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The other night during a disagreement my boyfriend told me that he doesn't believe me when I say that I'm dying and have a short life expectancy. He seems to think that I'm "lying and saying it to get people to feel bad for me." When I suggested he research the life expectancy and information on PAH he told me he doesn't need to. That me feeling this stress and impending doom (my words lol) are not true. Although he's seen me recently struggling, he doesn't seem to grasp how severe my case or… read more
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Members responded with deep empathy to someone whose partner dismissed the severity of her pulmonary arterial hypertension diagnosis, with... Read more
Krysta my daughter has the same issue. She has had PAH for 10 years! Has your boyfriend gone to the Doctor with you! Make him go with you and the doc can explain. If he want go, lose him, he doesn't care about you! Your beautiful and there are so many guys out there who would love to have you walk beside them! God Bless!
The eye opener for my husband was the first time he came with me to the PH Clinic. I had told him the doctor wanted him to come to an appointment so they could meet him since he was my key support person. That was an exaggeration in my part. But he came and there was a lot of activity in the waiting room and every patient other than me was on O2 and had their partners with them.
That’s what really motivated him to do some of his own research. That was a game changer for us.
@A myPHteam Member Is your husband still working or is he retired? Every relationship is different, but I hope all it will take is to have a serious "sit down" with him and explain your limitations and tell you very specifically how you need him to help. My husband and I sat down soon after my diagnosis and officially divided up the household cleaning responsibilities and I will say that he frequently now jumps in and does what technically I am supposed to do. That one visit to the clinic really opened his eyes and changed things.
It is hard enough when strangers do not believe that you have a debilitating and chronic disease, but when someone you love feels that way, it is far worse. Speak with him and tell him how hurt his disbelief makes you feel.
Good luck to you and know that all of us here believe you.
I’m sorry you’re going through this and in fact alone . It’s a very scary thing to face. I do have similar issues, but it’s not about me and I certainly am not going to take that away from you . That’s another story . I’m glad you found the courage to speak up. I’m not going to suggest anything here for you to do , as you probably already know your answers. I find people are just so narcissistic in thinking that they can’t look beyond themselves. Or people just think everyone is lying . (That’s what happens when misinformation and science is just lied about ). Just know that I’m so sorry you’re facing this alone . Reach out to me anytime.
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