How to communicate with others about Crohn's

My wife had known that I had Crohn's before we got married and I had alreday told her about the potential complications.

As to my colleagues and friends, I try not to tell them about my Crohn's disease, because it can be hard to explain.  I just tell them that I have digestive issues so I cannot eat cheese, spicy foods, etc.  They understand.  Does this affect my work?  Yes, but not a lot.

Wilder, I start with basic information and try to leave out the gross stuff that most people don't want to hear.  Most people are content to learn that it's an inflammatory disease in my intestines and that I have arthritis along with it.  If people probe for more information, then I will be happy to give it to them, but most don't ask specifics about the bowel aspect.  I'm amazed at how many people now respond with, "I know someone with Crohn's," compared to several years ago.  Many more people have heard of it now, so you may not have to give as much information as you are thinking you do.   

This disease is hard on marriage sometimes and I've heard of many people getting divorced over it.  Luckily, I already had issues when I met my husband, so he has grown up dealing with this.  That doesn't mean it isn't hard on him when I am really sick, but he at least knew somewhat about what he would be dealing with.  It helps that he has his own health problems, so we sit on the couch or take a nap together like two old people (and we're 29). 

you know I was watching tv the other night and there was a commercial on about crohns, and it started out with a young man probably 30 running into a br. and dropping his pants all you see his himm run into the stall and then the camera pulls back and you see his pants around his ankles and then the commercial goes on about socially embarrasing cd is. and painful but i wiah they would run that ad alot. today cd has no age preference nor religious preference, nor gender. it seems people are getting younger and younger with cd.

i used to be pretty open about my crohns. I mean i didnt give detail about BM's and gas, but i told it how it was. Most people ran away screaming so i now i rarely speak to people about my disease. Not that i have many people to speak to anyway barring the medical community. I'm totally open with them. Poor sods!! ;)

I will just tell people I have Crohn's and sometimes they already know what it is. If they don't they will usually nod and say ok, a few will ask more questions so I'll just tell them basically what it is w/o disclosing nasty details.

However with my family, I tell it how it is. When they ask how I'm doing today CD wise I'll tell them. I'm grateful I have such a loving husband too. I don't think he'll ever leave me because of this. We've been through worse than this.

I try to keep things 'medical.' People react much better when you say "frequent stools" instead of "lots of pooping."

I also usually stick to the group of friends I already have. Some of them know more about the gritty details than others (this directly correlates to the amount of time we hang out) but they all know that when I say I don't feel well, I'm not just making excuses, and that I poop a lot. They are comfortable enough with it/me that they occasionally crack a joke about it. They're usually pretty funny, too. Anyone new will usually be with at least one of the guys, so if I'm absent they can get a basic rundown. I generally don't bring it up as its own topic, except in vague "I feel like crap" comments, but if it's relevant to another discussion or someone asks about it, I'll bring it up and/or give a basic explanation of the disease itself and some vague references to the symptoms.

Of course, this is one of those generational things. I'm 22, and the oldest of my friends is in his mid thirties, so we're of a generation that's been between old-school stuff and new-school stuff (for example, my classmates and I got to pick between the new and old SATs). Also, the internet became a big thing in our teens... and with it, Google. So we're generally pretty adaptable and open-minded.

My parents's generation, on the other hand, would be horrified by some of the things I say in casual conversation with my friends. They're in their 60s, and while they themselves are exceptions (they have health issues of their own, and have lived with my Crohn's just as long as I have), some of my family members are not. So, I find it best to tailor my conversations to the audience. My friends and parents get the R rated content, my extended family and acquaintances get the PG13 content, that sort of thing. I do the same thing with swearwords.

There is no need to ever feel embarassed that you have this disease or a need to hide it but there is also no need to advertise it. All too often I hear people complain and moan about their lives with one another and soon it becomes a my life is worse than your life contest. Then it becomes a my illness is worse than your illness conversation. I think you all know where i am going and have been with people that start these conversations with no idea of what this disease really consists of.
When asked about the disease I am more than happy to talk about it and depending on the person I am speaking with even go into different levels of details. One of the most important things for me is to never come across as looking for sympathy or complaining. My focus is purely in educating in a manner that helps others understand without being scared off by the gory details. Why on earth would someone need to know that I have 15 plus bowel movements a day or skin tags? There are many details that come acrossed less as them being immature but more as too much info. Start with generalized descriptions and then depending on your relationship with that person you may be able to go into a little more in depth details.
People are almost always grossed out or bothered by bathroom talk or medical conditions below the belt. Plus I like to keep some level of personal health matters so that people don't just think as me as the guy with the crapping disease. If at all possible I would love for many people to not know that I am sick so that they are not focused on it and don't get weirded out. Many people just do not understand illnesses and tend to segregate themselves from people that are sick. They feel uncomfortable about what to talk about or how to act around you, so they just stop coming around.
As for those in relationships I really encourage you to remember that even though we may be extremely sick or in pain, our spouses and partners are experiencing Crohn's disease too. They are just as much involved in many ways as we are with this disease because their lives are not the same as if they were with a healthy person. This is not always a bad thing for those other people because it can help bring you closer together and form a bond that many people will never experience. It can also be extremely hard due to the financial obligations and pressure that this disease can put on a relationship. We need to not forget their needs and feelings too. Sometimes we become desensitized to our Crohn's talk and need to remember that others don't usually talk as openly about the subjects that we do.

Post Edited (tsitodawg) : 8/10/2010 2:58:19 AM (GMT-6)

I was married (it was a rapidly deteriorating relationship, but the fact remains that I was married) when I was first diagnosed. I was trying to help my ex-husband understand what I was feeling, but didn't want it to be all about the disease, so I limited myself to no more than 5-10 minutes of discussion about the disease in the morning and in the evening. Because the relationship was deteriorating, I felt that there were many other issues that needed to be up for discussion other than my disease. That would be true for a good relationship, too.

If I discuss the disease with friends, I try to keep it light, and inject humor when possible. I don't want (and quite frankly, can't) to hide the disease from close friends, but I also don't want the disease to monopolize the relationship. I am so lucky to have such great friends who can laugh with me about the disease and can look beyond it to find out who I really am.

Glori

You may be expecting too much from your friends. It is a rare and good friend that will check up on you in the way you expressed. This is not always because they are not good people but for a variety of reasons.

What are you taking that would require people to check up on you? You may be leaning on them too hard.