To tell or not to tell?

[kodles]

Hi again all!

Quick question....Sadie was at a birthday party today, and of course, I had a parent ask me about how Sadie was feeling. It's a perfectly normal, honest question. I wasn't really sure how to answer!!

Do you divulge the diagnosis? Do you just try to tell a few parents of the kids your child is closest to?

I don't want whispers going on about Sadie. I don't want to hear their pity. I don't want to hear the horror stories they have about someone the knew. (sorry if that sounds mean, but I'm still adjusting and it really doesn't help!)

Sometimes I believe people ask because they genuinely care, and other times I think it's more their curiosity.

So....do you tell, or do you not?? And Sadie asked me the other day what she should tell her friends....she said she doesn't want to tell them it's about her bum, because "that's disgusting". I told her that she can't be embarrassed, or ashamed, but that if she didn't feel comfortable talking about it with them, to tell them that she had stomach issues and leave it at that.

Keep in mind, she's only 6. Grade 1's are still fairly forgiving, but parents aren't really, and the kids are extremely curious little creatures!

Help!
L

 

[my little penguin]

A few Good friends ( parents ) we have told.
Then he gets the look plus we get the "Ibs" advice
He only tells some classmates he has tummy troubles and leaves it as that .
Family and school officials know .

 

[kodles]

Thanks!
That's what I thought too, just needed some reassurance!
The school knows (I had to tell them because she had missed so much school, but they've been great), family knows and she has 3 good friends and their parents know, but I've told them to just explain it as tummy troubles.
You just never know how to be "politically" proper anymore!

 

[Mehita]

My son was dx at age 8 and all the way up until this past winter he didn't want anyone to know. When he was younger we would just tell people who asked that he gets a lot of tummy aches and that sufficed. Now, at age 13, he openly tells people who ask that his "intestines are a disaster zone". Teen boy bluntness at its finest.

I did tell teachers and parents of his closest friends because we just never know when an emergency might come up or if DS might have a bathroom accident and need to confide in an adult for help. Sometimes it does take a village.

After being hospitalized twice this year and missing a ton of school, our whole (small) community basically knows and it's actually been a good thing. I think most people are simply concerned, especially with kids, and I haven't really ever sensed pity, but more of a "wish I could help" feeling. We turned that into a positive and have had a crazy number of donations for the CCFA Take Steps walk. We also had a ton of support when DS was in the hospital and seem to be the go to family for everything gastrointestinal!

I'd respect Sadie's wishes for privacy for now, but we've found that sharing has been a positive experience.

 

[Jmrogers4]

Jack was in 5th grade when he was diagnosed and did not want anybody to know, he had a really good friend who also happened to be our neighbor and she knew and basically covered for him with everyone else, she just told everyone he had really bad tummyaches but he would be fine. Teachers, family and really close friend knew.

In 6th grade he was very brave and asked his dad who also has crohn's to come to class with him and help him explain Crohn's. The kids were amazingly supportive except for one little br*t who thought it was funny to try and throw popcorn in Jack's mouth or try and move his chair into the bathroom. Luckily it was quickly taken care of and the other kids told him off.

I'm glad he told the kids in 6th grade it has been a big help in junior high especially at the start of the year or whenever there has been a sub, if he has to get up and leave they always pipe up - no he has Crohn's he is allowed to get up or he always go to the nurses at this time.

Like Mehita's son he is a very blunt teenager and talks to everybody about it. Tells them "It sucks, I have Crohn's but I still do what I want"

 

[DustyKat]

This is the order I tell people in:

School/teachers - full disclosure

Sports coaches - full disclosure

Close friends - they all know

Acquaintances - like the situation you were in. I just say they are doing well, or not so well, as the case may be and leave it at that unless there is a very specific reason they need to know and then it would be just for that.

My child - they were older so I left it to them and they either told their friends the whole deal or just said they have an abdominal problem.

Dusty. xxx

 

[upsetmom]

Only close family know. My daughter didn't want anyone to know .....no friends or teachers . I was constantly worried if something happened to her at school they had no idea about her medical condition. Then a few weeks ago she collapsed at school and i had no choice but to tell her teachers.

At her school students who have a medical condition apparently have a red dot next to their name at roll call. A few of her friends have asked whats wrong with her and she told them i have something wrong with my bowel and no more questions were asked.

 

[Farmwife]

More people know than I wanted.
It's kind of hard to keep it contained when your four year old walks up to church members
and says, I have a Mickey button so don't pull it out!!!:yfaint:

 

[DanceMom]

I'm still struggling with this as well. A's school knows, and her dance instructors, and of course family and close friends. But I'm just not at the place yet where I can make a general announcement and be okay with it. I'm not ready for the questions, comments, and well meaning advice just yet. Soon though.

 

[ChampsMom]

My son was 13 at diagnoses and I think I was more nervous to tell people (at first) than he was!

He was in the hospital the last 6 weeks of school (7th grade) and received countless visits from friends, teachers and coaches - so he was quick to divulge every thing he was going through.

Now he's 16, and I'm still amazed at how quick he is to admit it to new kids. He says it is his standard answer when they ask, "tell me something I don't know about you." Also, because he regularly has different food than they do, it breaks the ice on why he eats different.

Prior to Alex getting diagnosed I had only met one person who had Crohn's. Since, it has been *amazing* how many people we have met who knows someone, is related to someone who has Crohn's/UC and/or they have it themselves. I believe it has given him a sense of "I'm not that different." (though I keep telling him he's really weird... laughs... actually he's a super great kid! I'm blessed!!).

 

[QueenGothel]

Everybody knows and asks all the time. Friends of mine wanted to help so they had a fundraiser benefit so we could handle living at the hospital. It was a total godsend, but sometimes I wish people didnt ask, especially in front of her. I just stay positive all the time around her when answering. Yes, she is great. I don't give details anymore, unless it is my immediate family or you guys.

When we are at church, and the Preist sees us we always have to talk and thank people and give an update. It is kinda exhausting, I just want her to feel normal. Then everyone wants to talk to her and tell her how they prayed for her. Which is sweet but it just makes her introvert. She just wants to not be singled out. People are genuinely so happy to see her and I don't think she understands how seriously sick she really was. I don't want her to worry.