I don’t get it either……. I have asked doctors to leave the room for saying it. Do you want me to look dead?
The other hard part for me is the exhaustion. I know where it is coming from and when I over do it ( like on Halloween ) and it takes me 3 days to recover .
Sometimes a dr will tell me it’s not cardiac and that makes me
Furious and frustrated because unless you have it, you don’t know what it feels like
🥰

When you’ve gone through this disease as long as we have you can’t explain . My daughter at first said I was looking for attention . My hubby and Dr showed her my first TEE . Her jaw dropped . Most people don’t understand especially when they say you look good

I think the worse thing is people don’t understand the fatigue we feel. Some days I just want to do nothing. Don’t have any energy. They think if I just get up and walk some I will feel better. Well it’s hard to walk around when you are tired all the time. But thankfully that’s not every day. Some day are good. So I feel like walking a bit. They just don’t understand!

I actually had to block one of my daughters in law from facebook because Every SINGLE TIME I POSTED ANYTHING she went off on a tear about what a terrible wife I am because I don’t clean the house and cook for my husband as often as she thinks I should! Closed the door on that!

Yes, I feel it, people tell me I don't look disabled. I am thankful for every day I wake up, even a "bad day" I tell folks "Live a day in my constant pain" I tell them. I also learned to ask for help when I need it and accept help.