Can anyone relate to keepin up a normal facade out in the world?
#364120 - 04/02/11 11:04 AM
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taroh73
Reged: 12/28/04
Posts: 184
Loc: chicago, il
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I have had severe and in many ways debilitating IBS for over a decade. It has robbed what would have been my years of building a career, dating, having kids. Yet, I go out there and put on a brave face everyday, and other than lots of "there must be something wrong with you or you wouldnt'.(fill in the blank- be single, work here, etc..) I put on to people that I am totally normal because I am too embarrassed to admit I have IBS, am too private to have the I don't care what others think attitude. But the flipside of that is that when you try to explain to someone how devastating and horrifying the symptoms and life impact are, they think it mustn't be that bad becasue I am so "normal".
Does anyone get what I am saying. I am exhausted by the energy it takes to go out into life and pretend for whatever the number of hours is- that I am normal. And then I come home and collapse by myself, having kept it together all day. Anyone get it? And please, no offense, but I'm not looking for the cheerleaders to tell me I shouldn't care what anyone thinks. I do, period.
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Are you following the EFI diet with FODMAP restrictions?
I basically have only about 25 food items on the list what I eat but lead a normal life otherwise. My main problem has been not being able to eat out/ dinner parties are no fun for me, but apart from that a very restrictive diet withno alcohol or caffeine, no dairy, little IF, careful calculating of food's fat content and limiting it to the minimum alongside not eating FODMAP unfriendly foods makes me function like a normal individual. Have you tried eating like this? Has it not helped?
But I do sympathise, I very much care about others' opinions and have often felt not just embarrassed or frustrated but even ashamed to have IBS.
--------------------
Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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Thanks for your reply... I don't really want to get into the whole diet issue because it's such an endless riddle with no answer. I just really wanted to identify with someone on a different level. No one would ever guess anything is wrong with me when I walk out the door and it mininmizes how bad it is becuase then when i confess or try to explain, people really think it's not bad becuase I look and act SO normal. THat's because I don't spend anymore time around anyone than I have to and I am always hiding out at home.
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Oh my--I hear you more than you know. I read your post yesterday and have been waiting until I had a good few minutes to sit down and figure out how to respond. I am in your same boat-- I put on such a show for everyone all the time. When I do breakdown and say I'm not feeling well, no one gets how serious of a problem this actually is. It isn't just a 20 minute belly ache.
I can honestly say though, that I am a born fighter. Although I've had some really bad times, I refuse to let it win. I have gotten to the point of giving up many many many times. Why fight? why bother? I'm sick. Always will be. But just when I almost hit rock bottom, I get a good day...or even at times, just a good few hours. When I feel good, I am out and about doing anything and everything!
Now, I really don't want to be one of those 'hang in there, it gets better " people. I hate when people do that to me. I'm just trying to say that I completely understand.
No one really gets how big of an issue my belly is for me.
I've been lucky to have found a great husband who actually met me a week before I landed in the hospital the first time. We joke that he "never got a chance to get out" since I was so sick...lol. He's supportive, but let me tell you, the guilt about not being able to do certain things, eat certain things, etc... is tough for me. I am SO dissapointed when we have plans we have to break b/c I'm sick. But I fought to have a normal life with him and when I'm well, we certainly do just that.
As for career, I agree. I work part time at a VERY flexible job, so that's ablessing. I'm 27 and sometimes wonder what I could be making if I just could hold down a 9-5 daily job. I hate feeling like I'm not pulling my weight. I recently started my own music studio where I teach lessons and childrens music classes from my home. That gave me a great sense of security, and I've been feeling confident enough to move it to an outside studio just this past month.
I'm so sorry we both have to deal with this. It does suck, and I am SO sick of putting on my "oh, I'm great thanks" face when my stomach is in knots or I've spent the entire night in the bathroom.
Hang in there-- sorry, no real advice, just wanted to tell you I get it and you aren't alone. 
--------------------
IBS-A
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Thanks so much for that! I so didn't want advice (you know how that is) just to relate to someone else. It helps. Thank you thank you thank you.
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T,
This is my first post out here, but your question struck a chord with me personally.
Essentially, you just summed up my life. I won't give you any advice except to say that you aren't alone. I stay at home most of the time, can't explain to others why I can't meet up with them, can't travel....yeah, that was beautiful a couple years ago--driving to Chicago from Michigan on business. Our VP wanted to drive us down there. Sweat starts pouring down my face...and sure enough, I have to ask him to stop about 10 minutes into the trip.
It's only gotten worse and I now avoid about all travel unless I can drive. I can't explain it to anyone because outside of those on boards like this...not many would ever understand. Even my mother caught wind of some of my issues...told me it was all in my head.
It's like this viscious cycle. Your anxiety contributes to your IBS...you get more anxiety thinking about it, which only compounds it... I already battle depression and this just makes it worse. Far worse.
IBS rules my freaking life. I guess I'm one of the 20% of guys who got this "gift."
So yeah, I get it. I apologize if I hijacked your thread..I just think when we give our stories, it can help. Maybe. Heather's book helped me alot--the story about the friend who was traveling with the friend with IBS who held her hand and told her not to worry--it was remarkable and to have a friend like that must be amazing. If you were here, I'd cry with you because only we(those who deal with this) really understand.
Try to hang in there. You'll be in my thoughts.
Kevin
Edited by KevinMB (04/04/11 11:00 AM)
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Thanks for replying Kevin.. nice to hear from you. And I'll keep you in my thoughts as well. It is nice sometimes to know you are not alone, even if it all still sucks!!!
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but have you tried the diet for a sustained period of time? Heather's rules are very (too) permissive for a lot of sufferers, perhaps you'd like to combine its essence, ie no alcohol/caffeine, no dairy, fat content of meals restricted to 20-25 per cent of calories per meal, IF very limited and only with SF AND AND AND AND the FODMAP approach simultaneously, for which pls see Syl's signature.
I am following this diet, Syl is too, his is in fact even more limited. it's true that you can't lead a normal life that you can't really go and feast at dinner parties and you practically can't eat out, but with a diet like that your symptoms too may wholly improve in the long term or at least be drastically reduced.
I felt exactly the same, said the same that for me what I eat matters little and it's haphazard, went through the same as you until I took this dieting seriously. Never looked back.
--------------------
Susie, born in 1985,
(pseudo-)D and bloating April 2007-December 2010, now stable
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Hi...just wanted to thank you for your original post( as crazy as that sounds...) because I am going through the same feelings right now. I am in a rough patch of pain and bloating and not sleeping because I keep freaking out that something more serious is happening to me. Sometimes it really helps to know that we are out "there" together and yes, it just plain sucks that we have to suffer with this. Today I ate lunch with my friends who all ordered this delicious( I know from my past) salad with fries and Russian dressing- I used to be that girl too. Most of them don't know about my problems because as I am sure we all feel, it is awkward to talk about it. So, we'll hang in there together....
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It's just not something anyone can understand until thier body is taken over by what I think are the most unexplainable and indescribable symptoms sometimes. Thanks for commenting! It is nice to know we are in it together.
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