My husband tries to be understanding and empathetic. However, when I hear him on the phone explaining my situation to someone else, it is clear he does not understand fully what PAH is let alone how it impacts me. This isn't totally surprising to me. He has difficulty comprehending his own medical issues and what his medications are for. Despite this, I feel blessed. He does his best to pitch in. On bad days when I'm overwhelmed with fatigue, he encourages me to take care of my needs first. So, does he understand? Yes and no.

I actually do think my husband understands how serious this is. But 2 things…1. he’s an engineer and a lot of this is emotional response needed. He tends to think more just like it’s problem solving. and 2) he is trying to help me not get too emotionally stressed. I do believe he is very sad for me (and himself) but doesn’t know how best to show it. He does take any and all treatments and recommendations seriously. I try to remember that yes i’m the patient but he’s also going through all of this too and there’ so much unknown. That’s why this group is so helpful. He doesn’t really know I come here but that’s ok. He would be glad to know I’m hetting the emotional support I need. Why do you think maybe your loved one doesn’t get it?

@A myPHteam Member Does your PH practice have a social worker? If so, maybe they can "request" an appointment with the two of you as a low key session to go over the disease and what changes are in store for both of you. It can be made to look like it completely is coming from the practice as one of their protocols.

Mentioned Users

A myPHtea...

Hi Carl, have you tried picking a suitable time to ask your wife to sit down because you need to talk together about your situation. Even though you feel you've had a negative response from her so far, it's important not to come across as critical and put her back up! You'll just end up getting nowhere except maybe an argument.
Then be open and honest with her about what you are dealing with and going through, and tell her you'd like to work out with her how to make the best way forward together.
🙏 Hope you make some progress Carl.

My husband understands but just feels like he just doesn't know how to help more. But his support through it all has been wonderful, we have been married for 50 years, through thick and thin, he is there! I am blessed!