do you ever feel like telling ppl to walk a mile in your shoes??

Don't get me wrong, I love my family and close friends. but there are times when I want to tell them to walk a mile in my shoes for a day.

I know they all mean well, but i feel ..oh i don't know, like i am whining when i complain when I don't feel well. Sure I have days where i am feeling self pitty. Why did this happen to me, type thing. But  more often then not, I just want to vent, and have them listen.

It's hard to explain to them when they don't have this problem.

Mom tells me I have to eat. She doesn't understand that at times I just can't.

A friend ( who is a lovely larger girl) tells me she wished she had my problem so she could lose a few pounds.

That gets me kinda mad,as i wouldn't wish this on anyone.

Someone else tells me , well you look great! Well darn it i wish i could show them my insides, and say, wow does this look great to you now?Maybe i am making to much of this. I don't know.

All the time. People would have no idea how hard it is living with a chronic condition. The pain, worry, discomfort. It's never off, not even for a day. I think we adapt and become stronger for it. Personally, I think I have a super high threshold for pain where little discomforts like being cold or minor aches that "normal" people complain about have no effect.

I'd love to have my sister truly "see" what my life is like. (Of course very temporarily, I'd really never wish all of it on her) She often calls me hypo (as in hypochondriac) and I always tell her, no, I'm actually sick.

People also just don't understand the fatigue. I think it's hard for someone who doesn't experience it to understand that I'm not just tired, I'm wiped out. That's something I wish people could truly understand.

I'm sure if someone who didn't know at all would be shocked by just how much it affects your life.

Oh goodness Sala, thats horrible! Sala, I come from a very obese family. All are morbidly obese EXCEPT me. Yesterday I was talking to my sister and she was telling me that she had been praying for me and asked how I was feeling. I told that I was feeling so much better, but I have been losing weight for some unknown reason. She said, man I wish I could have weight fall off me like that. But I told her, you don't want to lose weight this way as when my weight falls off the reason usually isn't a good one. Hugs!

You can tell them, but they still won't understand.

I totally agree with everything thats been said here, and experience similar situations.

I've also learned that Crohns seems to be a very individual disease, there are similar symptoms but everyone has a different experience with it.

Both my brother and I have crohn's but mine is a lot worse then his so even though we have the same disease it is hard for hime to relate to me and understand what I'm going through because he hasn't experience nearly what I have had to endure, which I am grateful for that he has not had to go through the things I have.

It's nice to come to the site and know others share similar experience and situations.

hey, we all know how hard it is. truthfully, the world knows alot more about cd, uc, and other disabeling gi diseaes's. I've seen quite afew ad's on T.V. about these diseases being so disabeling, I'm on permanent, and it took only 8 months to being federally disabled, and i think alot of people are suffering more today with gi issues. so yes I get out of my vehicle and walk normal, look normal, I can't work in normal circumstances, I only go to movies when i know I am going to have a decent day, and not have super bad gas or gas that i might have to hold back a little, if I have to hold back just alittle, causes huge pains that can last all day, until i either pass all the gas or go to the bathroom, I've had cd for 40 years, and I think it is harder to deal with at 60 than i did when I was lets say 40. it seems where my cd is now, between the bm's and gas I'm consumed with making sure that I get rid of all the bile and mucus from the night before. I really hate how this disease is.

I've lost enough weight now that I actually bought new jeans because the others, which were already kind of baggy, got even worse.  So I bought newer smaller jeans, and those have room to spare.  I dropped from 38" waist to 36" and still have room to spare, and my wife has the nerve to develop a "complex" about my changing image this past year.  Weight loss, glasses, new clothes here and there, and she's upset.............i'm not getting it.  I love the ones who tell me to quit living in fear, eat what you want so on and so forth, it can't be that bad.  So when I tell them the pain has been bad enough to understand why people commit suicide over bad chronic pain I get the eye roll, you baby look, it can't be that bad if you're at work vibe from them.  In other words I get what you're saying.

Boy, did I ever learn a good lesson about people "not getting it" re other people's issues.

I used to get so irritated with people who were unable to control their anxiety and depression. I never experienced it, so I had no patience with those who did. I even went so far as to tell one of my friends to "grow up and get over it" when she was really suffering from depression. She tried to explain what it was like to me, and although I was interested and tried to understand, I just couldn't. She said there were no words to describe the feeling. So, I figured she (and others) were just being totally self absorbed and needed to get over themselves.

Then I became sick with Crohn's...and all the anxiety and depression that came along with it. That's when I finally got it. And she was right. There are no words to explain what depression or anxiety feels like.

I was mortified re how I treated and thought about those who did have depression and anxiety. And once I experienced it for myself, I called my friend and apologized profusely. She was very gracious and actually helped talk me down from plenty of panic attacks.

I no longer seem to have many bouts of anxiety or depression, but I will never again underestimate somebody else's misery...whether I understand it or not.

I have some very high energy friends who don't understand my crohn's. They get irritated with me when I decline invitations to go out. For some reason I can't be around high energy people when I'm feeling low energy myself. And I'm okay with that. I feel it's my body telling me to lay low until I feel better.

I also no longer feel obligated to rise to everyone's expectations of me. I know people don't understand and I don't expect them to. But I no longer knock myself out trying to explain either.

But yes, it's very true about people not being able to understand until they have walked a particular path or have had the same experience.

I was at a friends house a few weeks ago with a few other friends. It was getting to be close to 10pm so I said I was going to go I was tired. One friend said how are you tired you didn't work all week like me. It wasnt the first time this friend has made a comment like that to me. I've gotten what do you do all day you must work for Facebook by now. I was so annoyed I said to her when she asked what I did all week and of course this one week was a really bad week and I almost didn't evne go to my friends but decided to go. If you only knew what I went through all week you would wish you never asked. I said I may not work right now but sure wish I could and would do anything to have your job and wake up feeling normal and go through the day feeling normal and you can sit home all day feeling like death. She said back to me you don't need to get so upset over this its not a big deal. Told her its not a big deal because you will never understand. Now this same girls boyfriend had the "flu" if you even want to call it that in July. I was out with her and he called complaining and whinning saying he needed to go to the ER. I grabbed the phone asked him what was wrong and how long. He had the runs for not even a full 2 hours and was saying he felt like he was dying and was dehydrated. I told  him to suck it up and he won't die from this. Drink fluids and you'll live. I told him to go to the ER if he wants to be the talk of the ER for being 25 and needed help after not even 2 hours of runs every 30min. So annoyed with these two friends they just don't get it.

On more than one occassion I've had total strangers come up to me and say, " OMG you're so skinny !" (with a disgusted look on their face). Can you imagine what would happen if I went up to someone out of the blue and exclaimed "OMG you're so fat !" I think I'll do it one day....

I think next time I will say, "Gosh, you're so very, very fat.  How do you do it? Tell me your secret. I want to be fat like you."  I'll let you know how that conversation turns out.  I'll probably get arrested !

 

Walk a mile in my shoes is a nice way to put it. I feel sometimes like telling them to take a long walk on a short board over the Mississippi river. It's all so simple to them to come up with cures and treatments when they dont have a clue. But being a nice southern gentleman I keep my mouth shut and smile.