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Did you know "You are lucky." ????

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Ulcerative Colitis
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Posted 11/4/2013 1:12 PM (GMT 0)
Sorry for another rant but this one burned me up...

This weekend I was told by a relative "You are lucky, because you can eat whatever you want and not gain weight."

On what planet is it considered socially acceptable to say something like this?

Why don't they tell a paraplegic they are lucky that they don't get tired of being on their feet? Or someone on chemotherapy that they are lucky that they don't need to wash/style their hair???

My response, which may not have been entirely appropriate was, "Gee I don't feel so lucky when I am s$&%ing pints of blood, vomitting, and trying to find a position to sleep in at night where it doesn't feel like I have a knife in my side, but maybe I am just a pessimist."

Like I said... sorry for the rant.

Posted 11/4/2013 1:24 PM (GMT 0)
Good for you! Your explanation of how you really can't eat anything you want and graphic detail is a perfect response of how it really is.
It's hard for many to understand what you are going through with this problem. If it was named HDBMC or horrific diarrhea with blood, mucus, and cramping, people might refrain from making the insensitive comments that they do. Ulcerative Colitis is just too nice of a title.
Posted 11/4/2013 2:00 PM (GMT 0)
Yeah, I can top that. When I opted to go for jpouch surgery due to rafractive UC, I had a friend tell me that I was lucky because I would never be fat again. I never understood her comment; the colon isn't what makes people fat? Nevertheless it was a very stupid and ignorant comment.

Sue
Posted 11/4/2013 2:11 PM (GMT 0)
Sue, that is awful?!?!?! What did you say?
Posted 11/4/2013 2:15 PM (GMT 0)
It's sadly not just ignorant relatives or friends. I was with someone who had her colon removed and was discussing how bad my symptoms were and that I couldn't eat the baked goods (which I love) on the table near us. She literally picked up a danish started eating it and said Yummmm, this is delicious. I just looked at her and walked away.
Posted 11/4/2013 2:16 PM (GMT 0)
Adventure, you are right about the name. I feel like Chrons Disease is at least labeled in such a way that most people have heard of it.

There are more people with UC than Chron's, yet fewer people have heard of UC, which is why when I do tell someone about my condition, I usually ask them if they have heard of Chrons and then say I have something like that.

IBD is no good either, because most people think of IBS.

In the spirit of raising awareness, we need a better name for UC.
Posted 11/4/2013 3:41 PM (GMT 0)
I totally know how this feels. i'm glad you said something because I can't hold back my thoughts on this either!!

last night, my sister was complaining about how I always get random gifts in the hospital because I have a lot of family/visitors. I was in the hospital for her birthday in july, but people brought me get-well presents and forgot about her birthday. she was like "you are so lucky you get all this stuff."

and i'm like "jenny, I would trade all of these gifts to NOT be in the hospital, EVER!"
Posted 11/4/2013 3:52 PM (GMT 0)
The weight thing is unbearable. People can be real jerks, that's all I can say. I lost twenty pounds in the hospital. When I came out looking like a skeleton, my relative's comment was "Well, let's see if you can KEEP it off!"
Posted 11/4/2013 4:08 PM (GMT 0)
Yeah, I feel really lucky. NOT! Some things are worse than others and you can be lucky in an unlucky situation, but that is ridiculous. I don't think getting any disease is "lucky!" People can be so stupid sometimes. Uckk.
B
Posted 11/4/2013 4:25 PM (GMT 0)
So ignorant really. And hate to tell you this but not all of us drop weight like crazy. I sure don't.
Posted 11/4/2013 5:24 PM (GMT 0)
I have crohn's and when I first got sick I had a "friend" say how lucky I was because it would keep me skinny through out my life...she knew what CD was after I told her what it was and that was the comment she made...some friend eh. People are idiots.
Posted 11/4/2013 6:03 PM (GMT 0)
I have avoided one of my closest friends for the past few weeks after going through the camplyobacter infection due to her ranting about how I need to eat...I don't wish for anyone to get food-poisoned, but maybe some people need to know how it feels for awhile. She was so rude about the way she kept on about how much weight I've lost, which I don't mind the weight loss now because I'm just happy I'm better, but I don't need to be treated like I have an eating disorder after what I went through....and I'm SURE not going to go pig out on desserts just to make this person happy!
Posted 11/4/2013 7:33 PM (GMT 0)
"Lucky" is up there with "cure"....

Before diagnosis pre bleeding, I mentioned to my EX-doctor that I didn't know what to eat anymore. She said "you're lucky you don't live in Biafra.
My response was "if I did live there, I'd have been dead long ago". Her response was "I guess you're right".
She's also the doctor who told me after the barium enema test "you're lucky you don't have ulcerative colitis. Those people suffer horribly"...

Thankfully, she sent me to a GI....

I hate the comparison game people need to throw out to make US feel better....and while it's good to gain perspective, it's nice when people look at the whole picture rather than just a part they think we should be grateful for.

I don't mince words, and I know I would have suggested that the person take a bar of Ex-lax so that we can enjoy being "lucky" together...of course, adding in a few expletives would be my style.

q
Posted 11/4/2013 8:16 PM (GMT 0)
The "silver lining" and the “glass half full” crowd are admirable, and I wish I could do that. But when I'm crying on the toilet it’s really really hard to.
Posted 11/4/2013 8:19 PM (GMT 0)
A friend I had not seen in a while said to me wow you lost a lot of weight and how did I do it. I told her I have UC .
She then said oh. My cousin had the same thing. I asked her how was her cousin doing? And she said "she died" ! turn
Posted 11/4/2013 8:28 PM (GMT 0)
Charlie3, Well, maybe not from UC.....did you ask how she died?

q
Posted 11/4/2013 8:37 PM (GMT 0)
Quincy yes she did say her cousin died from UC!! I was at a loss for a reply at that point. But is was awful of her to say it .
Posted 11/4/2013 8:50 PM (GMT 0)
complications of whatever disease can happen....for various reasons. She should have clarified, especially knowing that you have UC.

when I was first diagnosed, the nutrition store owner's wife died from asthma. Now, I have asthma, and I know that things can happen. I said "you mean complications from asthma?...was she on meds?".
He commented that she had forsaken all meds and was going to heal herself. She also ended up with lung infection because of whatever (can't remember).
I said, "sad, but there are more reasons for why she died, not just asthma".

We all risk something when we have inherent/idiopathic/chronic disease that requires treatment...we also have to be smart in our decisions and know what we're dealing with rather than thumb our noses at the obvious. Sometimes things take over quickly, other times it's a much slower process, but with the ability to intervene sooner than later.

q
Posted 11/4/2013 9:15 PM (GMT 0)
I feel your pain.

With relatives, the first thing I try to do is bridge the gap so there's a better understanding of the condition. If that doesn't work, I just ignore or avoid them. No point in dealing with unsympathetic people who are too stupid to understand. Relatives, even if they are family, should know better.
Posted 11/4/2013 10:37 PM (GMT 0)
I AM lucky that my family and co-workers are very understanding and supportive and don't make stupid comments. I do have friends that say things like, oh wow you look great, what are you doing?! ....really? my sunken cheeks is a good look? I do try to take it as a compliment as much as I can but it gets really old.
Posted 11/4/2013 10:54 PM (GMT 0)
I wish I could eat whatever I want and not gain weight. I've been battling to stay fit lately, even with UC. I don't think healthy people understand what it means to have an illness. I also understand that having a figure that isn't what you want it to be can be debilitating in some ways. There was a point when I was on pred where I would have preferred dealing with UC symptoms than looking the way I looked. I felt so low and my mental state was terrible because I hated the way I looked. Probably just have to feel bad for people who say things like that - either they are that consumed with appearance or they are that clueless.
Posted 11/5/2013 12:07 AM (GMT 0)
I'd probably say "I AM lucky!!! Sorry for you and good luck with your diet! Excuse me while I grab a donut!! HAHAHAHAHAHA!"
Posted 11/5/2013 12:14 AM (GMT 0)
Be nice John!
Posted 11/5/2013 12:14 AM (GMT 0)
I went in for a check up including having my cholesterol checked which was perfect. She (the PA) actually had the gall to say "Well at least that is one good thing about having UC. It keeps your cholesterol good." I wanted to sock her lol

But I've had that happen to where someone will say how lucky I am that I can't gain weight. I am quite blunt because that comment angers me. I just tell them that I will gladly trade bodies if they want to put up with peeing blood out of their tush while crying in agony because it feels like an alien with razor sharp claws is trying come out their large intestine. After years of having this, I have no patience for people like that.
Posted 11/5/2013 1:15 AM (GMT 0)
Ya know, I kind of like John's approach.  I"ll have to keep that in mind.  I admit though only a few people know I have UC.  My sisters in law only want to know my "weight loss secret".  The irony is that they are envying the fact that I am slim. If they only knew......

B

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