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Crohn's Disease Forum » Support Forum » Letting people know you're sick?


08-26-2012, 02:29 PM   #1
Hobbes650
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Letting people know you're sick?

This is really a general question. Why is it that some people believe you should never let anyone know you're sick? I'm not saying it's good to be an open book by any means. But I find myself, that it's good to have a few close that know. I was originally diagnoses with UC at 18 years old. My father was a doctor of internal medicine and had been practicing for over 20 years so he was well known. In our family, it was pretty much not allowed to be sick, and I've heard that from children of other doctors who have the same experience. Basically, anytime you were sick dad would say it's nothing and to just get on with your life. Even when dad developed his cancer, he didn't tell anyone (not even his wife) for over a year, until it became too difficult to hide. Just thought I'd ask to see what people think. I will never understand why some people feel the need to be so secretive about things so important. Maybe it's just some odd trait seen more among doctors? Seems acting like this only makes things worse for everyone so I've never understood the rationale.
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Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

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08-26-2012, 02:42 PM   #2
partyboy690
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I agree, I'm pretty open about my disease. I don't tell everyone I see. But my workmates and friends know. It was kinda hard to hide to workmates but I still tell them because I don't mind. I'd like to normalise this disease and get everyone talking about it like they would diabetes.
08-26-2012, 02:50 PM   #3
Hobbes650
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I think Diabetes is very good analogy. Both illnesses have major lifestyle changes, and can be deadly. I know people who wear a pump for their diabetes and as an ileostomy pouch wearer, we have a certain unspoken understanding. Maybe one day IBD can be discussed as maturely as Diabetes, but IBD is not as common so that's probably why it doesn't happen.

Last edited by Hobbes650; 08-26-2012 at 06:27 PM.
08-26-2012, 02:54 PM   #4
partyboy690
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Also with where IBD affects nobody wants to talk about it, who wants to hear about bloody stools and vomiting. I think part of the reason IBD's are not as spoken about and stigmatised is because of the fear and embarassment from your peers. I'm not embarassed at all to talk about it.
08-26-2012, 05:24 PM   #5
EthanPSU
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Only about 4 people in my life (besides family) know about it. The reason I keep it under wraps is because I don't want anyone to feel pity for me or think of me differently. I do not want to be treated any differently from anyone else so I don't tell anyone. It's harder, but in my mind it's worth it.
08-26-2012, 08:51 PM   #6
upsetmom
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My daughter doesn't want any of her friends or teachers to know she has this disease. I've been thinking of letting her teachers know without her permission.
08-26-2012, 09:02 PM   #7
EthanPSU
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My daughter doesn't want any of her friends or teachers to know she has this disease. I've been thinking of letting her teachers know without her permission.
Don't do that
08-26-2012, 10:54 PM   #8
upsetmom
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Ethan
Why not ? it would explain all her absences.
I wouldn't want her to repeat.
08-26-2012, 11:00 PM   #9
Hobbes650
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Teachers should know, but best to get your daughter on board first and tell them together. Things like this are held in strict confidence and teachers really need to make your daughter feel they understand that. Anything done without your daughters permission is going to cause way too much stress in your relationship for one. Also, with IBD trying to avoid these kinds of extra stressful situations will help her recovery. Stress may not be the cause of IBD, but many people will say that periods of excess stress can bring about a flare up. Good luck with this one as it's tricky.

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08-26-2012, 11:04 PM   #10
EthanPSU
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Ethan
Why not ? it would explain all her absences.
I wouldn't want her to repeat.
I mean telling behind her back. Its fine if she's ok with it but for sure if you do it behind he back and she finds out there will be some drama
08-26-2012, 11:05 PM   #11
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I have told all my friends, even posted about it on the local car club message board that I am in.
No one treated me differently but they do understand and have been a big help at times when I was hurting.
I guess I'm lucky that my good friends understand.
I have even meet other people that have Crohn's just because I was talking to someone that I knew about it.


Ethan
Why not ? it would explain all her absences.
I wouldn't want her to repeat.
Might be better to talk to her about it first, trust is a hard thing to earn and so easy to louse.
08-26-2012, 11:08 PM   #12
upsetmom
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I've discussed this so many times with my daughter and even the doctors have said to let the school know but she like Ethan wants to be treated normal and doesn't want sympathy. Sport is probably her biggest problem she gets tired very easy and always makes some excuse to get out of it.
08-26-2012, 11:18 PM   #13
Hobbes650
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I've discussed this so many times with my daughter and even the doctors have said to let the school know but she like Ethan wants to be treated normal and doesn't want sympathy. Sport is probably her biggest problem she gets tired very easy and always makes some excuse to get out of it.

Consider this: if she has been absent a lot, then it would be perfectly normal for the school to want to know the reason- that's part of their job. Perhaps talk with whomever is in charge first and see what they recommend. It might certainly be possible to have a "doctor's note" on file without having teachers know anything specific. I'm sure the school has some procedures related to privacy and if you and your daughter know what these are, it may help your daughter feel better. I've missed lots of work, and I certainly didn't want people knowing the details- and they don't need to unless I allow it. My employer and I worked things so I could do some work at home and not be forced to take any kind of medical leave. Stuff like that exists at schools I'm sure too.
08-26-2012, 11:35 PM   #14
Jennifer
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Upsetmom if she's under 18 then its your responsibility to let the school know (to at least explain absences etc). My mom didn't even discuss the issue with me, just let me know that my teachers and the school knew just in case and that if I wanted the students to know then either I or my teacher could inform the class. I decided against telling any students cause kids are mean but I didn't mind the teachers knowing. I never got treated like I wasn't "normal" or anything like that. The teachers just told me that if I felt up to PE, then go for it but if not, no harm done. I was never treated different in class though. Sorry, minors don't really have a say when it comes to this sort of thing but they should be allowed to have a say when it comes to the students knowing. Sure she might be upset at first but she'll forget about it. I doubt it would ruin your relationship.

As for why people don't say anything and keep it to themselves, my fiance does that. I have to practically force information out of him and even then I'm getting the info from a week to a year or mote later. That's not being honest and open. I know in his mind he thinks its nothing or there's nothing he can do about it anyway so why worry or make others worry when he knows he's not gonna do crap about it? Its annoying as hell!
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
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Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
08-26-2012, 11:53 PM   #15
PattyLynn
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Teachers should know, but best to get your daughter on board first and tell them together. Things like this are held in strict confidence and teachers really need to make your daughter feel they understand that.
Don't count on it! I work in a school and teachers definitely gossip in the staff room. If you do get your daughter's permission, and ONLY with her permission, you should go straight to the principal of the school. The principal should be very professional and he/she will keep the information confidential. The principal will also be able to deal with the teachers' inquiries without going into specifics about your daughters condition. I've had Crohn's since 1991 and a stoma since 2000 and very few people know about it. Just last week I finally told my principal (I've worked with her for 6 years) only because I've been quite ill lately and if something happens while I am at school and they need to call an ambulance, I thought it best that she knows what to tell the paramedics (quietly, of course, so no one else can hear!)

I do think it is important that your daughter's school principal is told but your daughter must be assured that it will go no farther than that.

Good luck - this is a tough one.
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08-26-2012, 11:59 PM   #16
Jennifer
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In elementary school my teacher and principal were told but Jr. High and High school, only the principal was told. I told some of the teachers myself since they never asked anyone and simply gave me bad grades and detention for missing school. That's why the teachers should know in my opinion since there are too many students and the principal doesn't go out of their way to check on how said student is doing.
08-27-2012, 12:01 AM   #17
PattyLynn
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Crabby, you are right. I was talking about elementary school but I can see how it would be quite different in high school. I just assumed UpsetMom's daughter was in elementary. Sorry for the confusion.
08-27-2012, 06:11 AM   #18
KazT17
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Upsetmom, can't you tell the school that she has a health condition, explain it is not contagious but can make her very tired and unwell. They don't need to know what. Maybe your daughter would agree to this. Tell her the school needs to know something for insurance purposes.

I have worked in a school and confidential info is too accessible to staff and I agree that staff do gossip too.

Kaz xxx
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08-27-2012, 06:58 AM   #19
upsetmom
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Today i mentioned it again and she said don't even think about it. So for now i'll respect her wishes but if she starts to get sick again and have a lot of time off then i won't have a choice. I'll have to do whats best for her as she is only 15
08-27-2012, 07:35 AM   #20
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The school knew about both of my kids upsetmom. Mind you it's pretty hard not to in a small town and many of the teachers came a visited and/or phoned when they were in hospital.

I actually had a meeting with the Principal and all the teachers involved with my children at the time and laid everything on the line...what my kids dealt with on a daily basis and what I expected from the school.

I fully understand where your daughter is coming from and her need to treated no differently. I hope she can come to the understanding that informing the school is not about sympathy but mutual respect. My children were not treated any differently when it came to most daily activities and I would not expect them to be but the school had a right to know about their medical condition, medications they were taking and what to expect both on a daily basis and should an emergency ever arise. In return I expected that they would have access to toilet facilities whenever it was needed, they would be allowed to leave the school when they wished via the front office, explained absences would not be questioned and they would deal with the department, they would contact me if they had any concerns.

Good luck hun. Should the need arise to tell them I would tackle from the perspective of the school having a duty of care to her so they need to be informed.

Dusty. xxx
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08-27-2012, 07:44 AM   #21
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Those close to me know about it but I don't tell everyone in my life. It's most certainly NOT because I'm embarrassed. I don't tell people because I don't want to know everyone's medical issues and assume they don't want to know about mine. I do not want to be treated any differently. I don't just do this with Crohn's either. I had a hysterectomy three weeks ago and didn't tell my sister in law. She sent me a nasty message asking why I tried to keep it so quiet. I told her that I didn't try to keep it quiet at all, I simply didn't think that it was a big deal. She, on the other hand, sends out a mass email if she gets a friggin hangnail. I don't want to be one of those people.
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08-27-2012, 08:40 AM   #22
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I used to keep it very quiet - until last year.
I got very sick - in and out of hospital 9 times in less than 12 months.
Now - I tell anybody and everybody. I can't hide it and I don't want to.

Part of not telling people was not wanting people to know I was unwell - for some reason - it made me feel weak and feeble. I also worried that I woud be discriminated against by employers etc.
Since telling people and being very open about it - I have received amazing support from my employers, colleagues and friends. I also feel like I am increasing people's awareness of CD and stomas. This has been really helpful when providing support for one of our students with anxiety as a consequence of his CD.
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08-27-2012, 01:25 PM   #23
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Today i mentioned it again and she said don't even think about it. So for now i'll respect her wishes but if she starts to get sick again and have a lot of time off then i won't have a choice. I'll have to do whats best for her as she is only 15
I think this is the best way to approach it as long as she is well. I was the same in high school with not wanting people to know so I wouldn't be treated differently etc, which was fine until I got sick and had teachers on my back about absences and coming in late.
My mum took a pamphlet on crohn's in to my home room teacher (think it may have been one specifically for schools/teachers) and had a short chat with her one day after speaking to me about it. I was then given more leniency and allowed to leave the room whenever I had to for the bathroom/water/a break/lie down in the office if I needed it etc without being questioned (my home room teacher had a meeting with and passed the info on to my subject teachers, principal and nurse).
It really did help having my teachers aware of the situation. Maybe you could try and find a pamphlet or some basic info in case your daughter gets sick and try that approach.
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