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Thread: Newbie, trying to find ways to support a friend with SLE

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    Default Newbie, trying to find ways to support a friend with SLE

    Hi. I am new to this site. I do not have lupus, but my best friend does. She was diagnosed with it last year, shortly after her aunt died from lupus related complications. I am looking for guidance in how I can support her. During the last year, she ended her 9 year marriage (which was a good thing) and as a result had to buy a new house, and was diagnosed with Lupus SLE after about 3 years of trying to figure out what was wrong with her.
    She is having a hard time accepting the changes she needs to make in her life and dealing with her diagnosis and depression. After a lot of effort, I finally managed to find a support group in my area, but she refuses to go. Can anyone please help me? While she won't go to any support groups, she reads all the information I pass her way. I am looking for books, magazines, etc. that will be helpful for her. She does not have a computer, so online information that I can print is good, but she can't access anything herself.
    I am also new to online posting, chat groups, and lupus so please phrase things in basic english to explain shortened codes and stuff.
    Thank you in advance for any advice or references sent my way.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Dolphingirl;
    You are a blessing and a true friend. I know your friend's trepidation with attending a group meeting (even if it is a support group). This disease (especially for newly diagnosed patients) has a tendency to make one feel isolated and alone..you do not know how to deal with the stresses and changes in your life and you have no desire to be around other people who are sick. Give her time, she will have to find the benefits of a group session on her own.
    Here are some excellent books for Lupus patients and their families:
    Living With Lupus - by SHeldon Paul Blau, M.D. & Dodi Schultz
    Coping WIth Lupus - by Robert H. Phillips
    The Lupus Book - by Daniel J. Wallace
    Also, try the Lupus foundation of America's websit at:
    www.lupus.org.
    They have a wealth of information and can direct you to other websites with good information!
    Let me know if you need anything more..we are here to help!!
    Best of Luck and Thank You For Being A Caring Friend
    Saysusie

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    Default Newbie, trying to find ways to support a friend with SLE

    Saysusie, thank you so much for the information! I will definitely pick up those books. I'm trying to expand my knowledge base along with my friends, because I believe that knowledge is the best weapon we have. Thanks so much!

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    Hi Dolphingirl,
    Your friend may never want to go to a support group and that's okay. I say this because I have never gone to one and don't feel a need to right now, but maybe I will in the future if my disease gets worse, etc. Some people are very well suited for that type of environment and others aren't. It will be up to her of course. It's great that you're passing on information to her because my biggest thing, and here I go getting on my soapbox, is "be an educated patient." Every lupus patient needs to understand the disease and how it affects him/her. She needs to understand what her labs mean (her doctor can help her understand these tests so that she becomes versed in it. Understanding Lupus has helped many of us to cope with it and not be afraid of it. "Know your enemy." All of those books Saysusie listed are very good and I particularly recommend Dr. Wallace's book. It's the most comprehensive one out there. If she's experiencing a lot of fatigue, which she probably is, your understanding is key. We often have to say "no" to things and cancel things because of this debilitating and unpredictable symptom. Fatigue in lupus is one of the hallmark symptoms and it doesn't feel the same as it does for healthy people. I always wonder if my friends truly understand that I'm not being dramatic. Let her know you believe her and support her. Hope that helps.
    I'm happy to give you tons more advice at no charge LOL :lol:

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