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#1 Rachel--24

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Posted 21 August 2005 - 11:17 AM

When I first started experiencing symptoms I was in a relationship and we were planning to start a family. Things were going pretty good. There were some insecurities in the relationship and my sudden personality changes only made it worse. Because I was tired all the time and didn't feel like going out much it seemed that I had "lost interest" or was being unfaithful. Not true...this was the person I'd wanted to spend my life with. However I was too tired and too sick to do anything about it and grew even more tired of trying to defend myself. I also felt guilty for not being myself anymore. The relationship just deteriorated and eventually ended. I was hurt but felt it was for the best since I was sick anyway. Why bring somebody else down?
A couple months later somebody else came along who showed alot of interest in learning about my illness and wanting to get to know me. I was pretty much a mess...heartbroken and sick at the same time....just getting through the day was a struggle. This guy was there for me 100% and I couldn't understand why anyone would wanna deal with everything I was going through...but he stuck around. He just wanted a chance so after about 6 months I decided to give him that chance. He went to all my Dr. appts....getting to know the doctors...asking lots of questions. He was even reading books on his own. There was nothing he wouldn't do for me...and even though I had no answers as to why I was sick he was already talking about marriage. I started to feel guilty again..guilty because there were plenty of "healthy" girls who wanted to go out with him...guilty because I just wanted to sleep sooo much....guilty because I was too sick to know how I even really felt about him. Eventually it was too much for me so I ended it...we are still friends and he's still there for me. Normally I'm a very social person...I've never really spent much time to myself and was always in a relationship. For the past year I've distanced myself from everyone cuz I just hated that I wasnt myself and felt like I would bring everyone down cuz I couldn't "fake" that I wasnt feeling well. It was just easier to be by myself and not have to explain. Now that I'm feeling better I feel like there's this whole other emontional aspect to being sick for so long that maybe I haven't dealt with. I'm still not ready to *totally* get back into my life because for some reason I'm afraid that I'll get sick again and let people down. I'm especially afraid to get involved with someone again and not be all the way well. I feel like I can't do anything until I'm 100% better and knowing that I won't be sick again. Is this normal? Does anyone else ever feel guilty for not being themselves? After I've been gluten-free for awhile will things just get back to normal?
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#2 Jnkmnky

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Posted 21 August 2005 - 11:28 AM

Well, nothing and no one is perfect. Any relationship you get into isn't going to be 100% about you and your illness. If someone wants to be in love with you, why try and talk them out of it? Let a grown man decide if he wants to be in a relationship with you and don't get all tied up about it. If you're being honest and he's chosing to be with you, then who are you to talk him or yourself out of it? ;) There's more to you than your illnesses, I'm sure. :lol:
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#3 tarnalberry

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Posted 21 August 2005 - 11:45 AM

For the past year I've distanced myself from everyone cuz I just hated that I wasnt myself and felt like I would bring everyone down cuz I couldn't "fake" that I wasnt feeling well. It was just easier to be by myself and not have to explain. Now that I'm feeling better I feel like there's this whole other emontional aspect to being sick for so long that maybe I haven't dealt with. I'm still not ready to *totally* get back into my life because for some reason I'm afraid that I'll get sick again and let people down. I'm especially afraid to get involved with someone again and not be all the way well. I feel like I can't do anything until I'm 100% better and knowing that I won't be sick again. Is this normal? Does anyone else ever feel guilty for not being themselves? After I've been gluten-free for awhile will things just get back to normal?

<{POST_SNAPBACK}>


Isn't it up to the other person/people to decide whether or not you're bringing them down? Isn't it up to the potential boyfriend to determine if he wants to deal with the bad things because of all the good things he gets out of the relationship? It's always seemed to me that it's selfish (in a bad way ;-) ) to say "I feel bad that I can't do this so you shouldn't be with me," because it's not really your decision to make.

Before that sounds too harsh, please understand I've been there. I've mentioned elsewhere that what first got me looking into celiac disease was a condition called vulvar vestibulitis, which makes sex very painful. Without going into the details, let's say that sex once on a three week honeymoon, and *maybe* once every two or three months after that, because I couldn't (thing hot boiling on on places it really shouldn't be) didn't make me feel like I was "good enough" as a wife. It was a low, low point (it made it painful to sit, I didn't wear pants (of any kind) for two years, couldn't have sex, was constantly in pain over something that I couldn't really talk about, and it made me miserable in general, almost suicidal, but not quite), and the only thing that kept me from walking out of the marriage thinking that he "didn't deserve to be stuck with me" was just shutting down one winter and saying "I'm not doing anything until the spring, when I can see the specialist and think better".

Over time, however, I came to realize that it wasn't my decision whether or not I was "good enough" as a wife. "Good enough" is measured by the expectations of the consumer, I'm not my own wife, I'm my husband's wife - he makes that decision about me (and I about him). He was perfectly willing to take all the bad that came with me so he could have all the good that came with me. Mind you, I didn't see "all the good that came with me"; I didn't understand how he could find all that very much there. And while my self-esteem is a might bit higher now, I also realize that it doesn't matter if I don't understand, as long as what he's saying is true.

Thing is, like celiac problems and other mysterious medical issues, the vulvar vestibulitis is an ongoing condition - it gets better and worse, off and on, throughout my life. But so is all of your health. You're going to get the flu sometime in the future. You're going to get a bad bump, scrape, or break. You're going to go through emotionally difficult things. You'll never be "100% better, permanently", because things are so fluid and change so often. If you try to wait for it, your whole life will end up passing you by. (Now there's two years worth of therapy, thinking, and practicing of insight for ya! I wish I was one of those who really *understood* it to begin with! And I'm still working on the practicing bit; it is NOT first nature just yet!)

And the whole time, it's not that you aren't yourself - you're just displaying a part of you that isn't dominantly displayed. You're still you. You're still the only person you can be. You can't be anyone other than who you are. But maybe that's not the person you want to be. A big question for me on that front has been dealing with "Is the person I want to be realistic, and is it really what I want?" The answer to those questions is suprisingly complex, for me, anyway. Instead, I've taken my yoga instructors words to heart, "the journey is the joy", and life's a journey. I'll be who I am at each moment - even if it's sad, angry, bitchy, silly, crazy, happy, bored, awkward (that's my big bugaboo at the moment, social awkwardness) - and realize that I can only get to where I'm trying to go, by going through where I am.

Whooo... too philosophical for a Sunday morning! ;-)

Anyway, ((hugs)). We're here to support you, as are your other friends, I'd wager. You'll make it through whatever sticking point (physical, psychological, emotional) that's weighing you down most right now, and you'll be all the wiser and happier for it when you do!
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 Rachel--24

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Posted 21 August 2005 - 12:30 PM

Isn't it up to the other person/people to decide whether or not you're bringing them down?  Isn't it up to the potential boyfriend to determine if he wants to deal with the bad things because of all the good things he gets out of the relationship?  It's always seemed to me that it's selfish (in a bad way ;-) ) to say "I feel bad that I can't do this so you shouldn't be with me," because it's not really your decision to make. 

<{POST_SNAPBACK}>


This point was made time and again by this particular guy...and yes...I do realize it is HIS choice to make. However, since I was undiagnosed I often felt that I might NEVER get better and that this was something he was not realizing because he always felt that I WOULD get better and we would live happily ever after. I didn't want to disappoint. Also in my previous relationship guilt was often laid on me for this person feeling they *had* to stay home with me instead of doing other things. I don't ever want to feel that the person I'm with is *obligated* to be with me...I would rather they go out and enjoy themselves. I think I still have wounds from that and fear it will happen again...unless of course I'm healthy.
As far as *waiting* to get healthy...this is something thats been on my mind alot. Like you said...life will just pass me by....so I guess I'm getting to the point where maybe now that I have a diagnosis its probably time to stop focusing on illness and start enjoying other things and the people who care about me. :)
Thanks for being so insightful on a Sunday morning ;)
Nooo...it wasn't too harsh...it was just what I needed. :D
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#5 tarnalberry

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Posted 21 August 2005 - 12:55 PM

This point was made time and again by this particular guy...and yes...I do realize it is HIS choice to make. However, since I was undiagnosed I often felt that I might NEVER get better and that this was something he was not realizing because he always felt that I WOULD get better and we would live happily ever after. I didn't want to disappoint. Also in my previous relationship guilt was often laid on me for this person feeling they *had* to stay home with me instead of doing other things. I don't ever want to feel that the person I'm with is *obligated* to be with me...I would rather they go out and enjoy themselves. I think I still have wounds from that and fear it will happen again...unless of course I'm healthy.

<{POST_SNAPBACK}>


Hehe... I had a good response, and then another idea when I started typing:

First, if the risk of the pain of losing the person because of your health is too great that you decide YOU can deal with that risk, that's one thing. While the decision amounts to much the same, I find it important - for myself - to clarify WHY that's the case, and in that case it would be my OWN fears, and would have nothing to do with the other person.

Second... "I think I still have wounds from that and fear it will happen again...unless of course I'm healthy." I laughed when I first read this. Being healthy won't stop it. As long as you have different passtimes, pleasures, dreams, and goals as your partner, you and your partner will compromise on things you/he "wants". But compromise is all a part of it. It's *hard*. Again, I say this from dealing with the problem - realizing that my husband and I have only grown along different (but not necessarily divergent) paths since we met and since we got married. It makes it tough! I want to go out and socialize; he wants to stay in and not socialize. I want to go be adventurous and try something new (like surfing!); he's kinda afraid of it. I also thought that this sort of thing wouldn't be a big problem when I was "healthier". I was wrong! (In my case. I'm sure there are plenty of couples who are a closer match for daily living that don't experience it the same.)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#6 Rachel--24

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Posted 21 August 2005 - 01:12 PM

Hehe... I had a good response, and then another idea when I started typing:

First, if the risk of the pain of losing the person because of your health is too great that you decide YOU can deal with that risk, that's one thing.  While the decision amounts to much the same, I find it important - for myself - to clarify WHY that's the case, and in that case it would be my OWN fears, and would have nothing to do with the other person.

Second... "I think I still have wounds from that and fear it will happen again...unless of course I'm healthy."  I laughed when I first read this.  Being healthy won't stop it.  As long as you have different passtimes, pleasures, dreams, and goals as your partner, you and your partner will compromise on things you/he "wants".

<{POST_SNAPBACK}>


Yeah... I suppose it does sound a little unrealistic now that I'm rereading it :P
I guess because in the relationship that I lost we shared alot of the same interests..dreams..pleasures...we just seemed to always be on the same page. It was mainly the illness and the drastic ways in which it changed me that tore us apart. I really don't want to go through anything like that again...soooo in that case...you're right...it would be my OWN fears. :unsure: I don't like to feel I'm not in control of a situation and gluten really took that away from me...I lost everything I cared about because I could do NOTHING to prevent it.
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#7 ianm

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Posted 21 August 2005 - 06:07 PM

It is better to end it now than after 14 years of marriage and one child later. My wife and I divorced because she couldn't accept that I got healthy. It wasn't the illness that drove us apart. She liked me being sick because it made her feel superior. This new guy sounds like he might be worth taking another look at. Just take it slow. This isn't the time to jump into a serious realtionship and start worrying about marriage, kids, mortgages, etc. Get your health back on track first. There will be setbacks and bad days but those things happen no matter what.

I now have a wonderful girlfriend but even though we are both very compatible we are in no hurry to rush things. We are both battle scarred veterans of marriage, parenthood and dating. Being that we are both older and more experienced makes a difference too. I am 37 she is :o 48 :o :lol:. Older chicks are HOT. :) We both are just enjoying being in a relationship between two mature adults. The journey really is the joy. Take your time, if things are meant to be they will happen.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#8 Rachel--24

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Posted 21 August 2005 - 06:44 PM

It is better to end it now than after 14 years of marriage and one child later. My wife and I divorced because she couldn't accept that I got healthy. It wasn't the illness that drove us apart. She liked me being sick because it made her feel superior. This new guy sounds like he might be worth taking another look at. Just take it slow.

<{POST_SNAPBACK}>


It's interesting that you say your ex *liked* the fact that you were sick. I sorta wonder if this new guy isn't similar in that way. I notice a change in his attitude as I get more healthy. I think he liked "taking care" of me. He is constantly pointing out that HE was the one at my Dr. appts..or HE was the one who was there for me....stuff like that. I feel that he doesn't want me to forget that or become interested in anyone else. These are "RED FLAGS" for me...I've dealt with jealousy issues in ALL of my relationships and don't want to go there again. I feel his comments make all he's done for me somehow less genuine. There is a saying I read once...it goes something like this. "Give without *remembering* and take without *forgetting*. I'm sure I messed that up but anyways...you get the point ;)
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#9 ianm

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Posted 21 August 2005 - 07:22 PM

You bring up a good point. There are people who like being the "hero" and rushing in to save someone. Once their "patient" is back on their feet they are off to find the next person in need of rescue or they will find a way to bring the person down again. If he is making a big deal about how he was always there for you then I would send this guy packing. He is not doing this out of the goodness of his heart but to make himself feel good. My ex liked taking care of me when we first met and then over time she liked degrading me. When my health improved to the point where I could actually do the things she wanted me to do she just couldn't accpet that. Women can be just as abusive as men, they just tend to be more subtle about it.

I would focus on getting your life and health together first. When you start focusing on improving yourself the right people will start coming into your life. I was not looking for a relationship at all when my girlfriend came along. I put all of my focus on my health, my son, my career and finishing school and slowly but surely better people started coming into my life.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#10 Rachel--24

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Posted 21 August 2005 - 07:38 PM

I would focus on getting your life and health together first. When you start focusing on improving yourself the right people will start coming into your life. I was not looking for a relationship at all when my girlfriend came along. I put all of my focus on my health, my son, my career and finishing school and slowly but surely better people started coming into my life.

<{POST_SNAPBACK}>


This is exactly what my goal is...to be healthy, back on my feet and hopefully like you say...the right people will come into my life. I never go out "looking" for a relationship because I believe you will never find the *right* one that way...it just has to happen. I just don't want to be hurt anymore...by illness or by people.
You're right about people wanting to be the "hero"...I think alot of people are like that. This guy is one of them...although I can never see him being abusive in any way...maybe a little controlling though. His behavior and comments just make his actions less about kindness and more about "scoring points". Thats how I feel about it.
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#11 Mahee34

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Posted 21 August 2005 - 08:05 PM

I understand what you mean about feeling guilty....I have transformed the house to be gluten free and sometimes I think my boyfriend hates it. Focusing on your health is the most important thing, and although I know it's lonely, eventually you'll find a wonderful, caring person who you really are supposed to spend your life with. Things always happen for a reason, no matter how hard they are! Just keep your spirits up and everything will work out
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#12 Merika

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Posted 21 August 2005 - 08:35 PM

Someone on another thread recommended this book to me, and I LOVED it. You might like it too. It's called....

The Chronic Illness Experience: Embracing the Imperfect Life by Cheri Register

Merika
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#13 Rachel--24

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Posted 21 August 2005 - 09:10 PM

Things always happen for a reason, no matter how hard they are! Just keep your spirits up and everything will work out

<{POST_SNAPBACK}>


I think that is sooo true...I know this happened to me for a reason and good things are gonna come out of it. Maybe this will end up being the best thing that ever happened to me...you just never know :)

Thanks to everyone for sharing your experiences. It really does help to know I'm not "alone" in this. ;)
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#14 ianm

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Posted 22 August 2005 - 04:01 PM

although I can never see him being abusive in any way...maybe a little controlling

<{POST_SNAPBACK}>


The key word here is "control." People like this will jump into your life because they can take control and someone who is ill will usually let them do it. My wife became an ex because I got healthy and she lost control of my life.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#15 Rachel--24

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Posted 22 August 2005 - 05:23 PM

The key word here is "control." People like this will jump into your life because they can take control and someone who is ill will usually let them do it. My wife became an ex because I got healthy and she lost control of my life.

<{POST_SNAPBACK}>


Yeah...I see your point and its very true. However, not in my case...sick or not I don't let anyone control me EVER. I sort of tend to rebel when people start ordering me around....I've just been like that all my life. It causes problems for me at times :o I don't think any illness can change that part of me...but I am learning to voice my concerns in a more rational way rather than completely rebeling. :D
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