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Have you ever been blamed for having Crohn's?

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Crohn's Disease
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Posted 4/17/2011 11:35 PM (GMT 0)
I can't go to any family get togethers anymore because everytime I go I am bombarded with criticism that it was  my fault I got Crohn's because of something I did. Mind you none of them knew what Crohn's was before I was diagnosed but they googled it and now they're supposed experts. The other day I had to put my Humira injection the day of a party and I got there and I was so tired I couldn't keep my eyes open so while I was sitting on the couch in the living room I fell asleep. There comes my uncle and says " Hey, I need to speak with you." I barely heard him because I was asleep and he insisted I sit up and listen to him. So I had to get from my slouched position and keep my eyes wide open so he could tell I was listen. If I would've known what was coming I would've just stayed asleep. He gave me a lecture about how it's all my fault I have Crohn's and I shouldn't be mopeing around now that I have it. Ugh, I couldn't believe he woke me up from the nap to lecture me when I was alone in the living room to begin with and wasn't in anyones way! And these types of things happen all the time in my family and I hate being blamed for a disease that's painful enough without people always lecturing you.Anyways just had to vent and was wondering if any of you have experienced the same thing.
Posted 4/17/2011 11:49 PM (GMT 0)
Oh yeah I think each and everyone of us has heard it. My favorite is, so what did you eat that you shouldn't have! Grrr...like we asked for this darn disease. Just smile at them then ignore them. Hugs!
Posted 4/18/2011 12:38 AM (GMT 0)
Yeah...my favorites are when you meet someone new and they decide they can do a little web research and "cure" you...waaay too many times I've bitten my tongue, when all I wanted to say was 'really, all I have to do is eat more bread, (or less bread, or more red meat, or no red meat, or what ever the "cure" they found was) and I'll be cured? wish I'd have know that before they cut me open several dozens of times...darn :)
Get used to it...most actually think they are helping...just let it go in and back out and smile nice. If they keep it up don't go back again...I don't miss em.
Posted 4/18/2011 12:43 AM (GMT 0)
I hate when people say "Well at least you don't have cancer" and then it would make me feel guilty for feeling sick. But some of us suffer just as bad as a cancer patient and we still can loose body parts, meaning intestines and rectum such things.

And I totally agree about the the whole thing when too many people are giving you advice or throwing things in your face, its gets so so overwhelming.

Yes I have definitely made eating choices I shouldn't have made, but I they don't teach how to cope and deal with a chronic disease in school. It is something that is going to take me so time and a lot of mistakes and trial. It is a hard thing for me to cope with but I am trying, I really am, and I just want that acknowledged. And it is hard for people to understand what it is like, so hard. I get very resentful sometimes.
Posted 4/18/2011 12:45 AM (GMT 0)
Oh yes :p
I had a boyfriend with Crohn's before I got sick and I hear all the time that I must have got it from him.
Also that I was Anorexic and that must have ruined my digestive system.

But I know its genetic we have a LOT of auto immune disease in the family
Posted 4/18/2011 1:13 AM (GMT 0)
lovely, those ppl sound extremely unsupportive. What exactly do they think you did to "get" crohn's?
I bet doctors would LOVE to hear your family's expertise on the cause of Crohn's Disease.
;-)
Posted 4/18/2011 1:15 AM (GMT 0)
Yea I got it from my Boss and Bossette... Well its Treatable. Ok yea it is but could I have a bit of sympathy? How about a Oh we are Sorry and we will work with you when you need help. (worked for them for 12 years by the way) Went behind my back to my NP asking her all kinds of questions about Crohns and how it would effect my working for them. Geeeezzz!
I had 3 surgeries last year and missed 11 days total for the 3 procedures! 5 of those were laying there breeding that abscess waiting to get to the surgeon! Then they were certain that the surgeon who had been treating me had done something to cause this! When I came back from Dr GI Guy and tried to explain.. my Bossette said... It wasnt all the antibiotics the surgeon had you on that caused this?
Customers say.. Oh youve lost so much weight you look great! Today a neighbor said it and my husband said... She hasnt been trying to loose weight shes sick. At least she said how sorry she was when I told her.
Or my mother in law.. Oh Jennifer had that and got rid of it.. you need to see her Doctor!
It just stinks!
Posted 4/18/2011 1:29 AM (GMT 0)
Yes, I think it's pretty amazing how none of the top notch gi doctors know how to cure Crohn's, but so many members of the general public do! I had a coworker I don't know well frantically emailing me before my surgery telling me her acupuncturist could cure Crohn's. My aunt told me to eat chicken.

They just can't stand how helpless they feel..... or else they want to believe that nothing like this could ever happen to them.....
Posted 4/18/2011 2:10 AM (GMT 0)
my dad said it was from eating tacos from taco cart in TJ. i was working at race track at the time in TJ. about 2 months after diagno, my gi told him enough with the taco's, you can't get cd from contaminated food

Posted 4/18/2011 2:21 AM (GMT 0)
Not blamed per se, but ignorant people for sure. I've had people say things like I wish I could have a touch of what you have because I need to lose weight. Yesterday my stepmother asked me if I could eat fiber? She's been with my father for over 8 years! We have had countless meals together and I have told her repeatedly that I can't eat veggies or fruit. She had never seen me eat a bite of anything like that. Really, you can't keep track of that.
Posted 4/18/2011 2:23 AM (GMT 0)
Oh and my in-laws are always telling me about the latest treatment they have read about. Its usually something that has been around for years, like Remicade. But to them its new and if I am not on it, then obviously I am not doing enough to get better. Maybe it isn't the APPROPRIATE treatment for me!
Posted 4/18/2011 3:05 AM (GMT 0)
I've never been blamed for having Crohns. But my Crohns has been blamed for lots of things. Sometimes I get blamed fore my flares (you should've slept more, you should't drink coffee, you should only eat soup etc.)
I feel like people think I use it as an excuse to get out of doing something.

Trust me, I would much rather be out doing something than lying around being miserable!
Posted 4/18/2011 4:12 AM (GMT 0)
I usually can shut them up by asking just where they studied medicine . My brother use to bring me articles with cure claims until I brought him a few that explained crohns better. Now he doesn't talk about it and its much better.
Posted 4/18/2011 6:28 AM (GMT 0)
Wow... Never realized how lucky I was with my friends and family by not having to face this. I really have a short temper with stupid people at work and in public but if someone in my private life came to me with this that may be the last time we spoke... Probably because they would think I'm a #$@! because of my response.
Posted 4/18/2011 7:58 AM (GMT 0)
I have always had a lousy relationship with my family.. and so I wasn't all that surprised after my first hospital stay when I was first DX that I got such little support. I was let out after 3 days so I guess they thought it couldn't be that bad.. Even my boyfriend's family would infuriate me with "How can you be so sick when you look so well? EVERYTIME I saw them but I'm sure you all have all gotten this. He has already told his father that he can't say that to me anymore as I am not taking it as a compliment but as a complete invalidation to the misery I am living with.. He has finally taken the hint.

Other people confuse Crohn's with just the diarrhea part (like that isn't bad enough!) and don't realize all the other symptoms of this disease and I have to tell them that I am constipated mostly because everything I eat has to fit through an 8" juicy juice straw or else it will get stuck and I will have to have an emergency operation.. which is when (pick a person) proceeds to tell me about the gall bladder they needed removed.. or their hysterectomy.. which is when i remind them that they are cured now but that my disease is forever. I'm not looking for pity just clarity.

The most invalidating statement I have received up to now was from my boyfriend's brother who I was explaining the process of the stricture I have and what happens etc etc.. my description was quite painful and gross mentioning that the inflammation can go totally through to the outside of the small intestine.. and he said to me "Well isn't that to be expected?" GGGEEEESSSSS and then to make matters worse he compared me to his wife's mother who has had Crohn's since she was about 19.. and he says " Well she manages to go to work and she isn't complaining about it.. How can you be worse off than her?" or something to that affect... We haven't socialized with them since.. my boyfriends choice.. He has had it with his family who treat me like there is nothing wrong with me or that whatever they have.. be it a mole that needs removing is on the same par as Crohn's. It is really a pity because I have noticed that since my DX a little over a year ago so many of our relatives and/or friends that used to call or come around have dwindled to hardly nothing. I attribute this to the fact that although I look decent most of the time it is obvious at some point during a visit that I am exhausted or zone out.. and that gee.. I really am sick!

I was thinking that what is needed is more Crohn's awareness. I mentioned in a thread a while back that not even ER doctors know the most basic symptoms if it doesn't have to do with diarrhea or blood.. In my case a few years ago they were convinced I had a kidney stone because of the amount of sharp pain I was in and discharged me because they didn't find a stone on the NO contrast cat scan... Looking back at what I had told the Dr they should have tested me for an abdominal problem with a contrast cat scan, but they didn't, and my stricture got worse and my Crohn's went another 3 years undiagnosed and I was left to think that I had an ulcer or something. I know there are a few non profit groups helping people and families with IBD get help and information but it still doesn't solve the most basic problem of being recognized in the community or workplace as having a really serious disease that deserves some respect .. no one questions a person with cancer, or say Parkinson's disease whether he is really that sick or not.. I've chosen diseases that aren't communicable for more of an accurate comparison..

Anyway sorry for the long rant..
NY Veggie
Posted 4/18/2011 8:20 AM (GMT 0)
I just thought of another story that really 'got my goat'
I was in a shop that a lot of my peers hang out in.. when one of the usuals came in and proceeded to tell me that the only thing to "cure" me was to go on the SCD.. that she works with autistic children and it works wonders (at this point I'm trying to find the similarity) and I tell her that I HAVE to be on a completely low fiber low residue diet because of my stricture and that I am also a vegetarian.. and because of that it might have explained the very late onset of this awful disease... and to that she said "Well that's it then. You gave yourself this disease!" There is nothing you can say to someone that says that to you never mind that there was no sense to how she got from point A to point B.. no logic what so ever. I was so pissed and shocked that I was being accused of giving myself Crohn's because I was a vegetarian!! She then went on to tell me that I had to eat chicken etc etc.. sigh

BTW.. I have been told and it is even written in the letter from my 2nd opinion Dr (who is one of the top-notch guys from Mount Sinai here in NYC ) to my GI doctor that it is because of my lifelong vegetarianism that my Crohn's has been less severe and that if I stay on this diet I will probably not have as many set backs as other people might that eat meat or other diets.. That being said, for the record he was a huge advocate for the SCD
NY Veggie
Posted 4/18/2011 1:33 PM (GMT 0)
I am so sorry your family is like this. I've had a lot of people ask embarassing questions and tell me about diets and foods, it's probably just stress, blah, blah, blah................It's a shame when people don't understand and support you. No offense, but thier reaction to your disease is pretty dysfunctional. I can't blame you for feeling bad. I hope they come to realize a few things about your disease soon so they can support you.
Posted 4/18/2011 3:29 PM (GMT 0)
Jeanneac,

That's funny because as far as I can tell your parent's are to blame for passing the defective Nod 2 gene to you, and since it is a double recessive trait you can blame both of them.  My old doctor had 6 family members diagnosed with Crohn's, I wouldn't wish this on my worse enemy but sometimes don't you just wish they could experience it for a week?

I have never had family blame me but my mom had the Doctor blame her when I was first diagnosed, I remember it upset her horribly.  And it wasn't the bad genetics that he blamed it on it was her smoking.

Posted 4/18/2011 4:52 PM (GMT 0)
Wow, I didn't know so many of you have had these types of problems with family/friends. But I doubt my family will change. Before I was diagnosed they said I didn't need to go see a GI I needed to see a psychiatrist because I was insane.
@melinds: I wouldn't wish it on anyone either but if they could just experience what I've experienced in years for just one day maybe they'd understand. I don't pity from anyone I just want support. I just hate that my pain is always less than everyone else. My brother said "Now you see when your wisdom teeth are coming out now that's real pain not that small thing you had in your butt(fistulas/abscesses)" and my dad sprained his ankle once and said the same thing that I haven't experienced any pain that's real pain what he had. So I'm supposed to cry because you sprained an ankle once and I've been suffering with this for years and I just get negative comments.

@FrostyinVT: Ugh and I've been left with practically no friends but the ones I stopped talking to I don't miss them at all. They would constantly criticize me and say I'm a walking disease and I'll be darned if I get the same criticism from friends and family, at least friends I can stop talking to entirely. And those family that are so incredibly ignorant I talk maybe twice a year at holidays.
Posted 4/18/2011 5:04 PM (GMT 0)
Family and friends can be so cruel (and stupid)....luckily no one has ever put the blame on me for getting sick....Clearly your family have not truly researched crohn's or they'd know that it can happen to anyone, that it's highly suspected to have a major genetic component and that anyone can likely get an IBD because of the strong genetic component of the disease. They'd also understand why you/we get the tireds as having a chronic illness often includes fatigue as a symptom.

My mom became sick with ulcerative colitis (another form of IBD) AFTER I became sick with crohn's...ironically by her getting sick herself, it finally answered her question of "how did you get this kind of sickness" as it was clearly from her. She was no longer able to blame my father for me getting sick...people should really think before they speak, however that will never change, so the least they could do is educate themselves or find out the hard way like my mom did (may she rest in peace).

Next time a family member/friend tries to put the blame on you, simply tell them that it's prominantly a genetic disease and they should be careful as it could attack them some day as well, it's only a matter of it being triggered is all. Then they'll have to "eat their words" so to speak and we'll see how that is on their digestive system when they're eating their own words...of course I don't wish this disease on anyone but honestly it would be nice if people would stop being so judgemental towards those that are sick with diseases, especially genetic linked diseases that even doctors cannot 100% predict who will or won't get it.
Posted 4/18/2011 5:40 PM (GMT 0)
Ooh very well said PB4~ That ought to make them a little nervous hearing it is genetic and that they might end up in her shoes one day. Haha...
Posted 4/18/2011 7:05 PM (GMT 0)
I'm so sorry to hear that this is so common...me I get it from my MIL...and she said something stupid when I was on steroids(I had been biting my tongue until then) and wow! I chewed her ou! I had to do it again this last Christmas, chew her out, that is (cuz she STILL doesn't get it, probably never will, has less compassion as a rock in my back yard, heck, take that back, I think the rock has more compassion than she does)...though I tried to be nice about it, but when on steroids it doesn't come out that way...

But that is what I was thinking about Lovely985, when you mention this story, is how you would have treated uncle if you had just taken your prednisone idea shocked Honestly, I think this guy deserves a steroid induced talking to...hehehehe smilewinkgrin BTW, has anyone else not been able to hold their tongue about being sick while on steroids ?
Posted 4/18/2011 8:20 PM (GMT 0)
I chuckle at the people who are always saying that it can't be that bad, how come your not working, etc. who then are bedridden with a stomach bug or a touch of food poisoning.
Posted 4/21/2011 10:04 AM (GMT 0)
Today I was hit with another slap in the face as I was just DX with a brain aneurysm that I may need to have surgery on right away
I emailed the only brother I am still talking to who happens to live halfway across the country from me and he wrote me back
"Try not to be frightened ... this is just another hurdle to clear and you've proven that you can do this."
He also knows that because of this I will have to postpone my Crohn's surgery which is badly needed.

So on one hand it's like he's saying that I have the strength to do all this so I can feel like I'm courageous and strong (I would rather be healthy and smart)
Is it me? or is he being sort of dismissive by writing that because the truth is that I may need some help and support.. but since 'I'm so strong' he knows I can do it alone?
I don't understand most people's reactions to me now that I am very sick for the first time in my life (not counting things I was cured of)
I especially find myself angry and having to talk through so much of what my family and my boyfriend's family has said to me.. I'm psychoanalyzing all the time
None of what they have said to me has made me feel better.. if anything I find myself apologizing all the time
NY Veggie
Posted 4/23/2011 12:43 AM (GMT 0)
NY veggie...wow...I'm so sorry to hear this, you need some super sized hugs ((((((((((((((((((((((((((NY veggie)))))))))))))))))))))))))))))...and please, come here any time to vent, cry, whatever...I wish you didn't have to be so alone, that I could do more...
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