View Full Version : My girlfriend has lupus, I'm finding it hard to cope.

07-30-2008, 12:25 PM
Although we have only been dating for 6 months, my girlfriend and I have known each other for over 5 years, and have been extremely close for that time. We are both very much in love, and very serious in our relationship. I am 19, and she is 17, but we are both very serious about each other.

Sadly, she has lupus, and has had so for around 10 years. In addition, she also has M.E., so life is really hard for her.

I'll give you some background information, I just want to know what I can do for her. I really care about her.

It is a long distance relationship, as I ive in Scotland and she lives in the West Midlands.

Our relationship started very intensely, and tbh I completely smothered her. I didn't understand about her illnesses at all, I barely knew anything about it. Over time though I have learnt more and looked up websites, spoke to her about it, things like that.

Obviously this smothering was very bad for her, and ultimately we ended up on a break because she couldn't handle it. Because of all the smothering, she just needs some time to relax and have some space for a while. We are still in touch, and see each other often, almost every day at the minute, when she can. We plan to be back together when she has had the space that she needs to recover.

She is very very ill at the minute, I've never known her to be so ill. I desperately want her to be okay again, and obviously I want us to be back together again.

I'm finding it so hard atm, cause I really love her, and sometimes she seems very standoffish with me because she is so tired and stuff. It's hard not knowing if she still feels the same about me as she used to, even though we plan to be back together when she is better, all I really have is hope that we will be, and that she still feels the same?

As well as that I feel really... kind of useless, for not being able to do anything. Any time I ask, she says there is nothing I can do. I really wish I could just help her relax, cheer her up, anything. It's so hard just sitting back when my loved one is suffering so much.

In a really weird sounding way, I kind of feel guilty for well, not having the illness? I really want to be able to understand, but I know I can never properly. I just want to support her, and do whatever I can to help her.

Sorry for the rant lol

07-31-2008, 08:55 AM
You never need to apologize for "ranting". It is totally acceptable here. I just want to say that, one of the most important things that those of us with Lupus need is an understanding and caring significant other!
Yes, when we are very ill and in pain, it is difficult for us to be sociable and/or loving. She is correct, in one sense, that there is not much that you can do to take away her pain. What you can do is understand her illness and give her that "understanding" when she needs it.

Sometimes, all we need is for our loved-ones to believe how debilitating our illness is and to allow us to do what we need to do in order to manage this disease. You are a very perceptive young man in that you understood how your "smothering" had the opposite affect on her. I am impressed by your willingness to learn as much as you can about her illness so that you can give her the type of help that she needs. It is, therefore, equally important that you have an understanding of her medications and how they can also affect her.

It is not uncommon for lupus patients to suffer from extreme depression. The depression is both clinical and emotional. This is another aspect of her disease that you should be aware of and try to understand. Lupus causes many chemical changes in the body whose imbalance can cause depression. Also, the complete change of lifestyle and the many restrictions caused by this disease causes emotional depression. It might be helpful if you support her in making those lifestyle changes easier for her. Do not insist that she try to do things that you feel will make her happy. Learn, from her, what things she feels that she needs to make things easier for her. Do that by just simply listening to her. Don't try to offer ways to "fix it" or "make it better", just listen intently and then try to do those things that she says that she needs. When you ask her how she feels and she tells you, don't try to offer ways for her to feel better, tell her that you understand how the pain can make her feel and/or how frustrating things must be. Then let her know that you are there for her to give her comfort, understanding and any help that she needs because you truly believe everything that she tells you about her symptoms and how this disease affects her. You might even suggest that she come here to this site so that she can freely express her feelings, learn more about Lupus, and belong to a community of people who also only want to help her.

She is very lucky to have you and you are a very astute and caring young man. I'm glad that you have not given up on her and I'm sure that you never will. Be patient, be supportive, be understanding and keep loving her. I wish you both the very best.

Peace and Blessings

07-31-2008, 09:17 AM
thanks :)

it's just really hard, becase we're on a break, so she can have space, and well, sometimes it seems like maybe she is just like, bored of me? like she wants someone else or something more etc.

yeah, she does have depression, i try as hard as i can to make her happy. sometimes i feel liki'm part of the problem than the solution though.

one thing is, no matter how hard it gets, or how much i worry that she doesn;t feel the same way about me, i know i will always feel the same way about her, and i won;t ever give up on her.

08-02-2008, 12:21 PM
I'm glad to hear that. She is probably a bit "gun shy" right now as a response to the initial "smothering". Continue to give her time. When you talk to her, ask how she is feeling, ask if there is anything that you can do, and then tell her to let you know if she needs anything, and then end the conversation before she starts to think that the "smothering" is about to cone to play again.
Be patient, there are a lot of issues that you and she are dealing with right now and her health is of primary importance to her right now. Continue to be there for her and we will be here for you!!

Peace and Blessings

08-02-2008, 04:05 PM
I think I should point out that she broke up with me yesterday, as a result of her illness being far too severe right now, she cannot cope with a relationship.

It's really awful, and although I am hurting, I do just wish her good health. Hopefully when she feels a bit better she may be able to handle a relationship again.

Despite not being together, I still care for her deeply, and I will continue to post on here and hope to learn and understand as much about the illnes as possible.

08-03-2008, 07:36 PM
Seriously, you sound amazing. I don't think you should waste your time trying to be understanding enough and constantly being there for her. Don't forget that relationships are a two way street. What will happen in the future if you need support from her? I think it's so great that you are willing to learn about her illness and do your best to be there for her... Believe me, that is sooooo much more than my own husband has ever been willing to do!!! But you're not married and please consider the possibility that it could become too much for you to handle in the future (which would be understandable); it might just be better to let it go when she's telling you to. Then again, I don't know you and I could be 100% wrong.... Just something to think about. I hope you are well, and I'm sure it will all turn out just fine in the end :wink:

08-04-2008, 02:46 AM
Heh yeah I know what you mean. And like, what you're saying could be right, but we were togetehr years ago, then friends for years, and then together, and then friends, and then together, and now friends again. So I've no doubt in that we'll stay friends, in which case, even as one of her best friends, I still care out her more than anything in the world, so I want ot learn and understand as much as I can, and just be there for her however she needs me, Even if we're not together and never will be again, I know my feelings for her won't change, they haven't in years and years, and she still deserves to be understood and cared about. It might sound weird but I'm never going to give up on her. So even though we aren't together, I still care just as much, and I'll do all I can to learn and understand, and make life as easy as it possibly can for her.

And like I said, I can offer my advice and support to you, not as someone with lupus, but as someone caring for someone with it.


08-04-2008, 11:29 PM
We will always need to hear from a person who is supportive of a Lupus patient. We don't often get that perspective so you will be very much welcome here whenever you post.
I agree, if your relationship with her has always been based in a true friendship, then you will always be important to her and she to you. So, we will support you in all of your efforts to learn about Lupus so that you can continue to be a supportive friend to her!

I wish you the very best and, yes, keep posting...

Peace and Blessings