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Does anyone have tips about dealing with insensitive comments? Particularly from friends and family members. One thing I constantly hear is "Well you look fine."

 Reply posted for tdheather.

Hello! I just wanted to say I get the same type of comments.  I got diagnosed with UC in 01/2010. I was hospitalized during my diagnosis.  When my friend and some family members came to visit me in the hospital, I received the same type of comments.  I tried to ignore it. I was on prednisone for four months.  It took the help of a few great friends/family and my gi doc to help me lose the weight I gained once I finally was weaned off of it .  I lost 50 lbs and was discouraged.  Once my one friend started nursing school, she understood more about CD/UC and changed her opinions of seeing me in the hospital.  Sometimes I wish people would understand what effort it takes for some of us to deal with the illness.  I still get the "you don't look sick comment" all the time from one friend.  She also says "you FINALLY look normal"...how am I supposed to act like it's okay to say these things?  If you ever need to vent, the CCFA will be here for you, i'm sure :)  These diseases are rough, but we will make it!

 Reply posted for tdheather.

I have had active Crohn's for 25 years. I got so dang tired of hearing people say to me, "You don't look sick" that I literally had Bruce Lee tattooed on my entire right arm. Now as I show them my tattoo of Bruce expressing his physique I say back to them, "Bruce Lee looked absolutely amazing 5 minutes before he died of a health crisis, MORON!"

Some people are not smart enough to figure out what I just did to them. The ones who are usually leave me alone after I just showed them how stupid they are.

I love it! It works like magic  ; )

 Reply posted for tdheather.

Yea I got a "wow you look really thin" a few weeks ago from an aunt and I just played it off with humor (thats just how I am). I told her yep, a 3 week flare up will help lose 15lbs. What sucks is that Im under weight. I have inlaws mainly who dont understand what I got. Like I worked 11hrs yesterday and didnt go to church today because I slept and I got a call from my father in law asking why I didnt go and he just started making baby crying sounds. Oh I wanted to punch him in the face. 

 Reply posted for tdheather.

I have had the same frustrating comments, from friends and from my family. I have had the:
-"It's all in your mind", "I think you want attention" or "You are sick with everything, is there something not wrong with you?"

And since I am very skinny, I have had people told me that I am lucky to be this skinny or that I might have anorexia.

I gues we can either educate on IBD or take it with humor, or in some cases just don´t even talk about it.

Ignorance make us feel bad. Thank God for this kind o forums. We all get what we are going through.

 Reply posted for laurabeth78.

I just get people nagging me that I take too long in the bathroom and that I'm holding them up.

 Reply posted for tdheather.

I was in the hospital for 10 days back in May, and all the doctors and nurses would tell me that I didn't look sick or that I didn't look like I belonged there, etc.  It kinda rubbed me the wrong way, too.  I often said I'd like others (who didn't understand) to take on my symptoms for 5 days and see if they'd change their outlook on my UC.  I never really had a good response, other than "oh yeah, why don't you take a look in the bathroom and see if you still think that way" but that's ugly and rude.  I guess I started prefacing it later on (when I returned to work) that although I probably don't look sick on the outside, my insides were quite swollen and I had a lot of internal bleeding.  That usually let people understand the seriousness of the issue.  Because remember, how can they know what it feels like?  They don't have it nor do they know someone who does have it, other than you.  I kinda felt it was an opportunity to educate them on IBD.  Although the comments were very aggravating and frustrating, they don't know/understand the disease.  And it's up to you how graphic you want to get about the symptoms.  Some people made jokes about it and I'd give the full details and let them know it's not a joke.  And if they think it's so funny, then I'll forward all of my hospital bills to them....

I don't know if this is the best way to handle it, but I simply described the pain and other symptoms when someone would tell me I didn't look sick.  Maybe that can help you?

Good luck and hope you are well.

 Reply posted for tdheather.

I kind of deal with the opposite problem.  Since I lost so much weight, and got such a puffy prednisone face, even though I've been feeling great all summer, some people insist I still look sick.  I've always been skinny, and I learned throughout my life that some people just have to comment on the skinny girl. I've also always been pretty pale... so I just get a lot more of the comments I've gotten my whole life about how I need to go out in the sun and eat whatever fattening food they happen to think of. I used to get offended, but now I just think "whatever." By now the people who actually matter get it, and to the rest... "whatever." I just don't care anymore. Let them eat cake.