Crohn's Disease Forum » General IBD Discussion » Grrrr, feeling annoyed and alone


08-11-2007, 02:16 PM   #1
vickyoddsocks
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Grrrr, feeling annoyed and alone

I'm sorry if this all sounds like a moan but there's only you guys who will understand.
One of my biggest problems with having crohns is the lack of understanding from my friends. Im 21 and got diagnosed at 16, and it just seems as iv got older the more annoyed i get with people who dont have crohns.
Im at Lincoln Uni at the moment, (currently at home in Leeds due to recent flare's and hospital stays) and when i got there i didnt really tell my friends about the crohns, but then as i moved into a house with them i decided to tell them. They all seemed great with it, but now iv had more and more problems they just seem to be sick fo hearing me go on about it!
Iv had a REALLY tough time with the Crohns (11 ops) (and its a miracle im even at uni in the first place) and they just dont seem to care. When people meet me they find it hard to believe that im 'apparently' so ill, because i look well, and i go out with them.
A few months ago i had to go on the elemental diet for 6 weeks and they would say "God that must be really hard............dont you get hungry..........dont you want to eat food!?" And i feel like saying "Of course i do!! Do you think id choose to do this?!" What made it worse was when i was on the 'drinks', they had at least 3 BBQ's! And would keep 'forgetting' that i couldnt eat. It annoys me SO much, because thay wouldnt be able to not eat food for 24 hours, let alone 6 weeks!!
They also said that they would DEFINATELY come to visit me if i had to go into hospital again, (because i had told them about my 'closest' high school friends never comoing to see me). I was in hospital recently for a 8 days, then out for 2 weeks then back in for a week (had another operation) and have now been out for a week, and guess what? Did they come? No, nothing, most of them didnt even text me.
Last term my best friend at uni got an gut infection (suspected apendicitis) and had to go to hospital, i took her, stayed with her, reassured about everything, brought her Boyfriend to go and see her (becasue im the only one who can drive) and picked her up the next day, and both times iv been in recently she NEVER came to see me or even sent me a card! They just assume because im ill alot of the time and in hospital alot of the time that im 'used' to it! It annoys me SO much! Everyone else made such a big deal that she'd been in hospital, and flocked around her! And she made a massive deal about being 'nill by mouth' for 4 hours, and i had been on the elemental diet for 5 weeks!
Iv always been very brave and cope very well with everthing this b*****d crohns throws at me, but this is the thing that gets to me most of all. Sometimes it seems like, if i made a fuss and let it get to me, they would realise just how bad it is. I just wish they had even the slightest idea of what my day to day life is compared to theirs. I ALWAYS think 'I wish i could give it to them for at least 5 minutes' - And i really really do.
Anyway, im on the elemental diet again and going back to uni tomorrow so will see them, and im dreading them being so insensitive around me when it comes to food, but what can i do, at the end of the day its my problem, not theres, so why should they care?
Im sorry about this very long winded moan, it just pisses me off, and theres noone else to talk to. (also this is keeping my mind off food!)
08-11-2007, 03:06 PM   #2
Jeff D.
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I know what you mean. It always seems that the more you tell them about Crohn's the more they get pissed and everyday is different and stuff like that. I have that problem and I lost a few of who I thought were my best friends because of that.

I hope you feel better.
08-11-2007, 03:07 PM   #3
soupdragon69
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Vicky,

I understand why you feel as you do. When on elemental myself I went to a lunchtime leaving do and one of the managers came up and peered into my mug of hot water, patted me on the knee and said "it's so terrible you can't have a piece of cake with us" a friend who also happened to be on elemental at the same time piped up from across the room and said "no its not! who the heck wants belly ache from c**p food" and I roared with laughter.

The thing is Vicky you are doing this for you not for your friends. Yes I know its VERY tough and yes I agree its unfair but when you are young and never been ill you dont think about chronic illness - lets face it I bet you didnt too much before you had GI probs I bet eh? I know I didnt!

At the minute you are going through a really rough patch and things WILL get better but beating yourself over the head will compound things too you know that also.

I have been wondering how you were getting on as you didnt answer our comments on the elemental thread you started..... now I know eh?

Hang in there babe things WILL improve. Just keep yelling here we do understand and at the end of the day it is better out than in!

If you want to PM me feel free.
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Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
08-11-2007, 04:12 PM   #4
Sojourn
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Sorry to hear your friends are not so understanding but this is a common happening with Crohn's. There's something about stomach problems where people just think it's no big deal. I think this is because just about everybody has digestive problems, from time to time, when they eat too much or eat unhealthy. So they automatically tend to think they know what you're going through based on their own experiences, which of course amount to nothing in comparison.

When I went into the hospital a few years ago I was a little surprised that only one of my friends came by to see me. I was 32 at the time. But in a way I was glad because I was able to realize that I was not as significant to these friends as they were to me. In light of this, I was able to adjust my relationships and time I put into them. It wasn't a matter of getting offended, or upset, but rather to just be like well, okay, I understand you're not really the kind of friend I thought you were so now I know. So maybe I had unrealistic expectations thinking they would come by in the first place.

But things are more difficult at your age regarding these matters and I don't know how I would have handled it when I was your age. I do believe you will develop a lot more character and endurance that maybe some of your acquaintances won't have when they face various problems later in life. In any event, I'm glad you felt comfortable to share what you're going through here. It helps a lot sometimes to share these things with others who know all too well.
08-11-2007, 04:17 PM   #5
Kev
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Yeah, Vicky.. I'd agree with soup and jeff.. people can be sooooo... self centred.. at times. Rant and rave here all you want... as for friends, class mates, whatever.. it's a bit of hit and miss. some don't know how to react or act around people who are ill.
Others assume that you prefer to be alone... perhaps based on subtle hints that you give off w/o being aware of it.. Like, frinstance, myself. I try to avoid talking bout my illness.. and I think it gives some of my friends the idea that I don't want to. the truth? most times I don't, simply because I don't like my illness, don't want it to be the centre of every conversation.. don't like to stick out in the crowd as the only one who can't eat/drink whatever they want, whenever they want.. So when I do want to talk about it... welll, my 'audience' is in the dark as to what I expect of them... One of the great things about this site is I can go on and on about my illness, about my bad times, hospital visits, drug reactions, scope procedures, etc, w/o feeling like it's alll about ME, or illness, or whatever. Like, I often feel that IF I go on a rant about my illness in front of my friends, they dont' understand, haven't a clue as to how to respond, what I want from them, and I end up feeling like they are sick and tired of me talking about being sick and tired. Any of this sound like it happens to you... I think it's a pretty universal reaction of the healthy to the sick, and vice versa. so don't go feeling it's all on you, that you are alone. you are not!
On here, we are the 'in' crowd. we are the majority, and you are equal & accepted
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08-11-2007, 04:51 PM   #6
vickyoddsocks
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Thank you soooo much for your replies everyone! Its really cheered me up!
My mum often says to me to just take it as now you know who your real friends are , and i agree, its made me realise that, but also i think most of it is due to pure lack of understanding, most of them have never been near a hospital, and the illest they've been is flu. And i cant really hold it against them because to be honest im sure i would have been the same, without knowing it, i suppose its just experience and stuff at the end of the day.
Im fine about it most of the time, its just these crazy steroids dont help with my emotions (im sure you all very well understand that too lol!) one minute im soooo happy im almost dancing round the house, then the next its like someones pushed a button in my head for 'devestation!' lol!
As you can tell im feeling quite good now!
Thanks again for your replies, i'l see how it goes tomo, hopefully no BBQ's! lol!
XXX
08-11-2007, 06:12 PM   #7
Kev
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Hey, glad to hear u r feeling better.. and don't be 2 quick to pass on the bbg's. like, I BBQ a lot of stuff... skinless, boneless chicken has no taste until I pop it on a BBQ w some home made BBQ sauce... a mixture of ketchup/catsup and honey... (low in fat & I avoid the spices my body won't tolerate - there are some 'real' BBQ sauces that are ok too... you just have to read a lot of labels, experiment in small doses, see what happens).. there are also some veggie meat substitutes that are really pretty good. I found some veggie hot dogs and meatless hamburgers that taste good and avoid my problems with 'real' red meat... I can even tolerate some extra lean ground beef patties in moderation... plus there are plenty of other meat products... really lean pork... grilled to even further reduce the fat content.. and I have to eat slowly, masticate deliberately, and be sure the meat is thoroughly cooked.... I do it slowly, over a BBQ grill (again it reduces the fat) then tent it in some tinfoil so it doesn't dry out... plus add BBQ sauce in moderate amounts. It's a matter of personal taste, trial & error (and diary), and finding stuff you can live with for the long run... keep in mind you have to keep eating to live with illnesses
08-11-2007, 07:16 PM   #8
Jeff D.
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One other thing though is that a lot of people are either scared of hospitals or they are scared of seeing someone they know in a hospital. It is scary seeing someone you know because at least when I was younger I thought of the hospital as a bunch of really sick people or dead people. So maybe they just haven't really grown out of that.

I am glad you are feeling better and steriods suck.

Best of luck
08-12-2007, 12:54 AM   #9
soupdragon69
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Hi Vicky,
Glad you are on the upturn. Steroids can be great and awful at the same time when they make you feel physically better but play hooky with your moods. My GP spends half his time apologising to me for putting me on them yet again because he knows how much I hate the emotional rollercoaster. However, the side effects are short lived and thats what helps me to cope knowing it will end and I will feel better. YOU will get there!

Come and talk to us whether you are happy or sad, thinking something through or in a party mood we will understand no matter how you feel.
08-12-2007, 06:23 PM   #10
Darkeffx
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Join Date: May 2007
Location: Connecticut
Being 20 and also in college, I can definitely relate to not feeling like your friends understand your situation. The best thing I found is to just try to keep a sense of humor about it as much as you can. Also, don't feel bad about asking people to come visit you in the hospital; sometimes its hard for your friends to realize that you aren't "used to it"
08-13-2007, 09:24 AM   #11
ruthymg
 
I think we can all safely say here that we have all had similar experiences unfortunately, but its true that with time you become used to peoples reactions. If I am due to go in hospital, I tell the people that need to know and close friends, if they ask why or if they can come and see me I'll gladly explain and allow them a visit, but if they don't I don't tell them anything. I personally get sick of talking about crohns all the time and having to repeat myself over and over again. At the end of the day, crohns is just a part of us, its not who we are. We all still have people that care about us but everybody deals with things in different ways. Remember even the smallest of gestures, like offering to make us a cup of tea, is a caring act. Try not to dwell on it too much, you have far more important things to worry about at the mo. Hope you start to feel a little better sooner rather than later.


Ruth
08-14-2007, 01:44 PM   #12
tonya_n_ky
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Well said Ruth. I too have been through it. I've been called "lazy" for being ill and just wanting to fall over and die, I've been called a "hypocondriac" because I had not been diagnosed with crohn's at the time. It's really hard sometimes to deal with crohn's. And for those who only hear about it they can't really understand because they're not living with it everyday. But never forget that there's a whole forum full of people here that you can talk to anytime you need to and that we've mostly all been through the same thing and can honestly say "We understand" ...Hope things are better for ya...Hugzzz
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