I’ve lived with my diagnosis of celiac disease for over a year now and it seems like just yesterday when I could eat all my favorite gluten-filled treats at will,but it also seems like a hundred years ago. There are a few time a year,usually either events or gatherings I associate with food (especially cake,etc),when I miss gluten. Usually I only miss it when it’s flaunted in front of me. (The smell of fresh bread…yummm)
I’m not the type that insists that gluten never be around me because,face it,that’s not fair at all to the other people in my life. I feel that I owe them the courtesy of not being a prima donna about things that might cause an emotional twinge but don’t really harm me. So I do have gluten around me fairly regularly.
When my relationship with food changed,it caused a ripple effect that also affected my friendships,my family relationships and my perceptions of anything dealing with food. Now,I’m not at all oblivious to the fact that my being gluten-free causes extra hassle and thought on the part of everyone. I get that,really I do. But it’s a medical necessity,not a whim. Trust me,NO ONE would be fanatically gluten-free by choice as it’s time-consuming,difficult and expensive. And isolating.
Going grocery shopping takes three times as long because I have to inspect every item every time and most items are completely off limits now. Going to meetings where food is served means I either need to make special arrangements,bring my own food or starve. Going to professional conferences is the same. Going out to eat means only eating at restaurants that can provide gluten-free options and reasonable assurances of caring about cross-contamination. Going to eat at a friend or family member’s house means either having someone willing to cook gluten-free or having to bring my own food.
I’ll be completely honest –many,if not most,people will not make any effort toward accommodation at all. All sorts of reasons are stated but,emotionally,it can hit me as a statement of “you’re not worth extra effort.”It’s really painful,actually. I have a few good friends who understand and will often go out of their way to make dishes I can eat or check out restaurants ahead of time for me. I love those friends.
When it’s anyone else,including family,I am forced to point out that I still have to be gluten-free and offer suggestions or ask how they want to handle my food restrictions. It pushes all my “don’t be a demanding guest”buttons to even say something but it’s that or starve but I have to.
Sometimes I’m faced with a gathering (centered around food,as most seem to be),the response to my inquiry ends up being “bring something you can eat and we’ll all eat what I serve”. While this does solve the issue of my not starving,it emotionally feels like being sent to the corner to eat my gruel and told not to bother anyone else. I don’t feel like a part of the group,instead I feel like I’m there on sufferance and only barely tolerated. It’s not worth the effort to try to make something I can have on this one day,even when options are pretty easy to come by.
When this happens with family,it’s especially distressing.
Last year,I was really upset by a situation like this,centered around a family gathering. I was even more upset because it seemed very hard to get my point across to even my husband. He’s supportive of me,especially since he’s seen what gluten does to me,but since it’s his family,I felt like I was putting him in the middle. There were a lot of justifications put forth,many of which may be true,for my being forced to bring my own food but that doesn’t help the emotional backlash. I did not feel welcome and it didn’t improve with being there. I watched everyone else eat the multitude of other dishes. I watched them eat dessert and sweet treats. I ate my casserole and drank some water. It felt like being on the outside looking in and I felt alone.
I swore,in the aftermath of this event,that I wouldn’t do this again. No matter how much I want to be liked. No matter how much I want to feel part of the family,it wasn’t worth it. In fact,I told several friends to remind me that I wasn’t going down this path again.
Today the prelude to this event started for this year. Complete with an invitation stating the serving of cake or cupcakes (verbotin unless made gluten-free). When I inquired into the menu and pointed out the cakes could be made with the now widely-available gluten-free mixes,I was told that what was done last year worked well. I could just bring a small main dish and dessert for myself.
Being the pleaser I often am,I accepted this until I was relating the tale to one of the friends who I’d told about last year’s event. Thank heaven for good friends –she reminded me that I swore not to do this again. She’s right. I don’t need to feel this way when I have other choices. Because I truly can feel more alone in a crowd than when I’m actually alone,I’m better off excusing myself and finding something I can do where this isolation isn’t shoved in my face.
Having strict dietary restrictions is an extremely isolating thing. Today I’m feeling very alone.