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ahhhh the growing resentment

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Posted 7/9/2009 1:39 AM (GMT 0)
 

I guess this is more of a touchy/feely kinda post, but this has been really bothering me in my latest flare. I mean, this has been the sickest and more miserable few weeks of my life. I am not wallowing in pitty and I dont expect people to fall over me with their simpathy. BUT, I would like just a little bit of recognition of what Im going through. My best friend, who normally seems like a supportive, even self-sacrificing person when need be, just hasnt even given me the time of day. She will ask me how I am doing, but when I tell her, she makes some comment that to me feels like shes blowing it off and changes the subject, telling me of all the terrible stuff going on in her life, as if to say to me--'things could be worse for you, just look at how bad I got it'. I really feel like my resentment is growing, and Ive just tried cutting her off politely and moving on. But shes my best friend. Forget about the others... absolutely NO CLUE what this is like or that maybe they could just simply check in and say, 'Hey, How you doing?' I swear thats all I want, just a check in , an acknowledgement of how difficult this is, then move on with the conversation, talk about the weather, their life, ANything. Thats fine. I kinda feel worried, that when I do finally get over this flare, Im gonna be in "i hate the world" mode, and have all this lingering resentment, and want to shut everyone out.

Thank god for my mom, who knows what it is, cause she has it, and my sister, who is a kind, loving, nurse.

People just DONT GET THIS DISEASE!!!!! Im sure most of you have dealt with this--how????

thanx!

Post Edited (gonnaworkthruthis) : 7/8/2009 7:45:19 PM (GMT-6)

Posted 7/9/2009 1:46 AM (GMT 0)
I'm kinda in your boat, dude. My flare's not bad yet, but all my best friends have decided to abandon me and they don't even respond to my texting now, and I'm not even whining about it to them! I cry more because of people than I do the darn colitis. I'm trying to handle it by just focusing on getting better. I guess I shouldn't share my methods of coping, I'd prolly get this thread locked (nothing really bad though). I just turn to my boyfriend for support; he's great. Also, I'm grateful for the Internet. Talking to people here and to my internet buddies helps. Hope things get better!
Posted 7/9/2009 1:58 AM (GMT 0)
I always feel like people think of it as a no big deal disease. Like, "ok you go to the bathroom a lot, so what?"
Really, it's hard to understand if you aren't going through it. I don't even explain it to most people
Posted 7/9/2009 2:05 AM (GMT 0)
My immediate family understands, because I used to have a ton of energy. But after loosing so much blood, I no longer have the energy that I used to.

Other people don't get it though.
Posted 7/9/2009 2:05 AM (GMT 0)
I don't explain it much either, and when I do, they usually say "ew" which pisses me off to no end. I've had one guy friend and my boyfriend understand.
Posted 7/9/2009 2:08 AM (GMT 0)
Yeah, thats exactly right! I mentioned to my friend that I was in there 13 times overnite, and she was like: "oh wow, 13 times!" And then proceeded to tell me that she what she was going to eat for dinner and when she was going to the gym, etc...

WHY do people just blow this off so? I mean, everybody has had atleast one bout with terrible diarrhea in their lives, right? So why cant they get a grip on how horrible it is to go 13+ times in one nite, for several weeks, with blood, weight loss, and all the other great stuff?? I dont get it, really.

Sometimes I think its maybe because, even when I have really sick days, the prednisone makes me sound upbeat and perky. So maybe they think Im exaggerating. I dont know. Can anyone shed some light?
Posted 7/9/2009 2:14 AM (GMT 0)
I know this will happen to me, they'll blow it off if I don't tell them all the gory details. But there's no way I'm telling them unless I really trust them. Sometimes they even press for me to, which is stressful. I mean, I tell them a bit, but let me have a little privacy. Yes I'm commenting a lot because I've been complaining about this a lot lol.
Posted 7/9/2009 2:20 AM (GMT 0)
I had UC until 2007, when I had all of my colon/rectum removed. I now have a permanent bag, so I get the social thing. My senior year of HS was hell...I would have blood on my seat when I stood up, running to the bathroom about 20 times a day, etc. I ended up in the hospital half way through my senior year, and ended up losing touch with all of my "friends". That was almost 4 years ago, and it's still been hard dealing with people. Since then, I've met my fiance, and he is amazing. If you don't feel like you have someone who really is there for you before you get really sick, then you don't need them! :) However, I have met people who I thought were my bff and then I hear about how they are making fun of my bag. The dating thing was hard. Basically...some people, most people, suck! Most people don't know about UC or any illnesses, so they don't know how to act around it.

My best advice is to just try not to care what others think and do everything that you want to do while you are healthy enough to do it! Start working out and eating right, and try everything you can to keep the UC at bay. It's hard dealing with it, but you will meet people that understand no matter what. You just have to be strong and not really care about anyone else!
Posted 7/9/2009 3:26 AM (GMT 0)
It is tough.  People really just don't understand what the disease is about, and you can't blame them.  I had never heard of it before I was diagnosed with it-it just isn't a well known disease.  Heck, even my GP is pretty clueless about it!

But I am 34, and it is different for me.  If I were going through this as a teenager or young adult, I can't imagine how tough it would be.  Not that it has been easy taking care of kids and such during bad flares, but my life is established, kwim?  My true friends (and I had already weeded out the ones who weren't long before this disease) do care enough to at least *try* to get it.  They can't-but they try.  I do take the time to explain it to those closest to me, even though I have to let them know ahead of time it is TMI and I am aware of that.  It does help them to have a concept of how I can be fine one week, and laid up the next.  People just don't get this disease, and they aren't unless we start talking.

But with people who are strangers or just passers by, I don't bother.  I have a neighbor who is the type to always one-up you about how tough you have it.  It irritates me, but I have learned to just let it go.  She is far too self centered to even see what I, or others, are going through in this life, and that is not someone with whom I will wind up having a lasting friendship.  Somehow, you have to let people's ignorance and stupidity roll off your back or you will spend your time annoyed at everyone.  And the stress of that is not good for your UC!!!

Posted 7/9/2009 4:28 AM (GMT 0)
Thank you all for your input, it definitely helps to commisserate!

I was diagnosed last year, and Im turning 33 in a week, so I agree with Laura and really really feel for you guys that are a bit younger and going through this---You have already been dealing with it during an age where the people around you might just be off partying, super self-absorbed, oblivious to hardships like chronic disease. Im pretty sure I was myself, at the time. Im also sure , though, that you have benefitted in that your inner selves are stronger and more independent than those around you that arent dealing with these things! Elephantpipe and Jesse's girl, Im really glad that you guys are in relationships with understanding people who are helping you through! And Laura, I give you many kudos, too! I cant imagine how hard it is caring for 2 little ones when you arent feeling well yourself.

Im not sure certain aspects like this get easier with age, though. I too have very few, close friendships, a core of maybe 5 people total, beyond my family. I guess thats why this is so hard to swallow, because with my best friend, who is really more like a sister, we are very close, and support one another, and I have been there for her. for example, I was her shoulder to cry on for several months when her boyfriend of 4 years left her and became engaged 2 months later. These people are supposedly tested and true, but so far disappointing. I dont want to be bitter, or shut people out, cause those arent healthy emotions.

Maybe this is taking it a little too deep, but I have started looking at my relationships and trying to figure out any unhealthy patterns. I know that I am very much an empath, and do a lot of listening for my friend. Im beginning to think maybe its unbalanced, like Im allowing her to dump too much of her negative emotions on me. Which might explain why she cant accept my not being Okay. That could be a pattern that is stressful and unhealthy, that I need to change.

ANywaYS, I suppose I should just count my blessings and thank god for my parents and my sister (sorry, the brothers are oblivious. 1 year later, dont even think they know the name of this disease). I am sure there are people out there right now facing this alone. But it also does make me think deeper, about marriage and/or having a life partner that is going to be there, and who I will be there for, in sickness and health, (I had began wondering if i would just end up single)...

I was thinking about that clip, dont know if any of you have seen it,, in the movie Dumb and Dumber, where the guy is in the bathroom with outrageous diarrhea. Maybe I could watch that clip with them, (though i dont think id find it at all humourous at this point) and try to make light of it, while trying to prove a point. Actually i think probably its a dumb idea. Yah, its late.

Ignorance is ignorance, i guess I gotta just chalk it up, forgive, and let go.
I love reading your thoughts and experiences, so if yall got any more, bringem on!
good nite

Post Edited (gonnaworkthruthis) : 7/9/2009 5:37:57 PM (GMT-6)

Posted 7/9/2009 5:42 AM (GMT 0)
i can totally relate to your situation.  my supposed best friend doesn't call and ask me how i am either.  it really hurts my feelings.  and it also bugs me because she once worked in a pharmacy a few years back and now thinks she's the authority on the disease/meds, etc. when in reality she has no grasp of the situation. she acts like it's no big deal.  when i was first diagnosed, she said she'd just get the colon removed like it was no big deal!!!  and this is so not true by the way, she would never do that!!!  sometimes she'll go for over a week without calling, and doesn't ever ask how i'm feeling.  i don't get it.  and my family is NOT supportive at all.  in fact when i got the disease initially, they practically attacked me and told me i was stressing out too much and that's what caused it and if i'd just stop stressing, i wouldn't have the disease!  then they yelled at me because i didn't want to go out in public while on prednisone because i was extremely puffy and depressed.  no support whatsoever, in fact it worsened my situation and made me severly sick and depressed.  the people you thought you could count on just don't always deliver i am afraid.  over the years i have had to learn to rely soley on myself and just be my own best friend.  and whoever suggested to eat right, exercise, and do what's best for yourself is right.  forget the people who bail on you.  they just don't get it!  at least you have a supportive mother and sister!  that's someone!  i think the only people who understand in my life are my animals!!!!  they offer unconditional support.

Posted 7/9/2009 11:10 AM (GMT 0)
I have a great relationship with my hubby's family, a somewhat good if not dysfunctional relationship with my family and I have an awesome set of friends. I have two best friends, these two ladies I have known for almost 30 years.

When I was first diagnosed (I was 22) I didn't tell many people about my Uc. I just said that I got diagnosed with it and left it at that. I would then resent when people wouldn't call to ask me how I am especially when I was feeling alone and flaring pretty bad. I just wanted some sympathy or aknowledgement. I didn't tell these people about what I really went thru on a daily basis. It wasn't until about 5 years ago that I finally opened up about my Uc and became more vocal. I explained in detail what it is that I am facing every single day. It was at that time that they seemed truly astonished that I kept silent for so long and they really had NO clue what UC really was. So now when I tell them I am flaring they call me up every so often to see how I am. Some people you need to sit them down and explain in detail exactly what UC is.

Your best friend might be scared for you and by shutting you out may be her way of coping with your condition. But you need her to face it head on and let her know exactly what it is that you are feeling or that resentment is going to grow and you two will drift apart.
Posted 7/9/2009 12:19 PM (GMT 0)
im 34 now and have this disease for 9 years or so now....

you gotta tell people the gory details down to the last bloody fart! LOL
it makes for some really funny stories. im always talking about poos and farts to my fam and its pretty funny.
the more you share, the more they know and can start to attempt to understand.

i always tell when people ask. i hold nothing back!
then they go "oh my god, you poor thing, i cant imagine.." or "that sucks"
and it does suck.
a lot of people have a lot of crap diseases. this certainly isnt the only one or the worst one.
i'd say crohns is way worse.
and some people have really bad other conditions that we can't imagine what its like.

some people aren't in touch with others and how they feel. certainly don't take it personally.
even if its a good or best mate. and if it IS a best mate, then you should tell them long ago that their attitude or behaviour hurts your feelings. if you cant tell them that, then you're just as much to blame.

when im in remission, i completely forget how bad it is, until i flare again. life is grand and back to normal when in remission, so you cant really blame someone who's never had it before. and im someone who has had a year and a half long super acute severe flare the whole time, was hospitalised and went down to 90 lbs and bled the whole time and was pretty much perma-aenemic. so im not taking this lightly here.

i know its hard and totally cliche, but keep your chin up and just know that you are tougher than the rest to be living thru this horrible disease.

and in saying that, i will have to mention that it is pretty annoying when someone that has gas pains says, 'i know what you're going thru" .... LOL!! yeah right!
Posted 7/9/2009 1:32 PM (GMT 0)
I think most of it is due to a lack of understanding of the disease and many people shut out any thought of what they don't or can't understand. The hardest part is that we are walking around with no outward signs of the disease. I remember thinking when I first got this is if I could just tell people I had cancer maybe people would understand how horrible it is. Now how is that for ya? The other part is that some people don't do well with misery. I've had a few things happen that were life changing events and I lost several close friends. And I mean people that I thought were there for the long term. They just couldn't cope with the change so they left. And yet....there are the friends who have been with me through every crazy stage of my life and stayed true.
Posted 7/9/2009 2:01 PM (GMT 0)
I actually had one close friend compare his nosebleeds(they came on sudden and often) with my urgency, and worrying about finding a bathroom. 

He said "well how do you think I feel never knowing even when driving when I will get hit with a nosebleed?

I responded with "you can just pull over anywhere, no matter where and hold a hanky to your nose until it stops.

If walking down the street you can stop in a doorway and hold your hanky to your nose until it stops.  If anyone sees your nosebleed they will sympathize because everyone has had one at one time or another.

Now how do you think it would go over if I just pulled over in my car and did my business on the side of the road?  How much sympathy would I get if I stopped in a doorway while walking and did my business there?

Does your nosebleed smell awful?  Is it something people get embarassed hearing about? Think of how fast your nosebleed comes on, and that's how fast my bowels want to let go.  Then after thinking of all these things, ask me again how do I think you feel, as if there is possibly any comparison in our 2 problems"

People sometimes amaze me...

 

Posted 7/9/2009 2:37 PM (GMT 0)
I really think most people don't want to think about it at all, because it scares them that they could get UC too. After all, if my best friend got it, why not me? And they think it's gross and embarrassing, just as we did when we first got it.

I've learned to compartmentalize. My husband is very supportive, and this forum helped me enormously when I was so sick. My other friends know I have it, what it is, but my comments in response to their standard "How you doin'" is usually limited to either "Great!" or "Having a bit of a difficult day." They don't want to hear about my health, they just want me to be the same friend I've been all along. I think knowing that I'm not going into detail with them allows them to hear when I'm not feeling well, and they will then be considerate of my inability to do something they are doing.
Posted 7/9/2009 2:52 PM (GMT 0)
I'm lucky, my boyfriend is mostly understanding and helpful, but he still gets massively grossed out by anything poo-related (don't know why because he spends plenty of time pooping, himself).

My friends try to be helpful as well, same with the coworkers I had during my last flare. At the very least, they're concerned.

But my family doesn't get it at all. They keep asking me questions stuff like, "So, are you going to be on medication the rest of your life?" "Could it be something you ate?" "Could it be stress?" "Are you sure you have to keep taking your medication?"
Posted 7/9/2009 2:54 PM (GMT 0)
Interesting topic. I've noticed in my case, the friends who have really rallied around are the ones who have experienced health problems themselves. Of the two who have been the most supportive, one has lupus, the other does not have one chronic illness but has had various issues and has had a couple of surgeries and been out of commission for periods of time. These two friends are the ones who regularly check in with me, are able to offer advice on how to deal with specialists, doctors' assistants, medical tests, etc.

Friends who have never had health issues? They just look blankly and change the subject... or if it's by email, I sometimes never hear back from them.
Posted 7/9/2009 3:37 PM (GMT 0)
I definitely agree that there is a huge lack of understanding about inflammatory bowel disease. I see it all the time. But what I don't agree with is that someone who is supposed to be your "best friend" would blow you off when you are having a rough time, no matter if they understand it or not. That's not a lack of understanding, it's a lack of friendship. I certainly don't make time for people like that in my life and I think that has come to me as I've gotten older (diagnosed in 20s, in 30s now). You can't choose your family, and mine certainly say stupid stuff when it comes to this disease, but I have the most supportive group of friends in the world and those who aren't are no longer friends.
Posted 7/9/2009 3:56 PM (GMT 0)
I most definetly agree with you the frinds i have although dont know much about U/C will make the right noises when i am having a bad day and i feel that they are trying to help i dont say much to my family only my husband who is very supportive if friends are like that i would say they are just people you know as true friends stick by you no matter what.
Posted 7/9/2009 4:37 PM (GMT 0)
See, that's why I LOVE my best friend and boyfriend to death: my best friend came by to keep me company during my colonoscopy prep (at least, between her classes) and took me to pick up my meds, and my boyfriend was willing to sit through the the colonoscopy with me and get us a taxi home. I have a few other friends who have done medicine runs with me as well.
Posted 7/9/2009 6:42 PM (GMT 0)
I avoid a lot of the frustration by not telling friends or coworkers or anyone I have this. Hearing what stress it causes people to deal with friends' and other people's reactions makes me think I made a good decision. And it's just not a very dignified disease. Who wants to hear about it, really? (except you guys, bless you).

Unfortunately, this disease has made ME less sympathetic about people who have health issues. My husband's family makes a HUGE deal out of every little medical thing, even medical tests. The rally around Grandma just because she was having a simple colonoscopy, geez!! TMI, seems a pretty private matter, why did I even know about it? (It was routine and they found nothing of course). My mother had a couple of surgeries and was such a baby about it, but she was not in pain and was going to heal, seems she was pretty lucky to me.
OK, enough sounding off.

By the way, the worst and most insulting IBS/IBD movie is Along Came Polly. It's supposed to be funny, but it is not.
Posted 7/9/2009 7:02 PM (GMT 0)
The only person who ever really truly knows how I'm feeling and what I'm going thru  is my husband. Sometimes my sister. My Mom is totally clueless, despite the fact that she's been to my GI with me. My coworkers know a little bit, enough to give me slack if I need time off. Same with my supervisors- they know it's UC, but that's about all they know. My friends just know it's some sort of "stomach issue". Which is fine by me- I'd rather they don't know! My daughter knows what the deal is, depending on whether or not Mom has to pull the car over & jump out while we're out doing errands! I was diagnosed just after she was born, so she's pretty used to it. I don't tell any people about my day to day symptoms or problems, even my spouse- who really cares? Let's be honest here- do you really care about other people's problems? Sure, no one wants to see someone they care about suffering, but that's about the extent of it. I don't see any else in this thread talking about how really lucky, healthwise, we are- so we go to the bathroom a lot....sometimes it's painful & bloody & upsetting. Some days we're stuck at home because we can't leave the bathroom. So we may end up with an ileostomy or jpouch some day. But really, what more is it? I was getting an infusion yesterday, & there was a woman in there in a motorized wheelchair getting Boniva- she's been on pred for COPD for the better part of the last 5 years, she has osteoparosis, she's extremely overweight, diabetic... I couldn't help but think "Thank God that's not me!" By being resentful of not getting the appropriate (to you) sympathy, you only screw yourself. Be happy you live somewhere where you have access to decent medical care & meds. Granted, I'm 38 years old- I may feel differently if I were a teenager or in my 20's.
Posted 7/9/2009 11:43 PM (GMT 0)
Lol! Eva Lou, your post makes me want to go out and kick some as*!

Ill try to keep a bit of that edge with me...

So it sounds like you all recommend opening up to those closest to you, based on what it is they are able to handle or not. And if you have one person who is htere for you, youre golden. I am definitely going to talk to my friend about this and tell her that Ive felt unacknowledged and angry. And well see what happens...
At least I now know that there are a lot of sympathetic ears right here in this forum.
Thanks, guys!

Post Edited (gonnaworkthruthis) : 7/9/2009 6:13:30 PM (GMT-6)

Posted 7/9/2009 11:56 PM (GMT 0)
Oh and whoever said the animal thing, yes! My cat is my baby, I really trust him. He hates everyone but me, and when he was comfortable right away with my bf, I knew he had to be a good guy. (Hope that doesn't sound pathetic.) But yeah, my cat helped me a lot when I felt crappy and horrible. I had bad UC symptoms and got the flu on top of it, I'd run to my bed and he'd jump up and lick my nose til I moved. Animals are great =)
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