Marriage Trouble And Celiac

[Merika]

Hi,

I'm not sure if this is the right spot to put this question, as I am the one with celiac, not dh, but since it involves him and family, I thought maybe to post it here.

Dh is angry a lot. Angry that I'm sick (still, 18 mos after diagnosis). Angry that I don't go places with him (cause I'm sick). Angry that he doesn't go places (because he won't go places by himself). Angry that he's not living the life he imagined he would be at age 33. Angry that I'm not currently contributing to the family income (too sick to do my previous physically-demanding work and take care of a 3 yr old). Angry that I'm not doing enough (he may be right). Etc etc.

It's actually gotten better in the last few months, but we keep circling back over the same issues. Overall, he can be very supportive. He is knowledgable about gluten. He eats 99% of the time gluten-free dinners with me, and does most of the cooking. Understands that gluten makes me feel like crap. He also complains about the food every day.

Mostly, he is impatient that I am not "normal" yet (ie not sick). He is tired of having a sick wife. He is tired of seeing me nauseaus, yet again, on the couch. He is tired of going to the grocery store because some days I'm not up to it. (I've fixed that - hired someone to do it, so we don't fight over it, but she doesn't pick the produce perfectly and that irks him. Actually, everyone we hire irks him.) He wants to pursue his own art interests (which I support) but wants to do so free of obligation of childcare and whatnot when I'm not up to it.

I am still sick. Some days are good, some bad. I am nauseaus still, but less so than gluten-free. i have oceans of anxiety. On 2 occasions I've felt I am truly losing my mind - like some sort of chemical imbalance in there. The damage I've done to my body from so many years undiagnosed is very real, and until diagnosis I had somewhat shoved them under the rug.

With diagnosis, and worsened health after the baby, I try to look at my illness straight on. I do not go to events when I know i feel like crap and going would make me miserable. I don't pretend not to have anxiety. Dh used to be a source of strength for me there, but since all our fights, he is now an added source of anxiety. I try to rest when i need it, and we finally have family help for my son.

My lowest point, mentally and physically, in the last 13 years was last December. I've gotten better a bit, added a few pounds, and am doing more. This week, after a flu and a change of meds for the flu, I am in the midst of a small (so far) recurrence of mental lows that I experienced last December. It's scary.

So I am thinking maybe we need to see a counselor for our marriage. I know it took me a long time to say that. I guess I am skeptical of them and if therapy works. I am afraid of going to someone who does not understand what it is like to have a long term illness. Are there people who specialize in this sort of thing?

I looked online for books. I was thinking something was maybe written for spouses of cancer sufferers or some other well-written about illness. Of course, our prognosis is considerably cheerier. And in many ways, I am a happy and lucky person.

But my marriage often feels like it's on the rocks, and I don't know what to do about it. I know illnesses can destroy relationships, but is there a manual (haha) somewhere that describes how to keep one going?

Dh has been super-patient, all considering. I know it's hard for him. We've talked a lot, and recently. Any suggestions, advice or btdt would be greatly appreciated.

Thanks,

Merika

[frenchiemama]

I know that you say in your last paragraph that he has been "super patient", but from everything you said before that he doesn't sound patient at all. He sounds selfish and self absorbed. I don't mean to be harsh, but his attitude towards you and your illness really burns my heinie.

He's tired of having a sick wife? TOUGH. Does he not remember that part in your vows about "in sickness and in health, in good times and in bad"? Well, this is the bad sick time.

I think that a counselor would do you two some good. He needs to realize that although this is not an ideal situation, it's not something that you are doing on purpose to make him unhappy and that you are supposed to be on the SAME TEAM. No offense intended, but he does not sound like he is behaving like a 33 year old.

[Carriefaith]

I'm sorry that you are not feeling better. I took about 1 year to feel better, and I am still not 100% so I understand. I can't really offer much marriage advice, since I've never been married, but I'll try and help with other things.

*Are you sure that you are 100% gluten-free. I thought I was and I wasn't. I re-evaluated my diet and found that I was getting contaminated. Once I eliminated the product, I got a lot better within a few months. My advice would be to double check every product that goes in or near your mouth. If there is any chance of contamination get rid of it. I would also make sure that shampoo, conditioner, make-up, suncreen, toothpaste, ect is gluten-free. I have been glutend by sunscreen.

*Maybe you have other food intolerances. For example, dairy products can make me very sick and this dairy intolerance thing I have came hand in hand with celiac disease for me. I believe that the most common allergies to people in general are corn, soy, dairy, eggs, nuts, and wheat.

*Are you sure there is nothing else wrong? Is your thyroid ok? have you had a follow up biopsy to see if your villi are healing?

I hope that you can work things out and feel better soon.

[Emme999]

Merika,

I am so sorry that you have to go through this! I am not married, nor have I ever been - but I am in a relationship now that began about 15 months ago. I live with him some of the time (about 3 or 4 days a week - or more, depending on what's going on in my life) and I imagine it's pretty much what a marriage would feel like! So, hopefully I will be of some value to you

I can relate to just about everything that you said. It has been very hard since I was diagnosed & went gluten-free (about 2 months ago). Before that, it was even worse - because I had a long string of illnesses & injuries that made no sense at all, and a few months before I found out about celiac disease I learned that I had these other food allergies (dairy, egg, sesame). I know that my boyfriend was not very supportive at all in the beginning. Now he is better (like your husband, he knows a lot about gluten & celiac disease) - but he often seems irritated with me. It's really bad when I don't want to go to events that I know will be centered around food. It's just too stressful and not worth it. He acts like I am "making a big deal out of nothing" and implies that I should just: go, not eat, and stop b%$@#ing about it.

My boyfriend eats some of the food I eat, but mostly sticks to his normal diet. When he does try something gluten-free, he typically whines about how nasty it is. Gotta love that support, uh? I guess they just don't understand that by telling us that what we have to eat doesn't taste good, they are undermining our attempts to find joy. I don't know. I still hear a lot of "It's just food!" but - it's not. It's our social lives, our health, and our future. I hope that you can find some solace by coming to this board. The people here keep me standing

What Carriefaith said about making sure that you don't have any gluten in your diet is so important. I've learned that (before anything else) gluten affects me emotionally. If something slips in, I find myself (almost immediately) feeling like I should break up with my boyfriend, drop out of school, and run away. I see a neuropsychologist every couple of weeks (for counseling from a brain injury I had a long time ago) and she has helped me with this Celiac stuff more than anyone. I'm lucky - she also has an autoimmune disease (scleroderma) and so she understands so much more than most people. Plus, she has a fabulous background in neurophysiology and has been able to help me understand how Celiac affects my emotions. I saw her the other day and mentioned that I thought that it was "weird" that my emotions are so profoundly affected by celiac disease. She said, "No - it's not weird at all! What people so often fail to understand is that when your body gets sick, your brain gets sick also. The means that your emotions are often skewed, disconnected, and confused. Of course that's stressful. It makes perfect sense for you to feel sad or angry." So - look carefully at what's going in your bod! I totally fall apart when I've ingested gluten. And because I didn't actually have GI symptoms until the other day, that was my indicator that I'd eaten something bad. Linda (my counselor) also said that, in her experience with other patients - it's very common to have emotions affected before any other part of the body. So - you might be getting something small enough to not affect your GI system, but powerful enough to affect your thoughts.

(Geez this post is getting long! Sorry!)

As for a "how to" book - I actually know of one It's called "How to Be an Adult in Relationships - The Five Keys to Mindful Loving" by David Richo. It doesn't specifically address autoimmune disorders, or anything cool like that - but it is full of wisdom regarding relationships in general. The amazon link is: Open Original Shared Link if you are interested in it It is a really great book that I think everyone should have. Be sure to check out the table of contents if you look at it on amazon.

That being said - I need to go and re-read it right now! Maybe it will give me an idea of how to better deal with things in my own life. I kinda forgot I had it until you asked. Thanks for reminding me

Okay - I think my space is running out. Good luck to you. My heart is with you. I totally understand. It is so hard to simply have this disease - it just doesn't make sense that the men who are supposed to love us don't try harder to help us through this. We really aren't asking for that much, are we? Just a little empathy and consideration. Why is that so difficult to give?

Anyway - I wish you the best. Feel free to email me if you'd like to talk more about this. It would probably help me too

Take care!

- Michelle

[tarnalberry]

Dh has been super-patient, all considering. I know it's hard for him. We've talked a lot, and recently. Any suggestions, advice or btdt would be greatly appreciated.

Thanks,

Merika

There's lot of stuff for me to address here, so I'll do it piece by piece so I don't forget anything...

Dh is angry a lot. Angry that I'm sick (still, 18 mos after diagnosis). Angry that I don't go places with him (cause I'm sick). Angry that he doesn't go places (because he won't go places by himself). Angry that he's not living the life he imagined he would be at age 33. Angry that I'm not currently contributing to the family income (too sick to do my previous physically-demanding work and take care of a 3 yr old). Angry that I'm not doing enough (he may be right).

Do you (you and your husband) realize how many assumptions and expectations go into making those statments? Here's *some* of them:

• the expectation of what *not* being sick would be like
  
  
• the expectation of what places (and how many) you would go to if healthy
  
  
• the expectation that you go with him (regardless of if you *wanted* to or not, it seems)
  
  
• the assumption of what 33 would be like
  
  
• the expectation of financial contribution, as opposed to non-financial contribution
  
  
• the assumption about how much you're supposed to do
  

Some assumptions and expectations are normal and reasonable, some aren't. And some fall in the middle - they're just different for different people. But if they're not met, it's vital to look at whether or not they are reasonable. Getting to the roots of WHY these expectations not being met make him unhappy, and then angry. At least some of this problem may be solved by HIM changing his expectations - and that's not necessarily a bad thing.

I was in much a similar situation - my husband doesn't go do a number of things with me, not because he's sick, but because he doesn't want to. I'd not go, because I thought it would be... I don't know... not right? weird? would make him unhappy? I stopped making that decision and started making the decision to do what I wanted to do, and he could join me if he liked, but I wouldn't stop doing something good because he wasn't interested in it. HIS decisions are not my responsibility, MINE are. And it's really made a difference for me.

Mostly, he is impatient that I am not "normal" yet (ie not sick). He is tired of having a sick wife. He is tired of seeing me nauseaus, yet again, on the couch. He is tired of going to the grocery store because some days I'm not up to it. ...  He wants to pursue his own art interests (which I support) but wants to do so free of obligation of childcare and whatnot when I'm not up to it.

Again, we may have a problem of expectations - did he expect you to do the grocery store your whole married lives? Did he expect to be able to have children but only parent them when convenient? Impatience is to be expected - he probably feels like his life is on hold waiting for you, and you know how frustrating it can be waiting behind a slow person in a long line. But that happens in life, and his expectations may be a problem here.

Dh used to be a source of strength for me there, but since all our fights, he is now an added source of anxiety.

Please do not overlook the affect that this will have on your physical health, your mental health, your desire to interact with him, AND his feelings about you. He will notice it and it will affect him as well, but not necessarily in a way to get him to stop his behavior. It may, instead, create a vicious circle, and that's something to be aware of to address if it were to come up.

So I am thinking maybe we need to see a counselor for our marriage. I know it took me a long time to say that. I guess I am skeptical of them and if therapy works. I am afraid of going to someone who does not understand what it is like to have a long term illness. Are there people who specialize in this sort of thing?

This is an excellent idea. Not only are there people who specialize in long-term (permanent, even) conditions, but even a good therapist would be able to address the issue without formal training because it is reflective of many other common relationship issues. I would definitely encourage this, but it's not overnight magic, and it takes a lot of hard work - harder than what you have been through if my similar experience has been any marker - that you may balk at. It will require change of him, and will require change of you, and that change may make life contentious at times while you iron out the changes.

Therapy works only if you work at it. A good therapist is going to do nothing more than give you the right tools to solve your own problems. Sometimes those tools are nothing more than a well-directed question, or a well-directed suggestion, or possibly a way of thinking about a problem. But it's up to BOTH of you to use those tools to better your relationship.

I'm in the midst of seeing a therapist for a (possibly) unrelated medical condition that makes sex painful. I've been seeing her for... two years now. There's lot of other factors in my past, and little things in our relationship that also go into it. But even still, while most people would say we've got a great relationship, and we do, there are things that can be improved by change, though making those changes can be very very hard. This year, in particular, has been mentally draining on so many levels, but I know I'm heading in a better direction.

I know illnesses can destroy relationships, but is there a manual (haha) somewhere that describes how to keep one going?

Illness doesn't destroy a relationship, people do. It is quite possible that he doesn't have the mental or physical stamina to support someone who needs to be so reliant on him. If that's something he really can't deal with, getting out of the relationship IS a valid choice for him, I hate to say it. But it's not something to do lightly in the best of situations, and making that sort of decision takes the kind of soul-searching that most people, in general, shy away from. But it's also a valid choice for him to stay in it and come to understand himself better. Communication and self/other-understanding is all that you both need, though it's harder than just saying those two words.

Finally, I would suggest that YOU also evaluate your expectations - you say he's been patient, but others have pointed out he doesn't sound that way. You probably say he's been patient based on how much patience you would expect a person to have. Is your expectation too low?

[KaitiUSA]

I also have not been married and am pretty young to think about it at this point....

I completely agree with the others that posted. Even though you say he is patient, the other things you are describing makes him sound like he's a little kid and is being selfish. The real world is tough, things happen and unexpected things happen that you have to deal with.He chose to marry you and needs to support you through these tough times, not pull you down emotionally.

Tiffany is right though, illnesses do not destroy marriages-it's the people that destroy the marriages.

Counseling will definitely probably help but you both have to be open to it and willing to work at it. My parents had an issue years ago in their marriage and they went to couseling and it helped so much but it did take a while of going there.

Have you ben extra careful not to be glutened? Have you checked soaps/shampoos/makeups etc? You should also get tested for other intolerances, as Carrie pointed out.

[Guest nini]

OK... I was dx at 34, have been married for 13 years and have a 5 year old, and I work at a very physically demanding job. (Just so you know where I'm coming from)

Prior to my dx my hubby exhibited a lot of the same behaviors as yours. It was very frustrating. I was on the verge of DYING and he couldn't be bothered to go to the grocery store or take care of the kid. He was being exceptionally selfish. However, he also kept saying there was something really wrong with me (DUH!) and that I needed to go to a specialist... He didn't understand that I thought I was doing everything I could. When I was finally dx with Celiac it was like a light bulb went on in my brain and I realized that he was frustrated too, but didn't know HOW to be helpful. I had to tell him THIS is what helps, THIS is NOT HELPFUL... THIS is where I need you to take over (ie: paying bills) etc.

2 years into the gluten-free diet I am still not completely well, I have good days and bad days, BUT because I spoke up and let him know how he wasn't helping and how he could be more helpful... (y'know, LET him be the man and take some responsibility for his family, I didn't have to do it all) He has made a major turnaround and our marriage is stronger than it's ever been.

It does sound like you both have some unrealistic expectations of what married life with kids is supposed to be like and you really need to talk about that. I agree that at this point a trained counselor may be the best bet.

Things cannot go on the way they have been, there will have to be change and some of it may be painful, but you may find that it's better.

[Guest nini]

I also have to reiterate that you really need to reevaluate your diet and make 100% sure you are not getting contaminated with hidden glutens from soups, sauces, dressings, flavorings, cereals, crumbs left around from DH, lipsticks, shampoos, makeup, medicines, toothpaste, soda's, tea's, lemonades, etc.

I was just talking to a lady with Celiac yesterday who couldn't understand why she wasn't getting better being gluten-free and I asked her what she was eating and one of her top things was Taco's from Taco Bell. Well sweets, the meat mixture at Taco Bell is FULL of bad ol gluten! The next thing was a salad dressing that she loves that once she looked close at the label she realized it had wheat starch in it. Also, If you buy a product a million times ALWAYS read the label because ingredients change. Good example is Kelloggs Corn Pops were gluten-free and safe for years. Jan. of 2004 they added wheat starch to the ingredients (less expensive than corn starch) But that's another can of worms!

I'm sorry that you are having such a hard time with it, but it does really sound like you are still getting gluten in your system somehow and that is making it harder for you to cope, As well as you may have other food intolerance's. Feel free to PM or E-mail me if you want more suggestions.

Nisla

[pixiegirl]

Ouch... lets be careful dissing the husband to no end.... I'm assuming she loves him so it must be hurtful to hear him called selfish and such. Maybe he is and maybe he isn't (or maybe it goes back and forth).

Maybe some of you haven't cared for a chronically ill person, I have and no matter how much you love them, its not easy. I know a number of people that had long mostly happy marriages and when their partner became ill, they changed, they sometimes seemed selfish, short tempered, irratated and they themselves questioned if they could do this... if they were strong enough mentally and physically to continue on and they agonized over how they sometimes behaved. It can be so exhausting.

Now, Merika doesn't sound as ill as some of these friends I refer to but she does sound chronically ill and over time it really takes it toll. They have support groups for caregivers of the chronically ill just because its so difficult, so lets not downplay that at all.

I think when you say "thru sickness and health" at a young age, you are sort of thinking (or hoping) that if it happens it will be when we are old, I doubt a lot of men that marry in their early 20's give much thought to, what will I do if my spouse gets very sick at a young age, we just dont expect that to happen. And if that does happen and the couple's entire lifestyle changes, well heck, its very dissapointing, disillusioning, not to mention the actual stressful issues of the illness its self.

Given all that, your husband may just be confused and need someone to listen to him.. I agree with the others that said family therapy might be the next step. Don't just keep doing the same thing, it beats you down and a good therapist will have some suggestions that might make everyone happy. Also I don't know if your husband plays sports but joining a local basketball group or baseball once a week may help him release some of his pent up frustrations. Just joining anything.... an investing club, learn to golf, it will give him some time to do things he enjoys and might help his attitude when he comes home.

Either way, this group is here to listen!

Susan

[frenchiemama]

I have cared for a terminally ill person. I know how it is.

**This is something that I DON'T EVER TALK ABOUT. Even my friends (except one old one who where there through it) don't know. I will not be mentioning this ever, ever again**

I got married when I was 20 to my HS sweetheart. It was a fairly rocky first year, and to be honest I was even considering leaving him. Then after just under 1.5 years he got sick. Real sick. He had primary pulmonary hypertension w/ congestive heart failure plus a chronic blood disease (large granule lymphocyte leukemia) that required an unbelievable amount of care.

So at the age of 22 I had to become his sole caretaker, while working full time and taking care of all the housework and bills. I had to drop out of school. I had to sit for countless days in cardiac intensive care wards. I had to give injections, clean incisions, clean up messes when he was sick or couldn't make it to the bathroom, help him bathe at times. I was also working as many hours as I could on the nightshift in a factory to keep us above water. I did this all with no help whatsoever. You know when something bad happens and everyone says "Give me a call if you ever need anything"? They don't really mean it. ALL of our friends (except one girlfriend of mine) totally disappeared and his family did squat to help us out.

Not only did I have that burden, but (I hate to speak ill of the dead but I'm being totally honest here) he treated me like dirt. Worse than dirt. Even before he got sick he was a very difficult person to deal with, and IMO very manipulative and emotionally/verbally abusive. After he got sick it was like living with the devil. I got screamed at, called names, had things thrown at me, constantly degraded and when he had a somewhat psychotic episode because of long-term prednisone use he threatened me with a gun (that he bought without telling me and lied to me about). He hated the world and took it out on me. He also became a vicodin addict and started drinking (with all his medications, not good).

But do you know what? I DEALT WITH IT. I didn't complain. I didn't whine about having to go to the grocery store all the time. I did it because I was his wife and that is what you have to do, it was my job.

He lived much longer than the initial prognosis of 6 months. I won't lie, towards the end it was pretty miserable for me, but I still did what I had to do.

So excuse me if I sound a little bitter, but when I hear a 33 year old man complaining about having to go to the grocery store when he doesn't want to or that he's tired of his wife being tired and sick it makes me fume. There comes a point in life when you just have to suck it up and be an adult.

I'm going to be 28 soon, still not done with school, still having financial difficulties from all the medical bills. But I am married to a wonderful man who loves me and I'm ok with my life. Is this where I wanted to be right now? Not what I had planned, but life doesn't usually follow plans.

Anyway, I'm sure that she loves her husband and I assume that he loves her too. All I'm trying to say is that life can really suck and whining about it does no one any good.

[ianm]

My situation is just the opposite. I, the male, am the one with celiac disease. My ex liked my being sick all the time because it gave her a sense of superiority over me. However once I found the source of my illness my health and life changed drastically for the better. What she could not handle was the fact that I got better. That was not in her plans at all. You would think that she would be happy to have a healthy partner but no her immaturity would no allow it. I wanted to see a counseler but she refused because the words change, grow and adapt were not in her vocabulary.

Most men simply do not know how to deal with someone who is ill. He is acting foolish because he is scared of your condition but lacks the means to express or deal with it. If his life is not what he thought it would be at 33 I have news for him, nobody's life ever turns out the way they thought it would be. Quite frankly I thought I would be dead by the time I was 40 that is how sick I was.

You need to get to a marriage counselor ASAP! He probably needs to hear from somebody else that what you have is real and very serious. You also need to make sure ALL gluten is out of your diet and it sounds like there may be other food intolerances or another health problem going on.

[jenvan]

Merika-

1st off I also echo the evaulation of gluten-free diet--contamination possibilities etc...

I have to say that my heart breaks for you as I read your post. And it makes a lot of sense to me... One of the main things I have learned from my marriage, and from watching my parents, is how quickly and how subtley two spouses hearts can separate. I think there are a few couples out there who, for whatever reason, personality, laid back, seem to have easier marriages than some of the rest of us. However, I believe that for the majority of us, and certainly for myself, marriage is a commitment that requires a great deal of work and resolve--but can reap benefits like no other relationship can. Although my husband and I have the same world view and life values, our personalities are very different, and he is incredibily stubborn. (and I have my faults too!) When we chose to be married, it was our desire, but we also realized that it was a leap of faith and that struggles, perhaps even great ones, were inevitable.

With that in mind, because of our faith as Christians, we believe our commitment is for life, and that no matter what, God will give us the grace to stay together and continue to care for one another. When we were married, we even wrote our own marriage vows that specifically mentioned our weaknesses as individuals and what we knew we would struggle with. I'm not sure your ideas on marriage etc, but perhaps my thoughts will encourage you...

Now, knowing how hard marriage can be, adding an illness, depression or despair on top of that can seem daunting, and at times impossible to pull through. My health has gotten worse since I've been married, and I know that at times, how I feel physcially, and the discouragement I feel sometimes, makes it hard for me to treat my husband well, and to care for him in the ways he needs. I often feel like I have little to give, as I'm sure you do. I can sense how this has subdued his own heart, and I think creates a cloud that hangs over him. Like 'how is jen going to feel when i get home? is she going to feel like doing what i want to do...?' And it creates a cycle that makes his response worse, and in turn makes my response worse etc etc.

I would definitely see a marriage and family counselor, and do some research or get a referral to someone who specializes in that. And if you don't like the 1st person you see, go to another. Perhaps you have some friends who know of someone? Or a local church might keep a list as well. My church has a list of counselors they refer people to for specific issues. Chemistry is important with a counselor. Brian and I are blessed b/c we are very good friends with the pastor who married us, and we can get together and process things with him when we need to. Would your husband read a book if you've got him one? Not all men, but I think the majority would be less apt to read a book. I know my husband would be. They are usually not as interested in processing and thinking about relationships as we are. Which is also part of the reason for his impatience. I do believe that generally speaking (and this isn't for all men of course!), that it is harder for a man to tangibly care for someone than it is for a woman. It is just how many of them are made. And of course, they have strengths that we as woman do not often have... Also make sure that as you focus on your marriage in counseling, that you also focus on your own anxiety as well. I think you will see improvement in your situation even as your anxiety is brought under control.

Make sure you either begin or continue to state your needs and where you are in simple terms to your husband. And if you can, try to approach him in a way that makes him not feel attacked, but needed as a husband and as a man. I know you are probably nearing bitterness and that you don't feel like you have much to give, but I encourage you, if you have the ability, to try and affirm your husband and care for him in a few simple ways. I am always amazed at how poor communication often destroys a marriage in very small ways initially. I believe in boundaries and that your husband should be treating you well, but I also know that when change needs to start, it is often best to start with ourselves--even if we don't see the situation as being caused by us. I have a similiar situation as you and your husband, and I know that as much as I long to be cared for by my husband, and I hope for that, that I need to initate that care to him myself, and that oftentimes, when he has received from me, he will want to give in return.

This is a lot longer than I had hoped! But healthy marriages are a passion of mine, and so I feel much for you and where you are at. I will be praying for you this morning. Definitely seek a counselor when Monday rolls around and please keep us updated. And be encouraged, I believe that many people give up too soon, and that great healing and forgiveness CAN occur in marriages, even ones that have been struggling for a long time. I have seen it happen

[Emme999]

My boyfriend is paralyzed from the chest down. So I have a really good understanding of being with someone who has limitations. When our relationship began, I had no idea how complicated life would be with someone who has so many ... complications. But I went into it with the idea of "Okay, this probably wont be easy like the other relationships that I've had, but I really love him - so I will take it one thing at a time." I hope, with all of my heart, that the person I end up with (whether it is this man or another) has the compassion to think of my limitations the same way.

It's not about the person you are with making you happy and catering to you every second of the day. It's about trying to care for each other in an equal way. And it shouldn't ever be a struggle to help the person you love. That's just what you do. There isn't any "have to" or "want to" - it's just what you do! That's what commitment is.

Good luck!

- Michelle

p.s. Frenchiemama - I admire your strength. I am so sorry that you had to go through that pain. You are a very honorable woman. I'm so glad you are with a loving man now

[Guest Viola]

Marriage can have all sorts of pit falls even when both are healthy. Being ill all the time makes it harder for both partners.

Before I was diagnosed I was really sick and sent to a specialist 1000 miles from home. That was of course expensive, we had two very little children and of course my DH and family were getting tired of me being sick all the time. Then it all got worse when my specialist couldn't find the problem (he didn't test for celiac disease) and told my DH that it was all in my head and told me to go home and look after my husband (in bed) and my children and stop worring about myself. Now I was not only still sick, but feeling guilty about the expense, and causing problems with my DH and other family members. YES .. I was feeling guilty!

Well, now my DH, parents and the rest of the relatives are totally convinced I'm being self centered and making myself sick. So I shut up and carry on as best I can getting sicker and thinner. Finally when I was age 41 and 87 pounds a doctor decided to run the blood tests. And yes, I finally had a diagnoses!

Now the big changes came ... The biggest one being that I gained self esteme and started standing up for myself. I tried to be diplomatic in the ways I said things, but DID tell them that NO I'm not comfortable in doing this or that, and YES I am getting a dog and a horse. (My DH refused to allow it before). It would be good to keep me excercised and have something to look forward to everyday. (we are on six acres so a horse was logical) The funny thing was that both animals not only kept me company, but they are not critical, are comforting and gave me even more self esteme. After all, if I could handle a huge horse bucking when a grouse flushed in the bush, or met a bear on the trail ... hey .. I could handle anything, even an angry spouse. So in effect, they were my physio-therapist (I'm arthritic), my anti depressant, and my mental therapist.

The strange thing was that as soon as I started standing up for myself I got more respect from everyone and a lot more co-operation. The diagnosis did help in that also, of course. They finally knew that "I was sick!"

Now things are pretty good. My DH asks if this or that would work for me, he helps to figure out the eating problems so we can go somewhere, and we do do things alone without feeling guilty about leaving the other at home.

You need to quit being defensive and feeling guilty. Only then can you work out solutions to the problems without hurt feeling getting in the way on either side. Pick the things you are interested in and make a special effort to think about what the problems would be and then get your DH to help you find solutions. Then when you aren't interested in something he wants to do, assure him that he would enjoy doing it without you, and encourage him to go.

Just remember .. life is a compremise (sp) on all sides. Hang in there ...

[Merika]

Thank you everyone for your thoughtful replies!!

As for being gluten-free, I'm pretty sure I'm 100% gluten-free. The last time I got glutened maybe 6 mos ago at a house under construction where they were installing drywall and mixing/sanding joint compound. It wasn't too bad a reaction, but I learned about ingredients in construction material.

I DO however have multiple food allergies. I did the york allergy test last winter and tested positive to more foods than negative. So I am eating some of the things I should not be. I've eliminated some. There was no way to get enough nutrition and calories just by consuming the items on the negative list. No doubt this is part of my problem, and I'm hoping time will help heal.

Michelle, I will check out that book on Amazon. Dh actually loves to read, and will read almost anything I put in front of him. I am heartened to hear that your talks with a counselor have been helpful.

Tarnalberry, you raise some very good points. Not to slam dh, but he is king of unrealistic expectations in many areas of his life. I think it somewhat paralyzes him into inaction, and that results in anger. On the other hand, he is very intelligent and very willing to adapt and change and grow. (haha, I accidentally typed growl first...) So I am optimistic. It is just slow and painful to get there.

I am probably too patient. I can't rush him though. I can't force him to react differently. He is who he is, yk? There are many wonderful things about him. I figure if he is putting up with my illness and staying in the marriage, I am putting up with immaturity/whatever you call it. It would be ideal if I didn't have to use words like "putting up with", but sometimes that's what it seems like. I try to be accepting of his faults. We all have some.

Whether he * should* be angry is a whole 'nother question. What I am faced with is that he *is* angry. This is my reality to deal with. It is his reality too right now.

KaitiUSA, glad to hear counseling helped your folks.

Nini, I like that you are very straightforward. So am I usually. But maybe I need to be more clear on what I need from him. Thank you.

Susan, I realized when I sent my post that I was somewhat husband-bashing and probably including more of his annoying behaviors than my own No one here has offended me, I have a pretty thick skin, so to speak....I think you are right about age - I was 23, dh was 24 when we married. Young enough to think that big problems were far far away....

Frenchimama, you rock! You stuck it out for a man that had no where else to turn, you are a true hero. I am glad you have found happiness now. Your dedication in tough times is exactly the area in which my dh is weakest. We have a long history of when push comes to shove and I really honest to god NEED him for something, he cannot cope - disappears, gets mad, huffs and puffs, you name it. From the time just after marriage when i sprained one ankle and had stitches in my other leg and couldn't walk, up to now. Mind you, if I just casually mention how a coffee might be nice, he's all over it and makes one pronto. I've never understood that.

Ianm, ouch! Yes, marriage counselor is looking better and better.

Jenvan, thank you. Dh and I reached the point of will he stay or will he go last summer. He stayed. So I am comfortable saying we are both committed to making it work out. I am trying to pay him more attention, and it is helping. Part of that is getting rid of fights like the grocery store, so I don't have the stress of going (or of asking him) and can be more rested and have some of that time/energy for him. As my son's gotten older, it's also gotten easier to have a few more minutes free. Dh was pretty badly neglected with the combination of baby-caring and celiac. This is probably the area I need to work in most.

I hope I've responded to everyone. It's been very helpful to hear what you have to say. I'll keep you posted.

Merika

[Merika]

Hi Shirley,

We must have posted at the same time. Your story is a lot like mine. When I first got super sick, the docs couldn't find a diagnosis and said it was all in my head. I knew it wasn't, and my parents were helpful, but there was only so much we could do. So I just lived with it for 13 years.

Dh and I have been talking about doing things separately. It is very against his nature. I did shove him out the door to a glass camp for 3 weeks this spring. (He's an artist.) It's maybe the 3rd time he's ever done anything without me that was "fun" and not work-mandated (although I guess it was work-related).

Interestingly, this has given me the freedom to consider going to events and out with people he's not really interested in. So there is hope

Merika

[Guest nini]

Merika, YW, I think if you approach it in a loving non confrontational way with him, you will get your best results, or you could try the other method that works... Reaching the point of total meltdown(YOU) and flipping out on him and telling him you CAN'T do it anymore, he's gonna have to! (LOL!) I'm only half kidding on that one!

I've found with my hubby, that he wanted to help me more but I gave off the impression that I could do it all by myself and I didn't need him. Communication is key. I had to let him know that I do need him so very much and I can't do it all without him. Guys don't usually know how to communicate their fear and frustration in a way other than anger, so encouraging him to talk about it could be helpful, if you need a professional counselor to get you to this point though, there is no shame in that!

[frenchiemama]

Good luck to you guys, I'm sure that a counselor will be able to help. It sounds like what you guys need is to communicate what you are feeling in a way that is a) more understandable to eachother and more constructive. And I'm sorry if I came off sounding too harsh before, it just annoys me when people are made to feel guilty for being sick. (That's one of the reasons that my parents divorced, because my mom was always sick like many people here have been and my dad just didn't have the patience to deal with it).

[tarnalberry]

good luck, merika. it can be hard work, but we do what we have to do. the medical condition that sent me to a therapist in the first place was one that affected our relationship (it make sex painful, so the effect on the relationship comes about in a different, but not necessarily less profound, manner), and we're still working past it. it can be tough with a husband who is slow at changing himself and doesn't want to be introspective. he's a great guy, but we have our own set of expecations and assumptions and ways of going about things, and when the are at cross purposes, it gets hard! it's only been this year that I've been assertive enough to really put it to him about some things that are that important to me. (for instance, the amount of time he spends playing computer games - he neither seems to realize how long he plays them, nor that his choice to play them over finding something to do with me makes me feel like a convenience. it was hard getting him to understand it - it took many conversations and me to just state "then why am I here in the marriage". he didn't like hearing, and I knew he wouldn't, but he's a big boy and can deal with adulthood. ;-) )

it seems like it should be easier with a partner of many years (for us, we started going out freshman year of college, got married five years later, and will have our fourth anniversary this year), but you get used to being with each other so much that you don't look at how you've both changed over the years and how it affects the marriage.

I hope he'll be willing to work with you, and I'm glad your patient - this is definitely one of those things that will need it. ;-)

[pixiegirl]

I feel really lucky to have my boyfriend... we were together before my diagnoses of celiac and still are, he told me in the beginning when I told him how worried I was how it might effect us... he said, its a diet, its just not a problem. I'm lucky because if I don't accidently gluten myself I feel really good, so I don't have any lingering problems.

He goes out of his way to help me... we eat out a lot and he won't just speak to the waiter, he often calls the restaurant ahead of time, speaks to the matire de, the waiter and asks if he can speak to the chef. When we were in Boston 2 weeks ago, as we walked around the city we'd find a place we wanted to have dinner in and we'd stop in there at like 3 pm so he could speak to everyone. Then we'd make a reservation for later in the evening. He's an assertive guy (which I love).

I don't however live with him and as I said I'm only sick if I get glutened so... but I still feel really lucky. I wish you all the best.

Susan

[scaredparent]

Hi I am not a marriage expert, but I have been married for 8 years and have 5 children. I dont have celiac disease and neither does my husband, but 1 of my children have celiac disease and I also have 1 with another disability. That is just a little history but my son was but on a gluten-free diet in Feb. and after a couple of months he got really bad again and I couln't figure out why and so I took him back to the dr and they put him on Singular and Zertec and within a week he was back to normal. They told me that he had esosinophilic gastrointitis. Which basically means he is allergic to baisically everthing. He still remains on a gluten-free diet. Maybe you can check with your dr about allergy meds on top of gluten-free diet.

I cant tell you about emotions and all of that but I do understand about the strain on a marriage due to illness. But all I can say is be patient and hang in there things will get better. Keep your head up. My mom told me when I was younger that husbands are just big boys in training (hahahah).

[jenvan]

Frenchiemama--

Wanted to also say thanks for sharing some of your story with us here. I have a great deal of respect for you !

Tiffany-- I hope you are get some answers for your pain soon. Sex can be difficult enough on its own and it is an important part of a marriage too...

Merika-- Please keep us updated on your situation

[tarnalberry]

Tiffany-- I hope you are get some answers for your pain soon. Sex can be difficult enough on its own and it is an important part of a marriage too...

Thanks. It's under control at the moment, but it's not really the sort of thing you can cure, so it's a matter of maintenance. Interestingly enough, the gluten-free diet may actually be helping, in addition to all the other stuff I've done for it. Dealing with the psychological ramifications is the hardest part - any sort of significant problem that affects the interaction of partners can create it's own rats nest of problems to fix. But, as my yoga teacher says, "the journey is the joy".

Between that, the chronic knee problems I have, the asthma, and the gluten-intolerance, I certainly do sometimes feel a bit... broken, or like an oddity. But then I realize that everyone has something, and even those who have fewer obvious oddities here and now will have their own bridges to cross. We can only do our best to surround ourselves with people who are as accepting of ourselves as we are, and as we will be, as we need ourselves to be.

[dogear]

Merika,

There is one aspect of your husband's behavoir, that stands out to me and changes the complexicion of the rest of your post. Namely that he complains about the food "every day" and yet eats it the vast majority of the time. To me this sounds, as though there is some layer of manipulation here. Most likely it sounds like he is try to play matyr on you or something. At worst, it sounds like he may be an extremely controlling type, who has at least some ambiguities about your recovery-lest he no longer have something to complain about.

I remember having nursed my mom through a very painful knee surgery as a young teenager. I was often terrified and had no idea, what to do. Scared to come home from school, over what I might find. Other family members had some behavoirs that were much like your husbands'. And frankly, I see no excuse for that.

The part about him grousing over your food is the most ridiculous part, by far and away. And it seriously makes me question the motives behind his behavoir.

My advice would be:

1) Until your health is on an even keel and if/when the marital situation is resolved, I'd strongly suggest that you do ALL your own cooking. If the former happens but not the latter, you can eat at restaurants or food cooked by friends that you trust. But DON'T eat anything that man cooks, until the situation is resolved.

At best it is a bad idea, to cede ANY control over such a diet to someone who resents the whole idea. At worst, you might be experiencing some level of sabotage, if you follow.

2) Get some medical tests, and get some high quality gluten-free vitamins if you don't already have them. Trader Joe's is a very good place, where all the vitamins are gluten-free and very high quality. I'd recommend combining the Men's multivitamin with the selenium, Vitamin C, a probiotic, and possibly some iron. (Yes, I use the Men's too, and I'm female.) Whatever you do make sure that the doses are reasonable, the vitamin is gluten-free (and up to all your other food problems), and that the iodine comes from kelp.

3) Make your husband help you in ways that don't involve cooking your food. Be assertive about it!!!

4) Get a marriage counselor who is good, but doesn't settle for BS, like so many do.

5) Get some support from friends. And try getting back into the workforce, as that may change your morale, and give you some more independence. If you have to pace yourself, try starting with temp labor. And keep as much control of your pay as you can. You should contribute to reasonable mutual expenses, but insist on keeping some in a bank account that only you can touch.

Tiffany,

I hope you and your husband realize that there are other ways to enjoy each other sexually, than intercourse. It might not be great to not have that option, but many couples have periods, where birth control isn't "covered", so that's a common way to deal with it. Some think that was a major reason why birth rates weren't higher in the late Middle Ages and ancient Rome.

Everyone,

I'm amazed that so many people have either endured so many health problems themselves, or in loved ones. Stunned. Frenchimama especially.

[Jonesy]

Merika, my heart goes out to you. I know what it's like to live with a man like that. Fortunately, as I grew and changed, my husband grew and changed and we have both finally reached a state of Joy and Acceptance in the other, warts and all.

We reached our 50th anniversary, still working on learning how to be in relationship. We're now married for 57 years and seem to have it finally nailed.

I want to applaud all who have responded to this post

Each of you has revealed a wisdom and understanding far beyond your years. If I had been just half as smart as you people, I wouldn't have had to struggle through so many issues.

Keep up the good work. Your loving, caring attitudes will be like bread cast upon the waters. You are all so very special. I'd love to sit down and have a nice chat with each of you, and I would come away enriched.

Merika, I wish you success in finding a Counselor you both feel comfortable with, and I pray that your DH will fully embrace the idea of Counseling.

Best wishes to all of you.

Maryellen