Two quick Dude Notes before I get going.
Dude Note 1: Such an awesome response so far on the Faces of Celiac Disease. Many of you have asked me where you can view the wall (that’s what I’m calling it). Well…I’ve now got hundreds of images to edit and a gallery to put together. Patience Grasshopper. My hope is to get something up by Monday.
Dude Note 2: I think I got hit with the dreaded grain a bit. How can I tell? Just see here. That’s me right now.
Anyway…on to better things.
Here’s a question for you: Is it possible to care TOO MUCH about your partner’s celiac?
I get email after email from people whose partners/spouses/parents/pets downplay celiac. But what about the other side of this?
Read this email I got last week:
I have looked all over your site to see if maybe someone has had a similar issue, but so far I haven’t found anything! First I want to thank you for being an outlet for us with Celiac – it’s awesome that you have taken it upon yourself to lend an ear and help others like you!
I found out I had Celiac about five years ago. For 3-4 of those years, I suffered from extreme anxiety and depression from the disease that eventually turned into agoraphobia. I was afraid to go anywhere in case I had to eat and didn’t have food; I was afraid to eat anywhere (which I still kind of am), and I couldn’t leave my house unless I had a few meals packed with me.
In the last year and a half, I have been able to live with less fear and my relationship with food has become quite pleasant! I love to eat again and have less of a hard time in social situations.
Moving forward to the relationship issue: my partner and I have been together for the last year so it’s not like my disease is news or anything. He seems to take it very personally though. He is always worried that he will accidentally cross contaminate when cooking for me or that he’ll take me somewhere for dinner and forget to ask the waiter the right questions, resulting in me getting sick.
He gets angry when we go out to eat because he knows that even if they say it’s gluten free, it’s probably not. I am very flattered that he cares so much about me but he is making my disease his problem when it’s not. I can’t always be accommodated and that’s okay. I make a point to never make him feel bad for getting to eat gluten but it really hurts him that he can’t take me out to a nice restaurant or have me out with him and his friends.
This causes a lot of stress in our relationship – I just don’t understand why he is taking my disease so personally? This is my reality and there is nothing to be done about it. No point arguing or getting upset either.
How do I get my partner to worry less about my disease? I’m used to living this way, it’s not a big deal anymore. I want him to focus on the things we can do rather than getting all hung up on not being able to eat out!
Thanks Dude!
I just love this email. Not only because she has overcome her fear (WE DO NOT NEED TO LIVE IN FEAR), but because she has such a healthy relationship with her disease.
But her partner’s relationship with her disease is NOT healthy. It’s great to be supportive, but there is no need for him to own this disease.
My advice to her was simple. Just forward this exact email to him. It really does say it all.
What about you folks? Any advice?
Sounds a bit controlling to me. Boyfriend sounds like one of those guys that want to own his girlfriend. If she stays with him it will get worse. He needs to develop his own issues, back off, let it go. She should be in charge of her own disease.
I would start by complimenting your boyfriend on his awareness and how kind it is of him to care so much. Maybe something like, “It means so much to me that you’re so aware of my disease, and it’s so sweet that you want to protect me from it, but things happen, and I would never blame you if something accidentally got into my food.” Guys want to be our protectors, and they hate to see us hurting. My fiancé is very aware of what I can and can’t eat, and keeps our kitchen immaculate during cooking because he is able to eat gluten and I am not. He hates seeing me sick, and if he ever thought he was the cause of me becoming ill, he would feel terrible. Sounds like your boyfriend is right there with him! Don’t be too hard on him – the alternative would be having a boyfriend who really didn’t give a crap.
This actually sounds similar to my husband. When I was diagnosed the GI specialist spoke with my husband and told him how serious this disease is and the possible consequences of not adhering to a completely gluten-free diet. He sees himself as my protector, so it was only natural for him to protect. Our entire household went gluten-free. When people came over, he would kindly ask them to wash their hands. No one is able to bring outside food in to our home. We only go out to eat at one restaurant because we know they have been extensively trained by a celiac on-staff. If we go to a family event he tells them not to worry about food for our family and that we will just bring our own. I finally broke down and told him that in his efforts to protect me he was making it very hard for me to just enjoy life and company. He had no idea that his efforts made me feel more hindered than the celiac. Open communication is key. However, if he is anything like my husband he needs to be the protector. This means that being unable to protect you at a restaurant of other place may give him a tremendous amount of anxiety. My husband won’t eat gluten even when he is away from me because he says if I have to go through it then he’s going to be right there beside me going through it as well. It’s his way of supporting me. Maybe your boyfriend is trying to navigate how to be a protector to you. If this is going to be a lasting relationship then it’s really a part of his life as well. It sounds like you have a supportive boyfriend and you just needs to be completely open and honest about your feelings. Like Dude said-show him this letter and let the conversation begin.
This was a good letter too. Show him this letter from Jess.
Emailer: “For 3-4 of those years, I suffered from extreme anxiety and depression from the disease” … But only “been together for the last year” with partner.
For someone who really loves you, it may take more than “the last year” for him to adjust having a partner with such a serious encompassing disease … It took you 3-4 years…
Best wishes on your journey together!
As the partner (of about a year) of someone with celiac, I find your comment very comforting. Thank you.
I have this issue with my mom. She carries a lot of guilt from ignoring my Gluten avoidance as a kid and forcing me to eat gluten before we knew what was wrong. She constantly berates herself for writing me off as a picky eater instead of looking for a common thread in what I wouldn’t eat. Now, when we go out together she is ‘super mom’ with the staff at places we know I can eat safely. I finally took her aside and let her know that it was my life disease and my life struggle. I welcome her support and avocation, but need her to let me handle ordering for myself since 1. I’m an adult and 2. I may have questions/concerns that she doesn’t know about and the wait staff tend to wander off after she finishes placing the order.
Being Celiac has helped me overcome my social anxiety as I am really the only one who can keep myself and my diet safe for me.
It is great that he is concerned and active in helping to keep you safe but he needs to understand that not everyone gets it and he has to have patience. It is not personal. A lot of people really do care and do their best given what they do understand. How many of us had never even heard of Celiac disease or gluten intolerance until our doctor told us that was what was making us sick?
Personally, I just want to kiss my husband a hundred times when he is the one to ask the questions, remind guests not to double dip, quietly warns me that the bowl of tomatoes is not safe anymore, and is my champion. I have a lot to deal with trying to stay healthy and am happy that he is sharing that load with me. However, getting angry doesn’t help anyone. My whole point, thank him and tell him he needs to calm down.
Caregiver burnout is real, and I’ve lost relationships because of it. That said, having someone who doesn’t care is a HUGE red flag.
As far as the cross contamination when cooking at home is concerned, there’s an easy fix. I didn’t ask my husband to do it, he just did it. If you live together: rid your house of gluten altogether. When eating out he can eat whatever he his heart desires, when at home it’s gluten free. Being gf does not mean you cannot have oreos, pasta etc anymore, it just has to be the gf version of it.
even if you live in separate places it is worth giving it a shot, or at least have a special cabinet for gluten free cooking utensils, spices etc.
I know not everyone is as lucky as I am, but man, it sure feels great to have a complete ‘safe zone’ once you get home and you know you don’t have to double-check anything for potential offenders. going gf at home with you would be a small price to pay for peace of mind.
the going out situation: yeah, still gives me some anxiety here and there. Maybe stick with a few places that you trust doing it right and never got sick after gor a while to prove that you can eat out and be totally fine.
This is what we do at my house – completely GF. This way, the pressure and constant watchfulness can be off (well, as much as possible given that the watchfulness is on full gear during the actual food shopping process… but once it is clear and in the home, there is some ease) and people can just enjoy being together and sharing meals. It was an adjustment for my family, but one that everyone was glad to make for my health and our collective stress levels. No more constantly checking if this utensil or that one had touched gluten, cutting boards, etc. No more “don’t put that there!!” to create tension. We could all share meals and focus on each other and our time together.
I mentioned this in my blog post today (close to the end, though): https://pastchristian.wordpress.com/2015/05/08/what-god-has-called-clean-the-gluten-lie-and-why-there-are-still-foods-i-will-never-eat-again/
As the soon-to-be-wife of a person with celiac, I feel her partner’s pain. When you love someone, you want to protect them, and while she has had many years to make peace with her celiac, he is still in the beginning stages. I went from relaxed (oh, don’t eat gluten, okay) to extremely anxious about my fiance’s celiac (wow, you feel that shitty? Like, all the time? Really? Even when you don’t eat gluten?….let me dig that box out of the trash for the third time to be sure it says certified gluten free). Not because I’m controlling or weird, but because I love him, and I’m still learning how to be a partner in his health. We will be a family soon, and someday we will want to have children. It’s scary, and, as you all know, it’s so much more than not eating gluten. So I say, talk openly with him. Communicate, and if you’re serious about this relationship, work towards a non-anxious partnership for your health and his sanity. My partner and I are getting there, with time. Hugs to him- it’s hard to worry about someone you love and feel like you don’t have much control.
Emily
Your soon to be wed husband with CD is very fortunate to have found you & I hope you have many years of wedded bliss together! You’ll make a great wife partner to a husband with CD. My beautiful wife of 29 yrs has supported me endlessly through my CD Dx, related cancer and many tough days for which I’m most grateful and I love her even more !
As some have stated above, open communication with each other is vital in all matters including managing the many facets of CD. There is nothing I can’t discuss with my best friend and she with me.
Best wishes,
Hap
You can care without worry.
It takes some practice to quit fussing, but it works.
My main advice echoes what folks have said above – have an open conversation about it, since the way forward is going to be a process for you two, rather than one or two simple changes.
That said, some techniques that I’ve found helpful: find ways in which he *can* do things to support you, so he has a place to channel his desire to help. Like hummingbird_86 and Jessi said above, some people really feel most able to show their love for other people through their actions, including protecting folks from harm. What he’s doing right now doesn’t work, but if there are ways that work for both of you, that’ll probably be easier for him than backing off of the issue entirely. My mom had a number of issues in getting used to this, but once she grieved for the fact that she can’t do things like bake for me any longer (cross-contamination made it too much of a headache), she’s been able to focus on being able to cook good meals and taking me out to buy fun GF cookies and treats when I visit.
I’d also recommend checking with him to see what it is that he *really* wants. His first answer may be that he wants to make the world safe for you – since you know that’s not possible, try to get him to talk about specifics. If he can have some of the moments that he feels are currently impossible, it might help lessen the desire to make the entire world safe. Maybe you can find a nice restaurant that’s a little ways away, but that has impeccable reviews within the Celiac community, or set up a super-nice candlelit dinner at home. Maybe hosting a party where you know you’ve got a robust supply of safe food would help him feel like he’s getting to socialize with you and his friends all together.
Good luck!