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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Question About Feeling Bad.

Question About Feeling Bad.

My question is do you feel bad when you tell others you have this disease and they don't understand and they always tell you try to get better, better do this to get better, you'll get better soon. I hear that and it hurts me knowing i can't do the things I use to do. But most people think it is like a cut with a bandaid will heal.

posted December 28, 2021
A myPHteam Member

I do not feel bad telling someone about my Diagnosis. I try to share information so people will understand what PH/PAH does to the heart and lungs. If I get comments like you can die from that I always say that's True but with medication, therapy, eating right, my family and my Myphteam members for support I can live with my limitations and know what I can do. I usually have to explain to some people, I use a wheelchair to preserve my energy so I can do more I use a cane for balance. As far as my family I have told them everything. Of course they are in denial. My son understands because his mother in law had the same thing that I have and he is well aware of the outcome because she passed away a few years ago. It dose help that I'm a retired nurse. Research is a key component so you can be well verse in your diagnosis. Ask your Dr to explain in layman terms about the diagnosis.

posted December 29, 2021 (edited)
A myPHteam Member

Hi Nancy.....that is wonderful that your husband is involved with learning about your disease and understands....you need him to be by your side.....togetherness.....and he must realize that you would be by his side too when and if he has to go through a tough time....

posted January 10
A myPHteam Member

Yes! They need to educate themselves! Unfortunately. We have to be the ones to tell them what to read. I'm a respiratory therapist and a critical care RN. Imagine my frustration trying to educate "lay people "who think that they know more about this disease and my body than they do. I feel like Tom Hanks on an island with idiot soccer balls for friends.

posted January 5
A myPHteam Member

Hi Aaron.....it is hard trying to figure out all this new stuff when you are old...I am 87,,,and my daughter got me a new android phone.....tells me how to work it.....then I forget what she said....I need written out directions....maybe you can do that for your dad with the aarp phone...I am using the little net10 one for emergency calls....tough to get old.....and trying to understand everything.....give him a hug...

posted December 29, 2021
A myPHteam Member

Aaron, my family is very understanding. My children and grandchildren. I do believe it's harder for a parent to understand our ph/pah. I wear 02. 24/7. So no one questions me. I agree with the others about writing it down and they can google it. Good luck!

posted December 29, 2021

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