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How To Get Others To Understand What It Is Like To Have This Disease

How To Get Others To Understand What It Is Like To Have This Disease

This disease is hard on relationships. It not only changes our lives but changes everyone else’s around us as well. I know my friends and family can get frustrated too. I would like to help them understand what it is like living with this but do t really know how. I try to explain but don’t think I’m getting anywhere. Ideas?? Thank you

A myPHteam Member said:

Thanks for the response and what you say makes sense. One of the things that is the hardest is the work around the house. I was already on disability because I have severe scoliosis, which they think is causing this lung problem. In any case, a lot of the work that I used to do I can’t do anymore so it falls on them to do. Plus work 40 plus hours a week. So that’s a lot and makes me feel bad. But like taking care of the pool and yard all falls on them when I used to do all of that. I guess it’s all just a learning curve. I kept up on all of it u til I had to have the oxygen 24/7. Maybe someday I wont need it that much but that’s where I’m at for now anyway. Onward and upward right! Thanks for your thoughts and advise! Have a good rest of the day!

posted about 1 month ago
A myPHteam Member said:

Be patient with them because it's difficult for others to walk in our shoes. Try to explain your feelings in detail. Also tell your changing physical limitations and pain, along with the line of specialists we see to determine causes of symptoms.

posted about 1 month ago
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