Insensitive Family Members

[cdfiance]

We went to a family function this afternoon/evening at Alex

[CarlaB]

Ryan, the hard part about having a chronic illness is that some days we feel somewhat better, dress nicely, leave the house, and people don't have any kind of reminder that we are SICK!

They haven't been in our house on the days we can't get out of bed. They have no way of understanding just how sick we are.

Let's face it, we who are chronically ill ARE high maintenance! I know the aunt meant that she was being too scrupulous, but that is her lack of understanding of how sick Alex really was/is. It's better for you or Alex's dad to stand up to her than for Alex to do it. However, it only needs to be a "you apparently forgot that Alex was fighting for her life over this, I never remember you fighting for your life over onions." Then drop it.

Personally, if it's Alex's dad's sister, I think he should call her. I know I would. The aunt was wrong. You all are very upset about it still because Alex is still recovering. Alex's dad shouldn't have blown up, but it's been high stress for you lately, and he can tell that to his sister as well ... meaning the stress caused the blow up because her lack of compassion for Alex's delicate situation.

There's really nothing you can do about it. Family is the hardest because they think that being related means you can be rude. My own family members are nicer to strangers than they are to me (not the ones I live with, hubby and kids are GREAT). My hubby and kids are also very protective of me ... I've seen FLAMES come out of my oldest children's eyes at someone for downplaying my illness. Alex needs this protection from you and her dad just like I need it from hubby and kids. We need to use our energy to get better.

[Guest micah]

It sounds to me like the problem has more to do with these people having no respect for your family. How awful to push food on someone who has politely told you they can't have it. This is bullying and I try hard to stay away from bullies even if they are related, especially if they are related. Alex didn't "cause" any of this problem and neither did the Celiac. How rude!

So sorry she had to go through that.

Micah

[lmvrbaby]

Well I hate to say it but some families are like that. I have a few family memebers that insist that I eat what they eat. I explain many times and then if they don't understand, I try to print off a blurb of Celiac and hand it to them. Others will go out of their way to make sure there is something there for me to eat. I can't believe it when they do it. So tell Alex not to get down. Brothers will be brothers. They will learn and if she wants to she can try to educate them. Tell her to take it slow. There will be other get togethers. Even if you both have to invite family over and make food you know she can eat. It will work out eventually. Hope Alex feels better.

[SunnyDyRain]

Right after I was diagnosed my sister came in from the city she brought dessert and the bread, everything else was gluten-free prepared by me and my mom. My sister was insulted and upset that I didn't eat her bread and dessert, I explained it to her again, and she told me "you overthink things too much" It insulted me the most when she said, "You'll outgrow it!" Yeah my sister who had no idea what celiac was or heard it before, didn't understand that yes one slice of bread would hurt.... was telling me i'd out grow it.

GRRR....

It's common and frustrating... I just chalk it up to my sister being too involved in herself to deal with my problems.

[debmidge]

Ryan, the hard part about having a chronic illness is that some days we feel somewhat better, dress nicely, leave the house, and people don't have any kind of reminder that we are SICK!

They haven't been in our house on the days we can't get out of bed. They have no way of understanding just how sick we are.

Carla, This is SO true! My husband gets this treatment from his only sibling (sister) and he's very hurt by it. I understand it because I've seen him everyday, especially before diagnosis, weak, gray complexion, digestion troubles. His sister feels that "well I get upset stomach sometimes too!" She equates her issues with his. He's one step from being hospitalized (at his worst) and she says she's sick like that too "but I go to Bingo anyway! I don't sit and think about my pains like you do!" na-na-na-na-na...like a child.

Let's face it, we who are chronically ill ARE high maintenance! I know the aunt meant that she was being too scrupulous, but that is her lack of understanding of how sick Alex really was/is. It's better for you or Alex's dad to stand up to her than for Alex to do it. However, it only needs to be a "you apparently forgot that Alex was fighting for her life over this, I never remember you fighting for your life over onions." Then drop it.

Personally, if it's Alex's dad's sister, I think he should call her. I know I would. The aunt was wrong. You all are very upset about it still because Alex is still recovering. Alex's dad shouldn't have blown up, but it's been high stress for you lately, and he can tell that to his sister as well ... meaning the stress caused the blow up because her lack of compassion for Alex's delicate situation.

I think that somehow these people - like husband's sister - are sickos who are jealous of the attention and feel that if they deflate the problem, the attention is off of the person with the real health issue and back on themselves.

These people are narcissistic and at times toxic. Last weekend we were visiting their mother (who lives with the sister) and mentioned that we had to leave (we were there for a few hours already) to go home to slice the gluten-free bread I had made before we left the house. The sister's comment was "I wish that slicing bread was all that I had to worry about..." Said in a very snotty way. I felt like retorting "Yes, I wish celiac was all YOU had to worry about." Meanwhile my poor husband didn't do anything to initiate that coversation,

I work full time and suppport us - she hasn't worked in over 30 years/no children. If I can't work due to an illness we are in trouble..a catastrophe for us.

And during this weekend my husband and I were both concerned about the results of a blood test CA125 for ovarian cancer for me...she knew about the test but again, "it's all about her."

So yes, we did have things other than slicing bread to worry about; much more serious than her little brain can comprehend. It's just tough to take this b.s. from relatives, especially relatives who have witnessed the illness's destruction of the person. It's a self-centeredness that wants to take the spotlight and be the "star" of the illnesses, etc.

There's really nothing you can do about it. Family is the hardest because they think that being related means you can be rude. My own family members are nicer to strangers than they are to me (not the ones I live with, hubby and kids are GREAT). My hubby and kids are also very protective of me ... I've seen FLAMES come out of my oldest children's eyes at someone for downplaying my illness. Alex needs this protection from you and her dad just like I need it from hubby and kids. We need to use our energy to get better.

This is so true...like family feels they have the right to kick you around

[natalie]

I hate to say it but what you experienced is pretty common. Good luck, it will all work it self out.

[gdobson]

I am glad Alex's father stood up for her. When it comes down to it, as long as the ones that really matter are supportive and understand - the rest will come a lot easier.

I have caught my mother trying to give my son food. She's diabetic and thinks it's as easy as adjusting insulin or not eating something else later. Or that he's a kid and he would prefer a little tummy ache over missing out. She has no idea.

As for me, they think it's just another hair-brained passing fad I've gotten myself into.

I would love for just once, my parents to stand up and tell someone to shut their non-gluten free pie holes and either get educated or mind their business.

And in the words of Forest Gump, "That's all I've got to say about that."

[cdfiance]

Thanks for the comments. It's good to know that others have had similar experiences although I guess that is a sad fact. I'm trying not to obsess about the incident but every time I think about it I get very angry. Alex is very distraught about it and stressed to the point that it's getting to her stomach. She was up sick last night and is having trouble eating today.

I talked to Alex's dad a bit today and he's not ready to forgive and apologize. I think with time he might be ready to talk to his brother and sister in law and patch things up. He's still too irate about the situation right now -- his Irish temper as Alex says. He's just so fiercely protective over his Alexandria, especially since she's been sick.

Thanks again for the comments. It's comforting to know that we're certainly not the first to go through this. I'm just trying to keep Alex's mind of the whole ordeal for now. And you can be certain that between me, her dad and big brother, Alex will always be protected. She's got her own little posse.

Ryan

[Crystalkd]

I understand what you're going through to a degree. I was just dx 2 weeks ago and have been on the diet for 4. Before that I was really sick. We all thought I washaving mini strokes and that it was only a mattero fo time til the big one hit. I lost 16lbs. I only weighed 132! My family was supportive until they figured out what was wrong. Now they see it as my problem and are doing nothing to help me adjust but this is par for the course with them. I also have Cerebral Palsy so we've been through hell and back agian. I thought I was the only one that delt with things like this. It is comforting to know I'm not. I'm sorry for your pain and I understand.

[cdfiance]

Just wanted to post that the tension in Alex

[CarlaB]

Ryan, I'm glad to hear things are smoothed over.

[zkat]

Ryan, I am glad that it is smoothed over somewhat. I totally admire you for the support you give to Alex. My husband is the same way.

My mom didn't take it seriously at first either-she would say things like "It's just on the edges" or "You know her, she has to bring her own food" Part of it was not understanding that this is not a choice, part not realizing how serious it can be, until I started having MAJOR complications from the undiagnosed celiac-Thyroid failure, diabetes etc. Now, she lets me examine every ingredient of everything she cooks and if I don't eat something, just apologizes for not having something for me to eat. (I always bring my own food just in case)

I also think that for some of our loved ones, it is so hard to watch someone you love become so ill that they can't get out of bed or do all the things they used to, so making light of it is a way to not deal with it.

Keep supporting Alex and fighting for her. She is lucky to have you.

BTW-in the current edition of Living without Magazine, there is an article about a couple that had a completely gluten free reception.

Kat.

[Adelle]

I'm so glad Alex is feelin a little better. And she is so lucky to have ya'll to stand up for her!!

My sis and mom (the only fam I've ever had) haven't spoken to me in around 6 weeks. I'm pretty much better, but sometimes my nerve pains flare up. My sis decided I would babysit for free 3+ days/ week. She would just drop Katie off whenever. When DH stood up for me (he wasn't rude, he just wanted a schedule they'd stick too and they need a back up for when I get sick). She freaked and now I guess I'm blacklisted. I miss Katie so much, but what can I do? My (healthy) mom even called me a "whiner" for respecting that my body has limits. Ahhhh!!

Luckily my BFF and her DH totally respect us being gluten-free. They went gluten-free for a while (he has some serious health issues, they discovered gluten is fine, casin isn't) so they make gluten-free dishes occasionally, and when we babysit they stock up on gluten-free snacks for their 2yo (so we don't have gluten in our house/car etc). we're even going camping in July, totally gluten-free/CF so we can ALL eat ALL of the food.

Sometimes fam leaves, but friends stay. Life is funny that way!!

Happy b-day Alex!

[Crystalkd]

I'm glad things have evened out for you guys. I know it's rough. My family still doesn't really understand either but they are supportive in the fact that they don't get annoyed with me. Those who really understand how sick I was know that we've FINALLY found the problem and don't want to see me that ill agian. That's about all I can say for them though. It's nice to see that you have some family that is very supportive. From what I've seen on here that is rare.

[Susan-in-NC]

Families are like that. Sometimes they understand other times you wonder where in this world they came from!

I have a SIL that for years we have been making adjustments for, deseriably, she has MS and sometime just is tired and weak. Therefore not up to the large gathering. In fact, prior to Dx I often had her brother and father to our house for family gatherings. Just to relieve pressure on her to "do" the holidays.

Now, I recently was Dx. My BIL was in town (not her husband, the other brother) and we just were not up to doing the gathering. Second brother and SIL (with MS) said they would host gathering and do a cookout. We attended. They didn't even set a plate at the table for me since I couldn't eat anything on the menu (after spending an hour on the phone discussing what I was allowed to eat and not). Please note in the past I went above and beyond to make her family traditions for meals, despite a strong dislike to some of the foods (brussel sprouts and oyster dressing -- no two seperate dishes, not together that would be too gross!). Only cantalope was put out and when I took two slices of that I was informed that they had been hoping to have leftovers for breakfast.

So, families are tough! I have been in contact with one sister and let her know about my Dx, I've left messages with 2 brothers that I had medical info to share. They have not contacted me. I was Dx as of 6/11

Susan

[pmrowley]

I have found that sitting down and explaining the condition, along with all of the hard science behind it, tends to solve the issue. Fortunately for me, my Dx 28 years ago was the result of my mother's tenacity regarding my condition; I wasn't growing, and none of the doctors could figure it out, until I underwent a new biopsy procedure at UCSF medical center. Once diagnosed, my mom just laid down the law and that was that.

Gently reminding family members that Celiac is genetic, and that in the case of parents, grandparents, etc., it was THEIR combination of genetics that landed you in your current situation, just like their blue eyes are your blue eyes, makes a world of difference. Siblings should be reminded that if one kid has the condition, it is fairly likely that they all will develop the condition in their lifetime.

I also try to avoid calling myself "sick." Personally, I haven't really been "sick" because of Celiac in more than a decade, other than the very occasional accidental glutening, because I'm constantly vigilant and somewhat pushy at times, when it comes to restaurants, etc. When I explain my condition, I tell people that I have a genetically-linked autoimmune condition that renders the protein in wheat, gluten, toxic to my body. I didn't choose my diet, any more than I chose to have blue eyes. If they make light of it, or tell me that "just a little" gluten won't hurt, I ask them whether or not "just a little" cyanide won't hurt them. Tends to shut down the scoffing pretty rapidly. The key is, it's not an allergy, or some fad diet, or some kind of disorder; gluten is poisonous to me. Actually, it's poisonous to everyone, I'm just more sensitive to it due to my autoimmunological "tuning." Rather than looking for pity, I turn my condition into an empowering one. I'm fit, I'm healthy, and I have a great diet that is devoid of all of the horrible processed ingredients of which the typical American diet consists. I eat whatever I want, provided it's gluten-free: cookies, bread, pasta, cereal, waffles, stir-fry. I grill steaks at least once a week, along with loaded baked potatoes, and my cholesterol/HDL/LDL balances are incredible.

I have actually managed to turn many people on to a gluten-free diet, after they hear my full-out lecture. And without fail, every single one of those people have told me that it was the best decision they have ever made regarding their general health.

Cheers,

-Pat

[dancer4jc]

I feel your pain!!

My mom has a gluten allergy, and was dagnosed two days before traveling over 800 miles to see the in-laws. her mother in law was VERY upset about it. In fact, she sent my mother a newspaper clipping that claimed that the whole Celiac movement was a joke!! then when she came to visit, she threatened to throw out all our gluten-free cookbooks! but once my mom sat down and explained who sick she was before the new diet, and how much good it did, she backed off

[sedunk]

Greetings Ryan,

Family and friends can be difficult when it comes to food and family functions. My mother is also is diabetic. She is eats whatever she wants. She feels that food will fix everything, make you happy when you're sad and used to celebrate the happy moments. When I found I out that I had food allergies my mother responded with "A little wheat won't kill you!" Please keep in mind that my in mind that my mother and my cat were both diagnosed with diabetes in one year. You know your family has a problem with food!

I found out that I was allergic to wheat a few weeks before my birthday. I usually go the North End to begin my birthday celebrations. One of my friends had such a fit because I couldn't go!

It does suck that the people in life just don't understand!

We went to a family function this afternoon/evening at Alex

[brenda07]

I find it to be not only family members who are insensitive but my co-workers will say to me, things like "I wish I had celiac, so I couldn't eat this candy bar, then maybe I could lose some weight.' I just want to kill them. They just don't understand the struggles we go through every day. My kids are 8 an 12 and understand more about being sensitive to someones needs then they do. They watch everything I do and make sure I am eating healthy and are very careful that I do not get any cross contamination from their food. My parents I think understand what I am going through, my younger brother on the other hand who is 28 really could care less. So holidays can be tough, if only those people had to live one day in our shoes maybe then they would change their tone a little bit, I guess all we can do, is educate them as much as possible, and be heard!!

[stef-the-kicking-cuty]

"I wish I had celiac, so I couldn't eat this candy bar, then maybe I could lose some weight.'

Such people have so low self-control, that even if they would have celiac, they would find a substitute for THEIR candy bar and still trash everything in, they could find eatable and then be fat. It's not the celiac, that keeps us slim. It's the realization, that everything we eat affects our bodies. We celiacs just get more concious and have more knowledge about what we put into our mouths and what makes us fat and what doesn't. Your coworker would have the same knowledge, if he/she would sit down and read a little and with a higher self-control could loose the weight then, too. Even without celiac. That has nothing to do with celiac. That has something to do with being lazy and without selfcontrol IMO.

[Juliebove]

Tonight, my husgand blew up at my daughter and I. We went out to eat. Our meals came with biscuits and hers came with coleslaw. I asked for those to be left off. We are both allergic to milk and eggs and there is one or the other in most coleslaw. I know there is in theirs.

In the past, he has insisted that we take the bread/roll/biscuit/muffin/whatever because he will eat it. But then they either stick it on our plate where he insists it remain until he decides that he might want it. Or they will be kind enough to put it on a separate plate and then he will insist that we sit with it in front of us until he decides that he wants it. Which is usually never!

As you can imagine, that pretty much destroys the meal for us, having to sit there with something we like in front of us and knowing we can't eat it. I don't have a gluten issue. (daughter does) but most bread type products have dairy or eggs in them so I can't have them.

This time I insisted that we not get the biscuits or coleslaw at all. He was furious! Said he had paid for them and he should get them. Now I wouldn't mind if he had asked the waiter to put those things on a separate plate and bring them to him. But he didn't do that and he wouldn't sit with them in front of them.

I just fail to see why we were in the wrong to ask the waiter not to bring them. I mean... They were OUR meals! I don't tell him how to order his meal.

[blueeyedmanda]

Some people just do not understand how sick we are or how sick we can get! It is upseting though!!

[stef-the-kicking-cuty]

Yes, it is very upsetting! I believe that!!! It just sounds like he doesn't want to believe you at all and torment you on purpose in the hope you "change your mind". But you will never change your minds, because you are not allergic or celiac by choice. You are, because you have to some people really don't get it. Why not order something completely else in a restaurant, where you actually CAN eat, because it serves you an entire glutenfree meal, like Outbacks or Carrabas or PF Changs or something like that? Wouldn't that solve the issue? When he says, that's not where he WANTS to eat, then reply, well the restaurant yaddadi yaddida isn't a restaurant where we CAN (you and your daughter) eat.

[melmak5]

If one more person says "but you look great, you have lost so much weight, don't you feel lucky that you have a disease that makes you LOOSE weight?" I might actually hit someone.

I have wanted to respond: "yeah, its great to have to go to the bathroom 6-8 times a day, and feeling like someone is punching my abdomen repeatedly after I eat. Its AWESOME to know that I am eating tons but loosing weight (and hair) cause my body is damaged and malnourished. Do you want to start this "diet plan"? I can shove my fist up under your ribs and you can see what it feels like."

I usually try to tone it down a bit, but it makes me so angry that I usually turn red... to which someone says "you don't look sick, you always have color in your face."