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Building a strong support system

Expert Answers: Building a Strong Support System

Managing such a complex and challenging condition like COPD can take it’s toll and make you feel like you’re facing each day alone. For some, supportive friends and family are common, but for others, a strong support system is a seldom luxury  so, we asked our panel of experts: For those with COPD who feel they don’t have a strong support system, what approaches can be taken to build it up?

Check out what our experts had to say, and add your input below! And don’t forget to spread the word about COPD awareness month by changing your avatar or simply by sharing articles that educate others on COPD!

Response from Leon
Having a strong support system while living with COPD should be an integral and important part of day-to-day life. Patients who have COPD tend to rely on this (unofficial) level of involvement from others. Everyone needs and depends on the (official) medical advice provided by physicians and medical staffs but once home, there always seem to be additional questions.

Support groups provide valuable ways to share feelings with other people who have the condition, find advice on better ways to live with COPD, and learn about current treatment options.

For those without a strong support system there are a variety of communities which provide different kinds of support. By joining and participating in such communities, patients without strong support systems can fill the important void with like-minded people who also are going through what they are in dealing with COPD. Generally these communities are comprised of focused members who patients can interact with to have their questions answered, share experiences, participate in discussions, and get more information concerning the disease. An excellent example of this type of community is our own www.COPD.net and our corresponding Facebook page. Membership oftentimes includes health care professionals, professional medical writers, patients themselves, caregivers, and patient advocates to name a few.

In addition to our own community, here are additional resources to help build a network of support and information:

  • American Lung Association (ALA): This organization has great educational links and they will also help you find an in-person support group. The ALA’s Better Breathers Clubs are COPD support groups that meet regularly. They also feature educational presentations. You can start at the ALA’s main website, and then find a Better Breathers Club near you.
  • National Emphysema Foundation: This educational site is dedicated to improving the lives of people with chronic lung disease. They feature patient education links, a newsletter, online forums, and a personal health diary section.
  • National Institutes of Health (NIH) has a COPD reference page where there are links to overviews on COPD treatment, latest news, tutorials, videos, journal articles, and organizations. You will also find links to several useful patient handouts.

Response from Lyn
I highly recommend joining a support group for COPD patients such as a Better Breathers Group. You can find information about these online and through your physician, as well as through your local hospital. If you’re unable to find anything local, try social media. It’s a great way to get advice, share stories, and get interesting tidbits and ideas. COPD.net has a Facebook page that has support from both the site moderators and experts, but also a tremendous following from the COPD community at large.

Response from Tonya
Get involved in a support group. You will need people around you that understand what you are going through. Allow yourself to lean on your friends. Many great friends are willing to step in and help. Sometimes they are just waiting for permission.

A sweet friend recently went through a horrible fast moving disease (not COPD). She had a few extremely close friends, and had it not been for those people stepping up and acting as her family, she would have gone through much of it alone.

What are your thoughts or experiences on this topic? How have you built, or how would you like to build, a strong support system for yourself? Please share in the comments!

Comments

  • rhonda61hobo
    3 months ago

    I have learned more information in the 2days I have been reading all kinds of things on here. I use to just look around at stories from people,and think this is another website, same old thing. Then Leon left a message for me and told part of my story. I don’t have a support group. My kids listen but don’t really know. Same with my husband,until he sees me choking, or crying,coughing.

  • Leon Lebowitz, BA, RRT moderator
    3 months ago

    Hi again, rhonda, and thanks for this post. We’re so glad to hear you find it to be a good website for your needs. Remember, you are always welcome here! We’re glad you found us! Leon (site moderator)

  • luvmylife1948
    7 months ago

    I am thankful for this site and the recover from grief site which was beneficial when I lost my husband. It is so very difficult living with a disease and having no support. I need physical support in the form of people around me. Now suddenly I am losing my support structure. Waiting for 2 knee replacements. I live in the U.K. and my daughter is moving to the U.S.A. next year. My son is moving out and now I will be living on my own and having to go on Public transport for all my appts. and having to put prescriptions in and collect medication. Dental and hospital appts will be difficult now using 2 walking sticks and having little mobility. I now fear dying alone. These are the issues I face. But every time I receive support here makes me feel alive and just reading other people’s experiences leaves me feeling less alone. So thank you for this.

  • Lyn Harper, RRT moderator
    7 months ago

    Hi luvmylife1948! Let me assure you that while you may be facing family moving away and out, you will certainly always have the support of this community. It means so much to be able to converse, even electronically, with people that can relate to what you’re going through.

    If you haven’t already, I encourage you to check out the Facebook page of COPD.net as well. Just click on the “follow us” sign on this site.

    I encourage you to look up some local support groups that may be affilitated with your church, doctors office, senior citizen center, etc. You may find some new friends and a whole new support system.

    Please remember, we’re here for you.

    Regards,
    Lyn (site moderator)

  • Brie
    2 years ago

    Support groups are extremely important. I am a member of Inspire a support group which is part of The America Lung Association. Many wonderful members who know and share their experiences with COPD. I continue to learn a lot on that site.

  • Allyson.Ellis moderator
    2 years ago

    Brie, I am so glad you have found a support group that is beneficial for you! Having others to learn from and lean on who truly understand what you are experiencing can be so helpful in living with COPD. Thank you for sharing with the community! ~Allyson (COPD.net team)

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