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Crohn's Disease
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Posted 9/13/2007 6:51 PM (GMT 0)
I was Dx 3 years ago.  Within my office I've told 6 people.  My BOSS and my 5 best friends.  I told all 6 of them I did NOT want them mentioning it to anyone else.  I did not want people to know because for ONE its not their business and for TWO, I don't want people to always look at me and think of BMs!!!

This morning I had a flare so by the time I finally got to work, I felt crappy.  Everyone was going to lunch later but I declined.  But by the time lunch rolled around I was feeling a little better and went with everyone including my 5 best friends PLUS some other people.

I only ate a potato and because of that, someone made a comment about how I wasn't eating and then ANOTHER person who I've never mentioned I had CD to says, "Yeah, aren't you on a fairly restricted diet?"  It threw me off so bad because I knew at that moment she was aware of my CD although I'd never told her.  Then it made me wonder who she heard it from.  Did EVERYONE at the table now know?  Did my boss tell her or did one of my best friends???  It's frustrating when you specifically ask someone NOT to tell anyone else a PRIVATE piece of information to you.  Why can't people keep SOME secrets?  This is why I keep to myself.  I feel like I can't trust anyone.

I'm wondering if anyone else around here has kept their CD a secret?  Seems stupid for me to do so, now, since I now think more people know about it that I thought!!! mad

 

Posted 9/13/2007 7:16 PM (GMT 0)
From my point of veiw I feel it's actually better if everyone know, heck I even tell strangers, like a new hairdresser so that if I have to go while getting my hair done they totally understand rather then assume I'm doing something eles like throwing up my food or something (being anorexic), so although it can feel natural to not want many or certain people to know, believe me, it's better than rumours going around about you...just my personal point of view.

Besides which, for the most part I think it's human nature to blab secrets, especially other people's secrets rather than our own, LOL!

:)
Posted 9/13/2007 7:25 PM (GMT 0)
Hi Kittikat, I know how you feel but I had the opposite problem. When I was in the hospital last year, all but my closest friends and co-workers thought it was because I has having gastric-bypass surgery. I was quite heavy at the time. When I recovered from my resection I started working out like you wouldn't believe. Join the YMCA and have been going every other day. It had taken me all year but I have lost almost 60lbs and have only 40 more. Someone mentioned to me that they guessed the by-pass surgery was a good thing for me. I nearly hit the floor. It kind of pissed me off because I was made to feel like all my hard work was nothing. Lost my weight from medical intervention instead of a good healthy diet and lots and lots of exercise.
Posted 9/13/2007 7:25 PM (GMT 0)
I've always told people I work with and in other settings if and when it is a logical thing to do. For example, people at work need to know if we are in the bathroom a lot or off work. Families need to know. So may some social acquaintances -- for example, if they want to go out for Mexican food and we need to tell them why we can't eat hot sauce. That doesn't mean get a personalized license plate that says "Crohnie" but it also means that there is no real reason to conceal the fact that we have a medical condition. Most folks these days know there is something called Crohn's disease . . . when I have mentioned it to people, they have usually said something like "Oh yeah, I have an aunt with that." It's not like telling people you have syphillis or anything . . . and it can open up opportunties to educate some folks abuot it.

Posted 9/13/2007 7:29 PM (GMT 0)
Hi Kittikat, I am sorry that someone betrayed your trust and told your secret. Please know that like pb4 said, it is human nature to tell (everybody likes to hear the latest news), this is even more so when you made sure you tell people to keep it a secret. You could bet your bottom dollar that your secret will be everyone's secret with of course the restriction to make sure they also keep it a secret. It goes like this: I will tell you a secret about so and so, but you have to promise that you will not tell anyone about this! I always tell my children that when they or someone tells me not to worry about something, I usually do start to worry!!! Sorry about you getting your feelings hurt in all this. Keep well, stay positive and remember: You know who your friends are when you are in need and a friend who cannot be there for you when you're in need, is a friend you don't need!
Posted 9/13/2007 7:31 PM (GMT 0)
I used to guard my privacy religiously. Then one day my doctor asked me to meet him in outpatients after I called about a nagging pain in my hip. I walked out of the office telling the office manager I'd be a couple of hours and didn't return for six months. Because of the public nature of my job, I was a journalist at a small town newspaper, by the time i returned pretty much everyone knew something was wrong with me. I've since done a lot of thinking about why it was so important not to let anyone know, and I reallized that, for me, it was a case of feeding my denial. As long as no one knew, I could convince myself I wasn't that sick.

There is a lot of embarrassment associated with this disease, but I've found that things are a lot easier now that I'm relaxed about it. It isn't something I announce when I meet someone, but I don't actively hide it either. If I'm in a social situation, eating and someone comments on my peculiar dietary choices i will explain without going into detail, that I have a bowel disease and have to avoid this or that.

As far as secrets are concerned, It is disappointing, but not surprising. I guess when it comes to trust it depends upon the relationship. I wouldn't trust anyone at work to keep a secret, but i would be devastated if my husband or my dearest friends betrayed a secret.

I think the big thing here though is, why do you want to keep it a secret, and from whom.
Posted 9/13/2007 7:42 PM (GMT 0)
I should have added to my first reply that not keeping it a secret brings more awareness out there and afterall, that is often a big complaint amongst us IBDers.... dealing with social situations and not enough public understanding and awareness.

:)
Posted 9/13/2007 7:53 PM (GMT 0)
Kit- Im in class so I couldn't read the other responses but I just wanted to add that just because someone knew you had a restricted diet doesn't mean that they know you have CD. People are very observant. If you hardly ever eat at work or ask questions of the chef's in your cafeteria, or request special food at a resturant, people notice.

I do not keep my CD a secret so I can not totally relate but I wouldn't to make you feel a little better that just because they know your food tendancies doesn't mean they know you have CD.
Posted 9/13/2007 8:13 PM (GMT 0)
Like Fitzy...I was thinking the person just noticed that you ate only selected foods all of the time and came to that conclusion. It could be no one has said anything to her. If you really want to keep it a secret, I would not ask this person if she knows.

I stopped keeping my CD a secret many years ago when I found such an enormous relief from people knowing. It was like letting loose with a big sigh. Granted, I do not tell all of my co-workers becuase it is none of their business. But, if they find out, I will just educate them. My friends all know---many of them actually understand, others just know the words and are still confused what CD really means. Hey people tell others when they have cancer, MS, or many other diseases. Why can't I tell about CD?
Posted 9/13/2007 8:31 PM (GMT 0)
I am with PB4, I tell anyone that wants to know and some who don't. I have found over the years this to be a good thing for them and for me. It is very theraputic to talk about it and sometimes it helps others to admit something is wrong and seek out help. I also know that when I don't feel well people are a lot more understanding and that makes things easier on me. I am a workaholic so I push my self really hard and when I cannot push anymore they understand and they are normally trying to get me to stop pushing way before I am.

I know you feel your trust was broken, but someone could have asked why you did not act like you felt well and someone else could have tried to releive their worries. It could have been a lot of things.
Posted 9/13/2007 8:52 PM (GMT 0)
I agree with all of the above. I too do not keep it a secret. I prefer to educate people about the disease so they don't think I am anorexic or something else. I explain much in the same manner as the others have said. I have a co-worker who also has the disease. In fact today we were laughing about how some of the strangest things make us sick. He had a rice crispie treat for the first time in a longtime and it really gave him grief. But I do understand the dissapointment when a friend doesn't keep a secret.
Posted 9/13/2007 8:56 PM (GMT 0)
Hi Cd is hard to keep hidden forever people probably will figure out something is wrong.As long as it's not them I am guessing most people can handle it. I would rather know then not if I had a friend with CD or else I might be thinking some strange thoughts . Cd is nothing to be ashamed of and needs understanding and communciation like other things. Hope your not feeling too betrayed and I am proud that you were able to tell your friends I am sure it will get you some understanding at times which you derserve. I am not one to worry about poop or anything else that might run threw people's heads but at one time I might have. lol gail
Posted 9/14/2007 12:08 AM (GMT 0)
I personally tell people when I feel it's appropriate. When I started my previous job, I told everyone on the first day, and it turns out that our trainer knew a couple people with Crohn's, and actually asked me if I was on Remicade. Needless to say, I was a bit stunned that someone knew exactly what Crohn's was, let alone that she knew about the medications. I haven't told the people at my current job yet, but just because there hasn't been a good time, and it hasn't been necessary yet. I just moved into the dorms at college, and when we had a floor meeting, we had to tell a bit about ourselves, so I mentioned that I have Crohn's. Nobody really knew what it was, so I explained a little about what it means for me. And, it turned out that another girl on my floor has family with Crohn's as well. I look at it as an opportunity to educate people about the disease.

On the other hand, if one of your confidants really did spill to another co-worker, I do think that is wrong, and I understand the fact that you would be upset about that. But, hey, what's done is done, take it as an opportunity if this co-worker did end up finding out that you have Crohn's.
Posted 9/14/2007 12:34 AM (GMT 0)
I also choose to tell people about it. I had not called off work for 6 years and people began to wonder when I did. So I to it as opportunity to let them know about it, unfortunatley my GM seems to think Im exaggerating it all. But what can I do?
Posted 9/14/2007 1:55 AM (GMT 0)
I have found that by telling people you not only have a chance to educate them, but you also have an opportunity to be a support to others. I work for a large school system as an administrator, and have beeen able to feel really helpful when people have come to me to tell me that they or their son or daughter or friend was just diagnosed with CD and did I have any information or words of wisdom. People have expressed relief and gratitude to know they were not alone. Helping in that way makes me feel less helpless and less sorry for myself because I am heling others. If I kept my CD a secret, I could not reach out to others.
Posted 9/14/2007 2:27 AM (GMT 0)
Kittkatt, I understand your feelings. I've been in remission since I've been at my current job. One co-worker knew me when I was first sick, so he knows all about my CD. I never intended to tell anyone in the office until I needed to but he spilled it. Actually, my eating habits outed me w/his help. I was offered something I couldn't eat and in front of a large group and he told them that I couldn't eat it, which lead to the inevitable why can't you eat it, are you allergic...

I find I cannt keep this a secret from any person I eat with. I've had people catch on just from the fact that I don't eat popcorn. If the person knows about the disease they will catch on to your eating habits.

Sorry someone let the cat out of the bag (or the coworker guessed). I understand the frustration of having others know about your illness when it really isn't their business ant they don't need to know. Like others said, sometimes it is better though. I just went to a luncheon where people didn't know about my CD and half were offended because I did not try the food they made and others though I was anorexic. You can't always win on this one.
Posted 9/14/2007 3:29 AM (GMT 0)
KK,,where I come from if you tell just two people to keep something to themselves in a week the whole world knows. In fact we had certain coworkers we called,( the pipe line.)..If you wanted something known, just tell one of them and say its a secret..
Posted 9/14/2007 7:08 AM (GMT 0)
It looks like I'm in the minority here, but I choose for the most part not to tell people. Only my close family and friends know. I guess I'm still at that stage where I find a lot of stuff associated with CD to be embarassing to me. Plus, I sometimes think that people I don't know very well just wouldn't want to know that about me. I actually just told one of my friends who I've made this past month in law school that I have Crohn's. She actually knew about me getting the capsule endoscopy done but didn't know what it was for. But it turns out that she had a roommate in undergrad that had CD too! So she actually is totally understanding.

But I totally agree with what everyone says about people figuring out something is up just with eating with you. Maybe that's what happened? My friend who I told actually didn't know what it was, but she did notice I was awfully picky about what I ate. So maybe your co-worker was just noticing you being particular about your food and didn't really know why. I hope that's the case. Otherwise, I'm sorry if someone betrayed your trust. I totally understand since I'm super private about this and I hate when I find out that other people know who I'd rather didn't.
Posted 9/14/2007 9:21 AM (GMT 0)
I don't hide it if it comes up in a conversation, but I don't normally go out of my way to bring it up. Its actually kinda interesting if it does come up, because you'll run into a surprising number of people who know someone with crohn's, and most of them are very... well, not understanding, because most of them have no clue what it is, but most of them know it involves a lot of pain, which im sure we can all agree is true lol. sometimes its nice to have people know why you turn them down for social engagements, or why you don't want to come over and get wasted.


i can understand why they would tell, as ive done the same thing (not about crohns, but same type of "you promised not to tell!" type thing) to my friends on occasion. sometimes, it just seems better to tell than to let someone assume something worse. even so, i got chewed out for it and so should they. you have every right to be angry, and have every right to chew them out. just don't let it ruin your friendships, and try to keep in mind that they probably either had good intentions or werent thinking.
Posted 9/14/2007 10:21 AM (GMT 0)
Hi, I don't hide my illness from anybody. I don't care whom nows. People at work don't treat me
any diffrent because I have Crohn's. Don't be a shame to tell people.
Posted 9/14/2007 10:27 AM (GMT 0)

I don't usually tell everybody I meet about my condition, maybe because I like to "fake" that I'm normal.  But then again who is normal? People around us suffer from so many diseases, high blood pressure, diabetes, heart problems etc.  It just happens that my disease is more rare here in Greece, and almost nobody has heard of it.

The only ones that know is my family of course, my friends, my boss and my co-workers.  And let me tell you, their support is huge, I don't know how I could make it through the day if they didn't know what was wrong, and I love them all for giving me their love and understanding.

Christina

Posted 9/14/2007 12:51 PM (GMT 0)
I'm pretty picky about who I tell, and at work it depends on the job. I had a retail job with all young people (thankfully I was the boss) and decided they didn't need to know, but had a job selling medical (ostomy, wound, incontinence) supplies and of course most of the people I worked with knew, and I got to try all the new products for free, lol.

I go to school now, and really don't feel the need to share this with people in my study group either, but I did tell my anatomy/physiology class because I did a presentation on it at the request of my professor. If I get to be close friends with someone, I tell them eventually.

My family all knows, I wish some didn't. It's just not something I like to talk about, especially with people I don't know well. As for getting it out there, fine, I don't mind talking about it in the abstract but feel a little uncomfortable discussing my personal bowel habits.

As for telling 6 people and thinking it would stay a secret, sorry, lol, but if you tell more than 1 person it's not a secret anymore.
Posted 9/14/2007 2:44 PM (GMT 0)
When I start my new job on the 24th I am planning on telling at least the manager. It is a medical practice that is part of the hospital where I had my ostomy reversal done. I hope they can work out a schedule for me when I have to see certain docs whose last appt is at 4:30....my shift ends at 4:30. Maybe Ill even get one of the nurses there to give me my humira...I am too chicken to give myself any shots, and I like most others here am a human pin cusion
Posted 9/17/2007 7:49 AM (GMT 0)
Hi everybody, although new to all these, I was diagnosed in July 2007, I feel really comfortable about discussing and explaining my condition. However, like athensgirl, i live in Greece and apparently the awareness rate are extremely low. I don't tell everyone about my condition (after all why i have to?) but not because I am embarrased, I just don't think that it has any meaning to tell to whoever you meet that you have a chronic illness. Of course my friends, family, boss etc are aware of my condition and are extremely helpful and supportive.
Posted 9/17/2007 1:33 PM (GMT 0)
Thanks, you guys! Hearing all of your responses has been very helpful to me. I really thought more people would have kept it secret but the reasons you've given NOT to are excellent - like awareness of the disease.

I'm secretive by nature, I suppose. I have two BIG gossip women in my office and they are always trying to find out dirt on me and others within my office so they can tell it to someone else. They're awful and they drive me nuts. So to drive them nuts, I purposely withhold information about myself! I suppose that's pretty childish! hehe :)

You guys have given me a new energy today...I'm going to start opening up more about my illness. It's just such a crazy illness to explain. For me, I could be feeling GREAT one minute and then be doubled over in pain the next minute. That is confusing to people who know nothing about CD. But you guys all kind of pointed it out - if one person knows, eventually others will, too, whether I like it or not.
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