Husband just doesn't understand

[Stuffette]

husband just doesn't understand

So how do I get my husband and some of the other people in my life to understand that I am just not feeling well and I need to rest?

I have been with my husband for 10 years and he is used to my "issues" but I was only recently diagnosed with CD. I recently had a baby, work a full time job in a high management position, as well as play in a band. I try to take at least one day a week to sit home and do nothing when I feel like things could get out of hand. I feel lucky that I can still do as much as I do with CD. I see what other people go through and I realize that I have it made. He gives me a hard time when I am "lazy" and doesn't ever sympathize. I guess it's because on the outside I appear healthy and it does look like I am being lazy. I am always scared of getting sick again and I try to be careful.

Do other people who are in remission go through this as well?

 

[ruthymg]

Wow, you're not kidding, how do you manage to do so much? A healthy person would need time out after a week like that never mind one that has crohns. Can't beleive your hubby calls you lazy, show him this site or better still get some leaflets about crohns for him to read. Crohns is unfortunately one of those diseases that has mostly invisible to the naked eye symptoms. I had this problem with my work employees thinking I was faking and all that cos I looked ok. We all look ok with makeup on!!!!
Have you tried sitting your hubby down and telling him how he's making you feel?
Its worth a try, he obviously doesn't understand the implications of crohns fully.

Its so important to get your rest and he needs to understand this.

Hope you continue to stay in remission and well done!!

Ruth

 

[Maggie-Muffin]

Hello, you are amazing to be able to do what you do.People have a hard time understanding Crohn's .Maybe your doctor could help explain it to him, take him along with you to your next visit
~~~HUGS~~
anda:

 

[SoccerMom]

I know exactly what you mean! In the beginning my husband was a huge jerk! I had 3 girls & was pregnant with my 4th when I was diagnosed & working full time. He thought being pregnant was not the same as being lazy, which he thought I was being. When we were told to get our affairs in order because neither the baby or I may live, he changed his tune a bit. It has taken him a long time to understand my crohn`s , some stuff he still doesn`t but he tries now. I also work full time & my older girls play soccer & basketball year round with club teams, so we are running all the time. Now though he doesn`t expect me to do it all, he & my girls (from college to daycare) chip in & help out,cooking , cleaning, driving the sister`s to practice ,while I lay on the couch & rest. I feel very guilty sometimes that I don`t do more. I think when he was being mean it was because he was afraid of what could happen & if he pretended everything was fine , then it was. Just remember to take care of yourself , your health should be a priority.

 

[Kev]

I'd be the last person on earth to counsel anyone on relationships. However, if you have a partner who tosses around a 4 letter word like 'lazy' regarding Crohn's, then they need an introduction to it.. Maybe spice their meal with GoLytely (ok, kidding). CD enters your life, and the rules change.. and you don't get to make the rules, but have to live by them. I do as much as I can whenever I can, and when CD says no, I do as little as possible. It irks the life out of me that I'm not the over industrious guy I was before the _ _ it hit the fan. There are some 'acquaintances' of mine who know of my illness. A few have made a habit of telling me how great I look now (as opposed to last year - let's not even go there). However, I'd begun to notice that there was sort of a subliminal message there.. like, you're looking so well you must be better.. cured.. in remission, whatever. The last time it happened, I used a very crude analogy.. Told them in a nutshell that I sort of equate my disease to a person with leprosy, except my body is slowly eating itself up from the inside out, so it really is hard to see my disease progress. I guess I went that route because I've been going downhill for the past two months, but on the outside I look great. (except to the doc's at the GI clinic.. but they have a practiced eye for spotting it). OK, so I'm a bit defensive about what changes CD have meant in my life/lifestyle, and the leprosy thingy is a bit over the top (albeit not too much so, if you get me), BUT I don't beat people over the head with my disease, I never bring it up first, it isn't my 1st choice of conversation topics, and if asked how I'm doing, I keep it lite. Like, fighting the good fight, pretty good for an ol fellow, that sort of thing. I think that when you're diagnosed with CD (or any other chronic illness) your life needs to change focus so that you don't have to worry about justifying it or any other of the crap it entails. I dunno if I'm explaining myself adequately. In other words, I've got my disease, and I'm dealing with it the best I can. If anyone else has a problem dealing with my illness, they need to deal with it themselves. I can't deal with it for them. I CAN offer to help, but the disease puts itself first, so sometimes my hands are full. OK?

 

[Matthew]

Hi folks!

This is my first post here. I wish I had known about this place years ago as there seem to be a lot of really nice folks here along with some good info. However despite fighting this illness for a long time the official diagnosis of crohns was only made recently.

This whole issue of how we look related to how we feel gets me too. I have a pretty fast paced & high stress job in a hospital and while nobody is out and out mean about it and most are really kind to my face, I sometimes get the feeling some of them think I am abusing my FMLA leave time. I understand this somewhat because we are all stressed with the workload and I know it is hard on them when I am not there.

I often feel that they think I "bring this on myself", out of bad dietary habits and such, when they monitor my diet at lunch. But heck they don't know what I should eat, apparently no one does. Over time I have discovered some things not to eat like whole milk products, or too much of high fiber fruits, vegetables and cereals. Though it is interesting that the instructions from the professionals are for a high fiber diet. It seems that the things that are the easiest on me are all things I am officially supposed to avoid, like peanut butter or fatty cuts of red meat for example. Of course I am on lipids drug therapy as well so that I guess is another complication on the red meat issue.

The thing is I appear in pretty good shape, my weight is pretty close to normal, maybe 20lbs high, on good days my energy is very high and I can get a lot done very effectively. Plus I have always looked young for my age, truly a curse as a teen, now at age 50, most people take me to be in my early to mid 30's. Of course as most of you know I feel like my gut is in the 80's if not simply dead more often than not. Oh well at least I have found a good place to whine, and maybe to get help and just as important to give it back. Again it is nice to have found you all, I am sure I will make some good friends here.

Matthew

 

[Matthew]

Hi folks!

Sorry the I thought the post did not go through so I apparently duplicated it.

Matthew

 

[KCMike]

Hey Matthew I can relate. I'm 45 but look a lot younger. I know on the inside I'm probably in my 60's. I've already had one resection in october of last year. I don't have any major symptoms right now but I know someday I'll be getting my a** kicked again by crohns. As far as I'm concerned there are no rules when it pertains to diet. In the past during a flare I.m on a liquid diet. As soon as I'm back to 'normal' it's large chunks of red meat, chicken, rice, pasta..etc. I just ride the wave. I live large when I'm normal and lay low when I'm in major pain. It works for me.

 

[rattle]

I know exactly where you are coming from.On the outside i look healthy i am 6ft and 14.10 stone (due to meds) i hardly eat anything as most foods make me feel ill.
I have had to give up work because of Crohns and people just think i am being lazy.
7 years ago i weighed 9 stone and people used to ask me how are you getting on, oh you do look unwell.I am more unwell now than i was then.I dont want there sympathy but it would be nice for them to understand.
My wife is very good most of the time but she does not understand the effort involved to do things when you are feeling really unwell.
Our bodies are fighting a constant battle and its takes energy to do that and with only a small amount of calories,minerals and vitamins being obsorbed its a difficult task.I would sit your husband down and ask him to read information on the disease.

 

[Evagation]

Perhaps I was lucky because I'd already been diagnosed long before my husband and I got married. He knew going into the ceremony about my CD.

Since then, though, I've taken him to CD support group meetings, I try to volunteer with one of the two California CCFA chapters as much as I can, and we just got back from a full-day IBD conference held by the Greater L.A. CCFA chapter.

Even though he still, of course, doesn't completely understands when I've been sick for weeks and look visibly okay (not healthy, but not hospital-bound, either) that it's the CD. It's an on-going struggle, I think, to keep Devin (my husband) aware of how bad the disease can get. It helps that he also attends important doctor appointments with me. Which felt SO weird at first because my Mom stopped accompanying me into my GI exams when I was only eleven, or so. So, having my husband there, while my GI doc fully examined me, and you know that not an outsider could easily find the questions gross, not to mention the actual physical exam, helped him understand the extent of my illness.

I figure that the more I involve him in this part of my life--driving me to endoscopies. going with me to the major appointments, actively being there when I'm dealing with my CD on a practical level--the more understanding he will have. It took a good few years after we met (and, pretty much, only after we finally got married) that I felt comfortable taking him to my GI doc appointments. But I'm so glad that I did. Instead of being shocked, and a bit grossed out (I was expecting the worst possible reaction) he simply gained more respect for me, and really tried to understand my CD after that.

I even gave him all of the books I have about Crohn's, with marked chapters and emphasized parts (he did actually read them, but only because I didn't make him read the entire book, I just picked the most important things that I wanted him to be aware of) and that also helped.

And you're not lazy, at all. And I really, really hope that your husband will acknowledge that soon. I agree with everyone here that, when your body is telling you that it needs to just REST, it's telling you that for a good reason. It really needs to rest.

Good luck with you, and your husband. Perhaps if you haven't already tried it--you could download some pamphlets from the Crohn's & Colitis Foundation of America (http://www.ccfa.org) about what a spouse/partner needs to know about their CD-afflicted loved one. Once I showed my husband the pamphlets, and some of the books I had, he truly began to realize that this is a real disease because there foundations dedicated to it, and even books written about it.

Good luck, again. And if you need to vent, we are always here to listen, and give support.

Katie.

 

[Matthew]

Hi all
Hey KCMike your paternal grandmothers maiden name wasn't Yates was it? I have a cousin in Kansas by the name of Mike. Actually my original diagnosis was with Diverticular disease about 2002. In a recent ER and 2 day observation stay it seems they have decided I have Crohns as well. Of course as I know now the high fiber diet for diverticulitis has been nailing me for several years as I tried on and off to keep to it. I do think Metamucill helps and I take capl;ets in varying amounts depending on what I eat. I still seem to have less of a problem with fatty cuts like ribeye than anything but maybe banannas. Of course I guess that is why I am on Lipitor now after past years of very good to normal cholesterol tests. Of course when I feel an episode comming on I go back to clear liquids then soda crackers and ginger ale/7up, then jello and such for a few days. I have began to go on mini fasts on selected weekdays (Wednesdays and Fridays). This is because of the caferteria menu at work sucks on those days anyway and my co-workers have this annoying habit of monitoring and commenting on my diet. I think this has help me somewhat.

I have been hearing about resections since my scope in 2002 but I have decided to try and put such off for as long as possible. Now that I know what the symptoms are I think I have been living with this to some degree most of my life. It was only about 2002 that the really serious pain started. When the heating pads and ibuprofen stopped working for my horrible lower back pain, yea I know now the ibuprofen was dangerous, that I complained to my GP. Heck I considered periodic constipation, cramps, gas, scoots and 6 or more trip to the toilet normal as I lived with such nearly my whole life.

Not that I would ever suggest such but if most people had even a minor encounter with food poisoning they would probably have a quite bit more compassion for us. A glass of GoLytely spiked lemonade (<---most misnamed product ever) taken behind a hefty serving of macaroni and cheese would also provide insight. Shut up Matthew, please don't anyone do this type of stuff to anyone else, it's just well you know how dark humor helps sometimes.

Well Stuffette I guess this post did not really connect directly with your original topic, but as I noted in my previous post, yes it is an issue for me too. Wish ya the best, I sure am glad my kids were all grown up before this stuff hit me so dang hard.

Later All
Matthew