Her refusal to be silent about her son’s autism led her to create a 'Hero Squad' for action

Emetophobia (also called specific phobia of vomiting, or SPOV) is a pathological fear of throwing up. In scientific literature, it is often referred to as an "understudied" or "underresearched" disorder, but there is a growing consensus that it is surprisingly common. One study found that up to 3% of men and 7% of women are affected by it. No one loves throwing up, of course, but when it becomes an actual phobia it can be incredibly debilitating.

For our daughter and other emetophobes, throwing up is the most terrifying thing that could happen to them. My daughter has said if she were given the choice between throwing up and dying, she's not sure which she'd choose. Totally irrational, but that's what makes it a disorder. Sometimes emetophobia is a PTSD response to a traumatic vomiting episode, but often—as in our daughter's case—there's no clear cause. But the why is less important than the what and the how to treat it.

People with emetophobia are basically afraid of their own bodies. Many phobias are situational—people don't generally freak out about heights or spiders or small spaces unless they're in or around those situations—but a person can't avoid or escape their own body. There are no breaks, no periods of relief from the fear. And the biggest triggers for emetophobia—food and other people—are also unavoidable, which makes it a particularly challenging disorder.

We all know that anything we eat has the possibility of giving us food poisoning—we know it's rare, so we take reasonable precautions and don't worry about it. Emetophobes do worry about it. All the time. They check expiration dates obsessively. They ask for reassurance that food is safe to eat. (I can't count how many times our daughter has asked us to smell or taste something that is not the least bit old.) Obviously, they can't not eat, but they often start limiting their diets to things they deem "safe."

Additionally, in an emetophobe's brain, pretty much every normal stomach sensation—hunger, digestion, gas—gets interpreted as nausea. And if they think they're nauseous, they won't eat. Such disordered eating can easily be misdiagnosed as anorexia nervosa, though it's a totally different illness.

People are another big trigger. Any person we interact with could have a stomach bug and not know it yet, which they could pass along to us. Again, we all know this, but we understand the chance is small, so we don't worry about it. Emetophobes do worry about it, incessantly, to the point of avoiding people and places where people will be, which is basically everywhere except their own personal living space. Hence the spiral into reclusiveness, which can easily be mistaken for agoraphobia.

The compulsive food checking, the frequent hand washing and the avoidance of certain things that go along with emetophobia also look a lot like OCD. (And indeed, as my daughter's therapist explained, emetophobia is a form of obsession.) All of these things make diagnosis tricky, especially since emetophobes won't usually walk into a therapist's office and say, "Hey, I'm deathly afraid of throwing up." They often avoid all words related to vomit and won't talk about it, so they speak in vague terms about their fear, which can lead to an initial diagnosis of generalized anxiety.

Getting the correct diagnosis is vital, however, to getting the right kind of treatment.

Before we found a therapist who knew how to treat emetophobia, we utilized a website called emetophobiahelp.org. It's run by therapist Anna Christie, who suffered from emetophobia herself, and it's an excellent starting place for self-help.

One of the first things the website suggested was to have my daughter look at this:

V * * * *

Not the word "vomit," just the first letter with the rest of the letters as stars. That's how avoidant many emetophobes are about anything involving the idea of throwing up. We added one letter at a time—just looking at them, not even saying the word—until she worked up to reading the whole word, then saying it out loud until she could do it with minimal discomfort, then saying synonyms—puke, barf, upchuck, and so on. The day my daughter could say "vomit" and "puke" without hesitation was a huge milestone.

Incremental exposure like that, eventually leading up to watching videos of people vomiting and pretending to throw up yourself, is one part of treatment. (Successful treatment doesn't require actually throwing up, by the way. Nor is vomiting a cure for the phobia. It's common for people to think, "Oh, if they just throw up and see it's not that bad, then they'll get over it," but that's not how it works. Generally speaking, an emetophobe vomiting without undergoing the mental changes needed to process it will not resolve the phobia.)

The other part of treatment is cognitive behavioral therapy (CBT). This is the retraining of the brain to manage the fearful thoughts. There are various elements of this part of treatment, including learning how the amygdala—the fear center in your brain—works and how to purposefully interact with it. Through various thought-feeling-behavior exercises, you learn how to diffuse the fear and stop inadvertently reinforcing it. (There's some evidence that EMDR can also be helpful for people with emetophobia.)

As her parents, we had to learn how the behaviors we thought were helping our daughter actually weren't. Telling her over and over again that food was fine seemed like the logical counter to her repeated requests for reassurance, but really, we were reinforcing her need for reassurance, which then reinforced the anxiety. We had to learn to tell her once, and only once, that something smelled or tasted fine and then stop responding. We had become avoidant of talking about vomit in front of her because it seemed so traumatizing—that wasn't helpful either.

So much of what we've learned in treating emetophobia is counterintuitive. That's true of treating most anxiety disorders, but with emetophobia, the behaviors are so specific it's important to find a therapist who understands how to treat it. It also can be hard to find a therapist who is familiar with it. Most we have called have never heard of it or never treated it.

Anna Christie's website is a good place to start your search. It has a list of therapists who specialize in treating emetophobia. She also has recommendations for finding a therapist if there aren't any on her list near you. We're in a rough time for finding therapists right now, though, as so many are booked out for months and aren't accepting new patients.

For self-help, an incredibly helpful book also came out last year. It has been a lifeline for my daughter, as her therapist moved out of state and we have struggled to find another to complete her treatment. "The Emetophobia Manual" by Ken Goodman, L.C.S.W. is basically a whole course of therapy in book form, complete with exercises and exposures. It's so good, I can't recommend it highly enough.

The good news is, emetophobia is treatable and there are more and more resources available for people who suffer from it. But it starts with getting the correct diagnosis, which is often the hardest part of the process.

This article originally appeared two years ago.