people say the most foolish things

Ugh, sounds like my inlaws. They make comments like that too. Before we knew it was Crohn's my husband even said a few things like that. Felt I wasn't doing enough to get "cured". And why didn't I just go to the doctor and "take care of it". After seeing so many doctors, that was the last thing he needed to say. Thankfully since then he's come to understand better. Sadly a lot of people never do.

Tell her we all get it, and no it's not her fault, and these people should be ashamed of themselves.

Oh, my goodness. Silly things I've been told:

"I wish I could just lose weight so easily!" (yes, you fool, now try losing weight when you are on a high dose of prednisone).

"What did you eat?" (When I'm having a flare)

"Oh it can't hurt THAT much." (Right before going to the hospital with a blockage)

While I've never had the diaper comment directed at me, I've been to sites where people are up in arms about someone with a digestive disorder using a business' facilities......they really just don't understand that we really CAN'T wait.

I recently found out I had gall stones.  I was waiting to tell one girlfriend of mine about it just because I knew she'd say something that would irritate me, although I know she truly wouldn't mean to irritate me.  She's just the kind of person who likes to "fix" problems and quite frankly thinks she knows the answers to all problems.

Anyway, a week or so after I found out about the gall stones, I was telling her (and another girlfriend) about needing surgery to remove my gall bladder because of the gall stones.  Then we switched topics because the other friend asked me about my visit with a cousin I'd recently had.  I said I'd taken my cousin out for pizza "that night"...and the first friend raises her voice at me: "WHAT'D YOU EAT PIZZA FOR IF YOU KNEW YOU HAD GALL STONES?!?"  Ugh...here we go...I quietly said I'd eaten the pizza 3 weeks PRIOR to knowing I had the gall stones...she was like, "Oh...but still - you shouldn't be eating any pizza anymore."  Well, thanks for the advice!!!  Oh and BTW, my surgeon says I'm not on any restrictive diet after my surgery...oh yeah and BTW, I don't have any trigger foods...but you really don't know what I mean when I say that, do you?!  Yeah, I didn't think so.  Grrrr!

Of course, now she thinks that by my getting rid of my gall bladder, all of my Crohn's symptoms are just going to go away.  I don't know what part of CROHN'S DISEASE I haven't explained to her...but I've learned you can't get someone who has NEVER had an real health problems to understand this disease...heck, many of our own doctors don't understand this disease!  That's the whole point that some of my friends don't get.  There's no magic pill.

In FACT, this SAME girlfriend I'm talking about actually suggested and wondered OUT LOUD why I didn't just go ahead and have all of my intestines removed if it would give me a better quality of life.  I have moderate Crohn's...was in remission for almost 4 years.  I just didn't even know what to say to that exactly except that I wasn't going to have all of my intestines removed without trying every single possible OTHER thing first.  I haven't even had to be on Remicade/Humira/Enbrel yet!  I'm not THAT bad off yet.

Plus, what she ALSO doesn't get is with Crohn's Disease, it is NOT curable.  Take out all the intestines and close up the anus and Crohn's Disease can STILL manifest in the stomach, throat, mouth, eyes...cause massive fatigue, arthritis, pain...etc, etc.  It isn't curable...YET!

How do we teach those closest to us to have EMPATHY?!

oh man, im sorry. i actually laughed when i read "why I didn't just go ahead and have all of my intestines removed if it would give me a better quality of life."

thats so stupid i cant even think of a witty way to phrase how stupid it is.

While we are complaining about not being understood, I would like to add my two cents, plus a memory from my past. 

1- What I hate are the positive thinking people who assert that if you just try hard enough, you will be able to heal yourself with your thoughts.  Now I do understand that ruminating on pain/disability will make it harder to do things, and sometimes you have to give yourself a pep-talk to help your attitude.  But that is a far cry from the very harsh thought that you have "caused" your illness with your own weakness .  That just makes me feel like I'm not trying hard enough to be better.   I am "good" and I don't appreciate being "blamed" for my illness. 

2-I have had Chron's for many years, but only diagnosed recently.  When I was younger, my Mother would get mad when I had to go to the bathroom after dinner.  "Clear the table first, then go to the bathroom!!"  Well, I had to go first, and she thought I was just being defiant.  "What's taking you so long??? Did you fall in?"

Well, I've got you guys, and I am happy to be understood......

Pix

The one thing I love most about this forum and reading the posts is that I never feel alone afterwards!!!! :)

Several weeks back I was talking to my mother in law about being sick. She was asking what I thought was wrong and I said I thought it was a flare up but I wasn't really sure because I've only ever been really sick or compeletely normal since finding out I had crohn's in 2005/06. I was explaining some things to her and expressed a fear/anxiety about another resection surgery. When I had my first I only had one child who was 21 months old but now I have a 3 1/2 yr old and a 7 month old to take care of. She said "oh don't talk like that... you won't have to have any more surgeries". I tried explaining to her that there is no cure for crohn's and once you've had one resection there is like a 50% chance of having another at SOME point in your lifetime. She didn't get it...   She then said "well they can't just keep taking chunks of your bowels out. eventually you won't have any left" and I was like umm yeah they can.. and do in people who need it. She totally argued with me that you can not continue to have surgeries and still live.

Honestly I wanted to smack her..we don't get along the best to start with. BUT I can't stand people who tell me about MY disease, what I should and shouldn't do ... like I don't have a clue. I've been living with crohn's for over 3 years dx'd and 10 years un-dx'd. Although this ended up being my gall bladder and not crohn's, I KNOW my body better than anyone else. GRRRR!!

Glad people here understand... it makes my life less stressful sometimes!

Isn't the human animal a funny little species? We're all alike....even the really smart ones. If we don't know or understand something we will make something up to ease the strain on our ignorant little minds. I've heard that we only use 20% of our brain but I think thats pushing it for most people. LOL

about the bathroom problem,--Sometimes I find it is helpful to make a statement or command rather than ask a question.  Instead of "Can I use your restroom?" say "Please show me the restroom."  If they say something about how it is broken or some such thing, ask, "Where will you 'go' today?"  I find that a direct statement, without any hesitation, apology or expectation of a struggle will lead to results very quickly.  I am a boss at my job, and I find that polite directness yields results the quickest, especially in a somewhat "adversarial" situation. 

What do you all think about this?

Pix

If ONE MORE PERSON in the non-Crohnie world compares Crohn's Disease with having the FLU, I'm going to buy a billboard in every major city that says, "CROHN'S DISEASE:  It's NOT like having the FLU!"

I always say "it's almost like Norwalk" The constant cramps, pain, vomiting and complete loss of bowel control can happen any time or all the time or heck, even all at once! That usually get's 'em.

Sometimes, I think people really cannot handle the truth of what we are describing, so they attempt to belittle it so it doesn't seem as scary to them. Also related, some people do not like thinking of the seriousness of this disease and attempt to minimalize it or throw out what they think is 'helpful advice'. On a few occasions, I have had people try to 'compete' with me over whose health concerns are more important or life-threatening, like: Crohn's and surgery vs *biopsies* from their upper or lower endoscopy and how scared they were. 0_o

Most recent was from my Husband.
Now, I readily admit I fall into one of my above listed catagories because I find it very difficult for me to imagine losing my husband to some illness or medical problem so I tend to deliberately NOT worry over it. I also think he has exascerbated (sp?) this problem by over-reacting to EVERYTHING he goes to the Dr about.
He had his heart checked out due to quitting smoking and family health history. He was going to die. All tests were great and showed no problems. In fact, Doctors were pleased with how well he looked.
He had some pain in his upper/right abdomen (Dr suspected gall bladder) and had an ultrasound. He was going to die. Tests came back that everything looked fine except for some cysts on/in? his kidneys.
Now he goes to see a nephrology specialist. Because he is going to die. Nevermind all internet information points to kidney cysts as being unremarkable, he is going to die (remember?) and the Dr tells us: *drumroll* cysts are unremarkable.

I sometimes wonder if he reacts this way in an effort to get more of a concerned/worried/panicked reaction out of me? Maybe I should show more fear of losing him over every little hiccup, cough or sneeze? I guess I'll treat him like a 5yr old, tell him (with a very serious expression on my face) how worried I am and how traumatic, dire and serious the situation is while I offer to get a Scooby-Doo bandaid to mark the occasion and make things all better.
Gah! Is my snark showing?
heidi

Oh Beca I am so sorry. I am glad that someone called that teacher out on inappropriate behavior, even if they never apologized.

Arr... I too am tired of people's comments about crohn's, especially when the comments are about faking or fix it, etc. Only 8 months into a new job and it already is starting. Think I'll get a T-shirt that says something like "CROHN'S: Just because I look okay doesn't mean I am." or "CROHN'S: Don't make comments about physical ailments you know nothing about."