Newly Diagnosed - Dealing with Negetivity.

[mzlateah]

Hi! I am newly diagnosed with crohns. (May) I have been reading the forum for a while now and have decided to join. My issue is that no one believes I have crohns. They think I am a faker and not in pain ALL the time. How do you all deal with this type of situation?:sign0144:

 

[nogutsnoglory]

That would be really frustrating. Who are these ignorant people? Can you explain that Crohn's is often an invisible illness that involves pain, difficulty eating and lots of time in the bathroom? I often use the pacman analogy that the little pacman (Crohn's) is eating away at my guts.

 

[nevilletanner]

completely with you on this -
my oldest son has said in no uncertain terms that i fake it and there is nothing wrong even though he was there when i was in hospital and when i have head my head stuck down a toilet throwing up for hours on end or when i am stuck in bed for days due to the pain.

think its just a case of him thinking that it cant be real cos its his dad ..

i just let him get on with it as i know deep down he does know the trueth.

 

[crywil]

I know how you feel. It's really hard when your family doesn't believe you. Best thing to do is take care of you and forget about the non-believers. As long as you know that's all that matters. You don't need the added stress.

 

[DustyKat]

Hi mzlateah and :welcome:

I am so very sorry to hear that you are having to deal with this. :hug:

Having and invisible and low profile disease surely is a hard road to hoe. Having Crohn's is hard enough without the added stress of not being believed, that is just awful.

This reminds me of an article that has been posted here in the past and I know Cat is one member that has, thanks Cat! The website is very aptly named ButYouDontLookSick.com and the article is called The Spoon Theory...

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

...I know you will have no trouble relating to it and I hope if those that disbelieve you also read it they too might have some idea of the struggles you face everyday of your life.

Good luck hun and welcome aboard!

Dusty. xxx

 

[Mr D.]

I am newly diagnosed myself and I have had some doubters. People telling me that it was just a manifestation in my head, and that I was stressing myself out over nothing, etc. I think ultimately if they are people who aren't important to you or people that aren't going to support you, then let them think what they may. It's going to be difficult if they are people you rely on, but I guess you could try and educate them about what Crohn's really is and that just about anyone can get it. I can imagine it would be quite hurtful to have people labelling you a faker. I hope things pick up!

 

[mzlateah]

Thank you all for your support. It is difficult to deal with this and you are right. The added stress is not needed. I'm gonna focus on getting better. Got a CT scan friday. Hopefully it doesnt show any blockages. Ive had some pretty harsh pains lately.

 

[DustyKat]

Good luck for Friday! :goodluck:

I hope you don't have any blockages too! Please let us know how you get on and if you have any questions please don't hesitate to ask.

Dusty. xxx

 

[zilla7777]

I hope your scan goes well! Welcome to the forum, I think it could go without saying that there are so many people that can relate with your situation here.

I remember when I was first diagnosed people were saying I'm bulimic, or that it was all in my head or that I just stress. It took so long for even my family to consider it as a serious thing. It sucks, but I guess the benefit is that you can appear normal when you want to feel just that.

Hang in there, we're all here to help!

 

[Johnwc]

A strategy for some people, not for everyone... Google two pictures, show them normal bowel and then crohns bowel. When they see the red raw blisters talk to them about washing that area with the acids in your stomach. they'll catch on.

 

[If*]

Not too sure what 'they' want us chronies to look like, lol. Funny that even if and when one gets all skinny bony, emaciated, 'they' often think you just need to eat more.
You have to ask yourself, are they really worth your energy? Many lack skills in empathy, support and fail to have any knowledge of what the hell this even is. I have found the least supportive, that question your being unwell to be the biggest whiners and often feel it is some sort of competition.
They end up being not worth the effort. What's important is how you feel, your well being.
Strenght to you! Best for Friday!!

 

[mzlateah]

They assume that we "chubby" crohnies don't look sick I guess? Lol

 

[smiley95]

The Spoon Theory is great to use. People still don't get it completely, but it gives a bit more of an understanding.

 

[mzlateah]

I just read it. I saw myself in her. It seems like I do count my "spoons" daily. Somedays I can't even go out because of the constant "urge". Thanks for that article dusty! I'll use that to explain my situation better.

 

[Crohnsblogger]

I'm completely with you on this too. When I was diagnosed it was the same way for me too. It does get better. I just repeatedly told people what Crohn's way, what it did to me, what foods I had to avoid, that kind of stuff. It got repetitive for me, but people started to understand it isn't an easy disease to live with when you don't know what to expect in an hour, nevermind the following day. Keep your head up


- post made via iPhone
- Lindsay Percy

 

[davej]

When I first got sick a lot of people suggested it was just stress, and I needed to get my head right. That line of thinking kept me from getting treated for an extra very painful two weeks. Don't listen to people who aren't trying to help, listen to your body and trust yourself. Stay positive!

 

[mzlateah]

Hey! Just an update. My CT scan came back with thickening in my terminal ilieum. I also was told I have AVM's as well. Is this the most common area for crohns?