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How To Deal With Disbelieving Family

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Posted 21 March 2004 - 02:16 PM

Just another day when my husband offered me bread and when I told him that I couldn't eat it because it made me sick he said that he never saw me sick. Even when I don't bring it up and just pass on eating things I shouldn't I have to hear that what I have isn't really a problem

I am not asking for anyone to feel sorry for me - not even complaining about the food. It seems to bother my husband more than me :angry:
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Posted 21 March 2004 - 04:27 PM

I have friends who can't remember what I can't eat. Some of them just canNOT remember what has gluten in it and what doesn't. And I don't mean they can't remember that salad dressing or something might not be gluten-free. I mean things like pizza. Drives me nuts. I've actually started mentally categorizing my friends by who can remember and who can't. There are my friends who held a gluten-free party for me a couple months after my diagnosis, and the one who beats me to the punch questioning waiters in restaurants. Then there are the ones who want to order pizza or stop at Dunkin' Donuts. Oh well. I'll get through to them all eventually.

Then there's my mom, who always remembers I can't have gluten, but it still bothers her more than it does me. She feels so bad about it -- for months after my diagnosis she felt guilty every time she had toast at breakfast -- but that's good because she's a fabulous cook and it's motivated her to work hard on figuring out good recipes for me. Every time I visit my parents we make some new stuff and she sends me home with a cooler full of homemade gnocchi, pumpkin bread, tamale pie, stuff like that. But I think she needs to get tested and she won't. So sometimes she tries to deny that some of the symptoms I had before I was diagnosed are related, because she doesn't want to believe she might be having symptoms that she doesn't know about. Like, she wants to think that the fact that I was depressive before I was diagnosed is unrelated to the fact that since I've been gluten-free I've stopped getting depressed.
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Posted 23 March 2004 - 09:42 AM

Boy, have I experienced a lot of this stuff in the four weeks I've been gluten-free. Some people I would've never expected to be sympathetic are very much so; others who I thought were good friends have been dismissive or disinterested to the point of callousness ("oh, it won't be so bad, giving up gluten" or "well, be grateful it's not something much worse"). I also find some people won't believe something unless they get it from a doctor. So with those people, I emphasize "the doctor has put me on a very strict gluten-free diet" and "my doctor says even a little bit can damage my intestines and increase my health risks for cancer and other things." This seems to drive the point home that it isn't me deciding I'm a wee bit allergic to wheat, that it's a serious illness.

For people such as spouses and parents who are less than ideally supportive at times, I am trying to put myself in their position and realize it's an adjustment for them as well (and for some of them, has implications for their own health if they are resisting getting tested, or having their own children tested). That's where the denial comes from. For some people it is just too upsetting or uncomfortable to face unpleasant truths so they pretend they don't exist (that's where the "it's all in your head" and "you must be exaggerating" and "you don't seem to be sick" stuff comes from).

With people who need a longer time to accept what we are living with, my only suggestion is patience and a little backing off. It is too exhausting to expend energy trying to convince someone who is not ready to be convinced. But, many people do respond well to "proof." In my case, my husband turned out to be very supportive of my diet and -- and I think that's mostly because my bloodwork showed a positive (though weak) for celiac disease and the doctor counseled trying the diet for 3 months. He is a very pragmatic guy, and I'm sure the numbers, and the doctor's diagnosis, won him over. I also think it's one of those diseases that is going to enter the mainstream consciousness big time in the next few years (the way colon cancer, ADD, and autism have already done) and that will help all of us in terms of public awareness and education.
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