6 Tips to Communicate Rare Food Anaphylaxis

"Tell them you're allergic to Kool-Aid."

- Kona Lowell, in Don't Pet the Sharks: Advice, Observations & Snark from the Big Island, Hawaii

As bad as a peanut allergy.

The advice in that quote about faking an allergy to Kool-Aid is part of a list of tactics to repel door-to-door religious solicitation, in between a suggestion to light fire to their handouts and pretending to vomit pea soup. On the one hand it's a sarcastic reference to a real tragedy and on the other hand it's absurd: who in the world is allergic to Kool-Aid?

I am. 

This isn't easy to communicate. Even if you head over to the Kraft website to look up a product it hardly helps. Up there, top of the right hand column, is a prominent allergen statement. The problem is that really refers to the most common allergens that receive special protection under law. Yet it doesn't state "big 8 allergens" or even "major allergens." It just says "Allergens: None."

Which leaves me looking as absurd as the woman who sets fire to a religious tract.

As you have probably heard, 90% of serious food allergies occur to one of eight foods. But what about the rest of us? We have to read down in the fine print. Our allergens might not even get listed by name. 

So here's this additive statement mentioning natural flavors. What sort of flavors would that be in Kool-Aid?

It shouldn't be hard to guess Kool-Aid flavors. Just in case it is, here's the front of the packaging: Kool Aid Tropical Punch. I happen to be anaphylactic to both cherries and grapes. Anaphylaxis is the most severe type of allergic reaction--it's the same medical emergency that other people get to penicillin or bee stings or peanuts. So while most people view this as perfectly safe, to someone with my immune disorder it's more like Russian roulette in a sugary powder.

Of course hardly anyone realizes fruit allergies can be this dangerous unless they've gone to medical school. The author of that comedy book can be excused for not not knowing--here's wishing Kraft made its website more clear--maybe someday awareness will improve.

In the meantime we have to make ourselves heard and believed over the din of jokesters, food faddists, and allergy fakers. It's a signal-to-noise ratio problem. There isn't any cure on the horizon for Oral Allergy Syndrome anaphylaxis (or for the other less common types of food anaphylaxis) and the only way to manage it other than ambulance rides and epinephrine injections is to avoid the allergens completely.

So here are my tips for communication. To be clear, I'm not a healthcare professional--I'm a patient who has lived with OAS anaphylaxis for 29 years. That's enough time to hone a few strategies.

1. Rebranding

Everyone knows that liars say I'm allergic to XYZ. People look out for that phrasing; it raises suspicions. It also creates confusion about the severity of an allergy. For example Oral Allergy Syndrome causes mild reactions in the vast majority of patients. Only 1% to 2% of OAS cases escalate to anaphylaxis, so even when someone believes me they may think nothing worse can happen than a little itch or a rash.

So here are other ways to start the conversation:
I have a rare medical condition.
I have a rare immune disorder.

Both of these statements are true. They also start off the conversation on a better foot because they open the chance for back and forth before any of the prejudices about allergies intervene.

2. Describing
This is a tricky part because people who disbelieve food allergies often mistake us for drama mongering attention seekers. So a description of the symptoms at this early stage sometimes backfires.

Depending on the listener's vocabulary I'll say either of these:
The medical term for it is anaphylaxis.
You know what peanuts do to some people? I get the same thing, except it's [name the food].

3. Reinforcing
Return to information the listener already knows. Then supplement it.

A particularly effective phrasing has been:
You know how 8 allergens cause 90% of deadly food allergies? I'm part of that other 10%.

At this point yes I do say "allergy." The word has to come into the conversation at some point. The important thing is to lay the groundwork before introducing it so that people are prepped to recognize that this isn't the typical allergy conversation.

Often followed by:
Yeah, I have to carry an Epi-Pen. And I end up in an ambulance if things go wrong.

4. Humanizing
You may notice a pause, a double take, or a look of surprise. A lot of people are still getting used to the idea that there are 8 common food allergens rather than just peanuts. Now here we are--the other 10%--something new to worry about. This can't be welcome news.

Apologizing would be a tactical mistake. An apology could give the impression we have a choice about this, which we don't. By all means use your best manners. Yet the usual followup to I'm sorry is It won't happen again. I can't make that promise. What I can do is humanize the dilemma.

Everyone winds up unlucky in something. Be firm about your boundaries but make the best of it.

A slight grimace, a tilt of the head, and an affable tone usually goes over well:
I didn't ask for this.
That's the hand life dealt me.

5. Educating
The rare causes of anaphylaxis aren't standard curriculum outside of medical schools. So be prepared for basic questions even if you're having this conversation with a registered nurse or a graduate of a distinguished cooking school.

Advance preparation makes all the difference here because the information you need to communicate might not be in the obvious places. As you can see from the earlier example, a manufacturer website might undermine your credibility. As of this writing the leading nonprofit groups FARE and FAACT do not specify anywhere on their websites that Oral Allergy Syndrome can progress to anaphylaxis. So instead I bookmark a page at the American College of Allergy, Asthma, and Immunology and scroll down to this paragraph:

The ACAAI usually offers plain English descriptions for rare causes of anaphylaxis, such as their page for beef and pork anaphylaxis and the lone star tick. Whatever best explains your condition, know where to go before the conversation begins and make sure it's a reputable site.

Also be ready to explain the specifics of what you need to be safe. People are creatures of habit; even if they're trained in protocols for peanuts and the other common allergens it rarely sinks in that cross-contamination and trace exposures are dangerous for us too unless we tell them.

At this stage, feel free to specify the gory details if you have to. I don't steer the conversation in this direction, yet when someone still asks "Can't you just have a little?" sometimes the only remaining option is to be blunt:
What's likely to happen is I'll end up in the emergency room. The worst case scenario is I die within minutes right in front of your eyes.

At this point any normal person nods and agrees "It's not worth it." Gauge the reaction, though: a few individuals never wrap their heads around this. Be alert to the possibility of meeting someone who has to be worked around.

6. Offering
It helps to be proactive whenever possible. Providing my own food is the best way to be safe, although I've learned from experience that safe foods often need to be tightly controlled. Cross-contamination can happen in seconds. At events where foods are provided for attendees it's reasonable to contact the organizers during the planning stages and request compensation for bringing one's own food; offer a budget in advance and save the receipts. Be sure to raise this topic early! The organizers may be relieved to have one less thing to worry about when the proposal gets made in advance, but no one wants to be surprised with a request for money on the day of the event.

This is a great approach when it's feasible because it reinforces credibility and earns buy-in. In a better world I wouldn't need to differentiate myself from food allergy fakers, but the one thing the fakers don't do is put forth extra effort. Once people see that I actually make my own marmalade they know cross-contamination is a real problem. Then the times when assistance is needed they're more willing to step forward.

Proactive offers might not always work for any number of reasons. The Americans with Disabilities Act does recognize anaphylactic food allergies as a disability because it affects a major life activity. So you have rights in schools, workplaces, and public accommodations. That legal protection does not apply to parties at private homes, family gatherings, or neighborhood potlucks. Good communication helps to navigate those situations.


Finally, best wishes to you. This is my best attempt to write up the advice that I wish someone had handed me when this journey with anaphylaxis began. Here's hoping it serves you well.