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Posted 12/6/2011 7:36 PM (GMT -5)
Ok..I thought Facebook would be a great way to network with friends and family and gain some support for my condition....but I was wrong!

Apparently social networks on the internet lack the human touch. I post a photo of myself and get all sort of mix negative feedback regarding my appearance. I ask for support and try to explain what I'm going through wit IBD AND grieving my father's death and only the same 3 people respond. Other don't pay attention then I get nasty emails replies if I happen to flip out due to grieving. The whole experience turned out to be quit disappointing.

Guess I expect too much. I seem to do better socializing with people at work who know nothing about my condition or for those who know, in person one on one. It's nice to be treated like "normal".

So I took the plung and deleted my facebook account. Who needs facebook if you can email a handful of good friend who understand on a one to one basis. Sometimes that group communication goes awry. Not everyone wants to hear about what we are going through so I invite the one who care to know to email me personally.
Posted 12/6/2011 7:46 PM (GMT -5)
Aww, I am sorry. I have a Facebook page but I do not put personal info on there. My posts relate to what I am doing(like making Christmas cookies with my mom) that is it. I post pictures because we have a lot of family that lives far away. Try not to let people bug you. It isn't worth it.
Posted 12/6/2011 8:02 PM (GMT -5)
I also have a facebook account and learned not to post personal comments. I post pictures of my cats, daughter sometimes, and links to pages and information of interest. Facebook is best not taken too seriously. There were times early on when I would open up too much on it. Now some of my "friends" on there are people I work with and family. I try to limit myself to fairly neutral content, though I sometimes do post something political, or a petition. There are many facebook pages you can "like" along with groups that will then come up on your news feed. I find this the most interesting aspect. I follow lots of art museums, news feeds (New York Times, local news and weather, NPR) etc. It is really a great resource for information. You can find groups on any topic, and of course UC. Maybe just change your approach and expectations and you too will find something useful from it. You can also email through facebook for more private conversations.

Post Edited (beeswax) : 12/6/2011 6:52:50 PM (GMT-7)

Posted 12/6/2011 8:20 PM (GMT -5)
Even people close in person can't understand the way someone who has ibd can. That's why this is a good outlet
Posted 12/6/2011 8:42 PM (GMT -5)
Well it is true - Facebook is good for keeping contacts open, but isn't very personal by nature. I've posted about my UC but I don't actually know who outside of my close group of friends I hang out with in person on a weekly basis really *knows* about it because I don't know who is hanging on my every word vs scrolling through a hundred posts in their feed. Or for that matter, what Facebook has decided is important enough to show or not!

I did post about IBD awareness week saying that if anyone would like to take over being aware for me, I could use a break. I was hoping for an offer but no luck. tongue
Posted 12/6/2011 10:56 PM (GMT -5)
I have friends on FB that I have known for ages. Whenever I am feeling down or hurting, they are there for me to cheer me up. I have to say that I actually like FB. I didn't at first because I preferred MySpace but it sort of grew on me. I am not shy about posting about my Uc and in fact, I try to raise awareness on it. I have some real clowns for friends but they can be real sweet hearts. I even have a few people from HW on it as well.

I'm sorry that you are not having a rewarding experience with it.
Posted 12/7/2011 12:31 AM (GMT -5)
Facebook really grosses me out. It goes WAY WAY beyond what I need. Years ago while hanging out at frag sites with friends and custom mappers we would hang pics or create our own website with pics and hang the URL.

There is nothing impressive about facebook anybody in modern IT could have put it together. What most people did not expect was the massive appeal, I can only compare it to AOL which made no sense to me either. I used to hookup with various internet providers always looking for the best connection, then I started getting these AOL CD's mailed every month to my home. I was amazed people wanted to go thru a giant 'layer' that was not necessary to get onto the internet.

All I hear about is my daughter saying she observes mommies spending their entire day online at Facebook in other households. I think many people in a ho-hum job hang out there while at work too. Friends used to rag at me for not being active so I hung my pics and once or twice a year I log on. I hooked up with 9 friends from my hometown for a ski trip in the rockies and that is what is useful about it. Beyond that its way too much 'ego' and appeals to the worst part of people IMO.

Online dating was weird, package yourself up like a 'product'. Well Facebook is the same thing but 24x7 forever.
Posted 12/7/2011 1:05 AM (GMT -5)
i actually built a support system on facebook before i found this forum. i didn't do it under my real name though; i didn't want my friends and family to know what i was going through. of course, my facebook name was easily figured out by my brother but he respected my privacy enough not to go on it (it was the name of the defendant in my first mock trials case... i played the defendant). going on there became a haven for me. on days that i was healthy, i was treated like i was normal. on days that i was really sick, they sent prayers, words of comfort, jokes, and made me feel loved. the best example was the first time i had to do a cleanout at college (mag citrate and all... before they realized it was bad for my kidneys)... i posted that i was having a "treatment" that really sucked and i could use some words to brighten my day. within 2 hours, there were 65 jokes (most of them rather dirty, some of which i was too innocent to understand, but they made me feel loved anyhow) 27 prayer messages, and several personal messages sent to my inbox (yes, those were really the numbers. i felt so touched i recorded them in a word doc so i didn't lose them). i think that it's harder with people you know, but if you have a community of strangers, they are somehow more understanding. they don't see you suffering on a day to day basis (like family) and they don't know the old you (like friends) so they just accept you as you. i wish you all had better experiences with it, but i have an amazing online life. my parents actually get upset because i have more "online friends" than real ones... but i love it. i tell them that even when i'm sick as ever i can still socialize and feel, for even a brief moment, like i'm NORMAL! for a 21 year old, it makes all the difference in the world.
Posted 12/7/2011 2:01 AM (GMT -5)
Some r ******s lyk one of my frnd tagged me as patient in one of his pics....i rather text than social netwrkng cos i ve m closed ones dere
Posted 12/7/2011 9:17 AM (GMT -5)
I have had surgery and now have a J pouch. I am part of a really good group of J pouchers on Facebook (a private group so none of my other friends or family can see my posts about poop!) and they are such a great group of people and it's a wealth of information. I guess it's hit or miss with that sort of social networking.
Posted 12/7/2011 9:19 AM (GMT -5)
I agree with Marianne. We have a great group of supportive active and former UCers on the jpouch FB page. You are welcome to join if you want a more empathetic group of friends.

Sue
Posted 12/7/2011 9:40 AM (GMT -5)
I would never divulge something as personal as my medical condition in an open forum such as Facebook.
Nothing good can come from it and every creepy stalker in the FB world would have access to your most guarded information.
Posted 12/7/2011 10:29 AM (GMT -5)
I use healing well as a place to post my uc and kidney stuff and have not posted that on fbook except to share a link about kidneys once that I thougt relevant.

Fbook, I use for pure silliness, I have caught up with some old school friends and like to see how they have changed and love the pictures, it is a good way to keep in touch with people far away, my sister was in Korea for a while and a good place to share family pic's.
Posted 12/7/2011 10:30 AM (GMT -5)
Why is having Uc guarded information?
Posted 12/7/2011 6:17 PM (GMT -5)
Thansk sooo much for the posts. I surely was misusing Facebook. Live and learn! It was taking up so much of my time anyway!
Time to move on!
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