This article originally appeared in the Autumn 2003 edition of Celiac.com's Journal of Gluten-Sensitivity.
No matter what your reason for your dietary restriction, one of the hardest things about this diet is talking to people about why you must be gluten-free, and trying to explain the diet itself. Responses range from complete understanding (sorry, this is extremely rare), to people who think they understand but don’t (“Oh, this is just like when I gave up liver for Lent!”), to those who don’t care an iota about your diet, to the other 95 percent of the population who really want to understand, but just don’t get it.
There is an art to talking to people about your condition and the diet, but first there are a few basic ground rules you should know and follow.
Attitudes Are Contagious
When you’re talking with other people about your diet, especially close family members who will be “in this” with you for the rest of your life and who may also someday learn they must go gluten-free, remember that attitudes are contagious. If you give the impression that this diagnosis has ruined your life, and that the diet is worse than astronaut food, others will feel that way, too.
First, these things aren’t true, even if it seems that way at first. Second, you don’t want your husband, wife, or kids to feel this way, especially if they’re the ones on the diet. Be careful what you say. Even when they appear to be tuned out, kids and spouses hear what you’re saying. Feelings can be hurt, and lasting impressions can be made. Portray a positive attitude about the diet if you can; you may even find it rubs off on yourself.
Everyone’s a Doctor
Before you begin talking to people about your medical condition, you should know that nearly everyone, regardless of education (or lack thereof), is a doctor. Especially when it comes to gastrointestinal distress, a subject that nearly everyone on the planet is at least vaguely familiar with.
Once you get past the squeamish introduction, you’re likely to be cut off by people who want to tell you what you have. “It’s lactose intolerance,” your best friend assures you. “No, I think you have all the warning signs of colon cancer,” argues Doctor Dad. “You just need acupuncture in your butt,” advises your eight-year-old wanna-be doctor son who just learned the word (acupuncture, not butt).
You may have trouble getting everyone to stop with the advice and listen, but try to get through your dissertation. Then you can look forward to one of several responses (percentages are based on personal experience, not scientific findings):
- Complete understanding (0.1%): These people will listen intently as you discuss villi, bowel movements, gluten, and modified food starch, barely moving a muscle as they hang on your every word, taking careful notes so as not to poison you at your next get-together. These saints have also been known to hang flyers in their kitchens, listing safe and forbidden foods in case you drop by for an unexpected visit. Worship the ground these people walk on, because they’re few and far between.
- Pseudo-understanding (they think they get it but they don’t) (0.9%): These people are easily identifiable, because they nod much too quickly when you explain the situation to them. Staccato-type nodding of the head is usually accompanied by rapid-fire successive affirmative phrases such as, “Uh-huh, sure, mm-hmm, yep, gotcha, sure, yep, of course, mm-hmm.” Don’t burst their bubble; these people are used to knowing everything, and usually can’t be told otherwise. I recommend that you bring your own food to get-togethers with these people.
- Absolute and unveiled lack of interest and concern (4.0%): Gotta hand it to ’em, these folks are honest. Don’t try to push a rope.
- Desire is there, but they just don’t get it (95.0%): These people mean well, but either don’t have the ability or don’t want to take the time to understand. Don’t be annoyed, offended, or otherwise put off. Their attitude can’t change the fact that you feel a lot better now that you’ve eliminated wheat or gluten, and that’s what really counts. Don’t disown them (especially because most of your friends and family will fall into this category), and don’t berate them, either. Your diet isn’t their concern, even if you think they should care more than they appear to.
Obviously, dealing with this last (and vast) category is difficult. Already you’re saddled with the extra responsibilities and challenges inherent to the diet, and it may not sit well with you that some of the people closest to you are those who put forth the least effort to understand. We expect family and friends to support us, show concern, offer assistance, and make things that are important to us important to them, yet often it is exactly those people who disappoint us the most.
In this situation, we have the additional challenge of dealing with the fact that we’re around them frequently, and food is often a part of social situations. Trusting them to provide foods that are safe, or worse yet, dealing with the anger and resentment when they don’t even bother, can test the most solid of relationships.
If they just don’t get it because they’re simply not capable, forgive them and move on. Some people are set in their ways, and others are intellectually incapable of grasping the intricacies of the diet. Be aware and be prepared with your own foods when getting together.
When loved ones are capable but just don’t want to bother taking the time to learn about the diet and your condition, you may experience feelings of hostility and resentment. It’s okay to be mad, but don’t wallow in the anger; it serves no purpose, and will provide you no benefit, because they’re not going to change, and you can’t force them to want to care.
It’s important to avoid falling into the role of the victim. You may have some serious medical conditions, and you could be getting some sort of reinforcement from feeling victimized, both by the condition and the people around you. It gets you nowhere, except into a rut of negativity.
People who just don’t get it aren’t going to suddenly show interest in you, your condition, and the diet. Just as they don’t have to cater to your diet, you don’t need to cater to their insensitivity and thoughtlessness. Forgive them for their lack of sensitivity, their narcissism, and their indifference (but unless you want to start a family feud, do it in your heart rather than out loud), and move on. They may be sensitive, generous, caring people in many ways, or maybe they’re not. In either case, you can’t force them to care or learn about your condition or diet, and as frustrating as it can be, your only choice is to accept that fact. Don’t allow yourself to get mired in the negativity that their apathy can create, and don’t lower yourself to their level either by caring less about their situations.
Need-to-Know Rating Criteria
HIGH: Will these people prepare food for me? If so, it’s important for them to understand which foods and ingredients are safe and which are forbidden. If you can narrow it down for them, do so. For instance, don’t go to a restaurant and ask them what they have that’s wheat or gluten-free and expect to get a good answer. Instead, peruse the menu, and figure out what looks as though it is safe, or could be made wheat or gluten-free. Then you can get into the intricacies of cooking procedures, contamination issues, and ingredients.
Sometimes it’s easiest to explain your condition in terms of an allergy, even if your condition is celiac disease (which is not an allergy). People understand, for instance, that peanut allergies can be severe, and even a little peanut can cause some people to have a serious reaction. Sometimes it’s necessary to explain that you have a “severe toxic reaction” to wheat or gluten before people will take your condition seriously. Otherwise, they may think that it’s okay just to pluck the croutons off the salad after the fact.
MEDIUM: Are they asking out of curiosity or nosiness? Most people who ask about your diet do so out of genuine curiosity rather than abject obnoxiousness. Maybe they have dietary restrictions of their own, and wonder if yours are the same as theirs. Maybe they’re nutritionists, or maybe they’re just genuinely curious. In any case, don’t be offended, but don’t feel as though you have to give a dissertation on the advantages of a wheat or gluten-free diet either. Offer as much information as you’re comfortable giving, and as much as it looks like they’re truly interested in hearing.
A good response is usually generic at first, adding information as the listeners seem to want it. “I have a condition that makes me unable to tolerate gluten, so I eat a gluten-free diet” is usually a good start. If they want to know more, they’ll ask.
LOW: Do they warrant a response? When the 16-year-old kid wearing a paper cap and taking your order at the drive-up window asks with a strong Valley Girl accent, “Like, what’s wrong with the bun, dude? How come you ordered, like, all your burgers without, like, the bun?” your best response is to bite your tongue. No response is needed, unless you can muster a good, “Like, what-EVER, dude, I like ’em that way.”