View Full Version : need advice- partner with lupus

10-26-2005, 02:19 PM
Hi All!

I just found this board and have been surfing through some of the postings and responses (but admittedly haven't got through them all yet)! Anyway, I'm in boston and the person I am dating is not very close by. (Though hopefully that will change in the future!) Anyway, she has lupus and I try my very best to be supportive but she always tells me she's fine or tries to down play what's going on. I know she doesn't want to get me worried about her and it's very sweet of her, but I'm committed to her 100%. Please if you would, tell me, is there anything I should be doing or saying to her? I only know what she will let me see and what she'll tell me when we talk (-- and since I'm not there every minute of the every day, a lot of it is very limited).

So if any of you are in boston, is there a support group that meets in the boston area for partners of people with lupus so I know what to expect and I know how better I can help her. I know she is perfectly capable of doing things on her own-- but is it wrong of me to want to help? Please tell me if part of my thinking is wrong. I'd really appreciate any reply.

If I were your partner is there anything else I should be doing-- or for the partners out there is there any advice you can give me?

thanks in advance!

10-26-2005, 08:07 PM
Hi cordyclear! First of all, I think it's so wonderful that you're interested in getting all the info you can in order to be supportive! If only more partners would educate themselves, because I think it's a relief just knowing that your partner has some insight into what you''re dealing with. This is just MY opinion but, I too, tend to down-play the way I feel. For the most part I consider myself very fortunate compared to some and keeping a positive attitude is the best thing ever! Your partner is probably doing just that. Keeping a positive attitude, not wanting to worry you or complain. I do the same, and my biggest comfort is knowing that when I REALLY need help physically, or just need to have a mental "melt-down" (In my case, maybe once every 3-4 months!) I know my husband is there for me. It can become difficult to strike a balance between not complaining too much, and acting like everything is completely fine. When you complain too much, people will begin to question if you're exaggerating and it starts to become ignored. When you act fine all the time, everyone assumes you ARE completely fine and sometimes take advantage. I've just learned to say what it is I need. Like "I really need to stop now, can you go downstairs and get the clothes out of the dryer for me?" I used to just push on to the point of exhaustion, anger and almost tears. My husband knows that when I actually ASK for help, I really need it because, for the most part I never ask for favors. I also ask when I just need to talk about it, my fears, my sadness, my concerns. Just letting her know that when she needs you, you are there for her - what a relief! Some partners become bitter and distant and that's just like the straw that breaks the camels back for someone who's dealing with the unknown and already feeling lonely and isolated. So, after my long ramble (sorry, by the way) my advice would simply be - let her know it's Ok to say what, if anything, she needs from you and when. I think she'd be more inclined to take you up on it when she needs to fall apart and let her guard down a little. Good luck, and I hope this helps at least a little.

10-31-2005, 08:16 AM
Hi Cordyclear;
I think that Mitch has given you the best advice that you can get and I can only second everything that she has said. Especially the part about educating yourself so that you can be supportive and understanding for her. The more she realizes that you truly do support and understand her, the more she will be willing to talk to you about what she is feeling and experiencing!!
You are wonderful for wanting to help her and for being there for her! I wish you both the best!
Peace and Blessings

11-01-2005, 07:33 AM
What a lucky lady to have you. My advise is simply to be there and when she is ready she will share it with you. In the meantime simply having you there to lean on when she needs it and she will start to see how concerned you are and she will open up more. Sounds like she wants to carry her own burden and theis is perfectly normal behavior for a female.
She will realize how much you care when she starts seeing your active involvement in the Lupus Comunity. By being active you are going to learn so much that she might find that you have the answer to alot of her questions.
Good Luck!!! Remember..."One Day @ a Time"

Angie :B-fly: