Do you find people don't understand??

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reidyjo81

reidyjo81

Joined
Jun 21, 2010
Messages
167
Hey
Just wanted to vent really, and know that I am not the only one who goes through these feelings!!! This is an ongoing thing but why don't people understand?? It frustrates me every day, the only person I think that really understands is my Dad. Even my close friend said to me last week, "how do you not know what is going to hurt your stomach after all these years". Er hello your bowels have a mind of there own most of the time and living with Crohns is unpredictable. I just laughed this off, but I get those kind of comments all the time and it is so frustrating. Like most people on this forum I have off days, where I can't even put my finger on what is wrong, I just don't feel well and obviously this makes you down in the dumps, when I feel like this I even think my partner don't understand.

Then I get moody and don't want to see anyone as everyone probably just thinks I am an attention seeker. Sometimes I wish my friends family and work colleagues could just have this for a day or so and realise what us guys have to go through. Its not all about needed the loo.

Sorry about the rant, just wanted to vent to people that actually understand.

Jo xx::grumpy:
 
yep we understand, Jo. i have learned to accept this kind of thing because it's just human nature to a certain extent. if we haven't suffered something ourselves, it's very difficult to imagine what it really feels like.

for instance, i used to have no idea what grief actually feels like when we lose someone we love. i was not prepared for the way my heart felt like it had been torn in half, the way my brain screamed "no!" when i heard that my sister and then months later my father had died. nor was i prepared for the ongoing emotional scar and pain that i now live with.

i think people in general try to understand and sympathise, but we can't expect them to know how it really feels... and sometimes there's only a fine line between ignorance and not understanding.

ignorance - a fine example lol - a doctor who asked me a few years ago (when i went with stomach pain) how many times i open my bowels in day. i had just spent about 5 minutes explaining that i have a stoma and my output was normal. duh!!!!
 
oh ding i had the consultant ask me the very same question!!!


personally i think dont want to know, as bowels and poo are such a taboo subject. except on here of course!

my family, and i use that term loosly, just thought "sharon has a dogdy tum" which was fine by me, as i couldnt be bothered, or have the patient to explain crohns to them. some of them didnt even want to know, not even when i had my stoma sited.

they had to take notice when my pouch leaked at my sisters wedding though.
oh i so love my stoma, he gave me the excuse to get out of the wedding and back to home.
 
Yep totally get where you are coming from...

and yep sometimes feel that those who should understand the most, don't :(

:hug:
 
Thanks guys it can be so frustrating at times, I am always understanding towards people and I suppose I just expect the same back. LIke you say Christina the people who should understand the most often don't

x
 
People definitely don't understand. I've been told (by family members no less) that I'm psychosomatic, that my pain & symptoms aren't as bad as I say they are, that I should just deal with it and eat normal foods, or that I should give up gluten and then I'd be cured, etc. It's incredibly frustrating at times and I just have to distance myself from certain people who make no effort to try to understand or to even listen to me. I guess it's a blessing in disguise that being ill makes you realize who is really there for you and who isn't.
 
Jo and everyone who's replied, i couldn't agree more. Some people just really don't get it! And it is very frustrating. If they're so interested why don't they listen to us or do some research. When someone tells me its in my head or thinks my Crohns is on a par with the stomach ache they had the night before i have to bite my tongue and just be civil. I don't have it in me to actually tell them what i think.

And as if by magic, at the very moment i'm typing this (and i'm not joking) my Dad has shouted in to me asking weather i'm eating what he's just cooked knowing full well i haven't eaten that kind of thing for a long time now.

I really do get the impression that alot of the people around me probably think I'm very much exaggerating my illness despite the fact they have seen what it has done.
 
I get fed up with people thinking that I exaggerate the amount of pain I have, both in the bowel and the joints. Just because most of the time now (thanks to Remicade and Methotrexate) I am able to walk on my own, some of my in-laws think when I use a cane or need David (DH) to help me get up that I'm faking!GRRR...

Another frustrating comment is "Well, you look healthy" or "You aren't really skinny, aren't people with Crohn's skinny?" I am totally with Kelly on this one-when you lose 40 pounds during a flare, everyone tells you how great you look. When I tell them what I go through, I've actually had women say, "I wish I had a disease that made me skinny HAHA."
Great, I'll trade...(waves magic wand)*POOF* wish granted! You can also have the fistulas, bleeding and joint pain, too!:devil:
 
Kelly & Jeannette, I've had similar experiences with other women telling me how "lucky" I am that my illness makes me skinny, and how "great" I look even though I feel like I am wasting away. Hmm, yeah, I feel like death and I look like Skeletor, but gosh I sure am super lucky huh! I really don't understand that mentality with some women! Even my own grandmother thinks that way - she is a fairly robust woman, and she has this one dress which is about a size 6, and she won't throw it away. She once wistfully told me that she hopes that she gets a "wasting disease" as she put it, so that she can lose a bunch of weight before she dies and fit into that dress one last time. I was horrified! And this was years before I got sick myself. I think people just do not realize what they wish for! If only they knew.

Beverly: My employer is actually much more understanding than some of my family members - that's pretty sad. But I like Kelly's idea, if I end up snapping at any of my uncaring family members, I'll just blame the pred! :)
 
"How can you be sick? You don't look sick."

In the same way that you don't look stupid.
 
yup me too....i like that and get that comment ALL the time, and from people who know better, alot of my friends are nurses and they still ask daft questions like that!
 
I soooo get what you mean, I have had both sides of the scale. I have been digustingly thin where the docs wouldn't let me leave hospital until I put on weight and my friends are like you look amazing, er no I don't I look like a bag of bones. Now I am in a good phase I get people thinking I can't have crohns cause to them all crohns patients are thing. Very frustrating.

Brilliant maple leaf girl, the steroids certainly let the anger out. Good luck with that. Know exactly how you feel. I am at the point where I just don't talk to about it with many people. Its just too frustrating

xx
 
I totally know how you feel.
For me weight loss is the only Crohn's symptom I don't get! Typical. So I get the pain, strictures, yadda, yadda, but am still ever so slightly overweight and look healthy, which makes it even harder to explain.

Most of my family are amazing, however there are a few who don't get it. The think it's their right to ring me up and rant at me about changing my diet and how I'm going to kill my mother from the stress of me being ill.
If my specialist dietitian says I'm doing fine on what I'm eating then I'm going to go by her.
One day I'm gonna snap and tell them to "go somewhere" just in slightly worse language! My mum has had UC for years and my dad has MS so they both know what it's like having a chronic illness and are fab. My dad is my role model, he never complains, just gets on with his thing quietly. He says "what's the point in complaining? If you do no one listens and if they do there's usually nothing they can do so what's the point?"! But seriously he's amazing.

I wrote way more than I meant to, and not sure if it makes sense. It's 5 am here and I've been awake since 4am so am a bit dozy!

Lucinda x
 
reidyjo81 said:
Thanks guys it can be so frustrating at times, I am always understanding towards people and I suppose I just expect the same back.
Click to expand...

Jo-Even if we weren't understanding before the Crohns, I'm sure pretty much all of US are now. Because of the stuff we have to go through, we can straightaway empathise with people who are ill or whatever and will try to help if possible. I might be wrong, but i have found that anyone who doesn't 'get it' about Crohns is usually 100% healthy so has no idea what pain is like when it doesn't disappear after a day!

Hopefully we'll see the day when Crohns is known about by everyone-though we'll stll run into the "my friend has that and they solved it by...". There are so many different combinations of symptoms it will be dififcult to get the world to comprehend the disease i think.
 
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My family seem quite understanding about my physical health issues, but not(especially my brother) my mental health issues.
 
So glad I came across this thread because I sure can relate to this as well. My family always thinks I'm exaggerating my pain and that I should stop acting like it's such a big deal. Meanwhile I'm sitting here walking like the hunchback of notre dam bc it hurts to stand straight and they think I'm putting on a show. You would expect your own family to understand but they are the least sympathetic in my case at least.

Oh and then there was my one professor in college who was the biggest jerk ever. I missed the midterm because I was hospitalized for a week so when I returned to class with explanation and medical notes he looked at me like I was making up a bunch of BS. Not only that but he then told me to "try not to be sick for the final because I really can't give you another make-up exam". As if I can control when I want to be sick... so the frustration is something I've just learned to deal with it.
 
I remember being on my first high doses of Prednisone and had the mooning of the face going on and my grandpa basically said something like, "you look like you're storing nuts for the winter, lay off the food" while he pinched my fat little cheeks. I was 9 and I almost died on the spot.

Of course people don't understand because as people have said, they can't see the damage that's happening on the inside. I'm thinking of carrying around a picture of my infected gut from one of my scopes and showing that to people when they say dumb things. Then say, "Ya, maybe some more vitamins and laying off the Chinese food will fix these sores, ya *******."
 
bess686 said:
Not only that but he then told me to "try not to be sick for the final because I really can't give you another make-up exam". As if I can control when I want to be sick... so the frustration is something I've just learned to deal with it.
Click to expand...


Okay, that has to take the cake for the Biggest A**hole Award. I would have responded with "Would you be telling me the same thing if I told I had cancer?"

I didn't get as much sympathy at my last job as I thought I would. My boss kind of gave me the hairy eyeball every time I had a drs appt or when I took a short leave of abscence last fall to get my head together. While some may understand the physical aspect of the disease, they definitely don't understand the mental aspect and how mentally debilitating it can be to deal with a chronic illness... let alone deal with the random D that can strike at any minute with no warning!
 
I totally agree with you guys on this! People soo don't get it and they never will unless they walk in our shoes. I had my GI use the "you look great and healthy" crap with me around the first of the year. My tests were showing I had issues going on but he passed them over because I looked great. Well I found another surgeon who looked at the tests and not me..I had surgery two days later! I had the surgery, lost 30 pounds, looked like I was dying, but looked fantastic to everyone else! What is wrong with them?? I didn't understand it then nor do I know. My family are great and so are my inlaws and cook to what I can have when they are around. I was blessed with a great family. Friends on the other hand...they don't get it why I am tired or have to break plans soo often blah blah. What do I say...oh well!! I have to take care of myself before I even try to worry about hurting their feelings. Harsh, Im sorry for that..but it's also the truth!!
 

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