6 Things Not to Say to a Family on a Medically Restrictive Diet

talkingBetween my daughter Sammi’s birth and her ninth birthday, she spent nearly all of her life on some kind of medically-restrictive diet. Whether it was being forbidden to eat grains as a baby, following an acid-free diet as a refluxing toddler, using the six-food-elimination diet to uncover the cause of her (incorrectly-diagnosed) eosinophilic esophagitis as a little girl, or choking down the unpleasant fat-free food that kept her safe from chylothorax after her cardiac surgery, we often had to define what our whole family ate by the things that Sammi had to avoid.

During all those years, I heard a number of unhelpful comments about what I fed my child, ranging from the well-meaning but insensitive to the downright offensive. If someone in your world is eating a diet that their doctor has prescribed, the following comments should never, ever come out of your mouth.

1. “Can you let her have just a little?”

This includes variations like “can she just taste it?” and “there’s only a little in that recipe” and “can she just cheat a little?” Unlike allergies, which many people these days are starting to take seriously, other food restrictions might not be a life-or-death set of rules. That, however, does not mean that it’s safe or advisable for a child to “try” a “little bit” of your tuna noodle casserole. The parent may not want to set the precedent that a small amount of something is ok, giving a child implicit license to eat those foods when they’re not nearby to monitor the amount. The child might be — as Sammi was — avoiding an item because of an elimination diet, and a small amount could affect test results in a big way.

Better: “How can I help you keep her safe here at this party/school event/family dinner?” Asked ahead of time, it takes some of the load off of the family.

2. “At least it’s not (fill-in-the-blank).”

We parents of medically mysterious children like Sammi are already quite glad that our children do not have cancer, cystic fibrosis, a fatal peanut allergy, or diabetes. Along the way, we may have sat awake waiting for test results that confirmed the lack of those kinds of diagnoses. That doesn’t mean that what we are experiencing with our children and their care isn’t difficult and, sometimes, heartbreaking. A child being denied a classmate’s birthday cupcake doesn’t cry less because her dietary restriction isn’t life-threatening.

Better: “What you’re dealing with is really hard. I’m sorry you have to manage all that.”

 

3. “I should follow your diet and see if I lose weight!”

It is horrifying to stand next to your child, who may be struggling to gain weight or even to maintain their current weight because of their diet, and hear comments like this. Variations of it I’ve heard for other diets were “If I had to go without chocolate, I’d be so thin!” and, maybe most specific to eosinophilic esophagitis, “If she doesn’t find any safe foods, at least she’ll never be fat, right?” Parents who are helping their children follow medically restrictive diets are already fighting to help their children build a healthy relationship with food. These comments are dangerous and infuriating.

Better: “Have you found any new foods that you really like? Any fun recipes to share?” That does happen when families are forced to deal with a new diet — and it’s nice to participate in some of the food-sharing we might have enjoyed in the past.

4. “So, wow, what on EARTH do you guys EAT?”

This question isn’t as offensive as the tone with which it is usually delivered. Rephrased as “we’d love to provide a safe snack for Sammi, so let us know what some good options might be,” it’s a kind gesture. Reminding parents and kids of the overwhelming nature of what they’re facing is never helpful.

Better: “What can I bring you that would be safe for your child?”

5. “I could never go without gluten/dairy/nuts/chocolate.”

First of all, this statement is untrue. Any adult, being told that they might suffer dangerous medical consequences, could and would go without the food that poses the danger. Secondly, this may give a child a sense that it is unreasonable to avoid the food they are avoiding — after all, if the adult just said he could never go without it, how should the child be able to avoid it?

Better: “I bet that’s hard. I’m sorry.”

6. “I could never handle that.”

This statement is almost certainly meant as a compliment to the parents, a way of telling them that the speaker admires their ability to manage the diet. However, it implies more agency than any family managing a situation like this ever really has. There is seldom the option to avoid “handling” it.  As parents, we all do what we must for our children. Any parent could handle that, because any parent would be forced to handle it. Different parents would handle it in different ways consistent with the way they’ve parented in the past through other issues, but all would manage, somehow. Saying that you “couldn’t” only underscores the imaginary distance between the two of you — the difference in your lives and in your resolve.

Better: “You’re doing an amazing job of managing your child’s diet. I’m impressed.”

 

Most people are well-meaning. These comments are meant to either lighten the load or to find points of connection to a world that people who don’t have to manage these kinds of things often cannot imagine — or don’t want to imagine. However, especially in the beginning, these kinds of comments are painful for the caregivers and the children involved. Try to think of both perspectives when you’re interacting with these families.

If you’re not sure about what you’re about to say, the best option is always to err on the side of helping. No parent managing a restrictive diet will find offense with a simple “how can I help?”

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4 thoughts on “6 Things Not to Say to a Family on a Medically Restrictive Diet

  1. My niece has celiac disease, and until she was diagnosed at 9, she was constantly miserable. Once she stopped eating gluten (as did the whole family), it was like night and day. All of her friends needed to learn what she could and couldn’t eat, and everyone kept bags of gluten free pretzels around for snacks. The worst one who was constantly trying to sabotage things was her grandmother. “Oh, I’ve never heard of such a thing. A little won’t hurt her.” Oh, yes it will. It was awful. We eventually just stopped eating at her house.

    • Infuriating — it sounds like eating in other people’s homes is the best decision. Celiac is no joke — we have several friends with Celiac and have seen how cross-contamination can wreak havoc, let alone eating “a little” gluten intentionally. So sorry her grandmother can’t understand that.

  2. I can imagine how these remarks can come across as insensitive when your child is on a medically-restricted diet even if they are well-meaning and I like the way you’ve included suggestions on what to say that would be more helpful. The last comment is a bit of a bugbear of mine – I know that it is supposed to be encouraging but you’re right – we handle these things because we have no choice, not because we’re extra strong or anything like that.

  3. My SIL has Celiac Disease and gets very sick if she eats even a single crumb of gluten. She’s heard all of these as well and it’s frustrating for her.

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