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Chronically Ill Husband, in our early 30s

By January 1, 2015 - 9:42pm

Less than a year after our wedding, my husband was diagnosed with an understudied, rare inflammatory skin disease with no known cure and no environmental causes-- in other words, totally random. It's disfiguring (though he's still beautiful to me and objectively speaking), mobility-limiting, scary and spreading. There is frequent bleeding and debilitating pain. He's still working and successful at his job but it takes so much energy to make it to work each day that he's often on the point of collapse. Sometimes when he feels better he cooks and contributes more than his share, but sometimes he's unable to.
The hardest part is accepting that the things we used to do-- the bike rides, the traveling, the spontaneity and the adventures-- are over. I don't want to sit around but I don't want to go out and do things without him. I love him. we're both only 31.
I also see that he's getting depressed, just tired of being sick. Our friends know something's wrong but they don't know what it is because he's so private, they just sense his negativity.
I love him so much and I hate that I can't take his pain away. And I hate that I have to choose between doing the things i love and being with the person I love. I feel like we've lost so much potential for joy and so much of the world. Everyone around us is pressuring us to have kids, which is our dream, but they don't know what it's like to be the caretaker.
Anyway, I just needed to vent. It's heartening to see so many others with this same issue here.

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