To Tell Or Not To Tell

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Regular Member

Date Joined Feb 2008
Total Posts : 53
   Posted 2/23/2008 12:59 PM (GMT -6)   
Need I ask more? I have managed to hide my symptoms from everyone for four months - except for my family of course. I work full time in an office environment - I share an office. Bathrooms are down a hallway full of people sitting outwards facing the hallway. Have been late to work and left early, but I don't think anyone has really caught on. I know I need to tell my office mate because she is a friend. I also know if I keep feeling like I did last week (in crisis) I will be missing work (so far I have only missed one day). So who to tell in administration - if anyone at all?? It is a huge corporation.

I guess I think why tell if it is going to go away?? Why have the stigma?? Although sick like I am right now I'm starting to think I don't really care about a stigma...

I also have school parents/ friends to deal with (I have school aged kids). My husband and I joined a bowling league with some of them on Sunday nights. I hate bowling, but because we do "everything", we were talked into it. Sorry bowlers, but I would rather be hiking or watching a football game with friends or doing just about anything else!
To the point now --there is no way I can bowl tomorrow night and I really don't know what to say!! This group gives you a lot of fun poking grief - NOT a group to share something like this with.

I assume the responses will vary greatly. I gave the examples above, because they are the ones on my mind. I also have to share my diagnosis somehow with my kids??

Sorry so wordy...
Once again...

Regular Member

Date Joined Oct 2007
Total Posts : 486
   Posted 2/23/2008 1:27 PM (GMT -6)   
Hi again.

The big question I have for you is why would you not want to tell your kids? Are you afraid they will worry?
Do you feel that you can explain it clearly? If not, I'm sure we can all come up with a really clear, brief description that's kid-level. You want to tell them that it's not contagious and it's not the end of the world. It's just something that everyone will have to get used to because it's chronic. It won't always be bad but when it is, you'll just need some time to feel better.

As for work -- that's a call each person has to figure out for herself. I've found that when my friends at work know, my life is easier. When my manager knows, it reduces my stress to know that I can come in late without any problems. Companies can't discriminate based on your health and they know that. You might be surprised at how understanding people can be. If you need time to heal up and get this under control, you can also see if your company has paid short-term disability leave. You get paid not to be there. (Kinda nice, I think.) The HR people are obligated to keep your info confidential, obviously.

when you mention a "stigma" do you think it's because people will look at you and think you're sick? If you really are sick, is that so bad? We all tend to tough it out and put on a good face for everyone else. Personally, I'll take the sympathy and understanding if it means that a few people will look at me funny when I run past them to the ladies room. :)

Let me know what you think. It's a good topic you bring up and I know everyone deals with it differently.
UC for the last ten years
Current Meds: 6MP since 2006
Past Meds: You name it; I've tried it.

Regular Member

Date Joined Feb 2008
Total Posts : 53
   Posted 2/23/2008 1:43 PM (GMT -6)   
I actually did mention it to a doctor friend I know. In fact he made a few calls and that is how I had a same day appointment and a sigmoidoscopy within 12 hours. It was the first time I openly talked/ cried about it -- although the conversation was brief I DID feel much better- and the tears flowed much after that.

Your HR suggestion is great. I can always call and just get the facts about short term disability -- like a security blanket.

I know I have to address my children, but I never thought about them thinking it is catchy. Thanks for that thought.

The school parents are a huge part of my social world right now and I depend on them for rides -- nice people, but a wacky group.

Still in bed,

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 2/23/2008 2:31 PM (GMT -6)   

I know this is a hugely personal individual decision but I just wanted to give you my perspective from having crohns. I tell everybody about it and I feel like my life is SO much easier because of it. No making excuses, no worrying whether or not I can eat something, no hiding my pills... I like the control. I like not having people judging me for going to the bathroom so much. Instead of that weird girl that is always stinking up the employee restroom, I am the girl that has crohns. I like the second label a lot better. I like people joking with me that I am "lactarded" because I can't eat cheese. This is a part of my life that is never going to go away. It might get a lot better, but it wont disapeer. I just don't see the point in being so secretive. It may be gross but once I put it out there 99% of the time people share personal stuff about themselves or family members back. I am the one people come to talk to when they have medical stuff going on and don't know who to share with. I enjoy being that person.

Why have your friends think you are bailing on them with no good reason? If they know what is really going on with you they might even be able to help you out!! (drive your kids to school, make a dinner for your family, etc.)

As far as who to tell at work, this is what I would do. I would share it with the people that are around me enough where I may have to interupt a meeting or phone call with them to use the restroom. That way they understand. I would tell whoever it is I deal with when calling in sick/late. Then I would ask that person if there is anyone else in the company I should speak with (hr). If all you need is a little flexability in your hours than your immediate supervisor might be fine.

Once you are more comfortable being open with your disease at work short term disability might not seem like as much of a necessity. You could save it for a time when you are hospitalized or too sick to actually come in. Days that you are just pooping frequently you would be more comfortable working because others would understand why.

I don't really see how it is possable to have any semblence of a normal life with IBD without sharing it with other people.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!

Forum Moderator

Date Joined Mar 2003
Total Posts : 10407
   Posted 2/23/2008 2:47 PM (GMT -6)   
I told my director and the team I work with as soon as I was diagnosed, and it was really the best decision. They've been helpful and supportive, my director even allows me to work from home part or whole days when I need to do so. When I get my Remicade, I read word-related stuff or write reports in the morning, then work by computer from home in the afternoon. That way I don't have to use sick time. I'm sure others in our office know, in fact I've told some as there was an indication to do so. I've had no bad effects.

My close friends know; they also know this is a serious thing that makes me very sick and not something to tease about. If you think your bowling group is going to be insensitive, you can either just bow out and say something has come up and you're no longer available to bowl. I'd probably tell them I'm having some health issues, nothing for them to worry about, but I just don't feel like doing the activity because of them. If they're jerks about it, maybe they aren't such good friends.

Definitely your children should know mom has a health issue that will make her sick at times, but it isn't something that can make her die (children always worry about this.) Tell them that you'll let them know when you're feeling really bad, and at that time they can help you by doing more for themselves and being as pleasant as they can. Tell them you love them very much, and you want them to come to you for help with anything they need help with, even when you're sick. Adjust the language to their age and understanding levels of course.

I suspect you'll be pleasantly surprised when you share the information. Do develop the habit of not talking about your health unless necessary afterward, though. It makes people feel more entitled to know your personal stuff if you discuss details with them. When someone at work asks me how I am, I usually answer "fine." If it's a really bad day, I'll say "so-so." My team members know what that means, and they'll take extra effort to be helpful that day sometimes.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
Co-Moderator UC Forum

Regular Member

Date Joined Feb 2008
Total Posts : 53
   Posted 2/23/2008 3:04 PM (GMT -6)   
thank you. i like all of your suggestions. i HAVE to something to try to feel better. opening up may help -- even if I keep it is a little vague with some groups.

my goodness this part is making me very emotional!

UC Dude
Regular Member

Date Joined Aug 2005
Total Posts : 438
   Posted 2/23/2008 6:19 PM (GMT -6)   
Is there a compelling reason to tell anyone? Do you feel like you are keeping a secret? Or, are you just looking for a few people to know from a support standpoint. I would keep it simple and say you are having some health challenges or not feeling too well if making a trip or two more to the bathroom. If your health condition forces you to leverage fmla etc then I would notify HR. Otherwise I might suggest you work around it.

If you do want to share outside your family etc. I would ask you the following... How supportive is the corporate culture where you work? If dog eat dog... you might want to be more private. If more open then I would be more comfortable sharing.

When I first got sick I seriously felt like I needed to put things in place... take care of family, let work know in case I croaked some day. I think this is all normal. take it from me. I would ask your family Dr. or a friend for a referral to a good Psychologist etc. Talking about how you feel with your new diagnosis and getting "right" between the ears will go a long way.

Good luck and be well.

Veteran Member

Date Joined Nov 2006
Total Posts : 731
   Posted 2/23/2008 6:57 PM (GMT -6)   
check out the ccfa website.
there are some articles in the "kids & teens" section which is really for helping kids who have crohn's or UC, but if you look over some of that, it may give you some ideas for what types of things to explain to your children. like the fact that it's not contagious.

they used to have a free comic book that was about a little boy with crohn's. again, while geared toward the child with the disease, it would certainly help explain your illness to your children.
i couldn't find the comic book just now, but maybe it's still on there somewhere.
28, happily married, stay at home mom to 2 year old son. due to have baby #2 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Asacol, probiotics, ground psyllium husk, fish oil, prenatal

may you live all the days of your life.

tooth fairy
Regular Member

Date Joined Jan 2008
Total Posts : 98
   Posted 2/23/2008 7:11 PM (GMT -6)   
I talk openly about my colitis. It just makes life so much easier that way. I've found that there are a lot of ways to explain what the disease is without resorting to grossing anybody out-and I flat out refuse to be embarrassed that the particular disease that has chosen me involves poop. People with arthritis and diabetes, for example, don't worry about keeping their diseases a secret from their employers and friends. I have a preschool-age son and I overheard him explain to his friend the other day-"My mom's large intestine doesn't do its job, which is to take the water out of food. So she takes medicine to help it do it's job the right way." I was so proud!!
I don't run around discussing UC at length to anybody who is within earshot, of course, but I've made a point to be open with anybody who asks. There really are ways to discuss this in mixed company-just present the facts about the disease itself, that it causes ulcers in the colon-most adults can put two and two together and figure out what kind of problems colon ulcers will produce. With my family and close friends, I now only need to say things like, "I'm having a bit of a flare," or, "sorry, but salad is just a bit too much for my belly," and everyone is incredibly understanding.
All the symptoms that come with a UC flare are terrible enough without having to be worried about keeping things mum. When I started talking about what was going on I was absolutely overwhelmed by the outpourings of support. I think you'll find the same is true with you, Charmin-just hang in there!
Erica, 31
Pancolitis, diagnosed July 2006, at age 29
Imuran, Asacol, Rowasa*(new!)
Still on prednisone (10 mg) taper, two more weeks
Experimenting with low residue diet, live culture yogurt and probiotics

Regular Member

Date Joined Jul 2007
Total Posts : 208
   Posted 2/24/2008 8:02 AM (GMT -6)   
I think the stress of not telling may also be contributing your flares. I would suggest to tell and you may be surprised that some of your friends may already by familiar with UC through their family member or friend. If you are this worked up about it, as UC dude commented, I would also suggest seeing a therapist. I did and it did help me to cope better.
Ash 39 NH, vegetarian
Current meds: Asacol 12/day, Imuran 150mg
L-glutamine, Coconut Water, Rowasa(as needed)

Regular Member

Date Joined Dec 2006
Total Posts : 151
   Posted 2/24/2008 12:21 PM (GMT -6)   
I think keeping this from everyone is a HUGE mistake. No man is an island, and you need to share your feelings or you'll end up feeling depressed and alone. That said, I agree not everyone needs to know, but your family and closest friends really should, because they will be the first to see that something is going on, and you don't want to make them more worried than they already are. This is especially important with your spouse and kids, because they really NEED to know that you're gonna be fine.

I understand that coping with this disease is difficult on so many levels, but don't make it more difficult than it needs to be. It's not your fault that you're ill, and it's not something you should be ashamed of. If you feel embarrassed talking about specific details of the disease - leave them out! Most people will be very understanding when you tell them that it's an illness that has to do with your digestion, it's not contagious and that it sometimes forces you to go to the bathroom several times a day in a hurry... Keep the gory details to yourself, but let people know what kind of behavior they can expect from you as a result of having this illness. It will keep your stress levels at a minimum when dealing with other people, and you won't get any "funny" looks because, believe it or not, people DO understand that when you have to go - you have to go.

Forum Moderator

Date Joined Apr 2004
Total Posts : 23551
   Posted 2/24/2008 1:09 PM (GMT -6)   
I never really told anyone about my Uc until maybe a few years ago. Most of my close friends knew but not the extent. I finally opened up to them and explained to them what it was and what to expect. The new found understanding I got from them was great because I felt like I no longer had to find excuses. I now feel more comfortable about talking about it but I leave the details out. I typically explain to them that I have ulcers in my large intestine and leave it at that. I told my kids though when they were old enough to understand what I had so they have known for a long time. They're great because when I say I'm not feeling good, they don't pressure me for anything and actually they help around the house.

I was a girl scout leader for 3 years but had to quit because it was becoming too much. I sent a letter out to all my girl scout parents explaining to them the reason I was quitting and many of them came up to me and said that even though I was so ill, that they were proud of me for keeping up the troop. I had a rather large group of 20 girls. But they didn't look at me funny nor were they uncomfortable around me.

I think the older we get, the more we realize that everyone has something wrong with them. It's just a matter of what. There is nothing to be embarassed about with having Uc. It's a disease that is beyond your control. You didn't choose it, it chose you and having to learn to cope with it is tough no doubt. But when you have a group of understanding friends, coworkers or whatever, it makes things a lot easier on you. I personally don't see any stigma attached to this. But we all approach our illness differently.
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~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
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Forum Moderator

Date Joined Mar 2003
Total Posts : 10407
   Posted 2/24/2008 1:18 PM (GMT -6)   
For those I don't know as well and don't care to share personal details with, I just say I have an "autoimmune disease" that sometimes affects my energy and ability to do some things. It's true, but not very revealing. People do need to know your aren't just being lazy.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
Co-Moderator UC Forum

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