Acceptance

Yes, my parents. They are convinced that I do not have a chronic disease and are somehow going to "cure" me.

I dont even really talk about it anymore to the people in my life because most just don't have a clue and they think it's just something that you did to yourself...like my friend the other day made the comment that I didn't take care of myself.  I was highly offended and told her that she needed to educate herself about the disease before making sweeping judgements.  Another friend of mine who I used to work with wanted me to try all of these detox programs because she thought I had a toxin buildup which was causing my symptoms.  I just nodded along and told her I would give it a shot.  The main thing is to not take what they say personally.  Those that do understand and listen are few and far between but when you encounter someone like that then you can open up and discuss the issues without feeling like you are being judged and having to explain yourself.  Maybe you can print out some of the facts from credible sites and share them with those who need convincing.  Also, keep in mind that denial is a common human reaction to something that people aren't willing to accept on some level.  Some people live in denial on several levels with various issues in their life to help cope with some type of fear that they have.  I would say give it time with him as this is all new and not something that is easily accepted at first (or ever for some people!)

I agree. For some reason people have heard of Crohns but not UC. I end up telling those who I have to, that I have Crohns as it's the most easiest way. People also confuse IBD with IBS..... My elder sister is always trying to give me immune boosting herbs, vitamins and minerals, not understanding that our immune systems are too fast and need to be suppressed, not sped up even more :)

I know what you mean. My husband who is also a good man really doesn't get my illness. He understands when I am in a full blown flare and can't do much but the in between times when I have good days and bad days he doesn't get. Like I will be complaining that I am tired and my tummy is a bit dodgy and he will reply saying his is too and we must of eaten something bad.  I'm sure he probably does have a bit IBS but sometimes says things like hell I've probably got colitis too but I just get on with it which p's me off as if he really had it he would definately know all about it.  I have not had a day for a long long time where I have felt completely normal unless of course I am taking pred.

Thank you guys so much - I knew my husband was normal and I also know what a loving man he is. You have made me feel better and I greatly appreciate it!

My Dad has the disease, but he has been in denial for the longest time. He had surgery to take his LG. intestine out, and had a reconnect so he doesn't have to have the pouch, but he is still in denial. Course I'm the other direction, I'm facing it head on, and dealing with it, I have all the support I need my Mom, and my hubby's family, and my hubby. I guess u really have to be extremly sick with this disease for the ones close to u to totally understand. Taking your hubby with u with your next appointment is a good idea so he can ask questions to the doctor to help him understand too. I did that with my hubby for a few visits. It totally helped.

My mother and sister are nurses, so for them it's more of a fight about treatment then about what it is. But it is good to have their knowledge. I took my mother with me (she's 50, I'm 31) to a flex-sig procedure. My GI allowed her (welcomed her in fact) to sit in on the procedure. I have to say, for me at any other point in my life or with any other person it would have been embarrassing. But with my mother the BSN who has worked in the field for 20 years, it was extremely comforting.

So, I haven't had the problem of people accepting the limitations and agonizing discomfort of the disease, save for the VA and the Military that give me the "Fish in the meat market" look whenever I start to discuss it in common terms.

I had the same problem after dx as well. I didn't meet my husband until after 4 yrs of disease but he didn't fully understand until my first big flare a few yrs back.

The best thing i did with him was go to a ccfa conference. Here in the chicago area it is in march. There were a bunch of small seminars to choose from which explains everything from basic UC info, surgery options, pregnancy and IBD, and so much more. We have gone back every year as my disease changes. Thinking of a family this year we did pregnancy and surgery seminars. Its also a good way to meet people who are in the same boat.

Good luck!