Lupus understanding

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Regular Member

Date Joined Sep 2010
Total Posts : 79
   Posted 4/25/2011 7:52 AM (GMT -6)   
I have a female friend in her 50s that has lupus and i am trying to find out more about it and how to cope with it. She is not returning my phone calls to her and when i go over to her apartment to see her, she does not answer the door. She was a very attractive lady when i first saw her and i had the pleasure of going out with her a couple of times. This disease of hers keeps her from going out a lot and keeps her confined inside of her apartment and not wanting to be seen by anyone or be around anyone. The only time she does get out, is with her daughter or family members. Is this typical of this disease not wanting to be around friends that really care about her??? I know that the sun, and being in restaurants at some places have a huge effect on her and she will not discuss much about it at all. How does one understand as to what she is going through and is there a cure for this lupus??? Please advise Thanks BOB

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 4/25/2011 12:40 PM (GMT -6)   
She might be feeling so bad that she doesn't want anyone around. Can you talk with a family member and find out how she feels?
There is no cure for lupus it is only managed.

Regular Member

Date Joined Sep 2010
Total Posts : 79
   Posted 4/26/2011 7:25 AM (GMT -6)   
Thanks Joy for your reply. Yes, she has a daughter that does live with her. She too, has been hard to get in touch with. One would think that with all the knowledge and medications out there, a cure for this disease could be found instead of a managed cure. Thanks Bob

Regular Member

Date Joined Mar 2011
Total Posts : 129
   Posted 4/27/2011 9:45 AM (GMT -6)   
I am sorry to hear this about your friend! I can tell you from my own experience that I turn more to this forum than anywhere. I get so tired of telling anyone how bad I feel I would rather not talk to them either sometimes! Even my own husband--it is hard to keep telling him "I feel so bad today"--so it is easier not to tell him anything and act like it is ok because you feel so terrible all the time. I have an extremely swollen belly (look 9 months pregnant) with my situation--so that is a huge further embarassment to me in public where everyone asks me when I am due! So I don't know if she is experiencing any of these symptoms that embarass her. All I do know, is that she is a very lucky lady to have such a devoted and caring friend as you to go online and try to understand her better! If we all had such supportive friends around us, I think a lot of us wouldn't even need to turn to forums such as this for support. I am proud of you and no matter how little she returns your calls, keep trying. I get down with this situation myself, and she may be feeling really down right now too about it. It may just need that she is reminded daily by your phone calls that you care about her---she knows you are calling even if she doesn't pick up. She may also be needing a lot of rest. It is hard for me to even answer a phone some days from the sheer torture of raising up in the bed to hold the phone. I know that sounds pathetic--but it is a huge effort at times just to do that much--muchless go to the restroom!!! So continue to be her friend and be there for her. She needs it now probably more than ever although she may not find a way to verbalize this to you! Best of luck! Nicki

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 4/27/2011 10:05 AM (GMT -6)   
It takes an enormous amount of physical and mental energy to accept this diagnosis and keep on going. May I suggest that your friend simply can't spare any energy for building a relatively new friendship right now? When we are injured/ill/depressed, we tend to draw into ourselves and rely only on people we are absolutely sure off. She may simply not know you well enough, and feel safe enough with you, to accept your support or friendship right now.

This is in no way a reflection of you or your willingness to learn and understand - it is about her and her energy level and her lack of energy to help you learn. Try reading The Spoon Theory - you might find it helpful.

Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Sep 2010
Total Posts : 79
   Posted 4/28/2011 7:46 AM (GMT -6)   
Nicki and Lynnwood: Thanks for your reply as it is appreciated. This is a lady who use to be very attractive in her facial features, and now, the beauty is being taken away because of this disease. While her facial features are not the same, it is what that is inside of her that keeps her going day to day. I can understand not wanting to be out in the public, but not wanting to be around a friend that cares about her is really hard to understand as we have known one another for for 3 years. All of this is taking place in her face and hands and all i know is that i wish there was a cure for this disease. I shall not give up hope in seeing her or talking to her again - as she is my friend. Thanks bob
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