What to tell classmates?

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Livvie (10th grade) has just returned to school after 3 weeks. She told only her closest friends about Crohn's, but it seems everyone wants to know why she was gone, what is wrong with her. She has been asked multiple times if she had Ebola. Mostly she has been avoiding the questions or changing the subject because she doesn't feel like sharing this with everybody. She really doesn't want their attention or sympathy.

How did your kids handle these kinds of questions?
 
S was in grade 11 when he was diagnosed. He told anyone who asked that he had crohns. He was off school quite a bit at dx and, when he returned, was on exclusive EN (no foods), so pretty apparent his diet had changed. He was often asked why he couldn't eat and just told them he had crohns which meant his immune system attacked his intestines and made him sick. The reactions he received were, almost always, concern and support ; if it wasn't concern/support, it was an indifferent/non-event type response (ie 'oh, okay. Just wondered...').

When he moved to university and had new roommates, he didn't go out of his way to 'announce' he had crohns, however, he didn't avoid it either. As he still drinks Boost shakes every day and avoids certain things (ie seeds), when asked 'why', he again just gave the same answer.

If he's asked what crohns is, his explanation is that his immune system attacks his intestines and causes inflammation and that, when that happens, he can get really sick. If asked for more 'details', he's explains it's like having a really bad stomach flu but with pain and other complications and that it can get so bad that surgery might even be necessasry one day. Fairly basic :), but, I think by openly offering this info and that he talks about it very matter-of-factly, it takes away any mystery or impression that he's hiding something.

Also, what's really surprised us, is once he offers this info, how many people have shared that either they or a family member/friend of theirs has crohns/UC.

In our experience, S being open about crohns has not had any negative impact.

But, regardless of S's experience, I don't think anyone should feel that they are obligated to share anything they aren't comfortable with. There's nothing wrong with simply saying that she's developed sensitivities to certain foods and while medication will help control the illness, there will be times that she'll still not feel well. We know crohns/UC isn't a 'food' issue but, for the most part, teenagers will just be satisfied with an explanation.

:ghug:
 
My daughter (9) has always been very open and honest with her friends regarding her illness. The support she has received is amazing. She didn't want people quietly questioning what was wrong with her, assuming she could be contagious. We've instilled in her that her illness is a part of who she is, and a special part of her that she should be proud of. We don't ever want her to think it is something she needs to hide. I do realize that it is easier to convince a 4th grader of this than a 10th grader.
 
DS was 7 at dx so he didn't really understand or tell any one especially since he started talking about bloody BM and the other kids eyes almost popped out.
He doesn't tell any one now about crohn's but does tell them about arthritis
So that is all he is comfortable with .
Once he is older that may change since he is only 10 now.
 
My son was 10 at dx in 5th grade, he is now in 10th and the first year only a few really close friends knew and they would cover for him and just say his tummy was bothering him. 6th grade that changed and he stood up and told the entire class (they were the same kids from his 5th grade class). They were all really supportive. Now he is like Tess's son and just is very open about crohn's and while doesn't necessarily volunteer information if someone asks he tells them like when he misses a 1/2 day of school for his infusions and kids ask where were you he tells them I was getting my medicine to help control my crohn's, most don't ask farther then that but they ones that ask what is crohn's he says my immune system attacks my intestines and causes problems.
She should tell or not tell what ever she is comfortable with. My son if asked if he had ebola and didn't want to tell kids what was going on would probably say "Yes, and if you're not careful I'll lick you."
 
:lol: That sounds like such a boy response! :rof: I do think, sometimes boys and girls react differently. When S had the ng tube, he'd have friends stay over and lots of times they wanted to watch him insert the tube! I'd go upstairs and see 5 boys all cramming into the bathroom to watch! :eek:

But, kids (and maybe boy/girl??) react differently. When S was in the hospital, his girlfriend was letting school friends know how he was doing and my daughter, unaware that S had pretty much broadcast his dx over facebook, became very upset with his girlfriend for telling people about his dx, saying that it was private. Daughter's totally fine with it now, perhaps because she also needed the time to understand and adjust to his dx and also perhaps because she's seen that S doesn't see it as something to not talk about.
 
She has been asked multiple times if she had Ebola. Mostly she has been avoiding the questions or changing the subject because she doesn't feel like sharing this with everybody. She really doesn't want their attention or sympathy.

I think rather than avoiding questions or changing the subject, she should be armed with some sort of response. Rumors can start so easily and the more she avoids answering people's questions, the more rumors can start and I'd hate for her to have to deal with that. If she doesn't want to say it's Crohn's disease....maybe she can just say something like, "I was out of school because I have a disorder of my digestive system." Or, "I had inflammation in my digestive tract that needed to get under control."
 
Love that Jmrogers4, Jack is hilarious!

My daughter is also fairly open about her arthritis but not so much about her Crohn's. She just say she has an autoimmune disease, so her immune system is attacking her joints and sometimes, she adds that it also attacks her GI tract. She leaves it at that, and manages to get out of questions kids ask.

Now that she is older, kids are much more sensitive and understanding. Her close friends are incredibly supportive. Middle school (and even early high school) was much harder - her friends had trouble understanding why she didn't feel well enough to do "normal" things - like sleepovers etc. Being open about it eventually made the situation better.

Seeing a psychologist has really helped her deal with stuff like this.
I hope Livvie starts feeling better SOON!
 
Thank you all very much. She is feeling better already than she has felt in months after a few days on prednisone. She isn't embarrassed but she has always been a private person in general and does not like to be the focus of attention. She doesn't want sympathy, support and understanding, she just wants everyone to treat her the same as always.
 
Sarah is very extroverted and so had no issue with telling anyone who asked what was wrong with her, she was in Year 9 when diagnosed. Mind you we live in a small country town so just about everyone at her school knew what she had before she went back there after her diagnosis as most friends visited her in hospital as did her teachers. I was interested to see what she would do when she moved away to university and had no overt signs that anything was amiss. She carried forward with the same openness she has always had and told new friends she had Crohn’s. It was actually an advantage for her in many ways as it allowed her to pursue a position as the Disability Officer on the SRC at the university and to sit on a number of political committees as a disability representative. The other advantage for her personally was she made friends with students who were studying nutrition so she received advice from that quarter and the university also has a very high international student attendance. Many of those international students are Chinese, some of whom practice Chinese medicine, so she started using herbal supplements via teas and continues to do so.

My son, on the other hand, is very introverted and private. I guess Sarah paved the way for him at school so explanations weren’t required but I know he too would have been uncomfortable with unwanted attention and questions. I know in situations where he was asked he would say he had been through a bad gastrointestinal problem that required surgery but he was fine now. He will never be like Sarah and I dare say will only ever tell people as much as he feels they need to know and nothing more.

I hope the need for others to ask questions soon passes by and your lass is comfortable in her school surroundings, bless her. :heart:

Dusty. xxx
 
My son has always been very vague. I've noticed that his classmates were glad he is back and didn't really seem to need details. So he didn't give any. I don't think he wants too many to know. If directly asked he was pretty good at giving a simple quick answer. (If parents asked me I would say he had crohns and then always say he inherited it from his dad's side. - So they knew it wasn't contagious. When my husband's sister first was diagnosed and I was DUMB about all this (and I didn't take time to google it because I had never heard of it and no one in my family had it...yet :(-Brian wasn't even born then), I would pay more attention when my other kids were at her house to keep their hands extra clean.-- How dumb I was!!! So now I remember that --so I can make sure someone doesn't think my son has something they can catch and exclude him or not let him come over, etc.) I'm also an over thinker now... This disease has changed me in many ways. Some are good and some not so good!! :)
Also, this past summer my son went swimming with several boys. It was at night and he wore a swim shirt because of his ileostomy. He knew (and worried) that one of the boys would ask, "Why are you wearing a swim shirt at night?" So I told him to say back; "Why do you care?" Well, sure enough... a kid asked that very question. He gave the answer I suggested and that was the end of it. At this point my son really wants to keep it private. I told my son, You don't owe anyone anything. Tell what you want to tell. And beyond that... its really no one's business. :)

I also have had the experience that many others have a relative/friend/coworker that have crohn's too. But it always seems to be an adult. Except for on here... I've only had someone say they know another kid that has it twice. (But we live in a small town too)
 
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My dd is only 5 but seems to think nothing of it. She's a very open book kinda girl.:yfaint:
My boy (non-IBDer) would be way more shy as its is personality.
 
I think the teacher can be really helpful in this. My teacher was amazing for me, I was super nervous going back to class and to see the response of why I had been gone for months.

When I went finally back to class, my titularis (it's like, main teacher in English I guess) said to the class

"Welcome back, everyone is happy you're well again. If Kiny wants to talk why she was sick, is up to Kiny, if she wants to talk about it, she will do so when she's ready."


She winked at me and she immediately proceeded with the class. I never had anyone bother me about my disease, I never had anyone ask me about it, they all were pleased I was back.

There was another person who got sick, she did the same thing for him, she let everyone know that it's not ok to ask people about why they were sick, instead she told everyone to be supportive and to give them time and the choice to talk about it.
 
King,
That is a really amazing teacher you had!
My daughter was always very open with her classmates about her illness. She never hid it and a lot of kids came to visit when she was in the hospital. Her classmates were always very supportive.
 
I wanted to add.. Its not that my son is embarrassed or that he doesn't feel supported. He just chooses to share as little as possible. :) My son said, "Most Kids my age wouldn't understand all that has happened to me or about inflammation damage, etc" When he went to school with the NG tube, many boys were curious. Some thought it was cool, and others would say "Is that going into your stomach?". When my son would say "Yes" some would say "GROSS!!". Others would want to see it going down his throat.But then there were "EWWWS" and "AWESOME" comments! I think girls might handle the whole thing better. It can be a different thing with boys. So there is no way he's going to share anything about his ileostomy. He said he can already imagine the comments and reactions. ("You poop in a bag?! Ewww!) He knows he's had to mature quickly and experience things most kids can't even imagine. Like your daughter... he doesn't want the attention on this subject. So I follow his lead. I think it helps him feel 'normal' and like the other kids. He has a lot of friends and so it's all working out.

Kiny, that is a wonderful teacher! What a great way to explain it to kids.
 
As I've explained to my daughter, we all have something that makes us different and sets us apart. Some of those differences are visible, others are not. I pointed out to her that she has a good friend with ADHD that struggles academically. Another good friend that was adopted from China and is struggling with the fact that she looks different. A friend whose parents are separated and she rarely sees her dad. The term "normal" probably doesn't apply to any of us and that's okay. She really seemed to embrace that type of thinking and it has helped her not to develop resentment about her illness. We all have struggles, and how we deal with those struggles is what matters.
 
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