Social Media- How much to share?

[Farmwife]

Well I've joined the modern age and set up a social media page
(yes country girls can do that:wink.

I was tempted to share a little bit about Grace's struggles
but didn't out of fear of people feeling sorry for her or us,
offering unwanted advice or just being to nosey.
Most my close family know something is going on but we haven't shared it with anyone beyond that.
I'm sure they've heard (my mother and MIL) but have never asked.

What has been your experience with social media and peoples responses?

 

[my little penguin]

Our rule of thumb
If it's not something you would say to a total stranger loudly in a grocery store AND feel comfortable afterwards .
Then we don't share "it" out there .

 

[DustyKat]

What exact social media outlet are you speaking Fw?

Dusty.

 

[Farmwife]

Sorry Dusty, it's like FaceBook, Twitter or Instagram.................

 

[crohnsinct]

Pretty much with MLP here. Plus I don't really have time for facebook.

When it comes to my kids, I don't share anything on social media..well except for here. But my girls are older and want their privacy and I have to respect that.

I know that retelling the story to each loved one who asks could be painful at times...reliving the disappointing facts etc. They do have Care Pages set up specifically for this purpose. People have to subscribe and get passwords etc. I really don't know if that is much more secure than facebook though.

Quick story about facebook...my daughter applied to a college. She has an alias on facebook and twitter...well I'll be darned the college searched and found her and accessed her posts, pics etc! Luckily she didn't have anything questionable on there and she was accepted but just goes to show anyone can find anyone so.....

 

[DJW]

You could look at setting up a closed group requiring the group owner to add people to the group. I'm part of a fb group set up like that but have never done it.
You could also set up a closed blog. Check wordpress

 

[Clash]

I've shared some on FB, a pic of C and J hanging out in C's hospital bed. When C has struggled , stressed and fought against his CD to accomplish something. But that's about it and always with his blessing since it is his disease/journey.

Since my posts haven't necessarily been ones that warrant comments about "have you tried this" or "you should read this" responses those haven't been a problem. Although, I did have one high school friend that offered to connect me with two of his friends that are living with CD and have reached remission with remicade.

I did happen to get a pm from someone my husband grew up with that I've never met but is on my friends list. She has started selling essential oils and came across a post where one of the testimonials was by someone who claimed the oils "cured" their CD. I politely responded that C would probably not respond well but thank you for thinking of us.

 

[Clash]

I was going to say the same, you could start a closed group with your close fan and friends on fb and share the info you wanted them to know.

 

[DustyKat]

I have a twitter and fb account.

Twitter is limited as to what you can do with settings but Fb is easier to control/limit in regard to who sees what you post on your wall and who accept as a friend. I have my account locked down to friends only, the only thing you need to watch is what you say when you post on someone else’s wall if you are concerned about privacy. Some groups/pages only allow you to post publicly.

I haven’t had any issues with it and neither have the kids but I don’t think they utilise Fb much. Everything seems to be done via kik or messenger.

Dusty. xxx

 

[crohnsinct]

HA! Yeah that Dusty! All us rents catch on to facebook and the kids move on to the next great thing. Cracks me up!

 

[Kev]

When I suffered a relapse this past May, I tried a social experiment on social media (why it isn't called anti-social media escapes me). Anyway, on my Facebook page I posted my daily experiences with this latest round of the disease. Long story short, a big failure. My goal was to give folks without IBD a typical day in the life of... limited to family, friends or online acquaintances only. Anyway, it resulted in an online fight, and the loss of a close friend. And it never accomplished my goal of raising public awareness for IBD. So, I deleted all my posts... despite many acquaintances with IBD asking me to keep it going.

 

[DanceMom]

A is pretty open about her illness because we've tried to instill in her that it isn't something to be ashamed of. She wanted people to know that she wasn't contagious and she wasn't dying, so she is fine with people knowing about CVID and asking questions. Her friends have been very supportive and her determination and dedication have really been a good role model for others. At her birthday party today her friends found her therapeutic play infusion kit and they all wanted her to give them infusions, lol. These are 10-14 year olds! Lol

What to share is very much a personal decision. A is not easily embarrassed but some kids are and that's okay. Grace is probably old enough that you can start talking with her to see what she's comfortable with and how she wants to handle things. Our kids are wise beyond their years.

 

[Catherine]

I have a Facebook account and 3 children with accounts. Actually make that two young adults and a teenager.

Sarah did tell her good friends about her dx using Facebook but her used the private messaging function and has never posted anything about it on her wall.

Our rule is only post something on Facebook if your happy for your grandma to see it. Nothing on Facebook is private.

I am facebook friend with my boss, so I am very carefully what I post.

 

[MamaHenn]

Our family knows about ds and some close friends. I don't post about it on my main FB wall but will on occasion mention it on my closed FB group of mommy friends. Although I M not the type to post my every move on FB. I do have a friend that has health issues as do her children and I feel like that is all she posts about and it can be somewhat uncomfortable at times. I often don't know what to say, so I just say nothing.

 

[Optimistic]

Hi. I'm associated with a field that monitors our social media presence. We are given one guiding principle - are you ok with what you posted being public and permanent? If so, we are told, post ahead!

In my situation as a parent, I think I personally have the added burden of considering whether my son would be ok with it being public and permanent too.

 

[Jmrogers4]

^^That's pretty much our rule even though we have all our settings set to friends only. I only post if I don't care if the whole world sees so on occasion I will post something about Crohn's but we've never kept it hidden.

 

[Brian'sMom]

I rarely post anything on FB.. but last summer I posted a few pictures of our group at the Crohn's walk. I thought it'd be ok because it didn't really have my son stand out in them. But then I got a few posts on the pictures from this lady in my small town asking "What this walk was for" then she posted "Does Brian have Crohn's ? And "My daughter knew something was wrong when he missed so much school last year" etc. I left the group pictures of our walk but deleted the posts from that lady and now I don't put anything on there anymore about my son. He likes his privacy and is very closed mouth about his disease. It's not that he's embarrassed. He just doesn't want any questions from random kids at school. Especially since he got the ileostomy. I wish he'd be more open.. but It's his story to tell.

 

[Farmwife]

Thanks everyone.
I still don't know what I what to do but it's helpful to hear you're advice and stories.

 

[tonimacaroni]

I share a lot about my life with IBD (thought it was IBS!) on my fb and instagram. Mostly because I think it helps my friends understand more about why I'm not around much. I've shared the spoon theory and some information about Crohn's disease, and pictures of my blood transfusion cuz I thought it was cool. Anyway, I have had good response and tons of support. But that is for me, not my child. I dunno how I'd feel if my mom had shared my struggles when I started on this journey as a teenager.

 

[Sascot]

I have Facebook but don't share anything about Andrew. This is mainly because he is one of my "friends" on Facebook so his friends could see what I write!

 

[Mehita]

Well, pretty much everyone in the world knows DS has Crohn's and Celiac so he doesn't give a hoot what I share about him, though I do generally keep it vague.

To social media's credit, that's how our family has raised awareness about living with Crohn's (infusion pics, hospital stays, etc) and how we've generated most of our fundraising for the Take Steps walk. DS tells his story and posts it. It was my suggestion, but he wholeheartedly went for it. He says Crohns is part of his package - take it or leave it.

I don't usually tag him in FB or Instagram just because I've lost track of who he's friends with and don't want to scare off potential girlfriends! But again, most everyone in our small town knows anyway...

... and there was no real way to hide a Make-a-Wish trip to Australia. All four of us were posting pics of the amazing experience. How often do you get to feed kangaroos??

I think you just have to go with what you're comfortable with.

 

[alex_chris]

I wouldn't share anything about my Crohn's on social media. I have told close friends and my family knows, but that is it.

 

[R20]

Hi. I was 15 when I had my ileostomy. I chose not to tell anyone at all apart from my best mate. Obviously my family knew as well. It's stayed that way ever since and is possible. I didn't want to be known as the guy with the bag. Also I never wanted crohns or the bag to be an excuse for anything so by keeping it secret, it kind of forced me to carry on a normal life

 

[Jenn]

I don't post details but I also keep a tight list of who actually sees anything. In general, we are open about my son's Crohn's, for general awareness and just matter of fact.