The pain can't be that bad, you're walking around aren't you?

[Stephy Chelle]

Does anyone else get annoyed when someone tells you, "The pain can't be that bad, you're walking around aren't you?" I tell these people yea if you had the pain right now that I'm experiencing everyday then you'd double over and need an emergency room. I've had this pain for years and after awhile you kinda get used to in a way. Don't get me wrong, I double over from time to time, yes but my, what I call my base pain, the pain I usually always have....it is part of my daily life so....anyone else feel like this?

 

[littlemissh]

I think you should feel sorry for these people who clearly lack the ability to empathise- their failing not yours. You should just be impressed by your ability to tolerate pain and get on with your life.

 

[Trysha]

I agree that people can be quite ignorant at times and have no idea about chronic pain.
I can resonate with your feelings Stephy.
The other thing is" you look well" ----what are we supposed to look like with chronic pain and discomfort of Crohns exacerbated by unfeeling and ignorant comments.
Oh well, takes all sorts to make a world.We must be there for each other.
Hugs and best wishes
Trysha

 

[MunMun]

I was explaining to my sisters the pain and they go 'lol if it hurt that bad you wouldn't be telling us'.

Feelings mutual, i was gonna break today i.e just go in bed and sleep or cry it off (it's an 8.5 for me now going to 9) but then i'm thinking no, i can't give up. Got doc appt hopefully on monday to make my hospital appointment so, God willing, i'll be getting some answers and something for the pain next week.

I'm sure there's something to get rid of the pain.

When's the right time to call ambulance to get something sorted?

 

[Trysha]

Hello MunMun,
Sorry to hear of your pain and maybe with your score so high, it is time to head for the
ER or call your doctor. Nobody should tolerate pain at this level.
Do you have a GI you can talk to, or GP?
Hugs and best wishes
Trysha

 

[sawdust]

I think there are a few things that work against us in this case, but since some of the symptoms of IBD are relatable to people that don't have IBD, ie bloating, diarrhea, cramping, etc, I think this is what people relate to most. Now, while you know that you don't feel like they did "that one time" when they ate too many tacos, had the "worst" cramps in the world, or had the squirts a bit, they think that's what you have. Sorry for all the slang, but I'm on a tear now!

If that is all you had, well, then you'd be like everyone else, but we all know different. Do the best you can. After all this time, I honestly don't think that people want to think you're faking or are a wimp, but I can honestly say that many don't want to hear what it's like to have this disease either... You hang out here. We understand you.

 

[iNate]

MunMun you are definately not alone! Our pain tolerance is higher than most and becasue we dont 'show' symptoms of being ill, its hard for others to sympathize or even believe us. I get so frustrated sometimes when i have to explain to ppl at work why i need to take a day off or why im being sluggish around the office. If people really knew that their fluke episodes of diarrhea or cramps or etc.. are the majority of our life they may start to understand what we go through. Hang in there. We understand!

 

[MunMun]

What's a GI?

Thing is, i know if i do go A&E they ain't gonna do anything, i've been sooo many times but get the same rubbish response. So got GP appointment Monday morning and imma get referred to hospital for that examination thingy.

An honestly, if you're able to walk into an emergency centre yourself, what kind of emergency is it? Like they're not gonna take you seriously which is true, plus coz we don't ''look'' traditionally ill on our faces it takes the mic.

Imma ask my GP for uber strong painkillers hopefully on Monday so i can atleast be active at home and do something.

 

[PVail]

Give them the pain for one day and they would soon change there tune. I do believe we adapt to the pain as when you know how long your going to have to wait for an appointment it can drive you crazy. last week I had three day and nights of hell and its more maddening when it doesnt matter what you take it aint goin away. Or as my employeer says do you really have to go to the toilet again ,really ?http://www.crohnsforum.com/images/smilies/stinks.gif

 

[irene]

Hi I am new here what you say I can understand bcos I almost have the pain everyday when you someone they don't know at all our pain only who have will know does your pain sometime like boiling inside and bloated even whole day don't eat don't drink we feel very full also a lot gas my problem also just same as you I hope you can get well and heal ur pain don't suffer too much

 

[ekay03]

Oh yes, I have heard this rude comment and from a nurse no less! I was admitted to the hospital and I asked the night nurse for a pain shot and after a long while of waiting I hobbled myself to the nurses station and plopped into an empty chair. I was about to pass out and that is the reason I sat in some nurses chair. Asked again for a pain shot and the nurse said "If you were in that much pain you would not have been able to walk over here" I was shocked!! She did not know what it took for me to get up and walk! It took ALL of my strength to get up and walk to her. Anyway I hobble back to my bed and just cried. She finally came in w/ one 5.mg hyrdocodne. It did nothing!!! Anyways the next morning the GI doc came in took one quick listen to my tummy and rushed me to emergence surgery. I had a bowel perforation. I complained about that nurse and the hospital did nothing at all! People can be so mean!!!

 

[tishbite]

I feel like this all the time. People question how sick I really am and sometimes even tell me I have pain seeking behavior or are just looking for attention. This mostly comes from my family which is ridiculous considering I just had surgery. I'm just used to people questioning me at this point and my doctors all know my pain and disease is real so I just ignore ignorant people now.

 

[Jobell]

I don't talk about pain because most people don't like to hear it. I think sometimes they say these comments because it makes THEM feel better, since they can't help us relieve the pain, they prefer to convince themselves that we don't HAVE it. Also, I worry sometimes if I might be as 'clueless' about other people's pain or suffering. It is very, very hard to be accurately empathetic to a condition you have not experienced. But it can be really discouraging when your pain is trivialized. It is so exhausting and demoralizing to suffer chronic pain.

Most insensitive one I got (and I got it from many acquaintances when I lost a ton of weight during an acute flare): "You know you really SHOULD stop losing weight, its ENOUGH already!"
did they think i was on a diet???? eating disorder??? I couldn't swallow any food for months due to severe pain, and they tell me to 'stop losing weight'? just wow.

 

[tishbite]

ugh, yeah. i have had people think i was using drugs or had an eating disorder. my mom once told me i wasn't allowed to puke in her house anymore because she thought i had an eating disorder. i didn't think she was serious but she was. i have crohn's, puking is gonna happen whether i want it to or not. thank god i don't live with my parents anymore. that would just add so much stress to my life that i don't need.
i figure if someone belittles me or my pain or tries to talk about my weight loss being a positive thing then they are not worth my time and energy. i'm lucky to have a very understanding best friend and boyfriend.

 

[pielady72]

I don't know who talked to you that way but if they had to walk a mile in your shoes they never would say such things. I'm really sorry you got treated that way. I hope things get better for you.

 

[rygon]

I had sever pains when i was ill. My co worker was great asking how i was and making sure he took the hardest of jobs. My boss who was a self proclaimed "mentor" made me feel like i was being a wuss. I once told him i needed a chack up urgently 4 days in advance and he wouldnt let me go as we didnt have cover.

I tried my best for my comapny but I now realise my health is best for them, the quicker i get get better the best it is for them.

I went into hospital (2weeks off) and came out better than i'd ever been. Management had realised how bad i was and let me off shift work for a while as well

 

[carolhew]

I have a lot of pain too and try to hide it! A few coworkers can tell and offer sympathy. Over the last 3 to 4 weeks I have lost about 25lbs, I am overweight, so lately I hear how great I look and to keep it up! If they only new how much pain has caused this weight loss!

 

[mozzie85]

My GP has been brilliant with pain management. Slowly titrated me up from paracetamol, to codeine 60mg 4x a day, to 100mg Tramadol 100mg a day. When I started the tramadol I literally felt like "wow, I didn't know I HAD all that pain, where's it gone!?" just didn't realise that I had loads of 'background pain' in addition to all the flare of pain that I was getting.

GI and chrons nurses were absolutely useless for pain management.

One thing I'd say, if you DO start on stronger pain meds, give your body 2-3 days to adjust (maybe start them at a weekend?) made me feel v drowsy, but pain free! A friend of mine pursuaded me to give them a proper trial, and after afew days I felt SO much better.