[Sinyra]

So before i launch into the story...

Hello. I live in Oregon and go the the University of Oregon. Go Ducks! My boyfriend and I sing in an a cappella group. I play DnD, love sports and books, have a huge crush on Matt Damon and I have an identical twin sister. I have brown hair, blue eyes, and look younger then i am. My boyfriend calls me kiddo even though he's two years younger then me.

Okay, now that I don't feel like i'm some random person...

ahem:

i knew when we got involved that he had lupus. I did all of the responsible stuff and read about it and learned and so i felt ready/able to deal with it when it got worse. The first time it acted up,we got through it fairly easily. This time however, it's more difficult.

He is flaring in his knee and so obviously movement is a no go. add crutches and college and he's out of energy all the time. it wasn't really effecting our relationship until i failed to trust him. I worried that i was doing things for him to much. that i was facilitating him being lazy, not remembering that he hates having to ask me for things and that he would never take advantage. even though i had read about it, seeing it first hand is harder then i'd thought.

last night i really hurt his feelings. i feel like my heart has been ripped out because I hurt him and i love him so much. we have worked so hard at "sharing" lupus. at him letting me in and me understanding but last night i failed. It is the first real strain on our relationship and the first time i have screwed up this bad.

As such I decided that i needed help. Since i know other people are in relationships with lupus patients i told him that i was going to find out how to be better at it. So here I am. I'm sure i will have more questions and that we will have more problems but I am determined to not hurt him like that again. (or at least do my damnedest.)

...

I've been failing at typing for about 30 minutes now. I have a ton of questions about how to help him/live with this but right now i am having the hardest time articulating them. (damned tears!) If anyone has any advice in general, particularly about helping a guy with lupus, i'd really really appreciate it. I will be around a lot from here on out and i will try to be more specific in the future.

Thank you so much,

-Sin

 

[cath]

Hi Sin,

I'd suggest that you simply say sorry to him. Don't underestimate the power of a sicere appology. No one is perfect, and the humility to be able to admit that is a very attractive quality for most people.

If you need to say more, say what you said to us...

All the best,

X C X

 

[Katharine]

Hi Sin,

I agree with Cath here and it sounds like you already have a very communicative loving relationship so a sincere apology sounds like a good idea.

Otherwise, I think that coming here, as you have done, is an excellent idea as it is one thing to read facts and quite another to realise just how (and in how many ways) lupus can affect us all and how it can make people suffer and feel at times.

There have been a few posts in this section about supporting people with lupus (both male and female) and if you do a search you should find some of those posts. The problem I'm having right now is thinking which words would best find those threads.

bye for now,
Katharine

 

[Sinyra]

thanks for the suggestion. If i can think of any terms, i'll search.

and we're fine now and there was a long and sincere apology essentially right after it happened. basically a whole night of talking it out. i just still feel terrible.

so mostly i'm here to learn. I had a real hard time articulating that this morning.

 

[melissar]

I guess one thing to remember is that like with any relationship, saying or doing the wrong thing at the wrong time is going to happen....but I do know how you feel. My mom has Lupus and sometimes I just get so tired myself and I get tired of being understanding....and sometimes I want "my life". Years of therapy and I still feel like wanting "my life" is selfhish and unfair to my mom, even though I continue to care for her, make sure she has everything she needs, and spending all the time with her I can.

I guess my point is to give yourself a break. Don't be too hard on yourself. He knows you love him and he also knows that sometimes (just like he does) you are going to get angry too. Not at him, but at the disease....and unfortunately, since the disease is inside him, he gets the brunt of it.

 

[LolaLola]

Dear Sin,
I am a Lupus patient and have a Daughter who is a Lupus patient. I have to say that it can be a bizarre disease. I am sure your Boyfriend can be impossible sometimes, and I expect he knows that. (I know I can be ridiculous myself)
Also I am sure he is really disappointed that his illness is so active right now.
The good news is that there are lots of helpful treatments,maybe his needs some adjustment.
I wish you lots of Luck and Success with your relationship.
x Lola