Looking for a video support group

[cbuckley221]

Hello!

First off I am so happy to have found this website! I've been diagnosed for several years and in all that time I haven't found any support group or forum that hadn't been abandoned at least one year before I was diagnosed. It was a joy and a relief to see that this is an active group with lots of support options. I am so thankful for this and I want to thank the moderators and everyone who participates.

But beyond that, I am also looking for an opportunity to video chat or meet up with people in similar situations. I have seen previous posts were the idea of a video chat was offered up but it was ultimately thrown out due to people's desire to remain anonymous in the manner that this forum affords. If this isn't something that is offered by anyone associated with this forum that's okay, I'm also open to options that are run by other organizations/people/etc.

I plan on becoming more present here as a means of obtaining the support that I am looking for, but I am also looking for an opportunity to talk face-to-face either in person or virtually, since all the ones I've found so far are long dead.

I'd love any information anyone has!

Thanks so much!

 

[sunkacola]

Greetings, and welcome to the forum. We're here to help one another. No one has yet managed to get folks interested in doing any kind of video support group through this forum, but it never harms anything to ask again to see if there's interest. It would have to be something you yourself set up and moderated separately from this forum, though, because this forum is not set up to do that.

If you have questions, feel free to ask. Here is a post with some hopefully helpful information and suggestions for you:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Auriel]

Hello cbuckley!, glad you found us, welcome to the forum
️, I also was looking for support groups a while ago but there was a seeming decrease in numbers in all the local areas until the groups just stopped, (I don't know your area ) but maybe have a ggle to see if there's any local ones (also the term g00gle gets you put in a waiting queue, so we have be inventive with how we put it down)

 

[JayCS]

Hi cb,
the closest we've come here to video chatting was getting to know this "How Are You" Project, which I took part in a whole while. It was focused on exploring the 100s of meanings of that phrase. It started getting more and more of a strain to me, esp. in the larger meetings (4-8 people) so towards the end I was only answering impulses via chat or emojis, with camera off. I don't think Laura is actively looking for people to interview and share their stories for a sort of modern theatre play, because she's digesting what she has and putting it together as anonymized as wished for. But she's incredibly nice, so if that's something of interest, by all means do a search for her and contact her.
Generally it's a strain for me being in groups, esp. video in groups, and talking about my conditions in person even with single people for longer than 5 or 10 minutes is usually a strain, even if they have the conditions themselves (if I don't know them well). For me it's best for dosing well to communicate in writing, by mail or forums. It's too "exciting" when I'm in person, so I overdo it easily.