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Thread: Trying to figure it all out...

  1. #1
    Join Date
    Nov 2009
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    Default Trying to figure it all out...

    Hello everyone,

    First, I'd like to say that I am completely new to this forum, and I am impressed with the massive user base and support system for those with lupus. It really is a blessing that there are places like this for people to come to and learn how others cope with lupus.

    I am a 22 years old and I am in a long time relationship (three years off and on) with a girl that I have never stopped loving even when we weren't together. She has had SLE for a little over a year (or more with a missed diagnosis), and I am trying to become a more empathetic and resourceful boyfriend for her. We live only a few hours a way from each other, so it isn't that bad not being able to be with her during the week, but sometimes it seems longer.

    I just want to know what I can possibly say and do, during that time we aren't together, to help her feel like I am extremely dedicated to doing whatever I can to make her feel better. We talk on the phone and I sometimes have a tough time of thinking of ways to cheer her up or maybe having a solution to the added stress of daily life to lupus. I end up apologizing a lot for always asking how she feels, because I FEEL like I should know by now, yet I always stupidly make that mistake. I feel so bad that I don't say the right things in the times she needs me most and I just want her to know that if she ever needed me I would be there in a heartbeat. If there is any advice for a guy that just wants to be more empathetic, I'd love to hear it.

    Thank you in advance.

  2. #2
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    What a sweetheart you are!
    Keep doing just what you are doing. You are researching and learning so that you have a good understanding of what your young lady is going through. I know, men want to fix things, and often feel bad when they can't. I know that this frustrates my hubby.
    Believe me, I'm very grateful that he researches what is going on with me and understands. Sometimes, all I need from him is a hug, some understanding and someone to bounce ideas off of.
    Keep coming back here, and feel free to ask questions. Someone here will probably have an answer for you.

  3. #3
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    I agree with Magistramarla. You are already doing one of the most important things that you can do; learning as much as you can about this disease, it's medications (& their side effects) and how it can affect ones life. You are to be commended for wanting to help and for coming to us for answers. You are a rarity and she is very lucky to have you!
    Having that understanding will mean so much to her. Remember, this disease can affect every single part of our bodies (muscles, tissues, joints, the nervous system, and organs) and it can cause a complete lifestyle change. As such, we are prone to bouts of depression and sometimes even anger due to this great loss. Also know that the disease, itself, causes hormonal changes that can lead to depression. During these periods of depression and/or anger, know that you cannot fix it or make it go away. You need only to be understanding, patient, and supportive.
    Also, when she says that she is tired, think of her fatigue (as our moderator Rob described it) as like lying under a lead blanket! It can be a debilitating fatigue that is overwhelming. She is NEVER being lazy and she is NEVER exaggerating!
    Lupus is also a disease that changes. Symptoms today may disappear and/or be replaced by new symptoms tomorrow. It is an unpredictable disease. Go through the forums here and you may find the answers to many of your questions. Otherwise, come to us at any time! We are always here to help you and to help her as much as we can. I wish you both the very best.

    Peace and Blessings
    Last edited by Saysusie; 11-24-2009 at 10:46 AM.
    Look For The Good and Praise It!

  4. #4
    Join Date
    Feb 2008
    Thanked 1,110 Times in 630 Posts


    Hi GradLife33,

    From a guy perspective, it sounds like you are doing all the right things already. I would just say that you should affirm from time to time that fact that you are, and will be there for her through the good, and the bad. And you should know, that just because she has SLE, it does not mean that there's nothing but bad times left. She will have tough days, and she will have great days. You have to be flexible and realize that you may plan something, and she wakes in the morning to find she cannot exert herself, or go anywhere. It helps to have a "plan B". Say you had a day out planned together, and she's feeling bad, don't be afraid to change your plan to something inside at home. Rent a movie and order in some pizza and have a day together anyway. The important thing is that you still get to spend some good time together, even if she can't do much more than hang out on the couch that day. And on the good days, live it up and enjoy every minute of it.

    Just let her know you are there for her no matter what. A little bit of supportive understanding can go a really long way for a person with SLE.


  5. #5
    Join Date
    Feb 2011
    Thanked 366 Times in 316 Posts


    Hi Gradlife33,

    You pointed one thing out you do and that's to make her laugh, even though it will be hard for her at times with either tiedness, fatigue or pain, stress and depression is he words thing for Lupus, it's Lupus's main trigger for upsetting the system so keep her laughing mate to keep her mind of it.
    I don't think your doing to bad and even though your relationship as been off and on, your truley devoted in wanting to be in her life, it's all actually down to baring with that person and what they're going through.

    I think it's terrific how your helping and standing by her, wheather it's a few hours away from her or telephone your still showing true devotion to your relationship and that means alot to a lupus suffer.

    ((Hugs to you both)) Terri xxxx

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