Irritable Bowel Syndrome Message Boards

It is HARD to live with someone who has a chronic condition. Even for those of us who are married -- yes, we said "in sickness and in health", but when most of us said it, we were perfectly healthy and were able to snarf down wedding cake. It's easy to say, then!

What's even harder is when the chronic condition is not visible AND, like with IBS, the symptoms are generally embarrassing enough that you don't want your spouse yakking about it. So, your poor spouse has to "cover" for you perpetually, and even if he tries his best, most people will end up thinking that you've decided to come down with a fashionable wasting disease so that you can loll around in a chaise lounge all day reading French novels and eating bonbons.

Guys, you aren't saints. I'm not a saint. So why do we expect our partners to be that way? Every time someone on here reports something insensitive that his/her significant other has said, a lot of us chime in castigating the poor guy, even though we don't know him. (And, sorry Linz, I'm not picking on you! It just happened to be the last post in the thread.) I know it's not easy to be us. But that doesn't mean it's easy to be them. In the vast majority of cases, IBS (or whatever we have) ends up drastically altering our lives. Let's use my wretched life as an example. We never did a ton of stuff together, but we would often on the spur of the moment decide to go out to eat at our favorite restaurant. Or, on Saturday we'd be kicking around home being bored and suddenly decide to go out to do some window-shopping and take in a movie.

Well, guess what? I can't do that stuff anymore. Haven't been able to do it for a long time. First off, no way can I do anything during the week. I'm too busy catching up on work I've missed because I'm sick. When I do stagger home, I'm exhausted. On the weekends, I'm often sick as well. How much fun is it to be with a woman who you often only interact with as a disembodied voice on the other side of the bathroom door?

And yes, marriage and life SHOULD be fun. We didn't get married because we felt the need for some somber responsibility. We got married because we love each other. And when you love someone, it isn't unreasonable to want to spend some enjoyable time together. With a chronic illness, this is tough. Yes, you can adapt somewhat -- there's lots of things you can do together at home. But, for instance, my husband has never been a homebody like I have. He likes to go out. Not necessarily to bars or restaurants, but he just likes to go places. We could drive up and down a road aimlessly and he'd be happy. My health has killed that one for us.

And yes, my husband has been wonderful about it. Overall. Yes, he'll occasionally mumble something about "never getting to do anything anymore". Maybe he'll complain, or sigh, or roll his eyes. That's fine. I don't expect him to be all chipper about it. I'M not all chipper about it. I'm not a saint. I whine. I feel sorry for myself. I complain. I accuse him of being uncaring.

We're human. We're all human. We all have our burdens. Ours is different, and ours is heavier. This doesn't mean that theirs weighs any less. We have no right to expect 100% understanding and compassion from anyone. If we have them, then we're fabulously lucky, but there are very few "right"s in this world.

My mother has a thyroid problem. It went undiagnosed for years and years and years. While I was growing up she was always being diagnosed with a different "invisible" ailment, like chronic fatigue syndrome, or fibro. My sisters and I were all healthy young kids. We couldn't understand. And because it seemed like the diagnosis was always changing and it was always something that, to us, seemed "weird", we never really did empathize. (Doesn't help that everyone would always say, "Oh, you mean one of those imaginary diseases?" when anyone mentioned it!

) So, much of my childhood and teen years, I felt mainly impatience more than anything else. Of course, now I do understand, and I do sympathize, and I can recognize how frustrating it was for her to chase down all these dead end diagnoses, but I don't think I'm a bad person because it was so hard for me to let go of trying to understand (because I never did) and just be there -- to help, and empathize, even if I didn't know what was going on.

And, I think when we expect our partners to automatically adjust -- to put up with everything, no matter what, with a smile -- we're being just as unfair to them as they may end up being to us. IT'S NOT EASY TO LIVE WITH SOMEONE WHO HAS A CHRONIC CONDITION. There is a lot THEY have to give up. There is a lot THEY have to deal with. We can't just say they have no right to their own troubles because ours are worse. This is just as tremendously unfeeling as what we're accusing them of.

I have a wonderful husband and I love him dearly. But he's not perfect. He has his less-than-compassionate moments. But so do I. So do we all. We need to learn to accept the times of non-acceptance.

At the same time, though -- yeah, someone who doesn't even try to understand? who keeps telling you it's all in your head? who says that the diet stuff is BS? yeah, that person has to go. (and what are you doing dating a gastroenterologist anyway??)

OK, sorry for the novel. Will go shuffle back off to the couch and think happy thoughts. Like two hours and forty-two minutes until my next pain pill.

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jen

"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC

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