WW: Living with Food Allergies — Identity

Photo from the DC Comics website
Yes, this is how I see myself sometimes. Photo from dccomics.com

“You are what you eat.”

Right. So what are you when you can’t eat half the foods that you used to love? Or any of the family recipes you grew up with? Or your favorite dish of your best friends, or the perfect brownie recipe you spent two years perfecting?

What are you? Lost and frustrated. And others — your friends and family — are lost with you.

Our food culture today is a bizarre landscape that includes mega-star cooks, entire networks dedicated watching people cook food you will never make, “food deserts,” corporate organics, farmers’ markets, some shady corporate political maneuvering, and an entire populace generally both obsessed with and confused by food.

This article has nothing to do with food allergies; it’s about making small changes to your diet to eliminate “non-real” food additives. I think this is the kind of article that expresses our collective cultural confusion about food. A diagnosis of food allergy or intolerance means you start reading all labels and learning things you maybe wish you did not need to know about how our food is produced. While I’m all in favor of people figuring out what makes them healthy or well, the seemingly random declaration of some foods as “real” and morally superior or “good” and others “fake” and “bad” doesn’t seem to serve a greater purpose, but it does start to explain the comments that those of us who “insist” upon bringing our own food to social events hear so often —

  • “Oh, you’re so good to eat that way!”
  • “You’re so healthy!”
  • “That must be how you stay so skinny!” or “You must be losing so much weight on that diet.”
  • “I’m so bad for eating this cookie!”

As we talked about last week, it’s a different health-based reason than most people think, but allergies often seem to get lumped with diet choices and food fads, undermining their seriousness and the toll they can take on your life. A food allergy diet is not a choice. It’s not a moral statement. It’s food that doesn’t kill you.

I read a maybe more pertinent essay last year that really got into food and what it means to us, individually and as a culture. This open letter to Paula Deen from culinary historian Michael W. Twitty is really worth reading, as I’ve been thinking about it since last summer. Part of what Twitty was saying is that the conversation around food has been somewhat divorced from both its history and meaning. At its base, food is energy. We consume so that we continue; it is fuel for our bodies. But food is a much larger social construct. Food is identity, it is connection, it is love. What we eat defines us, not in the childhood mantra of “you are what you eat,” but in our connections to the world.

Culinary traditions bind families and communities together, even through migrations as Twitty describes in the large mid-20th century movement of African-American communities from the rural south to the urban north. Think about your family’s traditions. Was there a special food for birthdays, or celebrations? A Sunday meal? A holiday treat? I think I could tell the story of my life through foods, from Cookie Monster birthday cakes, that one cookie recipe my grandmother made, through my mother’s stir-fry phase, through the successes and failures in the harvest gold kitchen of my first apartment, and through that absolutely magical brownie recipe.

This is one of the very reasons that adult-onset food allergies are so difficult. When the foods that define your family and traditions are now forbidden to you — when going to a family gathering means enduring the many queries about why you are no longer participating in the sharing of history-laden sustenance, or why you brought your own food, or explaining again that, no, you cannot “just have a bite” of that — you have to work around to finding that identity again. All of the old comforts are gone, and seeking the new, while potentially exciting, is rarely comforting.

When my forbidden foods list extended just to dairy, I found that food traditions other than Midwestern American — or anything North American — were easier and therefore worth exploring. Dairy is rarely used in traditional (even “Americanized traditional”) Asian cuisines. Chinese was safe, sushi was awesome, and even Indian was navigable. Vegan cookbooks taught me to bake without dairy and without eggs, as well as how to focus on vegetables and really use the depths of my spice cabinet.

As the list of forbidden foods has expanded, the ease of eating out has decreased. I didn’t realize for the first year or so how much I had let fear of getting sick circumscribe my life. Giving up control of my plate meant the potential for getting sick — not likely anaphylaxis (or not so far), but every time I get sick I have to re-face and re-conquer the fear of eating out after I’ve gotten back to being well. I was turning down social opportunities, packing my own food, afraid of the consequences. And I was missing out, not necessarily on opportunities to get sick, but on opportunities to socialize, make and build connections, and to learn how to be a good advocate for myself in restaurants. Not that the latter always works, but it is a skill that you need to learn and practice.

The other skill is learning to balance — my need to find and take advantage of safe social situations, my ability to create food-free or not food-centered social opportunities, and my own health. The trials of learning this balance are now part of who I am, as are my food allergies, and this outlet Denise and I created online. One of the reasons we started this blog was that we both needed a positive outlet for the frustration of needing to recreate the entirety of our foodscapes. The blog — well, our editorial calendar, which changes, but gives us structure — helps keep us focused on working out recipes for foods we want to eat again. Sharing them out via the internet, and the feedback we get from our readers encourages us to keep working on new things rather than getting stuck in our own ruts.

Beyond the food, the many conversations we have about our own frustrations and triumphs and failures has lead to this series of essays as we’re starting to feel more like the food allergy online world is a community that we want to participate in beyond our recipes. We’re glad you’re here, and thanks for reading.

    1. Although we usually do this in two parts, Mary Kate had such a complete piece written that it seemed dumb to tack on a weird little paragraph for me at the end of it. So we decided that it’d be best for me to comment on her piece. I’m on board with everything Mary Kate has written.

      The only thing I would add is, food allergies can change how you view yourself. Before the apocalypse, I was adventurous and always wanted to try every new cuisine or food there was (except mushrooms, because I hate them, all of them), and every new restaurant and little gourmet food market. I was never a picky eater and I’d eat pretty much anything, to the point that if a waitperson brought me the wrong meal and I liked it, I’d probably eat it, rather than wait longer for the correct meal. I was free-spirited about food, but I also felt like being adventurous/open to the cool, new and different and being a foodie was part of who I was. I could never understand the people who wouldn’t try something new. How would they discover the next really yummy thing to enjoy and savor? What was the worst that could happen?–they wouldn’t like it and wouldn’t order it again. How could they stand the awful sameness of eating the same thing, over and over again? Before the apocalypse, friends who were picky, without a medical reason to be so, grated on me–think the restaurant scene in “When Harry Met Sally.” I never wanted to be that person, but now I have to be. I never wanted to be the person who is afraid to try something new, but now I am, not because I might not like it, but because I might be allergic to it. I mean, given going from three to thirteen food allergies in the last few years, with another possible suspect in the last two weeks, that’s not outside the realm of possibility.

      Dealing with your food allergies changes your perception of who you are. There’s an adjustment period where you have to reconcile your new reality with your perception of yourself, and it seems so strange that your relationship with food can change your picture of who you are, but it does.

      1. Denise, I agree with this a lot, though actually I myself was a slightly annoying restaurant orderer before going gluten-free (I did things like ask for dressings on the side, and sometimes I would take a long time to make a decision because I’d suffer from choice paralysis). However, I was still an adventurous eater and happy to sample most things most of the time, which has changed dramatically since my celiac diagnosis.

        One reason I like going to things like gluten-free expos is that I can sample at will! Even though I’d never have thought to go to something like that in the first place before going gluten-free, and it’s obviously not an everyday thing to be sampling soo many different foods at once, it feels nice to pretend I’m a “normal” person who can try things. (Though, actually, at my last expo I realized you still need to be careful because some products might not be manufactured in the way you’d wish. That might change with the advent of gluten-free labeling laws, who knows.)

        1. We’re planning on attending an expo in Springfield, MA in the fall, but with the corn thing, it’s unlikely I’ll be able to try much, although it’ll be fun to watch Mary Kate try stuff. But I’m looking forward to getting more ideas for foods I might be able to DIY/reverse engineer 🙂 I’ve noticed that besides trying to just come up with all my old favorites, I’m also starting to get more adventurous about food I make, so I might be channeling that tendency into cooking now. I’m currently fermenting some preserved lemons and some sauerkraut with chilis in it, haha.

    2. Promised and delivered, Mary Kate! I really enjoyed this, and also clicked through to the articles you referenced. Your point about the Slate piece on “harmful processed foods” makes me think of a few instances when I’ve inquired at restaurants or asked manufacturers about gluten content/possible cross contamination and their kneejerk reaction is to spout off all of the OTHER things their establishment/product is free from (I especially often hear “yes, we’re gluten-free; we’re also GMO-free”).

      Honestly, this worries me a little because I have one specific issue I’m wondering about, which is a serious issue and requires careful attention, and I don’t want to hear the marketing babble about how amazingly pure their such-and-such is, especially because I personally am not anti-GMO for health reasons; if anything I’m wary of them for the social and economic issues that companies like Monsanto are using them to perpetuate, but that still isn’t enough—to me—to condemn the entire practice of genetic modification. (By the way, this was an interesting Scientific American article on the use of GMO in the American chestnut tree to combat a widespread fungal infection of them caused by the introduction of a foreign species. But I seriously digress.)

      My point is, sometimes I think that, to others, having one or more allergy/intolerance makes you into this strange person making odd demands, and they’re not quite sure how to placate you. This obviously isn’t a great feeling self-image-wise and also isn’t great socially. But it’s of course overcomeable by getting the folks around you used to what you need, so that you don’t just seem like some crazy picky eater; in that sense, it’s very important to keep putting yourself out there, keep eating with friends when possible, etc. Though I don’t blame anyone for curtailing that kind of activity at the beginning—I did, too, and I still have a social life and think it gave me time to get my “sea legs” on.

      1. Thanks, Molly! And I agree — equating all the different new buzzworthy food fads with my actual medical dietary need is, well, problematic in terms of showing me that you understand what I’m asking you. In no way does “GMO-free” equal “gluten-free.” One is solely about sourcing. The other involves food handling.

        We have discussed GMOs, and would like to discuss them on the blog, but neither of us feel ready just yet to address the issues and concerns that we have in a way that we find productive, so we’ve pushed it out a bit. But it is on the radar, I promise. Thanks for the article.

        And yes, I don’t want to be placated. I want you to tell me, honestly, if you can accommodate me, and if you can’t, okay. That was my favorite thing about going to Blue Ginger last year — Denise and I could both list off our entire roll of allergies and not freak out the wait staff or kitchen staff. It was a very freeing experience.

    3. Hi Mary Kate and Denise! I just found your blog through freedible and I was wondering if you’d consider sharing this article on freedible as well. I know many with adult onset allergies in our community and it’s so vastly different than children with food allergies, yet not very much is written on it. Food traditions are such a huge part of life, I can’t imagine how difficult and frustrating it must be to have to start from scratch. I hope that you will share this with the freedible community, as I’m sure many are going through the very same thing. All the best! -Rebecca

      1. Hi Rebecca! Do you know of anyway to simply import the posts in? We’ve looked at adding things, but honestly, I don’t want to have to recreate the whole posts in Freedible. Any advice?

        1. Great question! I don’t know of a way to import posts now, but I’ll ask Cheryl and get back to you. That would be a fantastic feature to have on freedible! Thank you for the suggestion! And thank you for sharing this post there! I’ll let you know what I find out!

          1. Hi Rebecca! After I responded, I decided to ask Cheryl, and she said it’s a no go for right now, but she’ll put it on the list to do in the future at some point. Thanks for the nudge 🙂

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