Is there a support group for members of the family. I hear a lot marriages break up because the family member doesn’t have a clue of what’s going on. I went to Alanon to deal with my mom and dads alcohol addiction. It would be great if there was a support group, so family members can learn about this disease!
Family and friends of PsA'ers are welcome to join our community here to learn and share. Additionally Ben's Friends have a Caregiver Support Community on Facebook which you can link to from the communities list on the right towards the bottom of your screen. Hope this helps.
And we also have a group for family and friends here –
http://discussion.livingwithpsoriaticarthritis.org/group/friends-and-family-of-psa
We’d love to see this group grow and become active!
Good point, Seenie. Maybe if Tired of Pain's family member joins we could do a community broadcast to encourage our other family and friend members to join and energise the group.
Seenie said:
And we also have a group for family and friends here --
http://discussion.livingwithpsoriaticarthritis.org/group/friends-and-famil...
We'd love to see this group grow and become active!
Now there’s an idea, Jules!
So can you explain if they are able to access the full site? I shy away from inviting family because this is a candid place to speak freely. I would hate for my family to read all of my posts but at the same time they could truly benifit from the connection and information.
Yes, that’s the only thing that might make you reluctant to have family members join. They do have access to the whole site. But the the whole site is visible to everyone anyway: The difference is that the rest of the world most likely isn’t going to be able to figure out your name and address. (And a good thing too: a lot of us do share things here that we might not want everyone to know.)
That’s why we discourage people from using their real mane as a screen name here. You then become part of a crowd of almost 3.000 members.
Still, some of us are a bit more recognizable that others.
I agree with Rachael. For me it’s more about what I can learn and what I can share of my experiences with other people who can identify. I don’t get as specific with family members and friends…I wouldn’t want to talk about my inverse psoriasis with them! In fact, my coworkers didn’t even know I had psoriasis or PsA until after I went on Enbrel I finally broke the news to them, and I’d worked there for 14 years. I hid my psoriasis well, and when I went for p.t. I simply told them I had a bad back.
Rachael said:
So can you explain if they are able to access the full site? I shy away from inviting family because this is a candid place to speak freely. I would hate for my family to read all of my posts but at the same time they could truly benifit from the connection and information.
I agree with Rachael. I lie all the time to my Mother and siblings on how I'm doing. I wouldn't want them to read the truth ! :-)
Rachael said:
So can you explain if they are able to access the full site? I shy away from inviting family because this is a candid place to speak freely. I would hate for my family to read all of my posts but at the same time they could truly benifit from the connection and information.
When I was first diagnosed, and joined this site, I would read others' stories and would be moved to show Eric what other people were feeling and going through. It was incredibly helpful to me for him to understand how real and disruptive this can be. I had him read articles, blogs, and even sometimes directed him to posts I had made. It helps that he is a wonderful and understanding man who loves me to bits, but being able to read these things made it much easier for him to get the new me.