I'm sorry your partner doesn't understand. I thought mine understood initially, but he still expected me to do everything. That was when I first got sick. And I literally ran myself into the ground so that he didn't have to do anything.

Well this time around, with this flare, I told him I expect help and that he needs to pitch in.

I also share my labs with him and take him to my doctor's appointments so he understands better.

He grumbles a lot. But I am direct and I told him either he helps out or he'll be a single parent.

I learned during my counseling session this summer, we teach others how to treat us. And I allowed this behavior from him. My fault! I feel more empowered these days.

Maybe, you can print out a fact sheet for him so he can better understand how you feel.

Hugs

Suzanne

My biggest lesson learned throughout this horrible process has been to ask for help. It's still difficult at times, I can see when things need to be done, why can't he? I have found though, I only have to ask and I get help! Search this site for the spoons story, i use that explanation all the time....

I am sorry you are going through this. I think it is really hard for people to understand. I tell them I don't feel good any single day but I don't gripe about it. But that doesn't mean I feel "normal" like they do.

I think you have to ask for help. Perhaps help educate them on the disease and have them speak with your doctor too.

I think this is a challenge we all feel. I hope to get some insight from your posting.

I totally agree with we teach others how to treat us - took me till my 50's to get that one! I hear the "you don't look sick" from people and I just smile. My work environment is so Type A, fast-paced they don't even ask! I don't have a partner, but have a golden retriever and I have set boundaries with her! Hang in there - it's a process with baby steps and you will feel good everytime you ask for help (give yourself a pat on the back!)

This is a hard one. When I first got sick my husband and I were still really young and he didn't understand. He didn't necessarily think I was lazy, but he just didn't understand. Now we have so much communication. We use the spoon theory a lot so that I can let him know where I'm at on a given day without necessarily griping. I'm really blessed with a man who communicates well and really listens to me. I would have to say just sit down and talk. Let him know what you go through, what your worries are, let him know how much you appreciate the help he does give you and that it makes you feel so loved and cared for. I think at this point all you can do is talk to one another. Ask him how he feels about it all so you can be an emotional support to him too. I'm sure it's not easy for them to have us sick just like it's not easy for us to be the one who's sick. You just really have to open up that communication.

I have found that when my husband goes to my appointments with me (Rheumy appointments) that he asks alot of questions that i may not have thought of, so he gets to hear the answers and really has a grasp of what this disease means for me. Has your significant other gone to any of your appointments? I think that would help alot to get him to understand it a little better.

Found it! The Spoon Theory:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

I posted this to my facebook, and a bunch of my friends read it, and they said it was the first time they ever began to understand what I was going through. I almost cried the first time I apologetically said I had to leave early from getting together with a few people, and they just said, 'it's ok, gotta save your spoons!'.

i love using the spoon theory it's so much easier for me to say i'm running low on spoons than to say i "can't" do that. i love that the spoon theory for that alone. :)

it is hard. when my husband first started going to doc appointments with me it almost seemed harder for him and then got better over time. now with our work schedules it's just not possible for him to go to doctor appointments with me which is kind of hard sometimes

Someone mentioned to me that an attitude that spouses can sometimes have is" if you're not going to get better, then hurry up and die." I am not really sure how my spouse feels about my disease these days. He doesn't ask how I am much anymore.