessary.

    I know I’m an oddball in the COPD community. I know some clinicians and researchers who’d really like to know why I can do what I do while my counterpart can’t. But it doesn’t change the fact that everyone can be more pro-active with family, friends and themselves to have a better quality of life. The more people understand what you need and can help with that piece, the better off you are all around.

    Just MHO……….

  • Leon Lebowitz, BA, RRT moderator
    4 years ago

    Jean – this is a great way to approach your life with COPD! The glass can always be viewed as ‘half full’!
    Warm regards, Leon (site moderator)

  • crazycatlady
    4 years ago

    Wonderful and helpful hints for those of us who are friends and family of COPD patients. I am glad to know these things. Thank you for sharing.

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