Weve been together about 2 and a half months its been very special and we are vey much in love, however the last week she has become withdrawn and has said it is her lupus playing up, she has been over sensitive and a little stand offish , i have tried to get closer but as she hasnt had anyone to help her before she seems to push me away, any advice please shes a very special lady who means the world to me
Hi My new girlfriend has lupus
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Hi:
I think its wonderful that you are here asking questions! You must indeed be in love with her to take the time to educate yourself on her disease and try to find a way to help her.
I think knowing about the disease is very important, however, I think you need to be careful of thinking of her disease as who she is...it is a part of her, but it is not her!
I don't really know what to tell you on how to get her to understand you want to help, but I think it is important to talk to her and ask her any questions about her specific effects of the disease, let her know you care and want to lend her support without "babying" her...although we all love a little "babying" now and then.
If she isn't on the site, you might mention it to her, and tell her how friendly and suportive we can be to her if she needs it.
Mostly I think you need to let her know you understand that she isn't up to her usual antics, but that you understand. Let her tell you what she can and cannot do, but be aware of her...don't let her push herself just to try to keep up, exhaustion is our enemy as is stress.
Do little things, bring her a bowl of soup or fix her favorite breakfast as she probably isn't up to cooking...straighten up a bit, wash the dishes...just a little at a time, but it can mean a lot to have someone help out that way.
I'm sorry I couldn't offer any more, I wish you much joy in your relationship and I hope you both can weather the storm...its very tough.
Welcome and come back often, join us in chat if you need to.
Stephanie
I think its wonderful that you are here asking questions! You must indeed be in love with her to take the time to educate yourself on her disease and try to find a way to help her.
I think knowing about the disease is very important, however, I think you need to be careful of thinking of her disease as who she is...it is a part of her, but it is not her!
I don't really know what to tell you on how to get her to understand you want to help, but I think it is important to talk to her and ask her any questions about her specific effects of the disease, let her know you care and want to lend her support without "babying" her...although we all love a little "babying" now and then.
If she isn't on the site, you might mention it to her, and tell her how friendly and suportive we can be to her if she needs it.
Mostly I think you need to let her know you understand that she isn't up to her usual antics, but that you understand. Let her tell you what she can and cannot do, but be aware of her...don't let her push herself just to try to keep up, exhaustion is our enemy as is stress.
Do little things, bring her a bowl of soup or fix her favorite breakfast as she probably isn't up to cooking...straighten up a bit, wash the dishes...just a little at a time, but it can mean a lot to have someone help out that way.
I'm sorry I couldn't offer any more, I wish you much joy in your relationship and I hope you both can weather the storm...its very tough.
Welcome and come back often, join us in chat if you need to.
Stephanie
Hi there,
I am sorry that your girlfriend has lupus, but really glad that you have come here to in order to try and help her. it shows that you really care about her.
Its hard fr me to say what your girlfriend would want, and i am sure she is finding it very difficult as you and her are just establishing your relationship and she probably feels that she does not want to burden you with her illness.
She may also be withdrawing because she just feels so rubbish that she doesn't feel she has the energy to communicate or be in a good mood.
You could try to tell her that you have been reading about lupus and that you ave come here and suggest that she visits, you could show her the site and the boards. And you could also allow her space to be alone and just rest if thats what she needs, without getting upset yourself and feeling rejected.
Just let her know that you want to understand and are willing to do what you need to to help her through. I am sure in the end it will bring you closer.
Good Luck and send my best reagards to your girlfriend, i hope she feels better soon.
Take Care both of you.
Cassie.
I am sorry that your girlfriend has lupus, but really glad that you have come here to in order to try and help her. it shows that you really care about her.
Its hard fr me to say what your girlfriend would want, and i am sure she is finding it very difficult as you and her are just establishing your relationship and she probably feels that she does not want to burden you with her illness.
She may also be withdrawing because she just feels so rubbish that she doesn't feel she has the energy to communicate or be in a good mood.
You could try to tell her that you have been reading about lupus and that you ave come here and suggest that she visits, you could show her the site and the boards. And you could also allow her space to be alone and just rest if thats what she needs, without getting upset yourself and feeling rejected.
Just let her know that you want to understand and are willing to do what you need to to help her through. I am sure in the end it will bring you closer.
Good Luck and send my best reagards to your girlfriend, i hope she feels better soon.
Take Care both of you.
Cassie.
Hi there and welcome
You have already been given fabulous advice so I will just tell you how I feel when my lupus is playing up.
I do withdraw. I need peace and I mean total peace. If I can I stop being present for anyone, no demands, no obligations, just me...it sounds selfish but it isn't conciously at all, it just seems like a very strong need at that time. It is also a concious wish not to burden others with something I find so terribly frustrating and that I know no-one can ever totally understand unless they have experienced it for themselves.
I was able to explain all this to my husband before I felt ill again and he is very understanding. He literally ignores me when I need to be ignored. He occasionally suggests something nice and non taxing, like "Would you like to go out for a meal?" but with no pressure. He removes the children - protecting me as if I were the crown jewels. He knows that I can't handle going out or going on trips with the kids if I'm in a flare and he won't even suggest it. I still need love though and knowing that he is there is very important. He will often just reach out his hand to me. He knows that if I have gone totally silent I'm often in pain. At night he will come close but not squash me at all. Just the lightest of touch saying "I'm here if you need me". He cooks special things, or in my case doesn't cook, as he knows I often only like salads at that time, so he makes special ones that I love.
My husband never ever makes me feel that I am different for needing extra naps. He often sends me off to bed or clears the sitting room of kids and says rest. In the beginning I used to feel so bad about it and it really frustrated me but I have now learnt that he genuinely doesn't mind and if he comes in from work and I'm in bed that's fine, we catch up at another time.
I'm sure I have left a whole load out but still...
bye for now,
Katharine
You have already been given fabulous advice so I will just tell you how I feel when my lupus is playing up.
I do withdraw. I need peace and I mean total peace. If I can I stop being present for anyone, no demands, no obligations, just me...it sounds selfish but it isn't conciously at all, it just seems like a very strong need at that time. It is also a concious wish not to burden others with something I find so terribly frustrating and that I know no-one can ever totally understand unless they have experienced it for themselves.
I was able to explain all this to my husband before I felt ill again and he is very understanding. He literally ignores me when I need to be ignored. He occasionally suggests something nice and non taxing, like "Would you like to go out for a meal?" but with no pressure. He removes the children - protecting me as if I were the crown jewels. He knows that I can't handle going out or going on trips with the kids if I'm in a flare and he won't even suggest it. I still need love though and knowing that he is there is very important. He will often just reach out his hand to me. He knows that if I have gone totally silent I'm often in pain. At night he will come close but not squash me at all. Just the lightest of touch saying "I'm here if you need me". He cooks special things, or in my case doesn't cook, as he knows I often only like salads at that time, so he makes special ones that I love.
My husband never ever makes me feel that I am different for needing extra naps. He often sends me off to bed or clears the sitting room of kids and says rest. In the beginning I used to feel so bad about it and it really frustrated me but I have now learnt that he genuinely doesn't mind and if he comes in from work and I'm in bed that's fine, we catch up at another time.
I'm sure I have left a whole load out but still...
bye for now,
Katharine
I have Lupus, so does my Daughter. She is 17 and very sensitive about keeping it from her friends and boyfriends. She hates to be a "burden" and will often wear herself out trying to keep up with people. I am telling you this so you realise that your Girlfriend's slightly off manner is very normal for someone who is ill. I am sure she is disappointed that she has bad symptoms at the moment. Lupus can be unpredictable and that makes it hard for us and you.
You and her are both very welcome here.
x Lola
You and her are both very welcome here.
x Lola
Thank you for your kind words
As our relationship is so very new I have wanted to find out how i can help at these times and ultimately what happens ....what you have said so far has been great she was pleased that I had been on the site so thank you all
As our relationship is so very new I have wanted to find out how i can help at these times and ultimately what happens ....what you have said so far has been great she was pleased that I had been on the site so thank you all
When my lupus flares i often become withdrawn and stand offish, because i cant keep up, even if i want to, and feel i should be able to. i dont want to be a burden and hold people back, I tend to want to try and cope on my own, even though it's probably not the best thing.
You've been given good advice by the others. Just try talking to her, and show her you're willing to try and help her any way she thinks possible.
You've been given good advice by the others. Just try talking to her, and show her you're willing to try and help her any way she thinks possible.
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My flares are accompanied by a lot of emotional stress, and I usually don't want to talk, or I become withdrawn, and I'm very bad at communicating at times like that. I need people to be patient but I also don't want my disease to run my life, so I don't like people watching my every move, wondering if I should be doing this or that. A hug is nice.
(I don't know if any of this holds true for your girlfriend. I don't want to generalize that we all feel the same though lol so I just will tell you how I personally feel.)
(I don't know if any of this holds true for your girlfriend. I don't want to generalize that we all feel the same though lol so I just will tell you how I personally feel.)
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