Need help making hubby understand

[Zizzle]

Norman paid me a visit Friday night. First time all year! I was so happy. No one in my household could appreciate my elation, although my kids seemed more excited than my husband (DH). I don't share much of the gory details of my MC with my DH, in part because he recoils at the thought of women using the bathroom at all, but also because he gets tired of all the medical talk. I work in public health and follow all health news intently. Friends call me for medical advice, etc. He already has to endure my painstaking ordering at restaurants, special grocery needs, etc. And he's been very supportive about the diet overall, at least I thought so...

His mother ordered the Gene Smart Diet book for herself and accidentally shipped it to us. This coincided with his wellness screen at work which reminded him that he's now 15 pounds overweight and his blood pressure is starting to creep up. He's a Type-A, all or nothing personality, so he went from ice cream and chip-eating couch potato to running every day and watching everything he eats. I've witnessed this pattern before in our 17 year relationship -- it won't last. But I stand by and try to be supportive.

I read portions of the Gene Smart Diet book - it's pretty standard stuff. Good emphasis on anti-inflammatory foods, but also too much emphasis on whole grains and fiber. How can the author say we should eat like our ancestors, then include daily sandwiches on whole grain bread, margarine and other "low-fat" processed foods?? How can he craft a diet tailored to our genes and not mention the fact that some people's genes predispose them to gluten intolerance? Or that eating large fish species 4-5/week might result in excess mercury ingestion?
The five principles of The Gene Smart Diet are:
Exercising more.
Reducing calories.
Increasing fiber.
Adding omega-3 fatty acids.
Increasing polyphenols (a type of antioxidant found in fruits, vegetables, and tea).

Anyway, DH decided to start the diet and asked that I do it with him. In the same conversation, he said the following things, although not necessarily in this order. My mental reaction is in brackets:
1) "This book says apple shaped people (you) are prone to inflammation wherever you have the tendency to store fat -- don't you think that contributes to your condition?" [I'm 5'4", 125 lbs, and had 2 kids - do I really need to worry about the extra inch on my belly?!?!]
2) If you're eating GF, you don't get enough fiber. [I'm trying to avoid fiber!]
3) I think the fact that you weren't exercising and we weren't eating right all the time after the kids were born probably triggered your condition; these were causing inflammation and yours is an inflammatory condition, right? [so MC is my fault and could have been prevented??]
4) Can't you follow this diet with me and simply omit the parts you can't eat? [that's at least one third of every meal! If I had time to follow diets and read cookbooks, I would follow a GF/DF/SF/YF cookbook]
5) Wait, you can't have dairy or soy either? Since when? Can you eat soybeans? Margarine? Low fat mayo? [NO!!!]
6) Why are you doing this? What doctor told you not to eat these foods? What doctor is managing your care and telling you what to eat? If you are intolerant to these foods, then why aren't you better? I haven't noticed a difference between now and before you started this diet [ARE YOU KIDDING ME?!?! I can leave the house now and not have to wonder where the closest bathroom is!]

I explained the online support group I am in with 600+ others with my condition, and the fact that it includes doctors. But he wants me to see a nutritionist and a doctor to manage my diet.
Basically he said unless a doctor tells me this is what I need to do, he's not buying it.

I cried, alot, during and after our conversations. I explained how much willpower it took to be on my diet. I explained that he sometimes sees me binging at meals (no portion control) because it's often the first real, safe meal of the day that I can enjoy, and I'm making up for calories I haven't been able to eat throughout the day. He complianed that my diet focuses on what I can't eat instead of what I can and should be eating, and I get too many high glycemic celiac foods (cereals, rice crackers, tortillas, chips). But I explained I can't eat all the high fiber greens and salads that I'm often forced to eat. He said he didn't lack sympathy, he just didn't understand.

Then he made us a healthy dinner as part of his new weight loss diet - brown rice, broccoli, and spicy blackened tuna -- MC MURDER! I ate it all, simply explaining that I would probably pay for the cayenne pepper in the blackened seasoning.

What do I do to get him on my side??

[natythingycolbery]

There are only 2 things I can think off... 1 show him this group (In particular the diet section as well as maybe showing him some of the posts from members here), 2- Take him to an appointment for your MC (If you haven't already) because then he can ask questions himself and feel involved.

[starfire]

Unless your doctor supports your diet, taking him to see your Dr. will probably just reinforce his opinions.

Wow, this is tough to try and get someone else to understand your disease. Maybe you hid too much from him while you were really, really bad.

Perhaps he is just scared and is in denial........ unfortunately, that doesn't help you.

Try to keep the communication open about what's going on with you because if he doesn't know there's very little chance he'll understand.

I have no idea whether to hope the dinner you ate for him went well (after the fact) or went bad (to teach him a lesson). That's a terrible spot to be in.

I do feel that you have come too far (you did say you had a "Norman") to toss it all away.

Love, Shirley

[JLH]

Before the Earth Balance GF, SF, DF margarine was born, I used to use olive oil on my Edwards rice crackers. It was good.

How did that meal treat you? Why did you eat something that might make you sick? I don't understand.

[natythingycolbery]

Unless your doctor supports your diet, taking him to see your Dr. will probably just reinforce his opinions.

That is the sentence I forgot to add in to what I said, thanks Shirley!

[Zizzle]

How did that meal treat you? Why did you eat something that might make you sick? I don't understand.

It's now 9:30 am and no D. I felt fine last night and feel good now, so I guess all the roughage and spices weren't enough to do me in.
I ate it, and many other meals like it, because DH made the effort to cook a GF/DF/SF/YF meal for me. He did the grocery shopping, examined all the ingredients and asked questions. He's partial to spicy food, so that's usually where he goes wrong, but there's only so much food I can reject without causing ill-will and limiting his willingness to cook for me. Call it self-sabotage if you like, I call it marital survival.

[ant]

Dear Zizzle

Basically he said unless a doctor tells me this is what I need to do

Unless we find a doc that agrees with the diet approach, what is the alternative? Steroids, or worse, for the rest of our lives? They DO NOT HAVE ANOTHER VIABLE SOLUTION, so why should the one that has most clinical success be pooh-poohed (pun intended)

Hope you find a way through this, Best ant

[tex]

Zizzle,

I feel for you. The problem you describe comes up fairly often on this board, and there is never a good, "satisfying" answer to it. Basically, the problem boils down to this: Like most people, your husband pictures doctors as indisputable bastions of medical knowledge, who never, (intentionally), make mistakes. So he trusts doctors to a fault. It appears that the only people in the world who have learned that doctors are only human, and they are therefore not only not perfect, but vulnerable to making stupid mistakes, (like anyone else), are individuals who have been treated by doctors who didn't know what they were doing, and then those individuals went on to discover that there are indeed ways to resolve their medical issues, (even though the doctors insist that those will not work). So the big question is how do you diplomatically tell someone you love, that they don't know what they're talking about, when the medical "experts" back them up?:

I wish I knew how to answer that question, because it holds the key to a lot of relationship issues. IMO, in most cases, it's going to have to boil down to a question of trust. If a spouse, (or other loved one), doesn't respect our judgment enough to accept our educated opinion about a condition that we have to live with every day, then they are probably either being overly protective, or they have a blind faith in doctors, that overrides every other consideration.

It's not like we're ignorant babes in the woods. Their position would be understandable, if we were totally ignorant about our condition. In reality, though, we have researched this stuff to the extent that individually, each and every one of us who has been a member of this board for any significant amount of time, (at least several months), and have actively participated in the discussions, has probably devoted at least 100 times as much time to learning about this disease, than their GI doc ever spent learning about it. That's because medical schools continue to treat MC as a rare disease, so they don't bother to train medical students how to effectively deal with it. MC is mentioned in passing, and that's about the extent of it. Most doctors never expected to encounter a case of it during their careers, because "rare" diseases are, well, rare.

Collectively, the members of this board have spent far more time dealing with this disease, researching it, and learning about it, than probably all of the major hospitals in this country, put together. And here's the big distinction: All of the hospitals get their information from the same limited source - medical research and case studies. Precious few of them research the internet, to see what cutting edge researchers are doing, (because they don't consider that to be "scientifically-acceptable, so it is verboten). And as we all know, precious little "official" research goes on, in the first place, concerning MC, (it's an orphan disease), and few doctors these days pay attention to case studies, anymore. To date, all of the valid medical research and case studies that have been done on this disease, add up to a relatively piddling amount of actual knowledge - the reliable data are very, very limited. This board, on the other hand, maintains an open-minded approach to the study of the disease, and we follow the premise that no one knows more about the disease, than those who have to live with it every day. We learn from each other, and by empirical evidence, we discover what works, and what doesn't work. We study all the "official" medical knowledge available on the subject, and then we temper that knowledge with new information derived from cutting edge research, and hard-earned information learned in the "school of hard knocks", over years of actual experience in living with the disease, and controlling it's symptoms. The database of this discussion board is by far the largest repository of valid information related to dealing with MC and related issues, in the world. In fact, I would venture to guess that it is probably bigger than all of the other MC databases in the world, put together.

So yes, we know what we're talking about, and no, most GI docs really do not understand how to effectively treat the disease, because the treatment is far too complex for them to be able to take the time to understand it, and apply it. Doctors tend to try to use "one-size-fits-all" treatments, (based on the use of drugs), in their treatment programs. That simply does not work for MC. Most people require a customized, fine-tuned program that is suited for their own particular case, and their own lifestyle. The biggest problem is that most GI docs simply can't comprehend how diet could possibly affect a digestive system disease. To most of us, that appears to be a no-brainer, since there is no question that our symptoms are obviously diet-related. Many/most GI docs, of course, (with a few enlightened exceptions), are unwilling to accept that diet matters, even in the face of our repeated success in demonstrating that it is the key to remission with this disease.

And that, in a nutshell, defines the primary difference between us, and the GI specialists. But I still don't know how to convince someone who is so closed-minded that they refuse to even consider the possibility that the doctors could be wrong on this issue. Apparently, you have to have this disease, in order to recognize that important fact.

I wish you the best of luck in trying to maintain peace in the family, while furthering trust, understanding, and knowledge. I didn't include compassion and love in that statement, because I believe they are already in place, it's the trust, understanding, and knowledge, that are in question.

Tex

P. S. FWIW, black pepper caused me gastric distress when I was recovering, but chilies, (such as jalapenos never seemed to bother me, and still don't.

[Zizzle]

Thanks Tex,
I think my only solution here is to find a new doctor, probably a naturopathic practitioner, that believes in diet. I dismissed my original GI and hoped to find someone who understood in Dr. Fasano, but I know now he's only concerned with celiac, and I'm not so concerned about celiac anymore. He also totally dismissed the validity of Enterolab results. I've played email tag with a popular nutritionist here who specializes in gluten intolerance, trying to set up an appointment. I have lots of employer-contributed flex-spending money to burn, so I might was well see as many doctors as it takes to find one who can truly, and fully, manage my care. Either that or order more tests on the internet that no old-school doctor will acknowledge.

I did try to make my DH understand that it's either this diet or steroids or other drugs for the rest of my life. The choice there is obvious. We are friends with a couple in which the wife suffers from Lupus. She does nothing to help herself, especially not diet, she just follows the advice of her doctors, and she's paid a heavy price.

In all other health matters, including the health of our children, DH has trusted my research abilities and resulting knowledge without question. So I think he can come around.

Frankly, if I could do this diet AND get in the best physical shape of my life, he'd be so proud he'd never question anything again.
I guess that means I need to start running or hit the gym. Ugh.

[tex]

In all other health matters, including the health of our children, DH has trusted my research abilities and resulting knowledge without question. So I think he can come around.

I get the impression that he probably trusts your judgment in this also, but he doesn't want to admit it, (even to himself). Most men view such issues differently than women. They look for a logical reason for every problem, and they want to "fix" it, right now, (or at least play a major role in 'fixing" it). IOW, he wants to play an active role in your recovery - he's just not sure how to go about it, because of the medical viewpoint.

Tex

[Kari]

Hi Zizzle,

Just read this thread - boy, does my heart go out to you. You have a lot going on with MC, small children to raise, a career to tend to and a "perfectionist" husband. The first thing I want to say is that you've come such a long way with managing this dreadful condition that you must not compromise it. Your own health has to take priority in your life, or else your ability to manage the rest of it will be compromised. Fortunately you have a large support group here to help you out.

Perhaps the area of exercise is a place where you can please your husband, while at the same time helping yourself out. The key is to find a physical activity that you will enjoy doing and can fit into your life without too much trouble. I know you're probably thinking that "how can I possibly fit anything else into my hectic schedule", but as with the MC diet, this goes under the umbrella of self care, and I have no doubt that someone as self motivated and bright as you are will figure this out. I hope you don't take this suggestion as additional pressure, and I will admit that "exercise" is kind of second nature to me as it has been the only way I could increase my energy level naturally while living with MC.

The reason we refer to MC as "the lonely disease" is because, as Tex so ably describes, it is very difficult to convince anyone else of its "validity" when the vast majority of GI's don't understand it. My own GI was adamant about the fact that there is no evidence of a diet connection with this disease (needless to say "he's fired"). However, you're on the right track with ferreting out a professional who understands MC and can work WITH you instead of AGAINST you. If you manage to do this, bringing your husband along to your appointments should convince him of your being on the right track. He sounds like someone who is concerned with a healthy lifestyle, so I have no doubt that the two of you will be able to sort all of this out.

Sending "healing vibes" your way,
Kari

P.S. In terms of your husband's cooking efforts, perhaps you can ask him to discuss the menu with you before making the purchases and actually cooking. It seems that his and your needs are not too far apart, and his ideas may only need some minor tweaking to work for you as well???

[JLH]

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11955

[Gabes-Apg]

Zizzle
firstly "Woo Hoo" re the norman.

i have a little song and dance i do ' i pooed like a normal person i pooed like a normal person" for the times it has happened and my partner is there, he frowns at this as he was raised that you dont talk about poop.

Re the diet
i have had many people challenge my current eating plan, as the principles of what i am doing is totally against their 30 or 40 years of belief and what the mass media is brainwashing people about foods.

i calmly explain that if they want scientific proof - look up this website...... just because someone managed to get a type of diet printed in a book or sponsered by a govt scientific dept is not a guarentee of proof that it will work. through patience and a bit of pain i have found what works for me, end of story.

hearing your story above makes me appreciate living alone.

Although it didnt appear that way maybe he is trying to embrace what you are doing food wise, the fact that he wanted to prepare a meal for you. He said he didnt understand, ask him what you can do together to help him understand.


big hugs for what is going on around you
and lots of woo hoos and happy dance for the arrival of a norman.....

[starfire]

I call it marital survival.

I just had to say that I understand that statement, Zizzle.

Love, Shirley

[wonderwoman]

Ziggie, you certainly need a big hug. I'm sending some your way.










I thank God that my DH is so understanding of my situation, also that I am retired so I don't have the stress I encountered at work, and also that I don't have a family to have to cook for in addition to cooking for myself.