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Living with Food Allergies

14 Jan

I really struggle sometimes with the attitudes of parents to children with allergies, how they talk about allergies, and how they fundamentally misunderstand what it is to live an allergic life. I see this attitude of experience and understanding right alongside huge missteps and pretty offensive behavior. Unless you’ve lived it yourself, you probably don’t understand what it’s like.

To never be able to pick something off a sample tray and just pop it in your mouth.

To spend every party and every event on guard.

To go to a restaurant and play twenty questions about the menu, only at the end to have the sinking feeling that your server doesn’t actually care enough to give you a real answer.

To be excluded from every school pizza party, every slumber party pizza dinner, every “surprise! We bought lunch for everyone!”

To be at a new job, trying to make a good impression on coworkers, only to politely decline a tray of home baked goods and have to fend off diet shaming because “Oh, honey, you’re so thin, you don’t need to watch your weight!” And then suddenly, it’s a defense of allergies and all the searingly personal questions that follow. “How long have you been allergic?” “What’s your reaction?”  “Have you tried Lactaid?” “My friend’s cousin’s brother’s ex-wife used to be allergic to milk, but she outgrew it and now she’s just fine. Have you considered that?”

To be six years old and know you have to be careful, surrounded by tiny little six year old monsters desperate to find any sign of weakness, and have your difference outed publically.

To be chased around the cafeteria with a carton of milk, only to be yelled at by the grown ups for yelling, because secretly, they too think you’re a freak, making it all up, and deserve it.

To spend your entire life knowing that you’ll never be normal. That this tiny little difference which should be oh so insignificant means the world to everyone around you. That you are utterly and forever apart from the world three times a day plus snacks, on social occasions and big celebrations, in every day life, at every moment of every day you are different and not One Of Us.

To watch on organized trips or at summer camp when vegetarians, who eat differently by choice, are given separate meals and different options, but being told with an allergy to make do with just salad or a pbj.

To stare at your own child, covered in hives after eating, and experience this gut wrenching terror that she’ll be doomed to the same childhood of terror and shame and ostracizing, and to put on a good face so as not to scare her or your partner.

To feed your baby something you’ve spent your whole life thinking of as poison, in the interest of “testing” and appeasing societal pressure to make her as normal as possible. And when she has no reaction, to feel guilty when you realize a part of you hoped she would be like you, and you wouldn’t feel so alone.

To bow and scrape and plead with thankfulness when someone deigns to make an exception, to order you a special meal at an event, who actually remembered that you exist. To be utterly grateful at the meager scraps they throw you. And to burst into tears when someone actually goes above and beyond, and to have those memories indelibly etched forever on your conscious.

Like the time we attended a murder mystery weekend, and after a twenty minute conversation with the head chef on Friday night, the following lunch, I was presented with the most beautiful plate of vegan risotto I have ever seen. A veritable mountain of it, and so delicious my companions told me it was better than anything out on the regular buffet.

Like the caterer for my wedding who said it would be no problem at all to make the entire event dairy free in such a way the guests would never even notice.

Like being 25 years old, out of town for my brother-in-law’s wedding, and they took us to a vegan restaurant, where I tasted something as mundane as a Boston cream pie for the first time in my life.

Walking into a new restaurant and telling them I have a dairy allergy, and then bursting into tears in front of the poor server when she presented me with a separate dairy menu, listing everything that was safe for me to eat.

To be nearly thirty years old before feeling like it doesn’t matter how other people define my food.

On the next generation

1 May

My daughter is about a year and a half old, now. We’ve never introduced her to dairy. There just never seemed to be a need; after all, I do just fine without it. She’s never been exposed through breast milk, obviously. When she hit a year old and the pediatrician gave us the okay to introduce other potential allergens, we had a conversation about dairy. Our pediatrician is amazing and has much the same opinion of dairy that I do, so when I asked her when she thought we should try introducing dairy, she said, “Never.” (I love that woman)

A week ago she informed me “teeth coming”, so I think she’s teething again. This also means we’re back to the everything in the mouth stage, which is… exhausting. Last Saturday, we were out at this big Science Expo thing (it was awesome). She was all over the floor, so there’s really no telling what she got into all day. She napped through lunch (in the middle of a They Might Be Giants concert, no less), so her beans and rice sat out unrefrigerated for an extra hour or so. On our way home, we stopped at a restaurant for dinner (because after being out of the house and walking All Day Long, I was really not interested in cooking).

All of which is to say, I have no fricken’ clue what may have made it into her mouth.

Bed time was rough, as it quite often is. But there was something different about it. For one, she was screaming, which is unusual. Occasional bouts of crying, sure, but not extended crying or screaming like this. We suddenly noticed her diaper smelled awful, so Ben checked it. You have to understand, this was probably only the second time in her life she had a… (how to phrase it delicately, since this is after all, a food blog) …messy rather than wet diaper after bed time. After she was cleaned up, I held her and took her over to sit in the chair to nurse again. There was just something about the way she was moving, the way she arched her back and groaned… I asked her if her tummy hurt, and for the first time since bedtime began, she responded, echoing “tummy hurt”. And I just Knew. I knew what she was feeling, what she was going through. I don’t know why, or what triggered it, but I knew this whole set of symptoms as being exactly what I go through after a dairy exposure. The agonizing stomach cramps, the gas and bloating, the way too soon and extremely unpleasant diarrhea. I remember describing my symptoms to a doctor and telling her that they always occur 30 minutes after eating. I remember her telling me that it just isn’t possible for it to go through the system that quickly, and that I couldn’t be right. I remember both allergists I went to telling me it’s not a “true” allergy because I don’t respond to the Ig-whatever they test for, as opposed to one of the other two alphabet soups. I remember the scratch test, where I spent an agonizing fifteen minutes in the waiting room with my dad holding my arms still so I didn’t claw off my own skin, and then being told I had “no reaction”.

I just held my little girl, and rocked her, and rubbed her back until she finally fell asleep. And I went downstairs and I cried.

The Importance of Being Normal

25 Jul

Ben came home from the summer camp he’s teaching with a story about one of the girls in his camp. She’s allergic to dairy, eggs, and peanuts, and has to eat separately from the rest of the kids in the camp in a “peanut-free zone”. I can’t even begin to imagine how hard that is — at least with my allergy, I could sit next to kids eating things that would’ve harmed me. Food, in our society (and from what I can tell, most societies), is a social thing as well as something for nourishment. When we get together with people, we talk about meeting up for lunch or dinner, or grab a cup of coffee. For kids in public school systems or very busy summer camps, lunch time might be the only unstructured social time they get with their classmates. And that means that for those of us with allergies, it’s not just eating that’s harder, it’s socializing.

I do a lot of contract work, which means I eat a lot of first meals with coworkers. The allergy comes up in conversation. A LOT. I don’t mean to be one of those people who’s always talking about my digestive tract, but when someone suggests we go out for pizza, they keep pushing for answers when I say I’m not up for joining them there. Or the number of times I’ve been offered cake or cookies, and when I politely decline, I get asked, “What, are you on some sort of a diet?” Yes, I’m on the thinner side of the spectrum (a result, I would wager, more to do with a diet low in saturated fat, rather than due to a genetic predisposition or all that exercise I avoid), so when these middle-aged women scowl at me with their slowing metabolisms, criticizing me for a diet they think I’m on and don’t need, a lot of the time I will speak up and tell them it’s because of an allergy (although, more and more lately I stay silent). When we go to restaurants, I’m used to playing twenty questions with the waiters just to find out what I can safely order.

I deal with a lot of that crap when outside the house, but now that I’m an adult, I can declare our house a Dairy-Free Zone. Okay, so it’s not a hard and fast rule, and Ben will occasionally bring something home that’s his to eat, like a tub of yogurt from the cows I nearly went to college with or leftovers from a restaurant. But for the most part, he’s voluntarily restricted his own dairy consumption, which means very little in our house. Come to think of it, we lost most of the contents of our fridge from the power outage, and I don’t think any dairy has entered the house since.

As a kid, it was a lot harder. At home, my parents kept dairy products for themselves (why shouldn’t they? As adults, we have the privilege of choosing our own food). At school, I ate my packed lunches because I could never have anything from the school cafeteria. And in elementary school, the lunch time teasing was pretty bad. I remember being chased around the lunch room with cartons of milk, having drops of milk flicked at my bare skin, string cheese wiggled in my face. Kids are really cruel about things they don’t understand, and in big settings like a school cafeteria, it’s really hard for the five adults present to keep an eye on three hundred socializing kids (had they even understood what was going on, and at that point, I’m not so certain they did).

So when Ben told me about the seven year old girl with the food allergies, who had one classmate who could sit with her because of the peanut allergy, but then shook a pudding container in her face and wiped cheese on her leg? I cried, and I don’t think it’s just the hormones this time.

I thought back to seven-year-old me and what I so desperately needed to hear.

Being a kid with allergies is so hard. All the grown-ups think they’re helping by giving you special cheese and a special plate of things you can eat. And yeah, sometimes that stuff is exciting, like when you go to a vegan restaurant and you can order anything on the menu. But special is only special when it’s, well, special. It’s only exciting when it’s different, when you can spend most of your time being normal. I can’t even count the number of times I cried myself to sleep because I just wanted a stupid ice cream cone like everyone else. Or the times I made myself sick because “well, a little bit will be okay”.

But you know what? What I eat now is normal. In our house, our normal “butter” is Earth Balance. When I say “please pass the milk”, it’s usually soy (although sometimes coconut or almond). And if I want, I can have ice cream for dessert, because we bought some at the store and it’s okay. I can open our refrigerator and eat anything I want to. And it’s No. Big. Deal.

And those decadent dairy-free desserts I make for myself? Most of the people I share them with can have dairy no problem, and don’t even care that what I made is cow-free. At Thanksgiving, my dairy-free pumpkin pie is regularly topped with whipped cow-cream. The raves I got for my dairy-free pumpkin cheesecake! And you know what else? Our wedding meal was totally dairy-free. And most people never even knew.

So hang in there, kiddo. It’s hard now, I know. But when you’re done with school and living on your own, you get to plan your own meals. And then whatever you choose to make is normal.