Do you tell people about your disease

Crohn's Disease Forum

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Joined
Mar 20, 2010
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Just curious if I'm the only one who would rather keep it secret. I tell people I work with and friends of course, but I'd rather no one know about it. I don't want people seeing me just as "that guy with the disease". Also my dad tells everyone he know about it which pisses me off. I met someone from my dads work once and when I went to shake her hand, she acted like she was gonna die touching me(only giving me 2 fingers and the expression on her face :/)
 
A lot of people don't know anything about the disease and fear of the unknown is understandable. Since this is the case, I generally don't let people know about it unless I have to. For instance when I was in school, I wouldn't tell my teachers unless I was missing class due to crohns. So instead of them thinking that I'm skipping and faking it, by just saying that I'm sick, I let them know that I have crohns and inform them what it is if they don't. Every single person I've told in this way has been understanding. Sadly sometimes I also add in that its not contagious.

I don't think that everyone will respond the way that you described. I think the main reason why I don't like to tell people is because I'm still not fully comfortable with it myself. Even though I was diagnosed 19 years ago, I had to deal with the possibility of being made fun of by other kids while in school. So I think having to go through this so young has made me afraid to tell people.
 
I always tell people...now that I have a bag, I have no control over my gas...lol..people look at you funny if you don't explain why 'that' noise is coming from your tummy...lol
 
I have gotten through the first big episode of illness and diagnosis. Everyone that knew me knew what the deal was because of how serious it was. I was really sick for two months prior to being admitted and when I came out a few weeks later I had a bag hanging off a drain tube they put into my belly. Hard to hide that.

Now that I had surgery and six months to fully recover I have gone back to work. I went to a placement agency and I told them the truth. I had no idea if I'd be able to stand all day without poo running down my leg. I really didn't have confidence I could :eek: . So I thought I would try a temp job and see what happened. They all knew the scoop too. I did great! So good in fact that I decided to pick my career back up where I left it off. I got a job as a Horticulturist at a production/retail facility and I did not tell anyone about Crohn's. I am thinking that if problems start I will go to the owner and drop the "C" bomb, but otherwise I plan on moving right on past this and getting on with my life. I will NOT let this disease define me.
:tank:
 
I usually don't. My family knows and some people at work. Not that I am afraid to tell them, I just don't feel like explaining it over and over again. Because most people never heard of crohns before. I don't blame them I never really heard of it until I had it. I even keep my medicine in a breath mint container at work so people don't ask. I just hope they never take one thinking its a mint!
 
I do tell people, but mostly because my life revolves around FOOD and my dietary restrictions are very obvious.

I know how you feel about your dad telling people... I prefer to be the one to tell people. Sometimes my MIL will blab my business all over town and it drives me crazy. I'll talk about it to anyone -but that is MY choice to make, not hers.
 
i tend not to tell people about my pouch, its not a secret or anything. but it dont come up in converstaion easily does it?
anyway i have a child , and he tells the whole world everything!! dont they all do that?
 
Ha Ha Sharon yes they do!
little horrors!

I only told close friends in work, but now they ALL know, it was broadcast all over Facebook that I was in hospital and dying!
When I go back to work after Easter, I am going to sit down with the senior managers and tell them everything, it's time that I stopped pretending, it's not gonna go away, and work colleagues need to know, especially when you work as a team (I work in a school)
Like Amy, I usually only mention Crohns when it comes to food, ie at a party, or meal 'Sorry can't eat that because.......'
 
I'll tell anyone who will listen about the plight of this condition.

Inevitably someone will say, "I have a relative or know someone who has CD or UC".

I take no shame in the fact that I am in the restroom a good portion of my day.

I always have received a sympathetic ear. The fun part is explaining what a fistula is, then you really get their attention.
 
I dont really tell people. I tell work and colleagues, friends and family but noone else really. I wouldnt want everyonw knowing that I've got it.

I dont really know why not, I suppose I dont want everyone thinking theres something wrong with me or that I'm any different. Also, dont you all find it embarrasing talking about poo! I do?? I dont really like talking about it with people.
 
I tell anyone that wants to know. I have nothing to hide and I am not ashamed of anything.

If anything I like to spread the word and educate.
 
I tell anyone too...This disease stinks and should be told, the more people talk about the more attention and money I believe it will get. Maybe not help us, but how about the next generation? We shouldn't have to hide. Just my opinion....Sue
 
I would like to not tell anyone about it but unfortunately I often end up having to, like when I explain to friends why I missed class or why I can't go out to eat with them, why I can't travel too far from home, why I can't go out tonight even though I felt fine earlier, etc. I have this fear that people are going to go home and Google "Crohn's disease" and see that I bleed from my butt. It's not exactly something I'm comftorable sharing with other people.
 
I don't generally bring it up. I remember the old folks talking about their illnesses and hoping I would have better things to do when I was younger man.

Now I am becoming one the the old folks, so I resist droning on about it.

No one can tell anyway, since I have no symptoms presently, so I really do not have to explain running to the bathroom or anything like that.

Dan
 
It really isn't something that's come up in conversation. I have told some friends, and my old company I worked for knew about it. But they kind of had to because of my missing work due to the surgery/diagnosis. However I have not told a single person at my new job that I've had since October. I do think I'm going to have to break down and tell them though do to the fact that I'm not doing so good right now. But we'll see. I don't broadcast it on facebook or anything like that, but I'm sure if someone really dug around and looked at enough of who my friends are they could figure it out. ;)

I am not ashamed of it, but I try to not let it claim me. I don't want people to do the pity look or tsk tsk type reaction. So I just don't go around volunteering the information unless it's needed. But like others, I think that the more people who know about this disease maybe the more awareness there will be.
 
Crohn's Disease is as common in my part of the world as Type 1 Diabetes, so plenty of folks have at least heard of it. I get asked about it often. Seems lots of folks know somebody else who also has it.
 
GoJohnnyGo said:
Crohn's Disease is as common in my part of the world as Type 1 Diabetes, so plenty of folks have at least heard of it. I get asked about it often. Seems lots of folks know somebody else who also has it.


I have found as I have told people, or people have found out that they know someone with it. San Diego has a famous UC patient in Rolf Bernischke who was an NFL player in San Diego for many years. So people hear I have Crohn's and often say "isn't that what the kicker had?"

http://en.wikipedia.org/wiki/Rolf_Benirschke
 
Yeah I do, but I dont go into detail , if they want to know more (which most dont) then I say a bit more.. but really if I didnt have a clue when I dx, then how can someone even grasp what it is? Whining too much makes people go away...like sometimes it is a good thing. ;)
 
I let people know. I tell them what it is and how it effects people in differant ways. I tell them there is no cure, but there are some good meds out there to help control it.
Knowledge is power and I'm trying to educate as many people as I can. Some are just slow learners. "you know if you take this it will cure it." Duh!
 
D Bergy said:
No one can tell anyway, since I have no symptoms presently, so I really do not have to explain running to the bathroom or anything like that.

Hope to be in that same boat again soon!

- Amy
 
Crohn's is such a major aspect of my life that I do tell people after I've become somewhat comfortable with them.
 
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