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Constantly feeling like im being selfish...

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Posted 8/25/2013 11:14 PM (GMT 0)
Im constantly feeling guilty or very very alone.

Ive had crohns for four years now, was diagnosed at 18 and had to learn to grow up and deal with it very quickly. Spent the first year in denial like im sure we all do, but i soon started to realise this is a lil more complicated and a little more serious that the doctors make it seem when youre doped up just wanting to be discharged and go home lol.

This summer I had a bit of trouble with my crohns as i always do.. first time its ever really worried us abotu what to do though as ive now been on most of the medication... my doctor decided to put me on remicade, which i had taken previously a few years back.

This is the first time my boyfriend has "experience" me getting sick. weve been together a year and a half, and when i say experienced, i live at home with my parents still and whilst being sick he comes over to see me once a week if im lucky. i wasnt hospitalised (touch wood) didnt lose any drastic weight or anything, so you cant even really tell im going through anything right now. i dont look sick.
but he doesnt know how to deal with it, he doesnt understand the severity of this disease, and i dont think anyone else does either until they have it... makes me feel so alone sometimes.
His family are supposed to be going on holiday 5 hours away from where we live, camping... and none of them seem to appreciate what a big deal being not only 5 hours away fom home my parents my doctors, let alone that its camping.. ive just started a pretty strong medication and im exhausted from it, its the beginning of the school semester i have a lot of college work coming my way...

I often turn to my mum for reassurance that im not being selfish but now she just shrugs at me... she wants to make me feel better but i guess she doesnt know what to tell me anymore...

i guess im posting here cos i know you guys will understand, yeah youre being selfish or no i understand where youre coming from lol theres alot of honesty here. and understanding.

i just am so tired. and i think also as much as i feel alone because of this disease, it makes me want to be alone, because its easier than having to deal with trying to help others understand and explain it all, all the time. id rather go to sleep go to my classes and go back to sleep i dont wana deal with other peoples BS...

im rambling, but i guess i needed to get it off my chest.
thanks for reading lol
Posted 8/26/2013 1:23 AM (GMT 0)
I remember the week before I was diagnosed my boyfriend and I went camping with his family. And not at a campground, but a lake where there was a tiny, disgusting outhouse half a mile up a steep hill. And me with 20+ bloody BMs each day. It was the first time they had met me, and they ended up with a poor opinion of me because I couldn't eat their food and my bf would make me plain white rice over a campfire. I felt so sick the whole weekend.

So no, I don't think you're being selfish at all. As much as it's hard to admit, Crohn's is a part of us and who we are. Our significant other may not understand or be able to empathize, but he/she needs to love us for all of us, and that includes the "us" that has CD. It's like having cancer, only in some ways worse (in terms of needing to run to the bathroom while camping). So if your bf isn't willing to accept that of you and not give you a hard time about it, then you might want to reconsider the relationship. He might not understand or agree or even think you're being dramatic, but he needs to respect that you know your body.
Posted 8/26/2013 1:24 AM (GMT 0)
Needless to say, that bf and I are no longer together. I since was married to a wonderful man who had no idea how tough CD could be bc I was in remission the whole time until two months after our wedding, and then in our first year of marriage I was hospitalized 14 times. He never once complained, not once.
Posted 8/26/2013 11:44 AM (GMT 0)
You are not being selfish...and in my exhausted state I actually cried along with your post. I have been worried about being selfish lately too. But we are not. A good man will learn and adapt to your needs. But, it takes time for them to learn. Unfortunately, we don't always have the patience for their learning curve because we are just too sick to deal with it. But, I do say be open with your guy and let him know that not every struggle with CD is obvious. Also let him know that camping is difficult and why.

I am going camping this weeked. But we stay in a cabin with a bathrrom/shower facility yards away. There have been years when I never left the camp chair or cot but to make my way to the bathrrom. My husbnad gets it, but it was an eye opener to those that go with us.

I also have to tell you that my husband and I have been together since 2001. I showed all my meds right away and was pretty open with issues (not graphic, just that pain and surgery and bathroom trips prevail). He was understanding in our years of dating and first years of marriage. He actually encouraged me to talk about and explain to him---this was a big good sign! That being said, he got a wake up call in October when I had my first really big flare since 2001. He was scared and did not know what to do and he now realizes he didn't really understand before (he thought being a little tired and diet were the biggest worries).

If your guy has patience and understanding he will be around and help you. This is not you being selfish...this is others being understanding and compassionate.
Posted 8/26/2013 4:54 PM (GMT 0)
Oh novice, I feel your pain. You are *not* being selfish because your health always has to come first. It's always nearly impossible to find someone who can truly understand what you're going through, even when they have a similar illness, because everyone experiences illness differently, and when you're younger I think it's even harder to understand illness and empathize with it because the young think they're invincible. When I was diagnosed at 25, my bf at the time, who was 24, couldn't handle my illness and I went through the worst of it alone --including all the tests and treatments--and didn't really tell him about anything. But I couldn't go out to bars or restaurants anymore and just felt sick all the time and it was too much for him, so he ended the relationship 7 months after I was diagnosed.

Honestly, that was for the best because he was a bit of a jerk anyway, and when I met my husband, I found someone who was truly understanding and empathetic of everything I was going through. I've been much sicker this last year--the first of our marriage--than I even was the first of my diagnosis and he has helped me every step of the way and allowed me to be as "selfish" as I need to be to get healthy. That's all that matters in the end.

You're always going to run into people who don't understand, who look at you as if you're being selfish or a "bad" person, but just remind yourself that they're doing that in ignorance. They have no idea what's going on inside your body--no matter how healthy you look on the outside. Don't let their negativity drag you down. Just focus on the things you can do to make and keep yourself healthy and block out those people or, if possible, try to educate them about what Crohn's is and why you have a restricted diet.

I'm sorry you had such a bad experience but it will get better. And you're definitely not alone--not with all of us here too! :)
Posted 8/26/2013 5:46 PM (GMT 0)
Hi there novice.
As you can see and already knew, you're definitely not alone. We've all been there, gone through it or are going through it.
I can only reinforce what others have said, you're not being selfish. As for feeling guilty, I had been made to feel that way at a young age due to my step father who just didn't get it and didn't understand. He didn't care to understand, he thought it was all in my head.
Every summer I was forced to go on trips, these were cross country (in the U.S.) trips. In a car all day, stuck in it for hours and hours and that's when all the "what ifs" crop up. What if I have to go to the bathroom soon as we pass that rest area? What if we pass it, I can't hold it and have an accident?
I can say the commercials for Crohn's disease, shown in the U.S. are accurate when they include the what ifs. At times, our lives do revolve around bathrooms and what the disease is doing to us at that time or what it's going to do to us.
I still find myself many times feeling guilty if I'm tired or having issues with going to the bathroom. I was programmed all wrong as a kid, nothing I did from my step fathers perspective was, right. It is the issue of times where we physically appear to be OK to others yet inside, we're hurting and we know things aren't going well.
It is why our disease is often said to be an invisible disease and the fact that people with Crohn's don't talk about the disease, much, if ever. We're pretty much only OK discussing our issues with the people that understand, those with Crohn's too.
Only you really know if you want to disclose, educate what you have, what you're going through with a significant other. As others have mentioned, people do look at us and think or say, "you look fine, I don't get it." They won't unless they're interested in learning about the disease or once again, have it themselves.

As far as your energy levels, have you had blood work done recently? If not, I would recommend getting it checked. As I'm sure you're aware you could be suffering from a deficiency, B-12, Etc.
Also you could be feeling down, a bit depressed but you can always come here to vent and have discussions with the great people here. :-)
Posted 8/26/2013 5:56 PM (GMT 0)
((((HUGS)))) novice!!!

You're not being selfish and it's to be expected to feel the guilt...I'm sure all of us feel it. Some cases are milder and it may only affect their lives slightly, while others are completely controlled by this ignorant disease.

We can't help that this disease does this to our bodies and how it can deeply Impact our lives day after day, so it's natural that we would "feel" emotionally the way we often do, that's not wrong and it's not our fault.

I've been flaring for 22 years now, day in and day out, over the years the odd spirt of it being a little more manageable but for the most part, not very manageable at all...it completely dictates my daily living and I have a lot of guilt and anger and sadness over it...but I cannot help it, just as many of us can't...and I try with diet changes, exercise etc but still, this disease always gets the last word and it's frustrating as hell.

You're by no means totally alone, at least you have this place to share with others that know what you're going through...not the same as having family and friends understand but that's not all it's chalked up to be either...my mom had UC and she understood where I was coming from but her UC wasn't as horrible as my CD has been so I'm sure she (knowing her the way I did) thought I may have over exaggerated at times (couldn't be farther from the truth though) it is what it is.

All we can do is take each crappy day as it comes (literally) and do the best we can, we didn't ask for this disease, it chose us I guess...don't beat yourself up, the disease is already doing that for you.
Posted 8/26/2013 11:21 PM (GMT 0)
I 100% empathize with what your feeling. Even though I know having Crohn's is not my fault I still feel guilty when my issues impact those I care about.

The way I have mitigated those feelings is to ensure I do everything I can to control this DD. For me that includes diet, minimizing stress, exercise (when I can) and always taking my meds. I really do not now of anything else I can do, so when I feel crappy, I remind myself I really am doing everything I can, and that helps me with my feelings of guilt (not 100% but it helps for sure).

Healing thoughts

Dave

Posted 8/27/2013 4:53 PM (GMT 0)
Oh wow i didnt come online yesterday as it was a bit of a tough day, but i certainly wasnt expecting to get this much support! THANK YOU

scifigal im sorry you went through that, i had similar situation when i was first diagnosed too, i ws 18 so looking back i shouldnt have expected any different, its such a hard predicament to deal with.
I dont think my current boyfriend is unwilling to accept it, i think it ovewhelms him to the extent that hed rather be ignorant and uneducated on the matter, and that really annoys me. because how could he ever understand the support i need if he isnt willing to educate himself!
Im so glad you have found someone who gives you the support you need without question, it gives me a lot of hope!

Habshockeyfan, sorry to make you cry lol, i do the same sometimes, when things are overwhelming just reading someone elses familiar thoughts and stories makes it all come out!
Me and my boyfriend had a little bit of a blow up a week or so ago when i quite bluntly put things into perspective for him, it may have been a little too much, but i guess i was waiting to see if hed crack or cope. so far nothing is really any different, but my mum keeps telling me its too soon to see any thing yet. Part of me wishes i could lay it out in the open like you did and let them see how tired i am and how my trip would revolve around my crohns, but thats not who i am, if i dont pretend im fine and get on with stuff i tend to drop and now get back up (if that makes sense) not only that theres going to be 7 of us in one camper! I dont feel comfortable with that.
I guess i bring some of this on myself, because i try to brush it off, because i dont want my life to revolve around having crohns, when i feel good. and people find it hard to accept that my life HAS to revolve around crohns when i dont...

Vitaka your story sounds so similar to my diagnosis social situation, and a mix of my sitation now. Thank you for your support, i really wish i could be a little more selfish sometimes lol. Like i had a class yesterday i tried to give the professor a note explaining i had a "disability" and i tried to ask him if it would be a problem if i didnt bring a doctors note every time i missed class, because itd be stupid to waste my money on a drs appt when they cant do anything! and he just wasnt having it. and im exhausted today after school and my mum has left me a list of jobs to do, i have studying to do and shes sent two girls my phone number and told them to come and hang out at my house today! I DONT WANT TO DO ALL THAT IM TIRED lol. i just want to scream at people sometimes.
thank you for making me feel a little less selfish lol

Datawraith. God i am so sorry you used to have to endure that! just the thought of going through that would be enough to get me so stressed out i wouldnt be able to leave lol. I have a very unsympthatetic step dad too, he went through cancer and a few other major health issues, so hes very unsympathetic but i also think its cos hes uneducated about the disease too.. but i dont complain cos he pays my health insurace so i know he cares he just doesnt understand.. and im sure its the same for many people they care but they dont always show it in the right ways, which is frustrating for us...
As for my bloods, not had those checked lately, but i just started remicade again, and it used to make me tired before i think. and im coming off pred just put it all down to that! if i still feel like it by next week i might just ask for them to check it all out, cant hurt to know i guess.
thanks again for making me feel less alone

PB4 i dont know how you have dealt with this for 22 years, but i guess the time passes anyway regardless of whether youre healthy or sick. I could probably say ive been flaring for most of the years ive been diagnosed as i only seem to have a few months of proper remission the rest is juggling meds to try and fix something... so crazy how the time flies.. it must be hard having a parent with the disease too.. im not sure how i would have dealt with that situation and my mum would have been the same and assumed i was exaggerating a lot. im sure she thinks that anyway and shes the figure of health. lucky her lol. thank you again, its very easy to blame yourself.. i constantly feel bad about stuff that "normal" people wouldnt because they wouldnt have to think twice about doing it...
My mum keeps sharing the spoon theory with people to help them understand crohns a little better in the aspect of our energy and pain affecting our daily life, but she does stupid things like she has today, sent her friend my phone number and told them to call me n come over, and given me a list of chores, knowing we stayed out till 11 last night and i have school work to do.. she just forgets.. i know that but lucky for her she can forget. every time something new happens that i think will help her understand a little more how messed up my body is, she forgets a couple of days later lol. so i feel a little guilty today because i snapped at her for doing that, but, i think i am allowed one snap a day right? lol

Dave i love what you said about how you reassure yourself its not your doing because youre doing what you need to do to stay healthy. i might have to make that a little mantra, i am doing everything i can do to stay healthy. ill stick it on my mirror lol.
Thank you for your support



All of you thank you so much i feel much better today for it. i still feel a littl blue of course but i certainly feel less alone in this disease! Im sorry your all here with me, but i am grateful for you all!
Posted 8/27/2013 6:06 PM (GMT 0)
You're right novice, I have no idea how I've been doing it, guess I have no choice and that's how lol but it's very strange how "day by day" all the sudden turns into a couple of decades...my mom didn't get her UC until AFTER I got my CD--she was in her mid/late 60's I was in my 20's...she blamed my dad, she had to eat those words after she got sick (I'm betting she didn't digest them very well either lol) she passed away a few years ago (not IBD related at all).

You're definitely allowed at least one snap a day lol...for what we go through we should be allowed to get away with a lot hahaha!
Posted 8/28/2013 1:08 PM (GMT 0)
I've always felt alone with this disease and don't feel any less alone now that I have an ostomy. My parents are literally the only people who have been good about it, eg visiting me every day when I was in hospital. If it wasn't for them, I'd be utterly alone.

People just don't want to know about illness and disease, unless it's happening to them, their child, or (depending on the relationship) their spouse. If you are ill or you are depressed, you are alone. Nobody wants to hear about it. True story.
Posted 8/28/2013 3:15 PM (GMT 0)
It's obvious you're not being selfish. I may not have ever encountered symptoms that are close to yours, but having other recurrent diseases I can really put myself in your shoes and understand that sometimes you feel that no one can understand you: because I pass from that every day.

Don't feel that you are being selfish because you are not, unless someone has passed from that same or at least similar condition, they are not in the position to understand.

Explain to your boyfriend the severity of your condition, communication is always the most important thing in a relationship. Don't go camping if you're not in form to do so, don't do something stupid. If your boyfriend really loves you, he will understand. Remember: health first!

Hope you feel better soon
Posted 8/29/2013 2:40 AM (GMT 0)
Nicecupoftea - sounds so sinister lol but your right in this whole time ive battled this disease ive only had one friend stick by me but then I moved across the world and all I have now is my mum lol n even she struggles to deal with me.
I read a lot of your posts and can relate to alot of them, I dont have an ostomy so I wont tell you I understand the emotional side that comes with that but.Thanks to the people on this site I dont feel so bad when I have days feeling sorry for myself because were human were allowed to break even if we dont show anyone...

jcus thank you. I think you hit the nail on the head when you said communication is key. I never feel listened to by my boyfriend. We have argued twice in two days because in my opinion he doesn't listen to what im saying. I dont know how im meant to explain the severity and responsibilities that come with this disease when were arguing over petty things. Because ill tell people im ok because thats what they want to hear no one wants to hear you moan. But I am honest with him n I tell him I feel bad but he jumps down my throat thinking im magically better when I tell someone else im ok. I dont know how I can keep telling him it doesn't work like that.
Sorru for going on again but its so frustrating and it makes you want to push them away even more cos the stress bring more pain and suffering than any relationship is worth.
Posted 8/29/2013 10:38 AM (GMT 0)
Find a time when you are not fighting and tell him you want to talk to make something clear. Make it clear to him that because of your condition you cannot do certain things that he'd like you to do, even though you wish you could. For ex: I wish I could go to the beach with my friend but i just cant swim: AND THEY HAVE TO UNDERSTAND! Show him articles on the internet discussing your condition, show him this thread. If you boyfriend can stand you being depressed and keep thinking that your faking pain and that you're ok just because you pretend to be ok with others, he doesn't understand the meaning of having a boyfriend/girlfriend. Having a boyfriend/girlfriend is supposed to make you feel better and not worse. That person is supposed to be the one you go to when you are not feeling well: the person you go to to discuss your problem and most certainly not the person you feel is the most difficult to explain something to. If your boyfriend doesn't understand, he is not worth your time: but if you do not make means of managing to tell him than it is your fault. Sometimes us males are a bit difficult, and we like to stick with what we make up in our mind the first time round, but if you can make an effort to make it easier for him to understand, he might ! If at the end of the day things do not work for you this way, please note that your condition won't go well with depression so I would tell you to go over the possibility of ending things with your boyfriend. At the end of the day this might make you feel better!

I am not a professional in this area but I hate other people finding a difficult time in relationships especially when they are passing from a difficult time dealing with their health. I had been in a very long relationship and I try to speak from my experience. Hope my words help you a bit at least!

Take care
Posted 8/29/2013 1:07 PM (GMT 0)
Anyone can be a great friend when you are happy and well. It's the folks who know how to stick by you when you are sick or challenged that show their loyalty and they are the gems of the world. You are very young and you have unfortunately, a lifelong illness. Hopefully you will have lots of times of remission, but this relationship does not seem healthy for you in the long term. I've been married for 30 years. My husband can drive me crazy in all sorts of ways, but when it comes to me being sick, sometimes for months on end, he picks up the slack, never blames me and supports me. I hope I can be as kind and loyal if he ever gets sick. Don't accept anything less.
Posted 8/29/2013 5:34 PM (GMT 0)
novice - Thank you. I'm in a perma-depression, so that probably makes me see everything in a bleaker light than it actually is. But yeah, nobody in my real life gives the slightest darn. If I tried to tell anyone how I really felt for longer than 5 seconds, they literally wouldn't want to know, they'd go 'oh dear' and change the subject as soon as they possibly could. But they'll rant about something which pissed them off for half an hour, or whatever. Or moan for 10 minutes solid about having a cold.

My mum is selfless enough to listen to all the utterly selfish and/or self-absorbed people in my family. I am not. I'm not really interested in the complaining customer at work or the lodger who didn't fold the bathroom towel exactly symmmetrically, or whatever. If people expect me to listen to that crap for half an hour, they can listen to me explain Crohn's and the inner workings of the bowels to them.

Anyway! Got kinda sidetracked... >.>

I hesitate to give relationship advice with my notable lack of relationship history ... okay, hesitation over >_>. Is there any possibility that your boyfriend might be feeling a tad 'dumped upon'? I agree, he doesn't seem very sympathetic or supportive, but I can also imagine it might be frustrating for him to see you apparently being well with other people, and not with him. I'm a bit ashamed to say this, but when I was diagnosed with Crohn's, I never saw what all the fuss was about with it. I don't think it was even denial; my symptoms were so mild, it was practically the same as being a 'normal' healthy person.

The exhaustion, fevers, anaemia, and finally pain didn't set in until later on. And now, after 8 years of severe illness, yeah, I get it. I get it with every fibre of my being now - it's burned into muscle memory, can't see me ever forgetting. But unless your boyfriend goes through the same thing (which I hope not), he would have to be an unusually imaginative person to truly understand.

That said, it's still possible to have a sympathetic and loyal partner who may not fully understand, but does support you. That's the main thing. Okay, it's dinner, so end of ramblings. For now... >.>
Posted 8/30/2013 3:44 AM (GMT 0)
Thanks again. I really don't know what to think about any of it.
I decided a few hours ago that I would go camping if I achieve nothing but to share how unwell I can really be instead of hiding it. I think itll probably also make or break my relationship too. Im making an effort even tho I am scared out of my mind. If I spend the whole weekend feeling uncomfortable with a drunk boyfriend I think that will speak for itself.

I actually cried when I realised I wouldn't sleep in my bed or see my dog or my mum for a few days lol ive actually done nothing but cry since I decided to go lol.

I guess you'll hear from me tomorrow or the next day if it isnt going too well haha.

thanks again for the advice
wish me luck
Posted 8/30/2013 12:49 PM (GMT 0)
I hope you change your mind and don't go. If you are crying and that overwhelmed, I can't see how this trip will be helpful or enjoyable for you or your relationship
Posted 9/2/2013 7:48 PM (GMT 0)
I didn't change my mind gumby you were right tho I probably shouldnt have gone. Because of course no one really realised what a sacrifice and effort I was making. I ended up eating crap food the whole time even tho I took soups and yoghurts of course they had to eat out. At a restaraunt where nothing was safe to eat.

I dunno I'm glad I went from the perspective of knowing I made the effort for my relationship im just sad that it seems I was the only one noticing that effort.

anyway on a plus note im home! Im going to have a bath put my pjs on and no doubt do some studying but im back in my comfort zone and I can eat within my limits and sleep ib my own bed :)

Thanks for the continuous support you guys gave me! Im sure ill be moaning again come tomorrow lol
Posted 9/10/2013 3:24 AM (GMT 0)
Novice, I just stumbled on your post. This disease sucks big time. I was dx at 14 and it really didn't affect me until college. I missed out of so many trips and activities. I once spent a wedding reception in the bathroom for hours. I finally realized I had to be honest with people about what was comfortable for me. Otherwise, I seemed aloof and distant because I was so focused on the bathroom. My friends all knew I had crohns and would usually help me out by right away pointing out where bathrooms were or picking restaurants where there was food I could eat too. I tried to reciprocate by eating at home sometimes so it wouldn't be an issue if I didn't eat anything. I felt that the more open I was, the more understanding people were.
When I was dating my husband, I was very open and honest with him. I remember talking to him on our third date that I have Crohns.
After we got serious, I had another long conversation with him about the future. I told him there were going to be days where I was sick in bed , vacations may be cancelled it may be a problem having kids, I may need surgery. I asked him if he was ready for this. He said that we never know the future when we commit to someone else that he may get sick one day would I leave him? I said of course not.
So flash forward eight years and things are great and not so great but that is true of all relationships. We finished our training, got good jobs, had a beautiful baby but my crohns was always looming in there too. My husband is a great guy but he gets frustrated too. I have learned he is angry at the disease not at me. I have been so sick, he has had to do a lot around the house. I recently had surgery and I am not working right now. I asked him if it was too much for him did he want out? He looked at me and said " I love you you moron I am not going anywhere. "
My point is there are men out there who will support you, hold you in the middle of the night when you are crying and tell you are moe beautiful with a stoma than without. I support him too, he tells me all his frustrations and fears. I rub his stomach when he eats too much and I listen when he is upset, a good relationship gets better when things are tough. Please don't anyone make you feel selfish four your disease. You don't need that.
Posted 9/12/2013 1:34 AM (GMT 0)
Camping is a difficult place to be when you have CD. My son has CD. Ten years after he was diagnosed my 50 year old sister was diagnosed with CD and two years later so was her son. I know many people now who have CD or have someone in their family who does. You may want to try the CCFA.org for support groups in your area. You could also start a Facebook page for CD individuals in your area. You may be surprised by the people you meet that are affected by this. You need support through the difficult times.
Posted 9/12/2013 7:18 PM (GMT 0)
My point is there are men out there who will support you, hold you in the middle of the night when you are crying and tell you are moe beautiful with a stoma than without.

Some women attract such men; other women attract rotters and cads; and others still, like me, attact literally nobody.

Literally spent 13 years of my life with Crohn's with nobody realising once that I was suffering. Other than my parents when I spent hours locked up in the bathroom or, eventually, groaning on the floor with a pain I could not control.

So yeah, loneliness is my being, not like I'm ever gonna find anybody to come along and relieve that loneliness, because I have neither the looks nor the personality to attract anybody to me and that is my life.
Posted 9/12/2013 7:42 PM (GMT 0)
ncot, I am not trying to sound like Suzy sunshine. There are a lot of jerks out there. We suffer so much from this disease. We deserve to have understanding people in our life who can cut us some slack when we are ill. I just don't want anyone to stay in a relationship where they feel guilty all the time. I ended a relationship with someone prior to my husband because he thought I was faking it to get out things. I am sorry you feel alone but at least your parents support you. Take care.
Posted 9/12/2013 8:03 PM (GMT 0)
Don't get me wrong, I wasn't advocating staying in a relationship with somebody who didn't care. To the contrary, if somebody's putting you down, belittling your problems, or whatever, then I would be the first in the queue to advise you to leave. Nobody deserves to live with that type of undermining.

On the other hand, advice about the wonderful men out there is meaningless to somebody like me (I know it wasn't addressed to me, but I do have a stoma...). I "should" be grateful for my parents, but actually even that is nothing like that simple. Have felt like a fraud at the hospital sometimes when the doctors and nurses seem to assume we are a normal, loving family, when we are not.

I have also yet to find a person with great friends and a great husband who understands what it is like not to have those things. Just as somebody who has always been healthy cannot possibly really understand what it's like to be chronically ill, so I don't think somebody who's always had a loving family, loving friends, spouse, etc. can understand what it is like to have grown up and lived a life essentially loveless. The pain of that is sometimes worse than the Crohn's pain, and is certainly a good deal more untreatable.
Posted 9/12/2013 9:10 PM (GMT 0)
ncot, I am so sorry you have to deal with this disease on your own. You are completely right, no one can understand your specific situation. I know I feel depressed and isolated at times even with support, so I really emphasize with you. I wish I could give you a hug as long as you wouldn't punch me! :)) just kidding!
Keep fighting!
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