[cdfiance]

We went to a family function this afternoon/evening at Alex’s uncle (dad’s brother) and Aunt’s house. They only invited us a few days ago and Alex explained about her Celiac Disease and said that she would bring something for herself to eat so she wouldn’t be an inconvenience.

Alex is getting over a cold and a glutening so she hasn’t been feeling well but she really wanted to go to see her cousins. While we were there, her aunt kept encouraging Alex to eat stuff like it would be no big deal. She was saying that she was “allergic” to onions and she was okay to eat a few onions so it would be no big deal for Alex to eat just a bit of wheat.

While I was out of the room, the aunt apparently insinuated that Alex was overreacting a being high maintenance. Of course Alex was very hurt by that. Alex’s dad freaked out and started yelling at the aunt that she had no idea how sick Alex has been. And then the uncle was yelling at Alex’s dad for yelling at his wife. It was all very horrible and Alex was SO upset. Alex, her dad, brother, and I ended up leaving after the big blowout.

Alex is so upset and feels responsible for the fight between her dad and his brother. I can’t believe how insensitive her aunt was. Is this par for the course with family? I don’t expect everyone to understand Celiac but if someone says eating something will make them sick, I expect other people to believe them. Alex has practically been through hell these past months and her aunt was basically treating her like she won't eat wheat because she doesn't like it. How can we make people understand how serious this is? I don't ever want Alex to feel pressured into eating gluten by people like her stupid aunt.

Ryan

[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.

[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]

CarlaB, on Jun 20 2007, 09:37 PM, said:

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.

CarlaB, on Jun 20 2007, 09:37 PM, said:

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.

CarlaB, on Jun 20 2007, 09:37 PM, said:

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’s family has been smoothed out a bit. I thought it was only fair to post some good news since most of my posts have been rather gloomy! Once Alex’s dad calmed down a bit he went to see his brother and sister in law to talk about what happened. He basically apologized for blowing up but stressed that Alex’s Celiac Disease and health in general are not to be taken lightly. He reminded them of just how sick Alex was during the worst of it (which they were already aware of) and I think the aunt felt pretty stupid for making light of it.

I don’t think things are perfect between Alex’s Dad and his brother but I think in time thing will get back to normal, which Alex feels really good about since she (erroneously) felt like she was at fault for the whole altercation. I still don’t think any of us would feel comfortable with Alex going to her uncle and aunt’s without one of us with her.

In other good news, we are planning a belated birthday party for her. Just Alex’s Dad and brother and my mom, dad, and sisters (and their fams)– only people who really understand the seriousness of Celiac and the importance of Alex’s health. Only gluten-free, diabetic friendly food of course.

Anyway, I just wanted to follow-up that things have improved and I think will continue to do so. I'm happy to be able to post something positive instead of my usual "OMG, help me" type post. Thanks for all the help.

Ryan

[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.