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Dealing With Other People's Reactions?


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#1 sunflower

 
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Posted 21 July 2004 - 05:13 AM

Hi everyone,

I’m new to this site and I just wanted to say that after reading some of the posts in here I feel a lot better that other people are experiencing same problems and feeling about it in a similar way. Not to say that I have learned some new information. Thank you!

I was diagnosed celiac and lactose-intolerant shortly after I was born, and continued with the diet ever since (with a few breaks for introducing the forbidden food back to my diet and do the testing again, only to prove that yes, I still do have it...). I am 28 now and I have always thought that I have it pretty much under control – I mostly cook for myself, read all the labels when shopping, I work normally and travel quite a lot and manage to do it all despite my diet. OK, it is troublesome, but as long as I cook for myself I never really think I have such a big problem, except for times when I have to deal with other people’s reactions.

The reason why I actually found this site is that I was having a bad day due to something that happened over the last weekend. I went camping with my boyfriend and his co-workers (I have never met them before, so of course they didn’t know I am on gluten and lactose-free diet). On the way back, someone suggested that we go and have a dinner in a good pizza restaurant that he knew. Then I had to explain that I will not be able to eat anything there because I cannot eat anything that contains milk or gluten. Then one of the guys said: “Oh you cannot have milk or gluten? I bet that sucks!” and he started laughing!!! I was speechless. My boyfriend stood for me and told this guy to stop, and said that if they really want to go and have the pizza than the two of us are going to another restaurant, where I can choose something. We did so, but I was still upset and hurt by the reaction of that idiot. Just how can you laugh at such statement??? If I said that I have diabetes or some other illness, would that be so funny too? I talked about it with my boyfriend (who is not celiac), and he said that he does not understand why I am taking this so seriously. He said that some people are just like that and you cannot expect they will understand somebody else's pain unless they experience the same pain themselves. OK, I agree with this, because I have experienced this just too many times. But we had a long talk about people’s reactions to my disease, and how I feel about it, and I could see he still did not get my point. This left me thinking – am I really exaggerating? So I started searching the Internet for message boards related to my diet, to see if somebody else is experiencing the same kind of problems…

Just a few examples of situations which really do make me upset/ hurt/ angry (depending on the case):

1.Your friends/co-workers decide to go and eat somewhere where you have literally nothing that you can eat (pizza, pancakes, ice-cream places and so on). I have nothing against going out to a place with a variety of food, where I can choose something edible, and I don’t mind if someone else is having pizza, pasta etc. But I DO hate it when everyone else made up their minds to go somewhere forbidden for me, and they don’t understand why it is a problem for me. In such cases I usually choose not to go, which still causes me to feel bad as the only one left out, but it’s still better than having to watch everybody else eat something yummy that I’d love to have also and to be the only one who is not eating. At times it really makes me want to scream, like when people try to persuade me that I should join them and go to a nearby ice-cream café and when I explain them my diet restrictions, their answer is: “Well, you could still go and have some fruit juice” and they don’t see why I say no. Aaargh. I sometimes do want to answer such person: “OK, but only if YOU also go and order nothing more than a drink, so you will have your mouth watering as everybody else will be eating this delicious ice-cream”.

2.Variation of the above. You walk down a street with your friends, and one of them says “Hey, let’s buy some ice-cream” and they line up for ice-cream cones, even though they know you have lactose intolerance and even though you have clearly told them before that out of all the yummy foods that you wish so much you could have, ice-cream is at the very top of the list. Then not only they buy the ice-cream, but start commenting on how good it tastes, which makes me so mad! Just as if I was invisible! I think this is what hurts me most about all this. I don’t expect all the world to turn gluten and lactose-free because of me, and I don’t care if total strangers pass me on the street while munching on their hamburgers or licking their ice-cream. I don’t mind if some newly met people who don’t know my problem say “hey, let’s all go and have some pizza”, because they don’t know, so obviously they don’t mind to hurt me. But I DO mind if my friends, who know about my diet, still act as if they didn’t know, because they happen to fancy some food so they go for it. Am I exaggerating here? I have this friend who has done this “ice-cream trick” to me many times, even though I explained to her that it bothers me and I asked her that if she really must have the ice-cream, then at least let her stop commenting on how yummy it is. Didn’t work. Still doesn’t, even though now we live in different cities and see each other only once in a few months, and even on these rare occasions she sometimes does it to me again. I gave up explaining it to her all over again but it hurts all the same. Is it selfish of me to think that it would not kill her if once in a couple of months she tried to surpass her crave for an ice-cream? She could have as much as she wishes every day, so is it really such an effort?

3.Explaining your problem to new people. Gosh, I hate it. I avoid it as long as I can, but sometimes you have to tell why you can’t eat something. And then you get one or more of the statements which you heard oh so many times, like “So WHAT is it that you eat???” “Oh, that must be hard. But at least, you are lucky – you don’t crave things like cookies or ice-cream, so you have no problem keeping your weight” “So what exactly happens if you eat some milk or gluten?” and so on. I have always tried to give explanations, just to make people more aware of this problem, but it never ends and I am slowly growing tired. I also hate this moment when they all stare at me and act as if I just said that I come from outer space. I always hoped that as the number of people with celiac (and all kind of food allergies) is growing, and as you keep explaining to people, that slowly the number of those who have heard about gluten-free diet will slowly increase, but it doesn't seem so. Are we really such a minority?

OK, enough ranting ;). Sorry I made it so long. I guess I just needed to share my thoughts with other people who would understand. I suppose most people with celiac encounter this kind of situations. Any ideas on how to deal with them? I sometimes wish I could handle such situations so that they don’t spoil my day, but every time it happens it always catches me unprepared…

Thanks to everyone who kept reading this until here ;)
and lots of love,

Anna
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#2 Niteyx13

 
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Posted 21 July 2004 - 06:47 AM

Anna,
I am an undiagnosed celiac, but have been on the diet for a little over a month now. I started re-searching the disease when my cousin came for a visit and I found out she was gluten intolerant. All her problems before going gluten free were like mine!
My problem is when I tell people I don't eat gluten, and then explain why. Then they ask me, "Oh, when did you find out this?" I refuse to lie about it, so I have to go through the thing about how my doctor would not listen to me (just hand me another IBS med) and how I decided to try the diet and see what happens. Then I really get looked at like an alien! They think I am a total fruitcake. So, I know what you mean about how people are. I will be glad when I am able to get at least the Entrolab tests done, then I will have SOMETHING to make me seem less insane. Even though I shouldn't have to prove myself to anyone. It's just that I was someone that LOVED to eat (and did) whatever I wanted whenever I wanted before; I would not be on this diet unless it made me feel better! I have mourned my food so much.
The restaurant stuff is hard I agree. I am sooooo sick of salads! I have been so glad this board has been here too, and it has helped me immensely. Thank you for sharing.

Deanna :D
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#3 pinkyagogo

 
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Posted 21 July 2004 - 07:14 AM

Hi anna, sorry you let these things bother you. I guess I am more laid back because if I were you, I would have laughed right along with your boyfriends co-worker who said, "That must suck!" because it does suck!

I surely wouldn't let anyone elses reactions ruin my weekend. Pfft.

Your friends are inviting you along to go to these places because they enjoy your company, they want you along. I doubt they are inviting you to a pizza place or ice cream joint to rub it in your face. So, the next time they invite you to an ice cream cafe why don't you say something like, "Hey let's try this place or that place" somewhere where you know you can eat or drink something, like a coffee cafe or even a starbucks where you could order a tea. Make it about good conversation and fun and not about food.

I hope I don't sound too insensitive because I am not really. I just think not every situation has to be a turned into a mountain. Sometimes you have to laugh at yourself and the hand you were dealt. Makes life more tolorable.

Good luck!
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#4 crc0622

 
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Posted 21 July 2004 - 07:41 AM

I agree, Pinkyagogo - this thing is manageable, not terminal and more healthy. It could be much, much worse. It's only food.

(And it's my understanding that at Starbucks we can have coffee! I certainly hope so, because I've been drinking it.)
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#5 Pegster

 
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Posted 21 July 2004 - 07:56 AM

I agree that it's hard to have a sense of humor about something this life-altering, but it really has been important for me (just to keep my sanity). I spent my life enjoying foods that are suddenly forbidden to me even though my GI symptoms are mild. I LOVE cake- to me a wedding or a birthday always meant CAKE :D I always tell people to eat a piece of cake for me. My loved ones (without fail) tell me the cake is dry, tasteless, just awful, etc. to make me feel better. Some people are going to be insensitive. Your real friends won't mean any harm. I think you need one of the "Gluten Free. Got a problem with that?" T shirts to wear :rolleyes:
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#6 zippyten

 
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Posted 21 July 2004 - 08:00 AM

Anna,
I could relate to much of what you said in your post about other people and their reactions to celiac. I think how people handle this becomes a metaphor in many ways for the rest of how they handle others' feelings and life in general.

For example, one very good friend of mine has not been so supportive or sensitive of my needs since I've been diagnosed (5 months ago)...her first reaction was: "Well, that won't be so bad!" which is, to the say the very least, unsympathetic. If I see her for morning coffee and she happens to buy a doughnut (and, like you, it's not as if I expect the whole world to stop eating or enjoying gluten) she'll remark on how she really wants it and how great it tastes, etc, specifically directed at me! She also continues to invite me and my kids over for pizza, or go out for pizza, no matter how many times I try to nicely remind her that it's fine for the kids, but I'd have to find something else I'd be able to eat...

In the beginning, this really hurt my feelings, because she is a friend for many years and spends a great deal of time with me and my family, so I guess I expected more consideration and concern. However, I started realizing that this kind of reaction is a reflection of how capable, or incapable, someone is of empathizing with others and having compassion for their needs. Some people are limited in that area, and I tried to accept her limitations and recognize she can be a good friend in other ways. This may be the case with your friend. As far as that guy who laughed? Some people are just dimwits, pure and simple.

Anyway, I've tried hard not to dwell on people who are not that supportive of what I'm going through. I feel it's an interesting, though slightly sad, insight into someone's character if a person seems unable or unwilling to put herself in my shoes and think about my feelings. I've tried to appreciate all the people who've come through for me -- from my husband and children, to my best friend, to even casual acquaintances who often display a kindness that really touches me. I also apapreciate this message board a lot.

I think a lot of this is slow going, and related to the general lack of awareness of celiac in this country. I don't know where you live, but because I live in NYC, you do tend to find more people who have dietary restrictions and many people here don't miss a beat when you tell them you need to be gluten-free (although they still need to be educated in restaurants, believe me!). So I guess I'm lucky in that regard. As far as explanations go, I, too, find it tedious sometimes and tend to just say: "I'm gluten-intolerant" (or, if they don't know what that is, I'll say I can't digest anything made with wheat, barley, rye) and leave it at that. If someone's curious, I'll go into it more...and you'd be surprised how many times in 5 months I've tripped over another person with celiac! Another clue that it's not all that rare.

I hope you have a lot of support among other family members and friends, and sounds like your boyfriend is supportive also (although naturally it's hard for people not going through to totally understand why certain things would upset you). As far as the unsympathizers go...maybe one day they will have to face a challenge in their own lives that will teach them to have more compassion for others.
Ellen
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#7 sunflower

 
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Posted 21 July 2004 - 08:36 AM

Deanna,
It’s so funny how people value a “certificate from a doctor” especially that there are so many doctors who don’t have a clue what this disease is. I was lucky to be diagnosed by a good pediatrician, and had good medical support only until I was 18. Then it was just struggling with doctors. I almost don’t go to any of them, unless I have a cold or a flu and need sick leave, and even then I have to make sure they don’t give me something that contains gluten or lactose.
I’m actually so happy I found this site, as I learned so much from it. I was so sure for years that I’m keeping the diet, and now have to reconsider about malt flavorings (years of eating malt flavored corn flakes!!!), toothpaste and so on. Only yesterday my boyfriend looked at me as if I was nuts when I told him about the toothpaste, and I suppose my mom will be laughing like hell when she hears it (she has raised 2 celiacs- me and my sister- based on the information available in 70s-80s so she thinks she knows it all, as I used to think until this week…) (BTW, how on earth do you know that toothpaste is gluten free? )

Pinkyagogo, crc0622, Pegster,
I wish I could be able to laugh at this as you do. Normally I can laugh at myself, but not at my diet. That’s funny to discover ;) I’ll have to work on that.
BTW, I loved that about the cake :) lol

Ellen,
Your friend is just the same as mine. Mine is also a good friend from college, we’ve spent a lot of time together, and apart from this issue, I like her company a lot. So I’m trying to forgive her lack of understanding, it’s only sometimes that I get mad like this.
I was angry when I was writing the post above, now I’m getting fine… Good that I found this board!
As to where I live, I don’t live in “this country” to start with :D I live in Poland, and yes, I’m a native Polish. This week was the first time ever I searched for gluten-free related message boards, and the Polish ones I found were only for mothers having gluten-free children… So I switched to English language sites and found this one. It’s a pity we don’t have one like this in Poland (or maybe I just didn’t manage to find it) – as far as I know celiac is considered something like a “children’s disease” here, which is sad, because grown up celiacs or people diagnosed celiac as adults are left to deal with it by themselves (and to deal with incompetent doctors). I’m sure we also have many undiagnosed celiacs, just like everywhere in Europe and U.S.

Thank all of you for your answers and support!

Anna
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#8 plantime

 
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Posted 21 July 2004 - 08:43 AM

Some people are unsympathetic, some are just downright cruel. We have to deal with these people all the time, so it is best to learn to just shrug them off. You will find that many more people try to understand, they just don't know what to say. That was probably the case with the guy who said it sucks and just laughed. It is quite possible he just didn't know how to react. Your friend, on the other hand, should know better. She should be a little more considerate of your feelings. I was invited to dinner at Pizza Hut with several of the ladies from church for dinner, and couldn't go. I went and had dinner with another lady at church that couldn't have the dairy. We still had a very good time. It does hurt when the people that claim to love us treat us this way. Once again, it is something that we just have to learn to deal with. I have found that humor is the best way for me, I am open to suggestions from others!
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#9 byuiemily

 
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Posted 21 July 2004 - 09:08 AM

I also have had plenty of experiences of dealing with those insensitive to my condition, however I've come across a new pet-peeve of mine: over sympathizing. I recently came across this with a guy that I was dating. When he first heard I had celiac, he was really good about just asking about it and being sensitive towards it, and I appreciated that. However as time went on, when he'd suggest something, or see something I couldn't have, he'd just go off and be like "that sucks that you can't have that!" or "I just can't believe that you have to go without that" and let it bug him for the rest of the time we were together. When i'd tell him it's okay, he would say it wasn't okay and that he felt horrible that I had to deal with having celiac. It got to the point that I couldn't handle it. I very much appreciate the intention of his actions however I wasn't able to enjoy being around him when he constantly let all the things I couldn't have bother him. Am I the only one that feels this way?
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Emily Wilkes
Diagnosed August 2002 at age 17

#10 sunflower

 
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Posted 22 July 2004 - 05:00 AM

Yes, I think over sympathizing can be just as bad as lack of any sympathy. I guess overdoing it either way is not good :)

I don't know about others, but as for me, I'd like people to be understanding about my problem, meaning that after possible initial explanations of the illness they will take a note of it and try to consider a bit before planning to eat out with you, but they won't either laugh or go repeating "Oh my God, it's so *terrible*!" 50 times a day.

As I was trying to put it down, I had a thought: "Am I not expecting a bit too much for an average human being?" I mean, for most of us the diagnosis came as a shock, so maybe the people around us also experience some kind of initial confusion, not knowing how to behave at first?
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#11 catfish

 
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Posted 22 July 2004 - 09:01 AM

That's a very good point. People like the guy you mentioned who just said "that must suck" and laughed, you know that is probably a knee-jerk reaction to something he'd never even considered before. Some people have no filter between their brains and their mouths. I have pretty thick skin and usually stuff like that doesn't bother me too much, because it isn't intended to do so. Before I learned I had the condition, I had never heard of it before. Obviously there are a lot of people out there in the same shoes I was in, so how can I expect them to deal with it any better than I would have? To tell the truth, if I weren't aware of the disease today and someone I knew told me that they couldn't eat gluten, I don't really know how I'd respond. I would probably respond by saying something like "That must really suck," although I wouldn't laugh afterwards... :huh:

My way of dealing is to explain things. My wife gets annoyed when I go out to eat and tell the waiter that I have Celiac disease, she is uncomfortable with the idea of me telling strangers that I have a disease. So I tell them I'm allergic to wheat, barley, and rye and I go over the ingredients with them in whatever I'm ordering. But with my friends, I just discuss it. When we have cake and ice cream for a birthday party, for instance, it is a subject that is bound to come up. I make sure to express not only why I can't eat it but also how it makes me feel. That way we are all on the same page and they don't feel guilty or awkward eating it in front of me while I have nothing. At the same time, they are likely to remember it better next time we get together and try to think of a restaurant to go to, etc. I guess I'm lucky because a lot of my friends have their own restrictions, be they vegetarian, religious, or just health decisions, so my own restrictions seem pretty reasonable in comparison. But if I had a friend who kept rubbing it in my face (whether intentionally or not) I think I would have a heartfelt talk with them about how much this hurts, and let them know that the next time they do it they will eat their ice cream alone because I won't stand there and listen to them saying how good it is.

Just try not to expect too much from others, because it really is difficult to understand something like this if you haven't actually lived it. I think just trying to imagine how life-altering this would be for them if they had the condition may be enough to make them balk and overreact, or to respond in an unpredictable manner because they are just bewildered by the concept. After all, let's face it, before I had to start this diet I couldn't imagine a day without bread, pasta, snack chips, cookies, etc.

As for over-sympathizing, I haven't had that problem yet. Although I can see how it would get tiresome.
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#12 bigapplekathleen

 
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Posted 22 July 2004 - 09:46 AM

Hi everyone,

It's amazing how insensitive people can be regarding Gluten Intolerance. They usually just don't get it. Frankly, I cannot imagine how they could possibly understand, since this is such a complicated disease.

Have you all read the book WHEAT-FREE, WORRY-FREE ? The author has great suggestions for dealing with people in various situations (office, business, picnic, restaurants, etc). IT has helped me a lot.

My solution regarding people I have to dine with is just to say I am "allergic" to grains like wheat and barley. If they ask a lot of questions, I try to tell them that it's not really something they want to hear about at a dinner table. If they press on, I just tell them that it causes immune system damage and is an auto-immune disease (similar to MS or diabetes). The people closest to me know that I nearly died several years ago and that I have had serious health problems because of undiagnosed celiac. But everyone else is on a need-to-know basis. I have found that if I tell people too much information, it puts them off and damages the relationship.

Kathleen
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#13 byuiemily

 
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Posted 22 July 2004 - 09:56 AM

I completely agree with what has been said. It is true that you can't expect a person to be able to react in the "perfect way", after all I don't think there is such a thing. While I do get a bit irritated with some reactions, I'm never hurt by them, because it's not something that I feel I need to be defensive about. In the specific situation I mentioned though, I think it was okay for me to get a bit annoyed and aggitated because we were spending soo much time together and you don't want your disease to be the main focus of who you are; I am not Emily the Celiac, I am so much more then that, and I think that's what made me get frustrated in that certain situation.
I too find that with most anyone I meet they are on a need-to-know basis. My new roommate who has been here for almost 2 months just found out that I have Celiac, and that's just how I like to go about things; I don't wish to draw attention to it because it's not a huge deal that I feel needs to be heavily explained to every person who shares air with me :D . I came to that conclusion when I first got up to school last summer; within 10 minutes of meeting my new roommates, my Mom sat there and explained exactly what was "wrong" with me and I was completely horrified because I hadn't even decided when or how I wanted to tell them about what I had *just a tip to parents: let your child be the one to explain their Celiac, especially if they're older; makes them feel more in control of the situation*. Well hey, I've gotten a bit off track and I have tons of homework waiting for me.
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Emily Wilkes
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#14 celiac3270

 
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Posted 22 July 2004 - 11:12 AM

On the way back, someone suggested that we go and have a dinner in a good pizza restaurant that he knew. Then I had to explain that I will not be able to eat anything there because I cannot eat anything that contains milk or gluten. Then one of the guys said: “Oh you cannot have milk or gluten? I bet that sucks!” and he started laughing!!! I was speechless. My boyfriend stood for me and told this guy to stop, and said that if they really want to go and have the pizza than the two of us are going to another restaurant, where I can choose something. We did so, but I was still upset and hurt by the reaction of that idiot. Just how can you laugh at such statement???


That's really horrible....and nasty....I've had some similar situations, but with people who don't say it to my face. Just during this summer, a friend told me that some other kids were constantly making fun of my "eating thing" when I wasn't around.....and I am sure that he's telling the truth; I could see those kids making such comments and he'd have nothing to gain from lying to me....that's so cruel of them.

Although it can be annoying when people oversympathize, at least they're trying to be nice to you. I can see where it might be annoying if someone is constantly going "oh, that's too bad....I feel so sorry for you.....that really sucks that you can't eat normal stuff....", but at least these people are on your side and are not intending on being mean-spirited or annoying. Laughing at it and making fun of it, though, are just downright mean........ :angry:
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#15 Guest_~wAvE WeT sAnD~_*

 
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Posted 22 July 2004 - 06:49 PM

Hey all,

I agree on all fronts. I am a very sensitive person who had to learn to desensitize very quickly when I went to college. Usually a with a comment like that, had I been feeling the way I felt before March, I would have carefully told the person, "It can suck, but it's all about your point of view. Either you give up when you find out you're diagnosed, or you persevere, trying to find the best tasting and healthiest food out there. I understand it's hard to imagine, but please respect my situation in the same manner I respect yours." Look at this way: Celiacs aren't a cult who think anyone who eats gluten doesn't fit in or is a monster.

I definitely agree that ignorance is the biggest culprit. When I ask restaurant employees about Gluten Free products and get confused/strange looks, I feel sorry for them, because it's their loss. Everyone knows that the customer comes first, and I know from personal experience that if an employee puts himself/herself ahead of the customer, there is ALWAYS a negative ending result. I realize some customers are a pain in the ass, but I stand firm when I say that someone who politely inquires about something like gluten deserves respect. If I were working in a restaurant now, I would go out of my way to help such a person. I would learn what foods are safe for him/her and suggest which ones taste the best. These people who have truly ill will when responding to a Celiac's questions with "Oh, that must suck" need a seriously earth-shattering wake up call. They need to put themselves in the other person's shoes. They may not completely identify with a gluten-free person, but they must understand while it may suck to not be able to stuff one's mouth at one's own leisure, the person is, in every sense of the words, still a human being with hopes, dreams, and genuine feelings, just like everyone else on planet Earth. This gut-spilling of mine right now contains all the feelings that have been bottling up inside me for a long time--sorry if this rant gets a little lengthy.

celiac3270, I can understand a little bit of what you're going through. My boyfriend's family has been going on and on about EVERYTHING about me--including my wheat allergy (I will refer to my condition as such until I get my endoscopy in August). People say I'm too confrontational--but I see things differently. I don't march up to people and scream two inches away from their face, I present the issues at hand. I demand honesty, and I believe all of you do as well. The best all of us can do is strive to be sympathic/empathetic to other's needs--and not judge before we have all the facts.

May all of you find a resolution.
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