(This post is not about our homeschooling, but I wanted to share this story here as it has been a major event in our family’s life. Honestly, trying to deal with the issue addressed in this post is a major reason why I haven’t posted in almost a year. It has consumed much of our family’s emotional bandwidth. As a warning to anyone who might have come across this post that has emetophobia, I will be discussing this phobia and the treatment of it. This post will contain possible anxiety trigger words and topics. Also, I apologize for the length of this post. I want to share as complete a version of our story with this as possible so that it can hopefully help others.)
Have you ever heard of emetophobia? This is actually one of the more common phobias in the US, but very few people have even heard about it because, quite honestly, it’s difficult and embarrassing to talk about. Emetophobia is the fear of vomit and vomiting. Yes, it’s a real thing and before you dismiss it or think it simple or silly, I ask that you read on.
I have decided to write this post in hopes that it might help and encourage other people who have this phobia and their families. I want you to know that there are many others like you and that there is treatment for this. More importantly, my 12-year-old son wants you to know this. After all, he’s the one that’s been living with this day-in and day-out for over three years, and he asked me to share his story with you. In this post, I’ll call him NDEW.
About three and a half years ago NDEW traveled with me for a job interview I had. We had friends who lived in the area where I was interviewing and he spent the day with them while I was at my interview. During that day, NDEW came down with the norovirus. I will spare you the details, but he was sick for our entire six-hour drive home. I’m not going to lie. It was pretty darn terrible, and I wasn’t the scared, sick 9 year old. I will also say that during this time our family life was in a lot of upheaval. My husband had lost his job, and we were looking at moving to a brand new place, where we knew no one. I’m sure all of that didn’t help the situation.
NDEW’s first panic attack around getting sick happened less than two weeks later. We honestly attributed his anxiety at the time to all the change going on in our lives and didn’t even consider that he could have developed a specific phobia to throwing up. Soon after we moved we had him start seeing a counselor to work on his anxiety. Yes, it helped in some respects, but this fear around getting sick never got better and actually got worse.
So this post doesn’t end up being even longer than it already will be, I’ll jump ahead and describe to you how severe things got before we finally found the help that NDEW needed. Fast forward three years from those first panic attacks about throwing up-to December 2014-and this is where we were:
- NDEW essentially refused to leave the house, especially if there was a chance he was going to be in crowded environment where someone might get sick or if he heard about some illness going around.
- NDEW did not want to be around other kids, especially little kids, because they might get sick without warning. Just the mention of someone being sick would send him into a panic attack.
- NDEW couldn’t ride in the car for more than 30 minutes or so at a time without a panic attack setting in.
- NDEW refused to use his bathroom in our house (needing to use ours instead) because that’s the last place he got sick.
- NDEW had developed many superstitions around getting sick. He felt that there were many things that if he did do them or didn’t do them it meant that he would get sick. This aspect of this phobia can look very much like OCD. We weren’t even aware of many of these superstitions and when we would force NDEW to do something that went against one of these (often unknowingly) he would act like a caged animal-total fight or flight response.
- He became completely hyper vigilant about any physical sensations he experienced, especially in his stomach, and would be convinced that each meant he was getting sick. A growling stomach from hunger would send him into a blind panic that could last for hours.
- NDEW developed a vocal tic that sounded like a short cough. He would do this to provide a physical release to the anxiety that he would feel. Of course, this release was only temporary and the more anxious he became, the more he would do it. At his worse moments he would cough 20-30 times a minute. I’m not going to lie; that sound became like fingernails on a chalkboard to my husband and me. It was like a big, red, neon sign or alarm shouting “I’M GETTING ANXIOUS!!!!!” There was no ignoring it.
- NDEW would regularly dissolve into full, screaming, crying panic attacks that could last for hours.
- NDEW severely limited what he would eat to a few things that he believed couldn’t ever make him sick.
- NDEW has always struggled with sleeping, but it got worse because he would be convinced that if he fell asleep, he would wake up sick. We were all exhausted.
- Because of his face blindness, NDEW is not a fan of being away from his dad and me because we often act as his “recognizers”. This got much worse though as his emetophobia got worse. The thought of getting sick out in public and not being able to find or recognize a “safe person” to help him was an absolutely terrifying thought.
Things got this severe gradually and it honestly was really bad before we realized how really bad it was. Our entire life began to revolve around trying to manage this issue. Needless to say, we weren’t very successful. In many ways, the ways we were acting were making things worse and reinforcing NDEW’s anxiety, but we were so deep in it by that time that we couldn’t see it. We were just trying to make it through each day with our family and our sanity at least somewhat intact.
When you think about phobias, most people think of things like spiders or flying or public speaking. Not to downplay these phobias at all, but in many cases, someone with one of these phobias can avoid their trigger. But how do you avoid a trigger that’s internal to you? All of us at some point feel queasy, nauseous, “a little off”. Maybe we ate too much. Maybe we let our blood sugar get too low. Maybe that car or boat ride bothered us a little. Maybe there’s no reason at all for it. But you can’t avoid something internal to you and, when you are emetophobic, you carry around your phobia with you. You can never totally get away from it, no matter how hard you try. And try hard NDEW did. I have seen emetophobia compared to PTSD, and in many ways, that’s probably an accurate comparison. The speed at which the panic reaction sets in, the tie there often is to a previous experience that causes an almost “flashback” reaction. All are similar to PTSD. When NDEW was in a time of panic related to his phobia he would have honestly, seriously, told you that he would rather die than throw up or be around someone throwing up. In his mind, this was literally a life-or-death situation and he reacted as if that were the reality. No logical explanations or rationalizations could convince him otherwise.
One night in November 2014 when NDEW’s anxiety was at a particularly high level, I had reached the end of my rope. I had heard the term “emetophobia” by that point and had even briefly read through the website of a woman in British Columbia who had suffered from it herself, had gone through treatment, and now almost exclusively treated people with it. Her name is Anna Christie and I emailed her that night asking her for help, any help. We were truly in a desperate place.
Ironically, NDEW really was sick the night I sent this email; it was not just his anxiety. It was another experience with the norovirus. Some people have said to me, “Well, didn’t throwing up show him it wasn’t the terrifying experience he imagined it to be and that he could live through it? Didn’t getting sick help him?” No. It most definitely didn’t. His anxiety was some of the most severe I had seen it that night. We actually ended up in the ER, looking for a way to help him keep down food and water but also, honestly, in the hopes that they might give him something for the anxiety as well. After the illness was over we were right back where we had been. His anxiety level didn’t reduce at all.
Ms. Christie emailed me back within an hour and gave me the name of a therapist that specialized in treating this. He was located in Charlotte, only two hours from us. At that time I would have driven 12. The next day I called this therapist’s office and we scheduled our first appointment.
We have now been working weekly with Dr. David Russ at Carolina’s Counseling Group since that first appointment in December. This phobia, like many others, is treated through a process called exposure therapy. Trust me when I say that it is not an easy form of therapy but it works so it’s worth it. Essentially, in exposure therapy, you expose the person to the thing they fear the most and then not let them use any of their defensive, distracting, or safety behaviors to deal with what they feel. They sit there and feel the anxiety and fear that results.
Imagine the thing you fear the most in life. The thing that makes your heart race. That makes you feel short of breath. That maybe causes that “unsettled” feeling in your stomach. That thing that your brain tells you threatens your very survival. Now imagine interacting with that thing on purpose. It. Is. Hard. No way around it. As a mom, I will readily admit that there was a part of me that didn’t want to do this. What parent wants to not only watch their child in distress but willingly exposes them to the thing that causes that distress? After we met the first time with Dr. Russ though, I believed that it would work. I believed that it would help NDEW and that we could get control of this. So I was willing to go against that first, initial mom response and give this a shot.
More importantly, after that first meeting with Dr. Russ, NDEW believed it could work. I cannot tell you how proud of him I am for facing this and dealing with it. He would definitely not tell you that he enjoys it. But he walks into that office each week and finds the courage to repeatedly face the thing that his brain, his nervous system, tells him is deadly. I have seen him draw on reserves during this process that I honestly didn’t really know he had.
So what is involved in exposure therapy for emetophobia? (Don’t worry. I won’t go into lots of detail.) The theory behind exposure therapy is that repeatedly exposing a person to the thing that causes them anxiety in short, but progressively more realistic or graphic doses, retrains the brain and nervous system to not see the thing feared as a threat. NDEW’s exposure therapy started with different words that are used for vomit. (As a side note, NDEW couldn’t use any other words other than “getting sick” when we started this process without a panic attack setting in.) Dr. Russ would show NDEW a card with a word on it and then would ask NDEW where he fell on a scale of 1 to 10 in terms of anxiety. His goal was for NDEW to never go over a 5 or 6 on any given exposure, and to get him down to under a 2 before moving on to the next exposure. The trick is to get that number down to under a two without using “safety” behaviors. To sit and live through the 5 or 6 level anxiety and to see that it’s possible. Some words bothered NDEW more than others, so we spent longer on those words. The repeated exposure involved things like NDEW reading the word to himself, Dr. Russ or me reading the word aloud, NDEW saying the word aloud. We would even make up silly songs where we repeated the word over and over. I know this sounds a little wacky, but you know what? It worked! Over time, NDEW’s report on the anxiety scale would start to come down and, before we knew it, he was saying, shouting, singing the word without any reaction or anxiety whatsoever. He would even get to the point that he could laugh about it! Once we got to that point, we’d move on to the next word and start the process all over again.
Now, a word of caution: By my description, it may seem like this would be something you could do on your own without having to pay to see a therapist each week. Here’s the deal. Dr. Russ has been working with phobias, including emetophobia, for many years. He knows how to present a “just right challenge” to NDEW-to challenge him and not let him “take it easy” but also to present a challenge that wouldn’t completely overwhelm him and send him running out of the office in panic. In other words, he knows just what to do to get NDEW up to a 5 or 6 but not take him all the way to a 10 (which is called flooding and is most definitely NOT helpful). He can watch NDEW objectively and know when to push a little harder and when to back off a little. Honestly, even with my background and training in counseling, it would be really easy for me, if I was trying to take NDEW through this on my own, to not push him hard enough or even to try and push him too hard at times. In addition to NDEW’s willingness and courage to take this on and actually do the work, Dr. Russ’s guidance, insight, compassion, and experience is what has made this successful. If you have emetophobia, please, please find someone to work through this with you. Don’t try to do it on your own.
For NDEW, after words, we moved on to sentences, which got progressively more descriptive. And then onto paragraphs, which, again, were progressively more descriptive. Then we moved on to images. The first images were line drawings. Then more detailed cartoons. Then photographs of actual people. With each new exposure, we worked the same process and didn’t move on to the next one until NDEW was ready. He passed through some exposures quickly. Some bothered him a lot and maybe took a whole appointment and the week after’s homework to bring NDEW down under a two. Yes there has been homework involved. The homework has never been a new exposure. It has always been practicing one that we’ve worked on with Dr. Russ to help cement the exposure as non-threatening to NDEW. We may or may not have had various interesting pictures taped up around our house during this process.
We are now in the last phase of this process. I suspect that we have a couple more months, maybe three, left working with Dr. Russ. We are now working on videos. Again, the first ones were very simple-Claymation and very simple computer animations. Then we moved on to more graphic cartoons. Now we are on videos of actual people. Again I will say, this is not an easy process, but the results are so worth it.
What results? Well, again, we aren’t finished with the process, but, already, there has been more of a change in NDEW that I can probably put into words. All of those things I listed above? The unwillingness to leave the house? The unwillingness to be around other kids? The severely limited diet? The tic? The superstitions? They are all so much better. Are we 100% there yet? No. Does this phobia still rear its ugly head occasionally? Yes. But when it does, NDEW is able to bring his anxiety under control so much more quickly and easily and we are learning how to support him without reinforcing his anxiety. Last week, after we got home from our weekly trip to Charlotte, we were talking about how NDEW feels about how things are going and he said to us, “I feel like I’m getting my life back. Like I can be a normal 12 year old now. I will never regret doing this work and I owe Dr. Russ more than I could ever tell him.” My husband and I feel the same way.
We know that we will probably always have to keep an eye on anxiety in NDEW’s life. Especially because of his prosopagnosia, he is more prone to it. But it feels like we have overcome a huge obstacle over the past 4 months and have tackled something big. If you or someone you know suffers from emetophobia, please know that you aren’t alone and, if at all possible, do what you need to do to get the help you need. It can be conquered and you can get your life back! I hope that reading our story has encouraged you and given you hope. Please feel free to leave a comment or contact me if I can help you in any way. Many blessings on your journey toward healing.
It’s so nice to have this smile back.