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Dating someone with Lupus

1615 Views 10 Replies 9 Participants Last post by  keebler
OK, so I'm confused as ****. I've dated my gf for a while now and she's been going through a flare for about three months. When she went into her flare it all happened very fast. She started acting very different and just plain mean. Since her flare-up our relationship has been a constant push and pull. I kind of feel like I am in limbo most of the time, but I know I have to be there for her. Everything was perfect before this started happening, and then within a couple of weeks, it was like I was dating someone else. She became sick and wasn't thinking rationally. I love her and would never leave her but is this normal for Lupus and relationships? I think I'm being very patient (especially for me!) but I guess I need some more advice. She'll be so excited to talk to me one moment and then in a matter of minutes change her tune and get incredibly cranky and mean. She also forgets about me all the time since her flare-up (which I understand Lupus can affect the mind), but how do you forget to call or think about me? I've never seen something change someone so drastically...
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Ryan, sometimes Lupus can give the brain a real shake up, apart from which it really does hurt a lot sometimes. I look back on my relationships, as I have had Lupus for 25 years and I can see now that it did used to mess up relationships.
Having Lupus is hard, being with someone with Lupus can also be hard.
If we can do anything to help please let us know.
Meanwhile, I am glad you are still trying!
x Lola
Hi again Ryan!

Just wanted to add something that occured to me after I left might want to check out the "Friends and Family" and "Relationships and Lupus" sections of the board if you haven't already, there are some posts in there that might be especially interesting/helpful to you (the stickies at the top are often some of the best).

Hi Ryan,

You sound like a great guy, trying to learn more about this illness and be there for your girlfriend.

Sometimes when a flare starts, it is completely overwhelming & terrifying and could certainly cause mood swings.

I can say for myself that when I begin to feel ill, I am terribly mean and moody and unfortunately my husband feels the major brunt of it. For me, it is beacuse I cant do the things I want to or need to the wife, friend, mom to everyone. It makes me angry and I guess it spills outward...

I can suggest reading the posts on this will give you some good insight about what your girlfriend may be experiencing. My husband used this site when we were dating and he said it helped him understand how I was feeling alot.

Keep your lines of communication open..that's the concrete that holds relationships together.

Take care,
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Ryan just the fact that you have stuck around even when things have been very tough says loads about you and the type of person you are.

Your girlfriend is very lucky to have someone that is so caring, patient and understanding.

My advice to the both of you both need to be very open with how you are feeling. Being with someone with a chronic illness is really hard work..good luck to both of you :)
Thank you all so very much for your input! It's just hard because I feel like I am in constant limbo with her while she is going through this. I won't hear from her for a couple of days and then all the sudden she'll want me around and act like everything is normal. Wow, what a mind-screw, but I won't give up! It's a relief to finally converse with people who understand the central nervous system and SLE. Thanks again!
Hi Ryan, you know it occurs to me that when your girlfriend isn't calling you for a couple days, she might just be plain too sick to do anything. She's not ignoring you. It's just that she has no energy even to pick up a telephone, much less carry on a conversation.

I'd been married almost 20 years when I got sick with this business. It was a massive shakeup to our relationship and we both had to learn to be together differently. Sometimes I am just too sick, tired, in pain to be a good partner. My husband has learned that it doesn't mean I don't love him. Only that my body has put limits on what I can do.

Most of us are used to doing as we intend. If we are a bit tired, we just push a bit harder. But once a person is really ill with a chronic illness, particularly in a flare, life changes. Push all you want..... might as well be pushing a great big ol' boulder.

I know this is hard and frustrating. You deserve commendations for standing by your girl. She needs love and understanding. This disease robs us of careers, income, friends, activities, hobbies..... it would be horrible to let it rob your pretty girl of love.

Hugs and good wishes,
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Ok so without sounding incredibly stupid, is there a length of time that these flares last? It is hard to get her to open up with her sickness, but I have made in-roads Biggsi. You are right, communication is key and helps a lot! I just hope she isn't taking me for granted and isn't just playing head games with me... Wow, confusion.
Flares can last a few days to several months to several years. There is often a low level constant set of symptoms like joint pain and fatigue but with a flare they become worse and other symptoms can be added.

Another thought is that her medication could be making her less agreeable as well as her condition. Especially if she is on prednisone, it can make a person quite cranky. Or it could have more to do with relationship issues than anything else. A good, honest, calm discussion explaining how you're feeling and what you see going on while getting her input and point of view (and ackowledging it) can go a long ways to creating a long lasting and happy relationship.
The last entry in this tread was some time ago. I'm not sure if anyone is still posting here, but oh well. More than anything I wanted to thank you for the participation and comments. I recently met a girl at work. I've made it a rule to not date anyone I work with, and I've had many opportunities, but the more and more I'd run into her and chat the more I wanted to know more about her. So we finally started talking and eventually went out. About a month after we started dating she told me she had lupus, which I knew nothing about, and gave me a brief description (sugar coated) of how it affects her. About a month after that we were texting / chatting like usual and the next day she was gone and disappeared for almost 2 weeks before I heard from her sister who saw my texts and calls and inferred that I was genuinely concerned (remember I'm some new guy in her life). During that time I was very worried and missed her very much. Then a few days after that I heard from her (on my birthday so it made my day) and saw her briefly a few days after that. I've done more research on Lupus since then, but since she hasn't went into detail as to what she really goes through I was very thankful to read what was on this thread - it really hit home. I still do not know this girl that well, but I recognized something special about her early on, and every time we are together it feels really good to be around her. I haven’t seen her for a couple of weeks; she’s tried, but then doesn’t feel good the day of. I will continue to be in her life as much as she lets me and see where this goes, but it was a blessing to find this site and get more insight to the realities of this disease. Especially since guys can get insecure about certain things the understanding this site offers is priceless, and although I consider myself on the secure side, but the site gave me a grater appreciation for this situation. Any feedback or comments would be greatly appreciated.
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The poster has not been back since May 2008.
I am closing this thread.
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