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adl011
03-29-2011, 11:58 AM
My husband and I have been searching unsuccessfully for a support group for spouses, significant others and family members of people with lupus. I was wondering if any of you know of one or maybe we could all rally together and get our supports some support like we all have in each other. While our loved ones are not directly dealing with the physical symptoms of lupus, they feel the pain of lupus on an almost daily basis. They see us suffer, but they just have to sit back and watch it. There isn't much they can do to alleviate our suffering, and I know that must take a toll on them, and they need a place to vent just like we do.

Thanks for your help in advance,
Amanda

adl011
03-29-2011, 04:45 PM
Bump...anyone?

tgal
03-29-2011, 05:18 PM
Hi There! I am sorry that I missed this the first time around! There is a section in our forum for family members to get together but I must say that it hasn't been too successful as of yet. I think what it needs is someone to respond when people post something because if it has that people are more likely to call back.

Maybe some other members will have other/better ideas. Let's see what we can do!

adl011
03-29-2011, 06:43 PM
That's not a bad idea, but I was thinking a group completely separate from ours so they can be completely candid in order to get the most benefit from the group.

magistramarla
03-29-2011, 08:40 PM
I understand what you are getting at. My husband and I are members on the Peyronies site. Physically, it only affects men, but we wives needed to be able to vent with each other without the men reading our vents. The site administrator set up a "for women only" section to which only the wives were given "the keys".
I don't know whether such a thing could be done here. That would be a question for our dear administrator, Conrad.
Hugs,
Marla

tgal
03-29-2011, 09:02 PM
I will pass this on to Carlotta and Rob. That is a very good point and we will see what comes of it!

rob
03-30-2011, 05:50 AM
Bump...anyone?

I've been thinking about this thread since you first posted it. The pro's are that yes, our supporters could indeed benefit from being able to have some support from others in their position, and should be given an opportunity to do that if possible. The con's in my opinon are twofold-The big one is that we just don't have a significant number of family members who sign up here in the first place. And, some members here might not want their family members on the same forum with them for personal reasons. What I mean is, there are some people here who feel this is a safe place to unload their true feelings about people in their lives, often times those people are family members.

What you propose adl11, is a good idea, I'm just not sure how to do it at this point-that doesn't mean it can't be done though. This thread/idea has been brought to the attention of Saysusie and Conrad, so lets see what they think, and if they have any ideas about how we could do this.

Rob

adl011
03-30-2011, 07:51 AM
Rob, I don't think it'd really be the best idea to have our loved ones on here either. I was really thinking about something separate for them bc like you said, its nice to be able to express our true feelings without hurting anyone. Thanks for the input thus far.

Amanda

SandyR
03-30-2011, 01:29 PM
maybe a you can start a fb group. I know there's a WHL page on there but I don't belong to that because I don't want all 400 people on my FB account knowing my personal business. It could be a supporters page and maybe you can post a link here and on the FB page. There are tons of Lupus sites on FB too and you can also post a supports and spouses page on their sites.

adl011
03-30-2011, 07:15 PM
Sandy, that's a great idea. You know, as much as im on facebook, you'd think I would have already thought to look up lupus pages, but I never have. I'll have to see if my phone app will let me. Thanks!

SandyR
03-31-2011, 06:49 AM
are you on my page? There are a couple of Lupus links there. Kendra is a good contact to have for Lupus pages on FB. She keeps her page very active. She's on my friends list.