Have you been hurt by insensitive words?

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hopeful

Joined
Nov 3, 2010
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I have a friend who is putting together a guide about what not to say to sick people. he asked me for some contributions, of things that hurt me, and how they could be phrased with sensitivity. So I gave him these:

1. "You look terrific today" - this is when I am suffering like hell. It could be said "do you feel as good as you look?"

2. I hope you are feeling better - well, that is a nice hope to calm your conscience, but you don't know how I am feeling. Why not ask "Are you feeling better?"

I don't mean to sound over sensitive, but sometimes when you are going through hellish pain and get unthoughtful comments, they hurt.

So, can anyone here contribute some of the words they have been hurt by?

Thanks folks!

Hopeful
 
Hi Hopeful! One of my former doctors said, "You look well." He said this every time he saw me. Many times, I felt like I was dying on the inside. I dumped that doctor for a more understanding and professional one.
 
while being on prednisone and constantly being questioned about my moon cheeks..
thank god I can't see myself all day in the mirror,why do people have to ask and comment on it?
comments about my appearence insult me.
 
I was told I didnt have anything serious because I looked to well.That was from a x nurse even though I hadnt left the house for 10 days and felt like I was going to die.
 
See, I actually quite like hearing I look well even I don't feel it. While it can be annoying for people to underestimate how unwell you are if it doesn't show on the outside, I don't like my disease determining my whole life. If I feel up for socialising (particularly if people are going to have cameras out), I like to make the most of my torment being limited to my insides lol. It get really depressed when I look huge on pred or pale and sickly with brown circles around my eyes 'cause of the aneamia. I'm taking iron as a preventative during this current flare (first time I've done this, normally I've gotten sick and then had to recoup my iron levels later). It's a small but welcomed consolation to still have some colour in my cheeks, even on the days I feel like death.

I'll admit to getting defensive and upset on some occassions when some thoughtless comments have been made about smells I've produced! (from people that KNOW about my condition). Like I'm not already embarrassed enough as it is!
 
we've had quite a few threads similar to this, and so many of us have written that yes we've had to endure quite a lot of hurtful & insensitive comments along the way..

it's difficult sometimes though, to figure if the person saying it is actually being insensitive, or they're simply not aware what our diagnosis means.. one of my closest friends commented to me recently that "you're really going through the mill right now" - she knows i've got Crohn's, and it's not a 'right now' thing like a cold.. it goes on and on and on.... but i just figured she's not really ever looked into what Crohn's is or does to a person...
 
I don't mind the comments about how I look on the outside. I try to put a good face on no matter how I'm feeling, so I can't expect people to know how I feel on the inside.

The more hurtful comments come from people I know and love. If I don't know the people, it never hurts. A few examples; "You just need to push past the pain and get out of bed", "ohhhh, that's just gas pain, you just need a good fart", and one that really hurt from my "best" friend after I put on some weight from Pred, "you look so much better now, everyone told me that you were anorexic, you looked so bad." Gee, thanks.
 
We've all heard it

But at the same time, we really dont need to be so sensitive about it. Some people can't find the good words to say, and they come across wrong. And if someone is an *******, well, there are plenty of those out there and we shouldn't care what they have to say to us anyway.
 
hopeful said:
So, can anyone here contribute some of the words they have been hurt by?
Click to expand...

Do you want to know what a co-worker said to my husband after he told her of my diagnosis? She said "I think Crohn's is the new it disease to have." I was floored anyone could say such a thing.
 
OMG Jill, you are kidding, right? Like we are the flavor of the month or what?

I think the worst was when I was running out of a conference room heading to the pot. Some one that didn't know me well asked what was wrong. A woman that I thought I was pretty close to said, oh nothing, she just has issues (with a smirk and the air quotes). Issues, come here you mutt, I'll give you issues! Yeesh!

Michele
 
My favourites are -
From my Gran on my Dad's side after being told I was diagnosed "Oh, did she catch it off of her Mum?" (My Mum at the time was diagnosed for 10 years!)
To my partner "Is Vicky pregnant?" (Pred :()
Partners Mums, after being in a flare for the past few months, only now starting to feel better "Oh Vicky, your looking ill, try resting up for a few days"
General moon face comments. My favourite is hamster face.
After lying on the sofa of a weeks not eating or drinking, going in and out of consiousness, from a doctor "Oh she's ok, tell her to take it easy and sip fluids, she doesn't need to go to hospital" I was practically unconcious on her bed thing! Stupid woman!!!
Obviously general Pred comments. "Oooh you've put on weight, blah blah!"
My consultant tells me everytime I've put on weight that I look better for it, oh yeah thanks doc, you don't have to buy a whole new wardrobe because you've gone up 3 dress sizes and if you were 6 pounds heavier you'd be clinically obese, but thanks!
Also I don't like it when people tell me what I can or cannot eat because other people with Crohn's can't eat it. I know myself what I can or cannot eat and if I fancy another bowl of ice cream, I will eat it!!!!
General fart/smell comments from my partner. Though he will say to others that women don't poo/ fart or burp as it's disgusting, yet listens to me in the mornings.... Lol. Got to love him!
 
The worst are about my moon face :
"god you look swollen" or "christ you look like you've been in a boxing match"
Also had a work collegue on my first day back at work say to me "you have gone really fat in the face - your still pretty though"
Also am getting really fed up of people saying to me - crohns disease aint that just IBS. I had a so called friend also say to me that i dont now what tired is as im not a work at the moment (signed off after being hospitilised with a flare!) Also being told to smile as there are people out there in worse pain than me (i know that it could be worse but a little understanding would be nice every now and again)
Sorry rant over (been doing my head in for a while)
 
clearwell said:
I was told I didnt have anything serious because I looked to well.That was from a x nurse even though I hadnt left the house for 10 days and felt like I was going to die.
Click to expand...

Hi Hopeful,
I think the idea is brilliant to put together a list of things not to say, and a way to say them different. More so for our close family and friends. I dont think they really comprehend how hurtful some things can be.

Ah, and yes.. i was also told that i look good - just like the quote above - so there must not be anything wrong with me. This was very recent, and from a GI specialist - who i will never see again! He said, "did someone just tell you that you have crohn's?" I was floored.. the guy had apparently forgotten who i was.

The whole IBS thing sucks too. No, I dont just have IBS. BTW it's not going to go away, b/c there is no cure for it. I have had people ask me if i still have it or not, and for some reason it is bothersome internally b/c its a reminder that there is no cure.

The other thing is when you tell someone you can't do something.. and they say .. oh you can.. then you have to go into details on why you can't.. this comes up with certain foods you can't eat.. and sometimes when you just feel exhausted.. you just can't help it. Some people i think mistake exhaustion for laziness or something..
 
when i first got diagnosed , i was having a hard time and needed someone to vent to. i was talking to my good friend of 20 years and venting alittle... she came back at least you dont have cancer! ... needless to say we arent good friends anymore.
 
I have to drink a diet suppliment Modulen everyday. I hate it when people say it looks disgusting or "how can you drink that?"

Modulen doesnt seem weird too me now because I have had it soooo much and it does me so much good!
 
girlygirl said:
Ah, and yes.. i was also told that i look good - just like the quote above - so there must not be anything wrong with me. This was very recent, and from a GI specialist - who i will never see again! He said, "did someone just tell you that you have crohn's?"
Click to expand...

Ha! When I was first diagnosed, my symptoms were really pretty mild and intermittent (they found it when they were looking for appendicitis), but when I got my colonoscopy, my GI told me my inflammation was severe and put me on Humira.

When I went in for a nurse visit to be taught how to inject, she went over with me what the "outcomes" should be, so that we would know I was improving. Well I told her I didn't really have pain or D so it would be hard to tell, and she looked at me like, "WHY are we giving this person Humira?"

Ugh.
 
When my daughter told a work colleague that i had crohns she said sympathetically "Oh no - I had that once it's awful. Hope your mum is better soon!" I laughed for a week!!
 
@ diesanduhr - OMG! that is terrible! She should be nurse slapped for that..

I was so upset with the GI doc.. i was sitting in the dr's office in awe.. It amazes me that some practitioners could be so insensitive! I brought labs with me from my Rheumatologist, and told him she said I probably need to start injections with my other meds.. Prednisone, Apriso, etc.... and he said the labs must be wrong. Then proceeded to say i looked fine.. etc.. And i told him I just had surgery... he said for what?? I said a fistula and abscess that ruptured internally landing me in the ER. Then he said.. ok, well that makes sense. This is the same guy that had already put me under anesthesia himself and done biopsies.. unbelieveable! I wanted to tell him.. no, really i'm fine.. I just have 4 dr's b/c i like visiting with you guys and giving you money every week for the good convo and meds you keep putting me on... :)

@mario - i'm sorry.. i had to chuckle too.. I don't know what I would do if someone told me that. I'de probably laugh my pants off..
 
Today
Doctor: you look well & your wt is stable
Me: I have not so much as farted in two days, I am in pain & I look as if I am carrying twins here, doc.
Just so you all know, I am as pale as wax and am walking in the Crohns crouch.
Doc replies: well, what do you want to do?
I say: do you think you could get your stethoscope & listen a bit for bowel sounds?
Doc says: do you suspect a blockage?

No you idiot, I came here to burn the $75 copay! I hate when my doc goes out of town!
 
I once got into a conversation with someone that got me incredbily mad, when I explained to the woman I had crohns disease her answer was ' oh god I'd love to have that! You guys have it so good with being able to eat what you like and put on none of the weight'
Honestly, I've never been so frustrated.

Another thing I get told often by my stepdad is that there's nothing wrong with me because I don't look unhealthy
 
MissMacabre said:
I once got into a conversation with someone that got me incredbily mad, when I explained to the woman I had crohns disease her answer was ' oh god I'd love to have that! You guys have it so good with being able to eat what you like and put on none of the weight'
Honestly, I've never been so frustrated.

Another thing I get told often by my stepdad is that there's nothing wrong with me because I don't look unhealthy
Click to expand...

I can't imagine what would happen if someone said either of those things to me. I can only guess it wouldn't be pretty.
 
When going to casualty in agony and going to the toilet 20 times a day(before diagnosis) and being told its ok yr just anorexic,
and when one of my friends said can you pass it onto me please I need to lose some weight yr too skinny anyway!!
 
Boloby said:
Every day at work, the same f-ing people say the same f-ing banalities: "How are you?" I know it's not meant as a serious question, but I hate it, hate it, hate it. Why not just, "Hi." Or, if you have to ask something, "what are you up to?" I figure after answering that I feel like **** week after week, people would stop wanting to know. I just can't act all fake and cheery (though I've been that way since before Crohn's).
Click to expand...

I hate that. I ALWAYS respond "I'm ok." And sometimes I'll get the "Just ok?" response. YES. JUST OK. Probably not even that, but I'm being polite.
 

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