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How can I get my family to understand my struggle?

How can I get my family to understand that it takes all my energy just to breathe? They think because I look ok on outside that I’m fine, but to do the simple everyday things is a struggle for me. Just wish there was a way for me to show them how it feels to live with this disease.

Community Answers
  • Janet Plank moderator
    1 year ago

    Here is another link as well:

  • Janet Plank moderator
    1 year ago

    Your question is one that I asked and so many others have as well.

    Sadly, if they don’t live it, see it or experience it, they often don’t understand. It’s sad and lonely. I want you to know that you have a support system here with us. As I mentioned, we are here for them too.

    My family all live 100+ miles away and they didn’t really understand until I had a couple of bad episodes when we were together and I couldn’t do anything about it. It was freeing for that to happen, even though I didn’t like it at the time. They finally gained some understanding.

    I don’t know what it will take for you and your family, hoping that it will come soon, because it is important.

    Here is a link that might help. Check it out.
    Remember, you aren’t alone and we do somewhat, understand.

    Janet (site moderator)

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi Perrault – yours is an excellent question. You may want to share with your family, some of the informational material we have on our website. I thought you might want to begin with this article on ‘the basics’: Please let us know if this proves to be helpful. All the best, Leon (site moderator)

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