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friday7

Virtual Support Group

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Hi. I was having a hard time again lately with keeping my BP up and getting infections and I felt upset because I didn't want to be stuck in the house again.

Then I thought about a you tube clip I saw once about a woman who used Second Life as a place to teach some of her students that were physically disabled and I thought what a great idea. They were able to not only learn and talk about their issues but also socialize. And although they were behind an avatar they were able to talk to others through their PC. Anyway I started to wonder if there might be anything like this for Chronic illness. It occurred to me that there are no in person support groups for P.O.T.S. or even just chronic illness around me. And part of that problem is a lot of people have a hard time showing up. Even some of the facilitators have a hard time keeping to a schedule because they also have health issues.

So I wondered if perhaps Skype groups or groups in games such as Second life were perhaps something that might be in the future. Or even now I don't know.

For me I like the idea because I am better talking then typing. Plus I think I would feel less lonely and more relaxed if I could actually talk and see the person.

Of course there is internet safety. You wouldn't want to just get online with a bunch of strangers

and let them have a window into your life. But yet we pretty much do that on social media already.

And I was thinking this kind of group might be done best by some kind of professional that would interview the people before hand to make sure they weren't just in the group to troll or who knows what.

Anyway, I haven't slept all night , so I am just thinking without a filter today and I just thought. I wonder if it's possible..to make a virtual support group.

So Anyone got any opinions? Think It's nuts? Think it would work? Think you would like it? Think you would hate it? I'd be interested in anything you have to say.

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Love the idea! I tried a few of the support groups on Facebook, but they weren't for me. It would be nice to have an actual (sort of) face to face conversation with people who are facing similar challenges. I have wonderful friends, but they can't really understand a lot of what I go through, especially since I look healthy.

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I like the idea of it, actually am trying to get the process going of a local support group. Here are some POTS/ Dysautonomia ones that are already ongoing (information can be found on the first page of the most recent Dinet newsletter):

Dysautonomia Support Group of Los Angeles

Meetings held at the Good Samaritan Hospital, Moseley-Salvatori Conference Center, Los Angeles, CA
Next meeting – August 16th
RSVP Lynn at 213-977-7423

For more information about this group, email ecaldwel@lacard.com

North Carolina and surrounding areas.

dysLife Carolinas is a multi-chapter group for people living with dysautonomia and related conditions.
Check them out on Facebook at:
https://www.facebook.com/groups/371932662940208

or email them at dysLifeCarolinas@gmail.com

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I just think everyone is so connected these days, I think virtual support for people that can't get out much, makes sense.

I'm glad to see others feel this way as well. Although you can get support from an online group it's not the same as talking in person. I wish I could start something myself but I just don't have it in me.

I've been sick all week so I haven't really looked into this any further but I did see, that in the online community,

"Second Life", there are areas specifically for people with disabilities.

For anyone that doesn't know, "Second Life" is a virtual world. It's similar to online gaming in that you create an avatar and interact with people in real time. I don't want to link to it because I don't know the rules on listing that kind of thing, but you can Google it if you are interested. I'm new to this myself so I don't know much more about it but it's interesting. I'm glad to see that is has places specifically for people with Disabilities. I can see it being of value to people with Chronic illness.

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I love this idea. I'd definitely be interested in joining a Skype group. I don't do Second Life and don't know much about it, but I wouldn't mind trying it out for something like this. Not all of us live in places where there are lots of dysautonomia patients, so this would be great.

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