"It could be worse"

Boy, she sounded like a real angel of mercy! (sarcasm) I just don't get people sometimes...

Wow. 

That story reminds me of the last time I was in the hospital.  I was put on the cancer floor I believe because the GI floor was full.  My nurse was like "well at least it doesn't stink on this floor!"  I was like..."You do know I have Crohn's right? I'm also extremely offended by your comment."  She responded with "Oh I'm sorry" *shrugs shoulders*

Normally I would have laughed it off, but after spending 5 hours in th ER, and 2 hours laying in a bed in the hallway waiting for a room I was not in the mood for jokes.

If they could have Crohns for one week they would know what we go through.

I try to remind myself there are "worse" things, but what a rude, horrible thing to say to someone. I would be super angry too.

Overall I really believe that Crohn's is over-generalized. I have a friend who said he wanted to learn more about the disease so he went online. He'd thought enough to choose the Mayo Clinic site to read from, as a reliable source. But, how simple can the disease sound!? "D, pain, fever..." Most people think, "what's so bad about going to the bathroom a lot?" but, they really just don't get it. I know we talk about that a lot, but it is so frustrating. I pointed him to the CCFA site and the forum on there. (Didn't want to share all these thoughts... ;-) My identity is not all that hard to pick if someone knew I posted here)

How in the world can we possibly help people understand that it's more than "going to the bathroom a lot?" When we compare bathroom time to giving birth, doesn't that tip someone off that's it means *more*?? I mean, really... If they had the flu years on end... When going to the bathroom means excruciating pain, the fevers are constant, the fatigue makes it hard to get out of bed every day, but the second we wake (a lot of us) have to *jump* out of bed to run to the bathroom... I had my step-mom say about driving somewhere in the morning, "We can stop anytime you need..." (I was trying to say we had to leave later in the day) They don't GET urgency. I mean, when I realize I have to go, there is *not* time to get to the next exit, find a gas station and walk to the toilet.

It seems to me that, even on the Mayo Clinic site, this disease is *way* over-generalized in the way it's described!

So sorry you had to be submitted to the callous nurse! And, MAG, that is *so* offensive. Maybe that nurse should have been reported! ;-)

I went and saw my chiropracter. It came up in conversation about my Crohn's disease and how I had to have minor surgery for an abscess and fistula.

He replied "Better you than me."

Haven't been back since.

When I hear comments like you all have mentioned I pray that those people never come down with Crohn's disease or any other IBD. They could not walk a mile in our shoes.

I wouldn't wish this on my worst enemy not even for one week. And I agree -- a lot of the disease is understated.

There was a letter to the "Annie" ladies a few weeks ago. The lady writing had cancer but did not have to undergo chemo. Because of that her family decided she was not that sick and perhaps never even was.

 

How rude for someone to say to you! I'm sorry someone would be so ignorant! Unfortunately, most people have NO clue! I hear it all the time! Right now my daughter is having problems, she has been in remission since her surgery 2 yrs ago. Family members have said, "what did she do to make herself sick" REALLY??? I try really hard to remember that they don't live with an IBD so they don't understand. It's so frustrating that it's downplayed as "no big deal"! I don't know how many times I've heard, "Oh so & so has that and they're fine"....grrr! Yes, it could be worse but I know first hand how individual IBD's are. I have UC, I can some what control it by diet. Mornings are awful for the first few hours of every day I spend it in the bathroom. My daughter on the other hand has moderate to severe crohn's. She has been through so much, it would take a book to explain it all!
I guess, ignorance is voluntary. People don't understand unless they have watched a loved one suffer or they themselves have suffered :(

Wouldn't it be nice to be able to give CD to those who think it's an "al-right-to-live-with" condition. I'm not cruel. I'd give it to them for a week or two, especially to those nurses and doctors who look at you funny when you need help.Grrr...

gden, we are all really sensitive for sure, your nusrse, probably meant that, it could be worse, but not something you should say to any sick person, how did she know that you were once really sick. we have all had awful, really awful things happen to us involving bowel issues, I could write a book on crap that has happened to me, literally. from bile running down my pants into my shoes(happened). I was driving in our back country on freeway going home and I had bad cramp, pulled off freeway, ran a stop sign to get pulled over and ran into bush and dropped mydrawers, only to have chp pull up and yell at me for crapping in the bush, and running stop sign, got a ticket for running stop sign. at least no ticket for crapting in bush. but total embarrasement

I actually flippantly said back to someone who had said something similiar to me "and thank you for the devaluation of my experience and my suffering." Now, I am not a person who uses sarcasm (or at least I try not to), but it just flew out of my mouth, before I even thought of a response.

Navy - I *love* that response... Perfect. I will try to remember it. My favorites were the "eat coconut macaroons" (from the son of a doctor no less!) and "has anyone told you to eat an apple a day?" HAHAhahahahahhaha ;-)

mdf34 said...
You know, we kinda had this discussion awhile back, sorta. If I ever get told that, I will flat out ask what could be worse, cancer? The cancer patients have a better chance of remission, a longer lasting remission, and most times a better quality of life than crohn's patients. So what could be worse? I have that statement firmly in my head, ready to go. Go ahead, push the button! [img]/community/emoticons/tongue.gif[/img]

Heh, I'll have to remember that!

With this disease and especially when I was on pred, my politeness has gone out the window.

While I hate being on the receiving end of such comments from everyday folks, I resist replying because these folks are generally unable to see things any differently. To argue is pointless in my experience.

With medical professionals it is a little different. I agree completely with MMMNavy's comment back - that is exactly what is happening from my point of view. They are devaluing your personal experience and suffering. This is not OK and I am perfectly willing to call them on it.

On the other hand, when I am not ticked off at one of them for being insensitive, I kind of see where the medical professionals are coming from when they say things like that and why they would see it as reassuring rather than dismissive.

When one of them tells me the equivalent of "you should be grateful" - about any kind of illness - I remind myself that they really do see people of all ages who are suffering from things that, short or long term, from their perspective are much more terrible than my son's Crohn's. I think of children/adults with extensive burns, people with Scleroderma, people like my oldest son who has severe Osteogenesis Imperfecta and is severely deformed, had had 17 bone surgeries by age 16, never walked, has triple scoliosis of greater than 50 degrees and fractures bones just by turning his arm the wrong way.

So I try to keep it all in perspective. And I remember that most of us have said stupid, insensitive things that we regretted and wished we could take back the moment we said them.

Patricia