Advice on how to explain Crohn's to friends

[Yvettemj]

Hello everyone,

I've been desperately searching for some sort of support group and I am hoping this forum is what I've been looking for. I really need some advice on how to explain my Crohn's to my close friend. This friend is aware that I have Crohn's Disease but she doesn't understand exactly what it is. She thinks Crohn's disease is just something that makes you have an upset stomach. I'm a very private person and I typically feel uncomfortable telling people about my disease. However, I feel like it's important for my friend to be educated so she will understand more of what I'm going through. How can I go about explaining Crohn's disease to her without giving her all the nasty and embarrassing details yet simultaneously have her get a sense of what I go through? Any and all feedback is much appreciated

 

[afidz]

Hey! Welcome to the forum! I came upon this the same way you did, I was looking for a support group. This is really a great tool to use, whether you just need to vent, or you have questions about symptoms or side effects you are having. Chances are some one somewhere on here as been through what you are going through and can offer advice and support. As far as your friends go, I think if you go to http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/ there is a brochure that you can print to give to people. CCFA.org is also another great resource, they have a list of support groups in your area if you still want to explore that option. Hope this helps!!

 

[Yvettemj]

Thank you so much! The website is very helpful, as was your reply. I like the idea of giving people a brochure that can explain stuff to them.

 

[Jennifer]

Hi Yvettemj and welcome to the forum!

There are a lot of ways to explain Crohn's to other people. For me I generally tell them that I get inflammation in my intestines which makes it hard to absorb nutrients and can build up scar tissue over time which can form a narrowing that might need to be removed (I add that part usually since I've already had a resection, the scar is usually what sparks the conversation) and that there's no cure yet and I take medication to try and keep it under control. Some people have mentioned saying something like, "imagine you have a stomach flu that doesn't go away." Or something like that.

Here are some ways of explaining it to other people and for different age groups:
http://www.crohnsforum.com/wiki/Explaining-Crohns-disease-to-children
Here's a great but related story:
http://www.crohnsforum.com/showthread.php?t=14913

 

[afidz]

When I explain the stomach aches i say that it feels like I am digesting a bowling ball and a box of nails. paints a decent picture

 

[Yvettemj]

Thank you Crabby! I've actually used the stomach flu one before. It seemed to get the point across.

 

[MoRymes]

Hi Yvette,

Welcome to the forum. Like you, I joined recently to find some support. There really isn't anyone in my daily life who understands what it's like to have Crohn's. I hope you find what you're looking for here.

When explaining to someone else, I usually tell them I have a progressive, autoimmune disease in my digestive system, which basically means my own immune system is attacking my own digestive system. The symptoms are a result of this. Unfortunately, since it's my own system that's the culprit, there is no cure, and treatment is not always so simple and straightforward.

Beyond that, I don't really go into too many details unless they ask. Hope that helps.

 

[Yvettemj]

MoRymes, yes very helpful. Thank you!

 

[SarahBear]

I agree with everyone else - it's best to explain it in more technical terms rather than explaining what happens to you. You can also encourage them to do their own research, if you find it difficult or awkward to say it. I like to explain it with a list of possible symptoms, while not actually indicating what happens to me. Or, the nice, ever so general, "it does anything you don't want your body to do." :lol2:

 

[MissBG]

I usually just tell them what everyone else has said. Its an autoimmune disease that caused my immune system to psycho and attack my digestive system. I try to leave the actual issues it causes to their imagination but occasionally I will get someone who will not connect the dots in their mind and ask what kind of symptoms I get with it. I really hate that... I mean how do you gently tell someone that insides are all torn up and you poop blood constantly?

I did have a coworker ask one time and I went through my generic answer and his reply was "Oh sh*t!" I kind of laughed and said yeah pretty much

 

[Yvettemj]

I agree that using technical terms are better than going into detail about what I'm actually experiencing, but it is rather difficult to hide what I'm experiencing from friends, for example if I'm staying at someone's house overnight, they still find it hard to understand why I make frequent trips to the bathroom. IBD can get so embarrassing...

 

[BigMike]

I agree that using technical terms are better than going into detail about what I'm actually experiencing, but it is rather difficult to hide what I'm experiencing from friends, for example if I'm staying at someone's house overnight, they still find it hard to understand why I make frequent trips to the bathroom. IBD can get so embarrassing...

If this is in fact a good friend, full disclosure would go a long way in helping that person be sympathetic and understanding.

I am still asking my lady friend all sorts of questions about it so I can be of help/assistance.

When you get right down to it, it's medical/scientific. If somebody finds it gross, then they are not approaching it with a mature enough attitude. Crohn's sypmtoms aren't pleasant, but when put in the confines of it being a medical condition, it becomes a part of nature, NOT a punchline.

As an outsider on this forum, I will never understand how uncomfortable it is to have to discuss your condition. However, I can speak as an outsider in telling you that if we care for you, we want to know as much as possible so that we can help!:thumright:

 

[SarahBear]

When you get right down to it, it's medical/scientific. If somebody finds it gross, then they are not approaching it with a mature enough attitude. Crohn's sypmtoms aren't pleasant, but when put in the confines of it being a medical condition, it becomes a part of nature, NOT a punchline.

Absolutely!

We appreciate your concern and understanding here, and I'm sure your lady friend is extremely grateful as well.

 

[Yvettemj]

If this is in fact a good friend, full disclosure would go a long way in helping that person be sympathetic and understanding.

I am still asking my lady friend all sorts of questions about it so I can be of help/assistance.

When you get right down to it, it's medical/scientific. If somebody finds it gross, then they are not approaching it with a mature enough attitude. Crohn's sypmtoms aren't pleasant, but when put in the confines of it being a medical condition, it becomes a part of nature, NOT a punchline.

As an outsider on this forum, I will never understand how uncomfortable it is to have to discuss your condition. However, I can speak as an outsider in telling you that if we care for you, we want to know as much as possible so that we can help!:thumright:

I wish every outsider was as concerned and understanding as you seem to be. I can now also see how full disclosure would help. Thank you