Oh no she didn't! (a little venting)

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Manzyb

Manzyb

Joined
Nov 5, 2009
Messages
1,605
I have recently made a new friend and she's slowly been introduced to the wonderful disease that Crohn's is. Today, she was asking me how my doctor's appointment yesterday went. Then I get the question that kind of made steam come out of my ears: "So pain, diarrhea, vomiting. That's all your disease is?" I immediately got kind of pissed and got defensive. What do you mean that's all your disease is? I am pretty sure that those three things in a person's everyday life is enough to have to live with. I know that people don't understand, but good gosh, its so frustrating.

I'm sure that something similar to this has been said to just about all of you!
 
They have no idea how debilitating Crohn's can be. Have your friend read a couple of my friends blogs who have been devastated by Crohn's:
http://www.thechroniclesofcrap.blogspot.com
http://sccsdecker.blogspot.com/

I myself do not have a blog about my near death experience with Crohn's but the links above will be enough to express the high risk that Crohn's places on your life.

I have found that explaining first that Crohn's is an auto-immune disease helps people understand that this goes beyond diarrhea. Especially when you explain that MS, Rheumatoid arthritis, and may other disease are also auto-immune diseases treated with the same types of medications.

My family was terrible about it when I was first diagnosed. They were convinced that it would be fixed with a change in diet. Not even close! How do you explain the symptoms when I go for days without any food and can't even keep water down?

I hope that some day lesser known disease will be better understood. We focus so much on Breast Cancer but we should let people known about the high risk for developing colon cancer.
 
AWFUL! It's amazing how clueless people are. If she had the stomach flu for 24 hours with pain, nausea, diarrhea, and vomiting she would be feeling like poo and wanting it to end...............add that to daily likfe. GEESH. some people just dont think before speaking!
 
Some of my friends don't get it either, like when they've had a heavy night and tell me I just wouldn't understand how upset their tummy is and how much pain they were in!
 
Some people drive you mad don't they grrrr. They're just ignorant, but even if they don't understand a persons illness it's still no excuse for being so insensitive.

I had a friend who constantly worried about her weight (one of those people who convinces themselves they don't eat alot when the eat like a horse!) and she said I was lucky just having an ileo as I don't know what it's like to live with a weight problem and what it does to your confidence. Jeez I nearly slapped her!!

Try not to let her get ya down

Lyndsey xx
 
Wow! She said you're lucky that you don't have to worry about a weight problem! That's crazy. People are very insensitive and somewhat ignorant sometimes. I don't let it get me down, I kind of laughed about it later, but at first I wanted to punch her. That might be a bit of roid rage in me though!
 
My best friend recently made the mistake of saying she was "jealous" of all the delicious things I get to eat. ;) Haha Yeah low-residue/ low fiber...real delicious.
 
People are SO insensitive! I almost get embarrassed when I have a 'good' day because some people look at me as if to say 'see, you're not that bad.' Crohn's is very misunderstood!

Manzyb-next time a friend says something so silly, just puke, or better yet, poop, on their shoe!!
 
I was in the middle of the worst flare up I've ever had... where no poop just blood every hour, on the hour, all day every day. Could keep ANYTHING inside me. So of course I was losing weight like crazy.. And a friend of mine said "I wish I had what you had, so I could lose weight too!"

Um.......................................... ???


Yes. Very misunderstood.
 
i have been unable to work for 8 years because of my C. friends don't see me when im having a bad day, and even when they ask how i am, i always say fine because if you told them how you really feel they wouldn't understand because they cant see anything wrong with you. i have been told i should get a job when someone sees me working in my shed when im having a good day which only last 2 hrs then fatigue sets in. recently i was at the post office with my arm in a sling for the shoulder pain, i hadn't filled out the form correctly and the lady at the counter said she would do it because i had a broken arm and she would usually send people to the back of the cue for that. i thought to myself that my arm was the least of my problems, but it goes with what everyone here has being saying, if you don't look sick then you cant be.
if only they could spend a day in our shoes.
 
Chrismac- My mother-in-law said that to me before! I couldn't believe that she said it. I don't get why people say the crazy stuff they do.

Trev- I have learned to do the same thing and just say I'm fine! Not sure why I made the mistake of actually talking about it yesterday. Seems like people are always saying "you don't LOOK sick". That's probably the most frustrating line, because sometimes it feels like they're automatically judging and maybe not believe that you have something wrong with you.

What can you do!? You definitely have to grow a thick skin and laugh about things!
 
I honestly don't think people mean to be so insensitive. It's just a lack of knowledge about the disease and how debilitating it is.

To the friend that thought "pain, diarhea and vomiting" didn't sound so bad... I would respond, "Well, imagine the worse stomach flu you have ever had - it's like that x 5... and I never know when it's going to hit me." I would follow it up with "Woud you like to trade?" and that usually makes people think twice.

I feel it's our obligagtion to educate others about Crohn's & UC. Only thru greater understanding will there be more awareness and acceptance (and hopefully research and a cure!).

I agree that a good approach when explaining CD & UC is to start with "Crohn's Disease (or UC) is an auto-immune disease like RA or Lupus, the body's immune system attacks itself. In RA, it attackst the joints. In Crohn's, it attacks the digestive system." This simple explanation says a lot.

BTW, I have had those annoying comments too and it is really frustrating!

- Amy
 
Chrismac said:
I was in the middle of the worst flare up I've ever had... where no poop just blood every hour, on the hour, all day every day. Could keep ANYTHING inside me. So of course I was losing weight like crazy.. And a friend of mine said "I wish I had what you had, so I could lose weight too!"

Um.......................................... ???


Yes. Very misunderstood.
Click to expand...

Someone said that to me too. I quickly told them, "no, you don't." Of course, i am one of those crohnies that is actually overweight. So when I lost weight so quickly, most people were saying something about it.
 
I was talking with a co-worker who takes Methodextrate for Arthritis and our supervisor was confused about how we could be taking the same kind of treatment for such different disease. I told her that the problems were much alike. "It is just that its attacking my guts instead" and she kind of seemed to get it all of a sudden. OMG she says! Frig that must hurt! :ylol2:
 
I was telling my mohter in law about my symptoms and side effects of all these lovely pills and she had to put her two sense in....."my diabetes meds give me loose stool, so I know how you feel!" OMG, I was so upset, she doesnt know how I feel, she doesnt know my agony and suffering....how dare her to compare herself to me......some people just dont know when to keep thier mouth shut!!
 
Yea, its funny when people think loosing weight is a good thing, even if your on the toilet everyday all day.....Ive lost 65 lbs in 6 months, people always tell me how great I look after just having a baby 7 months ago....if they only new....Ive been the sickest Ive ever been in my whole life....if loosing weight come like this....I dont want to loose anymore~
 
As Amy said some people have a lack of knowledge about Crohns.

Most of my close friends do understand, not all of them though. Most of the time besides when I look exhausted which is often, I look like a healthy person. Some do not know what goes on behind closed doors, or that I try to mask my symptoms and pain as much as possible not to seem like a p.i.t.a!
 
people just dont get it!unless they live with it or are close with someone who lives with it.But hopefully things are getting betta as it gets more coverage.some people are just ignorant to how hard it is thats why this place is so good finally pople who get it! :)
 
Someone told me once that I was, "hiding behind my disease." Because I wasn't able to work at the time due to symptoms and they just didn't understand. In my mind, everyone like that gets slapped (the visual I create in my head feels so good).
 
Yes Crabby! I had a "friend" one time tell me that I was using my disease as an excuse to not go out and "party" with her!

I agree, people are ignorant when it comes to Crohn's and many other diseases. It is still frustrating though. I generally like to pretend nothing's wrong to avoid any questions or possible comments.
 
In some ways we perhaps are our own worse enemies, but thats not a criticism. I can tell from what i have read of those on here, that none of us play up our problems and we battle on trying to minimise the disruption it causes to normal everyday life. So we hide our pain, perhaps don't discuss things that are a bit taboo and would almost crawl to school/work/uni just to prove to ourselves and others (though mostly ourselves) that we can do it. Plus unless for those who do lose weight drastically, there is no obvious outward indicator. Then when diagnosis comes, no-one really thinks much of it, because there doesn't seem to be much wrong with us anyway, except a bit of a 'dicky stomach' and everyone has them, right???

Unfortunately they don't realise that its not something that occurs 2 or 3 times a year but numerous times per day or per hour!
 
I had a best friend of 15 years tell me after I was diagnosed with Stage 1 colon cancer in the hospital that being my friend was just too overwhelming and she coudn't take the roller coaster anymore; she walked out on me, just like that.

My mother in law for years thought I really had an eating disorder because when I'm flaring I get really underweight, then they put me on pred and I gain 50 pounds. She works at a hospital and actually asked one of the docs about it; he explained it to her and showed her a picture of what Crohn's looks like. Now she understands it alot better.
 
That's it, isn't it, in a nutshell!
showing someone a diagram or picture of Crohns, and then they get it!
I got a rope, and curled it round and round, I showed my ignorant 'friend', this is my small bowel, this bit sticks to that bit, then that bit sticks to this bit, yeah? and when it does, I get blocked, yeah? nowt can get thro, i chuck up, I sit on the loo for hours, both ends, same time, in agony, yeah?
'Is this wot you want? to lose weight, you thick cow'!!!
 

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