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Question: How to explain how we feel to our spouses/sig others?

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Posted 11/13/2007 1:09 AM (GMT 0)
Hi all,

I'm new to the forum, but I've enjoyed reading all the topics and posts from everyone.  This seems like a great group.  I had a question I wanted to throw out there-  and I didn't seem to find any previous content through the search on this (at least searching by "spouse").

My husband is very supportive of me and my CD, but it's hard for him to understand why I can't always "run out and do things", or why sometimes just walking around the store can make me tired or need to find the bathroom, or why we have to "hang out" after I eat before rushing off to somewhere else.  He always jokes that I always have bathrooms mapped out in stores, which as you all know, is something that we CD patients pretty much have to do (if you have D like I do anyway!).  The closest personal realization he had was when he had a bout of the stomach flu, and he looked at me, with such a pitiful face....and asked how I can live like this every day.  I just smiled and told him "It's amazing what you can get used to when you have to". 

I was curious if anyone (male or female) had found ways to better describe how we feel on the inside to their spouses. He's read information on it, and he lives with me and sees how tired and crampy I can get. He understands that our medicines typically cure one symptom, and bring on a few extra side effects.  He tries so hard to want to make me feel better, even though he knows he can't.  Somedays it makes me feel like a bad wife, looking at other couples and wishing I could be "normal" too.  I always hate getting told that I "look fine". I wish they could see my insides. I don't want him to think that I'm pushing him away, but sometimes, I just can't bring myself to be "romantic" when I have a flare. 

Thank you for your input.  I appreciate your comments!

~Sway

Posted 11/13/2007 1:35 AM (GMT 0)
Sway--''normal'' is what is normal for you----with crohns disease seems we are all alittle different
but still so much alike too..the best way i can tell my husband how crohns feels is like''the worse day
he has ever had with anxiety and panic at eating out and the most flu like systems he has ever had''
the best way to tell him is ''just be honest with how you are feelings that day''some days are good
some bad right??just hang in sounds like you have a understanding husband--the others -so--just
friends are friends the others ????take care god bless..
Posted 11/13/2007 2:32 AM (GMT 0)
I am *lucky* I guess that my husband has pretty bad IBS so he really does understand what we go through... but sometimes I wonder still because there are times he can tough through it when I can't and I have to wonder if mine is worse or if he just deals better. He does better with the associated anxiety then I do but I did go to therapy to get through that. It does suck though b/c there are times I feel great and he is too sick to go out and then he feels great and I am too sick. It is really frustrating because it would just be wonderful for us to both just feel wonderful. We are just thankful for the good times that we do get.
Posted 11/13/2007 7:56 AM (GMT 0)
Hi Sway. It sounds like you are lucky to have a supportive husband. I think it's natural for us to feel guilty sometimes, like we are letting down the people in our lives because we can't live the way "normal" people do. Sometimes it's so overwhelming to try to go through life when you just want to curl up and be sick. Unfortunately, for a lot of people there's just no way to understand what it's like to have a chronic illness. I always hear people saying "Oh I'm so miserable!" when they have a cold or complaining that they have to take a pill every day because they have a thyroid condition, and sometimes I just want to say "Try living like that all the time, try having to take 20 pills a day just to stay out of the hospital". I try to explain what I'm feeling by comparing it to something they can imagine- I've told people that the pain feels like there is a wheel of an SUV sitting right on my stomach and they seem to get that sometimes.

I've seen people in my life cope with it in different ways. My ex-boyfriend dealt with it by ignoring it and pretending I was fine, and when I would try to tell him what I was feeling he would give me a hug and then change the subject- one of the many reasons he's not around anymore :-)  One day he made a comment in a crowded parking lot when he took a spot far away from the building that "We're healthy people, we can walk" and I was just like, you really don't get it. Some people aknowledge that they don't understand and ask what they can do for me, and it made me realize that people feel helpless just sympathizing and they want to do something. I've found it helpful to tell people how they can help me- please pull over so I can use the bathroom, please get food from this place because I can eat it, etc. You husband might just feel helpless seeing you suffering, and letting him know what he can do, and that what he is doing already is great, might help him cope better. Good luck.

Posted 11/13/2007 11:16 AM (GMT 0)
Thanks to you all for replying.  I appreciate your input! 
Posted 11/13/2007 12:27 PM (GMT 0)
Hi Sway,

I think you just answered your question yourself, it's like when your husband had the stomach flu and was feeling awful!!!  You have to bear in mind that if you don't have an illness you cannot fully understand how it's like.  For example, can you fully understand how a diabetic person feels like in his daily life?

My husband is very understanding and supportive about my CD, but I choose not to discuss about it everyday, because I strongly believe that my life is not just my CD, it's only a small part of it.

Christina

Posted 11/13/2007 1:03 PM (GMT 0)
Sway, Sometimes it is harder on a loved one than it is on us. They want to help and feel helpless. Maybe this site can help. He could sure get a feel for what people go through here. For my part, I make the most of any day that I feel halfway well. My wife has cancer and I know the helpless feeling, so when we can do anything together, we do, even if thats only a short evening walk near our home, or preparing a meal together. Welcome to the site and hope we can help.
Posted 11/13/2007 2:04 PM (GMT 0)
Hi Sway. Welcome to HW! You can change this scenario to fit your situation. And to give a little back story--I love yoga. I love it so much that I became a certified teacher. Just 30 minutes of yoga energized me and I could conquor the world (or at least another 8 hours of work).

My husband was always supportive, but didn't understand why I was tired all the time. He kept telling me to change my meds or just get up and get around. I got him to come to a dr.s appt with me. He asked the dr. if it was the meds or the disease that made me tired all the time. The dr. looked at him and said it was the disease. But that still didn't stop my husband from just not understanding why his once energetic wife was now a lethargic slug. One day we went through the whole conversation again about how he thought I should just get up and get around. I was SO MAD! I finally looked at him and told him that after a yoga session, I wanted to take a nap. He finally got it. He knew what yoga did for me when I was healthy. And now he sees that the one thing that super-charged me now could do nothing for me.
Posted 11/13/2007 3:02 PM (GMT 0)
my husband is pretty good about being sympatheic but like everone else said he can never fully understand, and neither can anyone else unless you are experiencing it yourself.  I am really more hard one myself then he is on me.  I feel terrible that it can take me all day to do one load of laundry because i'm to tired or weak to want to do it.  it makes me feel like i'm lazy and even though i know i'm not, i tend to judge myself.  I can't understand someone else's pain with another diease and they can't understand mine.  bottom line places like this are great because you know that people truly get it.

Posted 11/13/2007 3:10 PM (GMT 0)
go to the web site

butyoudontlooksick.com

look up The Spoon Theory

I think everyone here has read it and would agree it is a good story for explaining the tired part of this. Just remove Lupus and put in just about any other cronic condition and it works.

Good luck to you, may you find some peace in the future.
Posted 11/13/2007 3:15 PM (GMT 0)
my husband has ibs as well. He is on medications for his. But still he can manage to go to the bathroom 1-2 a day when me going like 10-15 times a day. He has seen what i went threw in and out of the hospital about 5 times this year. The ups and downs of going on and off of predisone. WE went threw 2 years of not doing much just because i was afraid to leave the house and travel far. Any chance that i feel good a day we go and do something because there are more days i will feel bad than good im sure.

I always tell people it is like the worse possible case of the stomach flu you can imagine try living like that every day of your life. Also being by the bathroom and feeling like you are going to be sick.
Posted 11/13/2007 3:16 PM (GMT 0)

Sway_79 said...

 I don't want him to think that I'm pushing him away, but sometimes, I just can't bring myself to be "romantic" when I have a flare. 

 ~Sway

Sway, 

I don't think there's a way to tell any man that you "don't feel romantic" lol.   I don't know that there's any way to make him, any man, understand.  I think for most women, "romance" is out of the question if you're not feeling well, while most men will "do it" even if they have a limb hanging by a thread, lol. Seriously, this can really be an issue, it certainly was with my ex.  My current husband is much better about knowing when I'm really not into it, even though he's not always happy about it.

Im really joking about the "romance" thing just being male.  I had a male friend with CD that had the same issues with his wife that I had with my husband.  They just never understood this disease because you can "look" okay. 

Your husband sounds like he's trying, he's not perfect, but trying as much as anyone without this disease can.  You may have to "remind" him once in a while, and he may get irritated, but no one said living with this disease was going to be easy. 

At least you can come here and vent when you need to ;0)

Posted 11/13/2007 3:51 PM (GMT 0)
Wow I never read the spoon theory..that was powerful ..
Posted 11/13/2007 3:53 PM (GMT 0)

Judy,

I had to laugh when I read your post.  I appreciate that others see humor in the situation as I do occassionally.  My husband is learning every day something new about me and this disease, and how it affects our lives.  I'm glad to know others face the same problems.  I'm also happy to know that other people have supportive spouses as I do.  Granted, it's not easy for anyone to try to "figure out" out disease, especially us sometimes!  I agree w/ Sniper & the others that mentioned the "helpless" feelings, that is a big part of it for my hubby. Knowledge is power in this case.  He goes to my doctor appointments when he can, and sometimes asks more questions than I do.  LOL.  He is concerned about what the combination of medicines can do to me, how they will make me feel, etc.  I do call myself "lucky" that he is this supportive and just doesn't try to shove it under the carpet, or ignore it and pretend I'm "fine".

The website butyoudontlooksick.com  was great. Thank you, RedAdmin, for showing me the link.  I have passed it on to friends to check out as well.  It's always good to know that we aren't alone with this, and that there are so many other diseases out there that share similar fears & anxieties that we do.

Thanks again, all.  I'm looking forward to being a part of this group! :)

Posted 11/13/2007 4:39 PM (GMT 0)

Sway..just had to add my own 2cents here too.  I struggle with how much does my husband understand as well.  He reads articles, he asks questions about my meds and symptoms, but he never really understands.  We had a good talk one day about how we both have to accept that he will never really understand or empathize, he can sympathize though.  I really think it is necessary to come to that acceptance between both of you.

I also have found out that talking is the best thing.  Like others said, I try not to make my whole life about CD.  Sorry, but men are like puppies...you have to rub their nose in it when it is happening because they won't remember in a discussion later.  No sexism intended, I just think it is the way men are programmed (they are instant and visual it seems).  If I am feeling lousy, I tell my husband right out what the problem is (I am exhausted, I have bad D, I am scared about the future, I can't eat) then I explain the consequences for right now because of the problem (I can't get off the couch, I can't leave our house/bathroom, I can't think about serious things today, I don't want to decide on dinner).  Cause and effect in 1-3 sentences.

It seems to help when I make it cut and dried for him.  He'll ask another time if he wants to know details.  keep talking...it sounds like you have a good guy there!

Posted 11/13/2007 4:59 PM (GMT 0)
I too, have a supportive husband, but I get so sick of myself!!!! I never know how I'm going to be from one day to the next; I avoid making plans and besides work, I do very little. I feel very sorry for my husband...this can't be fun!
Posted 11/13/2007 5:03 PM (GMT 0)
Thank you, Habs. My husband agrees that he can't fully understand what I go through, but his little stomach flu episode really opened up his eyes! I try talking with him immediately, as you suggested when he wants to do something, and it works fairly well. He's learning not to take it personally any more as he did when we were first married. I try not to weigh him down with too many details. It's been amazing how much he actually asks me questions and wants detailed answers of how I feel. And he's learning when I need a little more time before I go somewhere, or when we go out to eat, that I need to wait around for a while before we leave. I think the hardest thing is trying to make them learn that we can go from 'fine' to 'not fine' pretty quickly.

I tell myself all the time that I am *not* defined by my CD. It is a part of me, but it doesn't make up who I am. It is just a part of me. Somedays it's easier than others. Sometimes I just feel like I want to wear the scarlet letters of "CD" on my chest!! LOL
Posted 11/13/2007 5:05 PM (GMT 0)
<hugs> to Gumby!! He loves you very much, Gumby. Try not to blame yourself. You didn't choose to have CD. I'm glad you are able to have that love and support when you need it most. It will get better for you as you go through the various treatments. Hopefully you will be able to get out more in the future!!
Posted 11/13/2007 7:17 PM (GMT 0)
The best thing I did was purchase a book about Crohns and then highlighted some areas that I would like him to read. That way he could look through the book and get the answers he needed, and see how real the disease is. He still doesn't always get it but its better than it was.
Posted 11/14/2007 1:50 AM (GMT 0)
Thanks Sway, for the hugs....and for the Spoon Theory. It was a tough day and I really needed both! It will be my 24th wedding anniversary on Monday. I was telling my hubby I'm afraid to go out to a fancy dinner like we usually do. He reminded me that I'm missing the point and said "We'll do whatever we feel like doing, but we'll be together...that's good enough!" I will remember to count my blessings. Love to all
Posted 11/15/2007 2:12 AM (GMT 0)
Gumby,

Early congrats on 24 years of marriage!! With the divorce rate so high, it is good to see a long marriage still going strong! Please enjoy it however you want and need to! Good to know that your hubby is so supportive and caring. Although, fancy restaurants have fancy bathrooms!! :-) Ooooh la la!

Hope you had a better day today!

~Sway
Posted 11/15/2007 4:31 AM (GMT 0)
My fiance and I are still learning how to cope with my illness, on top of the stress of moving, both of us starting grad school, and planning our wedding...it's nuts.  Chronic illness is so hard on couples and families.  I've always been somewhat "bathroom-oriented" since we met, and I think at first he didn't really think much of any of it because I would just joke about it, be sick for a couple days, and get better. 

Now that I'm totally icky, I can't always be my usually-good-humored self.  So I'll say, "I'm sorry, babe, but I have to have a moment," and I'll just vent about it.  It seemed to used to make him uncomfortable, because men want to be able to help and actually do something instead of just sit there helplessly...but now he realizes that the biggest help he can provide is just letting me vent.  And then I pack it up and move on until the next moment. 

It's just important for both of you to not get bogged down in the absolute terribleness of it.  Also, make sure you spoil him rotten when HE'S sick so he remembers to appreciate what it's like :) 

I like to read the book "The Tao of Pooh" - helps keep me sane in these moments.  It could be very easily translated into "The Tao of Poo." Maybe that will be my next project.

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