Originally Posted by gabrielyse

I'm the fiance of someone with RSD. We got together 4 years ago which was after she was diagnosed, but before it worsened. After going with her to a few doctors appointments and one emergency visit I understood everything a lot more. Nothing like witnessing the person you love struggle to get out of bed to use the bathroom and having a doctor write you off as another junkie. I've had to make a lot of adjustments in my life and plans, usually to the dismay of others 'well why can't you just come and leave her home' to which i usually respond, we'll just do it another night or actually I don't feel well so i'll call you next week. i found that she would never really ask for help with things, so i kind of started just doing them for her and just ignoring the fact that i did it, like helping to button a sweater or tie her shoes. I tell her constantly, I really appreciate you helping me clean up, but why don't you let me finish so we can both enjoy going out later and not waste energy on the small stuff. When we were dating I remember she would hide a lot of how she was feeling. I always figured she didn't like dinner, now I realize it was because she couldn't cut the food and was too embarrassed to even try! the best advice i could give you is patience and a sense of humor. For us it was reaching a certain level of comfort with each other, and her really knowing that I would always be there for her. I know you guys just started dating, but if it gets serious I think it's just really important to know that this might not change, it might get better, it might get worse.