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I Am New To Facebook Myself

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Does anyone know if there is a way to join health groups but not have all friends be able to see what you are writing about?

I want to seem as normal to anyone who would read my profile as possible.

Is there a way to have confidentiality or is it better to keep health matters separate in a group like this?

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I want to know, too. :P I want to be a part of health FB stuff, but don't necessarily want all my family/friends to read things like, "if I don't pass gas, I get so short of breath" :lol: . This is stuff I have actually posted on here on this forum! Because I am anonymous(and y'all too) then it's not embarrassing to talk about what truly we feel or experience. Maybe FB isn't an option. :(

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So glad this topic came up. I joined a few facebooks POTS groups. One in particular seems to have a lot of activity. Then I realized... wait a minute, will everyone I know see my posts??? I wasn't sure, so I haven't posted anything. And I guess I won't!

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It depends on the type of group. If it says "open group" then everyone can see the members names and their posts within the group. If it says "closed group" then everyone can see the members names, but they cannot see their posts on the group page. So, for example, the "Got POTS? We do." group is closed, and your postings there would not be seen by your facebook friends (unless, of course, they are also part of that particular group). The "POTS" group is open, and your postings there could be seen by your facebook friends.

Facebook fan pages are always public. DINET has a facebook page here: Dysautonomia Information Network. Non members aren't allowed to post, but they can see all of the content.

Rachel

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Rachel I'm confused. I'm not finding a Facebook Dinet group? When I click on the link you posted, it brings me to my regular facebook homepage.

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Hi Naomi,

That's strange! The link brings me to the DINET page, both when I am logged out of facebook and when I'm logged in.

You can probably find the page pretty easily by searching on facebook. Search for "Dysautonomia Information Network." Make sure you go to the one under the pages category, and not the old one under the group category. The group will be deleted soon when facebook archives all groups in the old group format, but the Dysautonomia Information Network page will stay.

Hope you can find us!

Rachel

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Rach, I'm so confused on facebook and feel like where you use your real name,I feel like it's breaking hippa privacy laws when it comes to medical info support groups. Even support groups you physically go to you agree to not talk about anyone within the group once you exit. People have signed me up without asking me first. Then when I can Google a person's name in a group and it brings me right into the group I find that a little creepy. I DON'T want certain people looking up what is wrong with me. On my own page I'm trying to educate my family by having friends chime in so they know I'm not the only person having these weird symptoms. I do have WONDERFUL friends with POTS and have met more on FB. Would love to really know a group is not posting my name and info everywhere or another group where you have a fake name. I just don't get it as everything is so hippa these day medically. I'm I alone with my thiking? Here we are under false names and I feel safe. Dazed and Confused these days ~

Bellamia ~ :blink:

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hey y'all,

I have an fb..... but, i happen to be a very open person. Most those that i talk to on fb know I have a 'rare disease' and get bed ridden alot, along with being sick alot. (and they knew me as a go-getter all my life too). I don't post it all over that im so sick, but it is in my info of what i have, as i would rather inform people of it, despite whatever reaction they have, than to keep silent about it. Several friends may bring it up on my wall, or ask me how my day or week has been or what it is I have. I usually just tell them in a nutshell, i dont get into intricate details cuz there's just too much, but i quickly sumarize it..... i might not mention the diarrhea from 8 am till 5 everyday (cuz i know its out there for others to read, and i do have some dignity).... but i mention my other symptoms vaguely. I guess what im saying is, i dont go on and on about my sickness, but when it's brought up, I talk about it openly, hoping others will learn about it, as, to me, the more people know about it and the more people i can educate about it, the more awareness there is of dysautonomia.

But gals, dont take offense.... im a rare breed..... Im just open and weird like that.... lol. But, I am weird about my privacy too.....

:)

best wishes

tennille

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Did you see FB today... They want to know every way you communicate with your friends.... I think they are the government. LOL :lol: This I saw on the new after the face recognition on everyone that maybe one day they will sell all of that information. Crazy ~

:o What do I do now?????? I falling into the giant facebook hole of horror.

Oh, check your privacy settings weekly now, they are very sneaky snakes. Mine get changed without me touching them. Now how did that happen? If anyone needs help contact me, as they are tricky or Google privacy setting and for the month and year and follow the directions.

We have enough to do just being chronically ill with POTS ~ Without having to worry about are settings ~

If you try to get out they keep all of your info for ever..........:unsure: OH nooooooooooooo!!!!!!!!! What have we done, we just wanted friends? :rolleyes:

Bellamia ~xxxxxxxx's

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hey bella!

I too, check my privacy settings almost daily actually. I don't like to be 'searched'..... and i keep a tight lock on all my settings. Looks like you might know more about the privacy stuff than I do though.... I may need to keep in touch with you so that i can keep up with any privacy changes! I admit, they have many ways of invading our privacy and weeding around our own settings. I refuse to do any farmville, application things, the hugs, hearts.... all that stuff, i turned off all of it. Today looks like a good day to review all my settings again :) I have to admit, there are times i have shut mine down, and i still think about it today, about shutting it down for good, as sometimes, i think it's gotten out of hand with 'keeping up with the Jones's' lately and well, seeing so many people 'living', well, it just gets me down.... :( cuz i can't 'really' 'live'......

you are a hoot bella! Glad yer on here!

tennille

tennille

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tennille,

I hope I spelled your name right.... I had turned off all apps and web pages also, but every time there is a big update they do it again. So, I was out for the first time today at an open studio art class. Told the instructor, just in case something happened to me my medical info was in my back pack. They made me feel like I was a Picasso with my now trembling Potsie hands...Picasso once said, "It took me my whole life to learn to draw like a child". After sitting for one drawing my was head killing me and I had to lay my head down on the table to draw. I peeked up to see if anyone noticed.:unsure: The instructor had her eyes glued on me and had written down my name. I said to myself, "suck it up Bellakins or your out of this fun class and back in beddykins on facebook forever and you'll never ever meet a real friend again". So, I'm home exhausted!!!!!!! In bed with my loveable doggie ~ Then thinking back to my childhood I remember I could never hold my head up for very long at school. I'm weak, this has been a long progressive illness. :o I've known that , but it was a light bulb moment once again. Please do be in touch ~

We will overcome Facebook and survive :P

BellaMia ~

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Even though you delete your posts good oh googleiegoo has most like scanned the page... Oh yeah! and it is collected in it's catche @ the bottom of the page on on the internet list of posting. Once again it makes me :angry: ! So come here and pretend your someone else :D ~ or your pet :lol: Oh, they won't let you do that anymore. You have to be a real person now, but have you noticed all the little kids on there? What's up with that?

Bellamia ~

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Ok, I found it searching the name on FB. I see it's an information page. I thought it was set up like a group, but that's ok - I'm good here. :)

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google has a new social media tool called Google+. You have 'circles' of friends, acquantainces, etc. and can decide to share what info with each.

Currently this is in development and only open by invite - much like google mail was originally.

If anyone wants an invite, PM me.

noreen

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Noreen, How are you? I was just going to look you up....I miss you!!!!! My son told me to stay away from that Google plus, He warned me don't touch any of the settings, as it will send eyery page you visit to all of your friends. TMI, For me and Google is trying to make their own facebook page and compete with FB by Google +. I hope all is well with you, I have been back just a few days. Like Dorothy, from "The Wizard Of Oz", there is no place like home!!!! clicking my ruby red slippers.

Bellamia ~ x's love you my friend ~*

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Hi bella sweetie-

Google+ is still in testing and only available by invite. None of the tech forums have mentioned what your son says happens. google's system is supposed to be so you can address your postings to select circle of friends and those in other circles won't see it. since that is the model, any problems should be worked out in this testing mode. I imagine it will all be fine within the next couple months.

enjoy hugging your doggy and be careful of the heat

noreen

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Just wanted to let you know I spoke with a woman who is a member of a POTS group on facebook. She said the posts do not show up on your personal facebook page or get sent out to friends... so if anyone was concerned about that and wants to post, it sounds like it's safe!

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I believe I see them showing up in my feed.... Also like I said before, they can are scanned by Google the same as these here do , but here many us use different names. It makes me upset as I would like to meet more people with Pots, Mitro, Mast cell, but do not want the whole world knowing my business. That is why I tighten up my privacy and share with my potisie friends as I find them on my page. I can tell a group of potsies when I know them all and I can't enter into the conversation..and if I'm wrong I'll find out and report back to all. I'll ask my friends. All I ask for is privacy, especially when it come to medical in a group. Especially when there are all the Hippa rules everywhere you go. I feel those groups break your Hippa privacy laws by sharing. I believe what is said in a group when someone is using a full disclosed name should stay there. Facebook is misleading to many people. Many people don't even know their walls are open for full view, that facial recognition has been used on all there photos, and once again should you miss a notice which I never see about privacy all your settings are at risk. C H E C K T H E M all weekly, I thought monthly was safe enough ~

x's

Bellamia ~

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Ugh, I was mistaken about the privacy of the facebook group. I don't know why that person on there told me that it was! I just saw a message on there saying they were creating a private group and realized that it hadn't been. Glad I never posted anything. Sorry for the bad info.

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Guest maia

Im on facebook and dont use my real name, etc. because ive 'friended' some friends of friends that ive never actually met. I usually dont post on the pots forum i found but i joined it. its a bit of a pain to keep things private, but what i do is just delete the posts/comments/notices that ive joined from my wall so no one can see them unless they catch them just when i post them. Notices from the group dont post to my wall, and i check the privacy settings weekly to make sure i dont miss one of the fancy dancey were going to expose you without telling you updates, lol. Ive also blocked my profile from anyone seeing it other than people i accept or invite as friends. I think as long as you keep tabs on the updates and what is on your wall, youre good... all the info you post is stored by fb though, but i think all servers are like that now regardless of what sites they host.

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