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Gibby87

Gibby87

Joined
Aug 5, 2010
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44
How do y'all deal with the people that think you aren't sick just because you don't try to show any outward signs and the people who think they are doctors?
 
not sure how to answer this, but it p,s me off all the time when people and family think im ok because they dont see me when in not well. if im having a good day and spend a couple of hours in my shed working on a car or bike, people say why dont i get a job, grrrrr, sometimes i wish they could spend a day in my shoes, see how they would handle the cramps and D, plus the side effects of the drugs. one day at work my boss said to help out another employee who had leg surgery, i was also having a bad time, but no one could see anything wrong with me, and i had to help him to make his life easier.
another time my boss knocked on the toilet door and told me to go in my time, not work time, as you know the big D waits for no one. at least more people understand more about crohns now than they did 20 years ago. i dont bother explaining crohns to anyone that asks now. because it makes me feel like a hypochondriac cause they cant see any thing wrong with me. if they are interested they can google it.
 
I've dealt with this a lot since I was diagnosed. People actually thought so low of me that I created crohn's disease as an excuse to quit band because I hide it very well. It got to me a lot because people that were supposed to be my friends were saying this. You know what though? I decided to cut them out and keep the people who support me close to me and I don't really have that problem anymore. Some still think that, but I don't care anymore. The people that really love me and care about me and want me to succeed know that I'm just trying to fit in and make as much of a normal life that I can, fighting this disease.
 
I still struggle with this, I find it very frustrating, the only person who I find understands is my dad cause he has seen me through the rough times. No one else seems to understand and I have given up trying to make them. If your close friends or family don't understand then they should take the time to read up on it.
Jo x
 
I pick my battles because I don't need the stress. If its family, like my grandpa who's apparently a doctor even though I could have sworn he was a mechanic, I smile and nod and only add information that I know wont inspire debate or more talk on the subject. If its a "friend" (in quotations cause real friends don't question you), then I'll get in their face about it and put them in their place. These are the times that I just let myself blow up and completely lose control. Probably not the best way but it also depends on what they say. I blew up at my sister once (who also has crohns) because she wasn't being understanding. Just because you have the same disease doesn't mean yours is as severe. As for coworkers, bosses or Professors, I'm very straight forward and leave no room for debate and also mention my worst days possible so they don't speak of it again.
 
I usually tell them that's nice and just go about my business. Just smile and nod. I almost want to ask people "Do you want me to take my colon out and show you?!" But, that would be mean and weird.
 
I think what makes it worse is when you're having a bad day, no matter if you are having a flair of any magnitude or its just a miracle you get out of bed and go to work because your joints are so stiff and painful and/or you have the Crohn's pains to add to it, or whatever the case be and people think you are faking it and you just want to hit them in the face because you'd wish you could just show them to make them shut up. Then you have the people who actually show some interest in you and actually care for you and they ask you to describe the pain in the best way you can. That's an impossibility.
 
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I dont have crohns too bad, very lethargic, which makes me irratable. Stomach pains when ive eaten something "wrong" Ive told work mates and parents + bro only) Yet i rockon they dont understand that its not an on or off thing. I can do 5 days of work ok, 4days of work at a push or none at all.. or somethin in between. For me Its hard to understand when/why i get ill, ppl who have no clu its going to be a lot worse
 
i am going through this real bad right now not even my wife belives i am sick with chron's she thinks i am just making it up to get drugs.living with the inlaws they dont belive me they think i am just a lazy sob that wants to still around all the time doped up on medince. i am going through a flare right now i will never get well in the postion i am in. the only way i see out of this is a hosptial stay just to calm my neveres which will help my poor gut
 
afman said:
i am going through this real bad right now not even my wife belives i am sick with chron's she thinks i am just making it up to get drugs.living with the inlaws they dont belive me they think i am just a lazy sob that wants to still around all the time doped up on medince. i am going through a flare right now i will never get well in the postion i am in. the only way i see out of this is a hosptial stay just to calm my neveres which will help my poor gut
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Ask for a note from your doctor with your diagnosis and show them. I couldn't stand being around people like that.
 
Most people who I'm around who think they are doctors try to give me their brilliant diagnosis. I let them get it all out of their systems before I tell them they are wrong and this is what I really have. They look at me like I've done something horrible to them. And then they have the nerve to say, "You're WRONG!!! I know what I'm talking about!!" I say "sure" and walk away. Sometimes it's just a matter of picking your battles with the "ignorants" and move on. You have too much energy spent on this disease already, don't fight that and other people too.

I think we all should get medals for having to fight this and people out in the world. If they only knew.
 
But, on a lighter note, I love it when people tell me to eat/drink this to try to get me to feel better. The looks on their faces when I tell them those items will make me very sick or send me to the hospital.

Also, it's funny to hear people's reactions to what you CAN have to eat, which for me is about 6 to 10 items.
 
I'm with you there 100%. Its the curse of our disease. No outward appearance, just pain and suffering on the inside. People are use to hearing that someone has something wrong with them and that can actually see it. It helps them justify their sympathy.
 
GutlessWonder86 said:
Why would I eat certain foods that I know would cause me serious problems???
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Well most foods give me diarrhea and pain but not all the time. But I do know that when I'm already in pain and having diarrhea, like today, I went ahead and ordered that huge ass salad with ranch dressing and grilled steak on top with guacamole, cheese and sour cream (I'm lactose intolerant). Why? Because I already feel like crap and will for the rest of the day maybe two I dunno, so why not at least eat some tasty food? Wouldn't matter if it was boiled chicken breast and white rice or a flame thrower in my case.
 
I guess the disease effects people in different ways. For me, I don't generally have pain. And, I have a really high pain tolerance which can get me into trouble if I'm not careful; when I do have pain (which is rare) is not very much but it usually indicates something serious. I almost never have diarrhea but I do have abnormal stools. The problems I have are extreme weight-loss due to malabsorption, arthritis, vision problems, severe TMJ, gastritis, nausea, and flu-like symptoms. Sometimes it feels like my throat is swollen. I do look pretty sick so nobody really doubts that I am. However, there are lots of people that are insensitive. I have some family members that think I'm just laying around 'cause I feel like it. Its like they aren't sympathetic until I've lost 10lbs, become anemic, and ended up in the hospital. It just pisses me off:mad2:. Oh, and what I really hate is when they eat yummy food right in front of me!

I still look pretty thin. People stare at me a lot :(
________________________
Diagnosed: December '09
Surgeries: 1- terminal ileum removal
Medications: Pentasa, promethazine
Other: Multi-vitamin, probiotics,
digestive enzymes, fish oil,
calcium supplement
 
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it's a difficult topic to, in my experience, give a standard answer or reaction to everyone. some people want to be sympathetic, feel they need to say something... but genuinely are uninformed or misinformed. those people, i'm kind to - and if i feel close enough to them, i'll explain what Crohn's is, what it does, and what i've been through.

but then there's the whole other group of people who think it's their duty to criticise us because we don't work but look fine, we're obviously eating something that's causing the Crohn's, or we're not eating enough fibre & raw vegetables... yep i've heard them all - and i have to admit i'm not so kind to these people. i'll either smile and suggest they go google Crohn's Disease, or just say something like "i'm sorry, but you really have no idea what you're talking about".. and walk away.
 
For people offering advice, I usually just say, "Thanks, sounds interesting, I'll look into it." It's so much easier than arguing or telling them that they are wrong or off-track.

I am very fortunate not to have too much experience with people not understanding. My family and friends have seen me thru lots of hospital time (you can't really fake having your colon removed because it ruptured...) to know it's the real deal. And they have seen me jet to the bathroom enough times, and smelled the aftermath, to know I am suffering.

My heart goes out to you and everyone else that doesn't have that kind of support, especially from your families.

-Amy
 
The people I run into try to get me to eat things I can't eat that make me sick. When I tell them those food items make me sick, they just say "Oh, you haven't tried it." Oh gee! I never thought of it that way! So that explains why I can't eat it!

I include myself with people who know me well and want me well and understand. When I get sick, its hard for me to function, move around, talk, or anything else like that. As you know, being sick is very taxing on your body. When they see me like that, even if I don't tell them, they always tell me to take it easy for the day and even come visit me so I wouldn't have to go out. They've even bought groceries for me, once I'd had them the list and money. They also help me to look on the bright side of things too. When I'm depressed, they make it a point to make me laugh.
 
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Wow...you all are saying and feeling the things I think/feel all the time!
I came across this website before I had my diagnosis and it was comforting to know I was not alone. You will have to google invisibleillnessweek.com (since I am new and cannot post urls)
I have been sick for quite some time, long before I was diagnosed, so I felt very alone. I did not feel I was entitled to sympathy because technically there was not anything "wrong" with me. I did not even feel I should join this website, although I perused it often for information.
I suppose that maybe now I have begun to cope...by coming here and sharing with you all. I am learning from all of you...on how to cope. Thanks!
 
If the interest is genuine I will explain but I seem to be leaning with Ethan and Astra on the "F*&k'em approach:ylol:
 
for me there are karma issues...my little brother has had severe ulcerative colitis for years and i thought he was full of BS. now i ask him what i can eat.
 
My friends and family are mostly supportive but they just dont seem to get it. every time i get up and run to the bathroom (any one of the 500 times a day) they say, oh it must have been that pizza you ate or that banana you had or that piece of bread or any other item of food that they have seen me eat in the past week. IT IS NOT CAUSED BY THE FOOD I EAT!!!!!!!!!!!!!!!!!!!!!! how many times do i need to explain this, even if i never ate anything ever again, my colon is full of inflamation and ulcers and until it gets to the point of complete removal i will suffer with this disease. LET ME SUFFER IN PEACE!!!!!!!!!!!!!!!!!!
hehehehehe. okay thats out of my syster now ;)
 

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