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What It's Like to Have Gastroparesis When You Fear Vomiting

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We all have fears. The fear of flying. The fear of large crowds. The fear of heights. Maybe if you’re a little odd like me, the fear of small holes (yes, it is a real fear called trypophobia). No, I didn’t just make that up.

But if you’re also like me, some of those fears can be all-consuming. They can be petrifying. They can be life-altering even. For me, I face my greatest fear on a daily basis. My greatest fear in life, the one that paralyzes me (literally), is emetophobia. Many of you may have never heard of emetophobia. But would it surprise you to learn that it is a common fear?

So what is emetophobia? Emetophobia is the fear of vomiting or watching someone vomit. For me, it spreads as far as hearing someone vomit and even hearing someone talk about vomiting. I quite seriously become physically ill if anyone discuses vomit in any form. Even writing this article is making me queasy (although, to be fair, I was extremely nauseous before beginning as well).

This fear can affect you when you or someone around you contracts the stomach flu or perhaps when you or someone you know is pregnant. It affects people when they have motion sickness. It can affect people as a side effect of medications.

For me, emetophobia is a fear I have to cope with every single day of my life. It is a fear that will haunt me every day of my existence on this earth. Emetophobia literally controls my life. How could something that happens to most people once or twice a year control someone’s life? Because I have gastroparesis.

Remember when I said emetophobia literally paralyzes me. I wasn’t being facetious. Gastroparesis is an extremely rare stomach disorder that actually paralyzes your stomach and often your digestive track. This causes severe symptoms of early satiety (or feeling full after eating just a few bites), extreme nausea, vomiting, severe bloating, severe abdominal pain, hair loss, weight loss, weight gain, malnutrition… the list goes on. So while many people who have emetophobia only experience nausea and vomiting during flu season, I experience it daily.

Let me clarify to say that people who live with emetophobia are still plagued with this fear to some extent every day. They will do anything to avoid vomiting, seeing or hearing others vomit or even listening to someone discuss vomit. It is something that controls their thoughts and their actions on a daily basis. People with emetophobia will go out of their way to evade any activity that could likely, not even probably, result in someone or themselves vomiting.

For instance, I will not be around heavy drinking or go to a social event where I know copious amounts of alcohol will be served. I never once went to a party in college and avoided interactions with drunk college students like there was an outbreak of Ebola. I refuse to go on roller coasters for fear that someone else may become ill. I don’t even like going to amusement parks. I absolutely dread going out in public in general since people can become ill at any time. I even fear going into the bathroom in the unlikely event that someone may get sick. Don’t even get me started on hearing people having coughing fits in the bathroom!

My emetophobia is so severe that I have contemplated whether or not I want children because I know I will not be able to handle an outbreak of the stomach flu. In fact, I have a fear of being around children in general because they are breeders of germs and illness.

Emetophobia can also cause those who have it to develop severe germaphobia since, logically, germs breed illness. I wash my hands dozens of times a day for a much longer time period than the average person. My hands are oftentimes cracked and bleeding during the winter, no matter how much lotion I apply. I sanitize every inch of my house, especially during cold or flu season or if anyone I know is sick. I have even become nervous that I will catch the stomach flu from hearing someone say they had it on the phone or on Facebook! Yes, it controls my life to this degree.

If I even hear someone say they might vomit or feel like they are going to vomit, I have a small panic attack. When someone so much as mentions feeling sick, I will ask them over and over again what kind of sick they mean and continually ask them if they are feeling better. One time, my grandmother jokingly said she felt like she was going to vomit after we finished eating a large meal at a restaurant. I demanded that my grandfather stop the car and let me out to go ride with my mother and father. My family still makes fun of me for this to this day even though I was only 4 years old.

If someone actually becomes ill, I don’t even know how to function. My entire day, my entire week even, is spent reliving the horrible moment on constant replay. The image never leaves my mind even months or years after it happened. When my aunt became sick on a family trip, I stood outside the rest of the day and refused to come in the house. My parents even tried to bribe me with pizza to come back in. But I stood outside while everyone else ate dinner until it was dark and my parents forced me to come inside. This is the extent to which emetophobia affects me.

Before I was diagnosed with gastroparesis, emetophobia clearly altered the way I lived. My life was clearly affected. But because of gastroparesis, my life is completely changed.

Imagine your worst fear in the entire world. Can you feel the anxiety kick in? Can you feel your heart racing? Did your stomach do a small flip? Now imagine you are faced with that fear every single day of your life. That is what living with gastroparesis and emetophobia is like. It is a daily battle with the worst fear you could possibly imagine.

Having emetophobia and gastroparesis is quite literally the fear of yourself. Every single day you wake up with gut-wrenching nausea. You beg for the nausea to relieve itself. But then you remember what that means – vomiting. The one action that could bring you relief will also bring you devastating fear. How’s that for a double-edged sword? Every second of the day, you wonder, will this be the day? Is this the day it will finally happen? Has my time finally expired? Have I been lucky long enough?

Many people with emetophobia actually track how long it has been since the last time they vomited (practically to the day). 13 years and counting for me. Remember Jerry Seinfeld or Ted from “How I Met Your Mother?” They both kept track of how long it had been since the last time they vomited. I honestly remember every single reference to vomit or when anyone has vomited in a TV show or movie because I will avoid ever watching that episode or movie again. Seriously. It is the one reason I absolutely despise “The Sandlot.”

Nausea can be one of the most devastating feelings. Yet nausea coupled with the fear of vomiting is indescribable. It is unbearable. It is intolerable.

Remember when I said I haven’t vomited in 13 years? I am one of the “lucky” few with gastroparesis who does not vomit. That should be wonderful, right? But I’m not sure “lucky” is the correct word to describe the lack of vomiting with gastroparesis. Because I do not vomit, I am almost constantly nauseous on some days. To clarify, I am nauseous every single day of my life. But the degree of nausea varies. I have some days where every piece of food I put in my mouth makes me feel like I am going to vomit. Yet if I was able to vomit, I would undoubtedly feel at least some relief.

Honestly, for me the fear of vomiting is worse than the actual act. There is so much fear leading up to the act that those with emetophobia dread vomiting and dig their feet in when they feel the sensation. I literally clench my teeth and swallow back the feeling of nausea each time I feel it wash over me. It is my natural reaction. No matter how much I feel like I am going to vomit, I will try my hardest to make sure it never happens.

The fear of vomiting for people with emetophobia is so severe that we would rather struggle with nausea than simply vomit and eliminate the source of our agony, even for a few moments. In fact, many people with emetophobia haven’t vomited since they were kids. Yet it is a fear that dominates their life.

I never get to escape the fear. My entire life revolves around a cyclical effect of needing to eat to nourish my body, feeling nausea after eating, consequently feeling like I’m going to vomit and becoming intensely anxious and fearful because of this sensation. There is not a day that goes by that I don’t feel a twinge of nausea, resulting in overwhelming fear.

So while I may be “lucky” that I do not vomit, the fear is always there. The nausea is always there. The disease is always there. I am never able to avoid it. Not a day goes by that I can forget about this fear. It absolutely consumes me.

Living with emetophobia is challenging. Living with gastroparesis is debilitating. But living with both is devastating.

For those of you silently living with emetophobia, you are not alone. Millions join you in the fight. You have their support. Many share your struggle. But it can get better. There is light in the pervading darkness. With time, patience and treatment, you can begin to control this fear. While it may be something you struggle with for the rest of your life, you can learn techniques to help you manage the fear. You can take your life back.

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Image via Thinkstock.

Originally published: February 10, 2017
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