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Posted 7/3/2005 11:20 AM (GMT 0)
  I have Crohn's disease,.. and i have been suffering for some time with this.  My partner and I have alot of problems because he is very healthy, and I am not.  There isn't alot of understanding, about my disease from his part. But i was wondering if someone could give me some advice on how to deal with this one particular problem that keeps coming up.....

Its pretty bad when others dont understand, but when the one u live with, that actually sees u everyday doesnt understand.... it really upsets me ! eeerrrrr....uuuggghhh ! ya know? Yah, than he'll complain like a baby when something is bothering him. He is a very determined man, (which I am highly impressed with), but on the other hand, I cant be determined when my body will not let me confused   So this is a big problem for us. He has the utmost self confidence (which i have helped him build over the 18 years we've been together),... but somewhere along the line, i have lost mine. sad He doesnt understand why i want to shy away from some situations, and stay homewhen i have the big "D". If i am put in a really stressful enviorment, of course my mid, and anxiety makes my "D" worse. His family act all upety, up. I am VERY uncomfortable around them. They have never even tried to ask about my disease,... they just judge me as lazy, unsociable. My partner doesnt even try to explain either. So i am very paranoid when i have to go around them. They judge me, for what their ignorance hasn't informed them about this disease. So they are very judgemental. They were never there for him throughout his life. Now, all of a sudden, they are like wow, so important. So alot of times i will stay home. Than i am judged again. I just dont know how to deal with this anymore. Its been a rough 18 years,... and i am getting tired of this rollercoaster. Any advice?

Posted 7/3/2005 11:23 AM (GMT 0)
oh yah,... I wanted to add...

I have been raised, that when there is a problem, people talk it out. His family throw everything under the rug. Than they talk about everyone behind their backs. I dont understand this either. I would love to sit down with a few of his family members, and let this all out. But he will not allow me too. He says it will be more complicated. Meanwhile, I suffer. And i mean suffering alone with this, is really killing me inside.
Posted 7/3/2005 10:56 PM (GMT 0)
Hey Mesh, I am one of the stuff everything away and not talk about it. I has taken alot out of me and probably destroyed my marriage. The disease didn't, but my inability to live with it in an healthy way. I do take an anit-depressant, something that took a lot of self reflection to come to terms with. Don't spend time worrying about convincing his family what life is like with Crohn's, they will never get it. The best thing I cna think of is focusing on you, getting better, and how you and your partner can learn to develop a true partnership in living life together.
Posted 7/5/2005 8:01 PM (GMT 0)
Hey Mesh,

Randy has some good advice for you. If you are not treating your depression, you should definately go for it. Chronic illness is very hard on us and most of us with chronic illness do rely on an anti-d. In the lupus forum some of us post our meds, just so others will know that we do trust these meds to help us along.

One thing your partner might be seeing is "energy to do the things you love". I know that for me, I can come up with an extra ounce of energy to tend to needs that matter to me. If I overdo in those areas, my hubby might become resentful and think I am using my illness as an 'excuse' to get out of things I don't enjoy. We really have to strike a good balance in how we use our sparse enegy with chronic illness. Also make sure that his needs are met. Trying to say this politely, but men do have needs and there is more than one way to handle that. Men don't really love us for how we look or act, but for "how they feel about themselves when they are with us". Does he feel good about himself when he is with you? You can give him positive feedback whenever he is leaning in the right direction. Beyond the normal respect, love and care that you put in as a partner, you are not responsible for his happiness. And, if you are feeling guilty . . . it's NOT attractive.

You might want to search the internet for a conicise, direct, background for chrohns. Something that reflects your journey. Print it out and share it with him. It really IS hard for someone else to understand how our chronic illness affects us. I think Randy gave you good advice about the fact that most people will never 'get it' anyway. But your partner should understand the basics.

DO baby him when he isn't feeling well. Treat him how you would like to be treated. I bend over backwards when hubby isn't well. He puts up with so much of my being unable to do so many things.

It has taken a fair amount of time for us to be on the same page with my ability to do or not do certain things, but he trusts me now and I really appreciate that. He'll even comment if thinks I am overdoing. (That's a new thing.)

Just want to encourage you sis. Keep us posted!!

Blessings!
Posted 7/5/2005 11:50 PM (GMT 0)

AlwaysRosie said...
Hey Mesh,

Men don't really love us for how we look or act, but for "how they feel about themselves when they are with us". Does he feel good about himself when he is with you? You can give him positive feedback whenever he is leaning in the right direction. Beyond the normal respect, love and care that you put in as a partner, you are not responsible for his happiness. And, if you are feeling guilty . . . it's NOT attractive.OK... now im really confused.  What do you mean feeling guilty is not attractive? ya lost me on that one.



DO baby him when he isn't feeling well. Treat him how you would like to be treated. I bend over backwards when hubby isn't well. He puts up with so much of my being unable to do so many things.

 If he were ever to treat me, as i have treated him,.. i wouldnt be here complaining.

It has taken a fair amount of time for us to be on the same page with my ability to do or not do certain things, but he trusts me now and I really appreciate that. He'll even comment if thinks I am overdoing. (That's a new thing.)

What do u mean that he trusts you now?

Posted 7/6/2005 2:41 AM (GMT 0)
1) Ooops! Sorry Michele . . . don't know where 'guilty' came from . . . I guess it was left over from a post I was reading earlier . . . I was catching up with all the posts from the holiday. Big slip sis . . . sorry.


2) If you don't show him tenderness, how will he have anything to immitate. Go for it. You have nothing to lose. I am assuming with this one that you love him and you want to express that.

3) Trust . . . . about how I am feeling. He knows I'm not being lazy, but that I really need to rest when I'm resting.
Posted 7/6/2005 2:50 AM (GMT 0)

AlwaysRosie said...
1) Ooops! Sorry Michele . . . don't know where 'guilty' came from . . . I guess it was left over from a post I was reading earlier . . . I was catching up with all the posts from the holiday. Big slip sis . . . sorry.

you are forgiven.  I could have really misinterpuated that ! lol
2) If you don't show him tenderness, how will he have anything to immitate. Go for it. You have nothing to lose. I am assuming with this one that you love him and you want to express that. I am like that ! Way too much,.. i think  thats why it hurts that i dont get it back.  I always been the giving, loving one.  But am getting fed up.  Guess its just time where i need the attention.  Maybe i am regressing. I feel sooo alone lately, its really awful ! sad sad 3) Trust . . . . about how I am feeling. He knows I'm not being lazy, but that I really need to rest when I'm resting. Honey, i am lazy ! lol.  Just ask him ! laying down or napping means that ! nono

But its okay that after supper,.. he lays on the couch,.. and snores the family out of the living room.  redface

Oh.. but 'HE WORKS'  I work too ! I have to deal with the elderly.  He drives all day. waaa ! oops... sorry. Got carried away ! haha

Posted 7/6/2005 3:37 PM (GMT 0)

Mesh...I'm sorry, but he sounds so selfish.  This man should be responsible for either making sure his family understands and is accepting of you or letting them know that their attitude towards you is completely unacceptable.  What you've described is a one sided relationship and you don't deserve this.  You deserve someone who will love you unconditionally, support you always and NEVER make you feel guilty because you're sick.

You need to do what's best for you and create an environment that is peaceful and loving....even it if means you have to be alone. Being/feeling nurtured is what a relationship is all about...you should never consider it as "regressing".  If you have to feel guilty every time you ask for a hug, take a nap or simply deal with your illness....IMO, it's time for you to really reflect on why is this man in your life.  Again, you deserve waaay more!

Good luck! :-)

Posted 7/6/2005 11:17 PM (GMT 0)
Hey Mesh,

Sorry . . . it sounds like you and him need a real heart to heart talk. But, if you think he won't listen . . . think about writing your feelings and give him a letter. That way you have plenty of time to conisder your words and what you needs to say and you won't be interupted. It does sound like its time to ask for more from him.

Ucforme is right, you do deserve more.

Blessings!
Posted 7/7/2005 4:14 PM (GMT 0)

Hey Mesh....I agree with UCForme! I am new to this room. I have Ulcerative Colitis, Epilepsy, Migraines, Infertility and Severe Depression. Let me tell you something girlfriend, if it were not for my husband's love and understanding...I would not be here to try to help you.Please do not take this offensivly, but can you picture your partner w/someone with all my illnesses!!!! I cannot even work!My husband is a physician and I am such a baby that I cant be away from my sister (I am 43 by the way), so we have a home where my husband practices medicine and he bot me a home on the other side of the  state to be near my sister,neice and bro-in-law.My husband works in the ER and is never available for me, so he has set me up to try to make me happy and have a life..WRONG! Honey, you have a disease that is not your fault, Do not ever let him, his family or anyone else for that matter judge you.Can they walk in your shoes???I doubt it. It sounds to me like their choice is to live in denial. I am with you. I HAVE TO TALK THINGS OUT!Honey, YOU KNOW WHAT TO DO, and I think you know it. TALK TO HIM!!!You have nothing to lose.When someone loves you, it should be unconditional, not depending on how you feel that day! Crohn's sucks the life out of you, that is why you need his support. Trust me my brother has lived with it for years. Don't be afraid. As Lance Armstrong would say "JUST DO IT". Take care and we are here for you and your feelings.

Peace and sunshine,

Patti yeah

Posted 7/7/2005 4:24 PM (GMT 0)
I know. I know. You guys are making me cry.(But in a good way).. (I need to let some out). It's so true. Never have I had anyone who understood, or cared enough to even try. Maybe he used to, but I think it just gets on his nerves now. I just get soooo sick of having to keep all these emotions inside, because IIIII have to deal with it. NO_ONE ELSE has to.
Thanks for understanding. Sometimes I think he's right, and I just dont deal well with all of this. So THANK YOU FOR BEING HERE FOR ME, AND FOR UNDERSTANDING !!!
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