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11:22pm March 8, 2013

Note to medical professionals about emetophobia in people with gastroparesis and other nausea-inducing conditions:

[Discussion of emetophobia, gastroparesis, nausea, vomiting, and willpower. Geared towards medical professionals treating current and former emetophobes who have nausea-inducing conditions, like me.]

Note to medical professionals:

Emetophobia is a phobia. It means that much of the time, you would rather spend all your waking hours, for years, concentrating on not vomiting, praying fervently to gods you don’t believe in, anything to avoid vomiting once within all those years.

When I tell you I am a semi-recovered emetophobe, it is likely that I am trying to explain to you that I need more nausea meds than I am being given. Because emetophobes develop talents at not vomiting. Because we can avoid vomiting even at a 7 out of 10 on a nausea scale that operates like the 1-10 pain scale. Because nausea at 7 out of 10 is horrible to anyone and torture to anyone with even slight emetophobia.

I may also be trying to tell you how hard it is for me to let go and vomit despite severe nausea. Because nausea has to reach 9 or 10 on that scale before vomiting becomes inevitable for me. Anything less has to require at least a teeny bit of letting go on my part, before I can allow myself to vomit. This doesn’t mean if I vomit, it’s on purpose. It means a physical state that likely only makes sense to other people who have my unfortunate combination of emetophobia and a chronic illness causing severe nausea and vomiting (in my case, gastroparesis, chronic bowel blockages, and chronic migraine, among others).

[And yes. It is BAD to have emetophobia and chronic nausea. In my case I think chronic nausea as a child contributed to my emetophobia, but severe vomiting as a young adult partially cured my emetophobia.]

Anyway. Please do NOT ever tell me any of the following:

1. “Nobody likes to vomit, dear.”

2. “Everyone hates to throw up.”

3. “Stop making a fuss. Nobody enjoys this.”

Somehow people seem to understand my terror of spiders, but not my terror of vomiting. They seem to not understand that it is in fact terror. That earlier in my life I would have rather died than vomited. That this goes so far beyond a normal dislike of a bodily function everyone hates, that it’s not even funny. By the age of eight I perfected a way to close my eyes, plug my ears from the outside, click my ears from the inside, plug my nose, and scream, all at once, lest the sound, smell, or sight of a classmate’s vomiting lead me to vomit. No other kid did more than plug their nose or yell “ewwww!” or back away, and no other kid was punished for all the weird things I was doing. I was. Because at the time I saw vomiting as scarier than death. Most nights I sat up reciting a mantra I made up against vomiting, controlling my breathing, praying (I was atheist or agnostic during this period, but that didn’t faze me when it came to emetophobia), and doing everything else I knew to avoid vomiting. And I did quite well, I vomited much less than anyone else I knew, but at a terrible cost in terms of fear and effort. There are emetophobes who count their years of not vomiting in decades, at the same cost. Emetophobia for me was like living in a self-induced prison sentence. It takes the power of terror to exercise that kind of control over your body.

I still have the mild remnants of emetophobia but I lost the biggest parts over two periods of my life. One was a day when I had such a horrible medication reaction, age eighteen, that I threw up all day long. It was so far out of my control that I lost much of the terror vomiting had inspired. The other was a time period a year or two long in my mid twenties when my migraines tilted in the direction if bad nausea, and I threw up nine days out of ten. So by the time I was diagnosed with chronic nausea, later changed to severe gastroparesis, I had already mostly recovered. Gastroparesis by the way is a nightmare disease to an emetophobe. Had anyone told me at age ten that I could live with it and be fairly happy, I would have thought they were telling me lies. I had no idea how adaptive I am in many situations. Including, apparently, being emetophobic and getting a disease whose main symptoms are nausea and vomiting.

Phobias are weird though. Sometimes they come back under stress in unexpected ways. Like the time I scared both myself and a nurse half to death, while throwing up, by trying to somehow climb up the nurse and hang on for dear life. I had somehow become convinced in a semi-delirious state that vomiting was death and tried to climb back into life, the nurse being the nearest thing to climb. I feel bad for her, but I wasn’t in my right mind at the time. I’m just trying to illustrate how emetophobia can suddenly reassert itself and make us do things we’d never otherwise do. And that ordinary people would never do even when they hate vomiting. That poor nurse had never had anyone climb her before for any reason. And I didn’t do it on purpose, it just happened out of sheer terror.

Medical care for nausea works differently for me, than it does for other people. For most people, you can mostly tell whether nausea meds are working, by whether the person is working or not. For me, you can’t. There’s a wide range of moderate to severe nausea that I can control with a combination of meds and willpower. But using that amount of willpower greatly diminishes my quality of life. At that point, I need as many more meds as it will take to diminish the amount of willpower I need to make use of. Because giving me just enough meds so I can white-knuckle myself into not vomiting is a form of torture when there’s any alternative.

If I weren’t a former emetophobe, I’d be puking my guts out all day long in those conditions. It’s not fair to hold me to higher standards and force me to use skills that are probably unhealthy both physically and mentally to keep up in the long run. If I would otherwise be puking all the time, I have to be treated, medically, as if I am puking all the time. My form and degree of self control is useful in emergencies, but also exceedingly unpleasant and unhealthy to do in all my waking hours. And it masks the true degree of nausea and potential for vomiting that is lurking underneath all the willpower.

This willpower comes from a lifetime of being horrified of vomiting and learning ways to avoid it. This also means that if I am vomiting, something severe is likely going on. It’s hard to let go of old habits. So if I throw up, it either means the nausea was so severe it overwhelmed my willpower, or else I had to “let go” a little to allow vomiting to take place. Letting go doesn’t mean throwing up on purpose, it means allowing vomiting to happen that would already happen if I wasn’t blocking it. It also likely means the nausea was quite severe.

Meanwhile, if I am not vomiting, it doesn’t mean nothing is wrong. Generally if I’m nauseated but using willpower not to vomit, I will become irritable, throw all humans and animals out of the room, refuse to talk to people, become enraged over my roommate’s TV or family or food, turn pale and start sweating, breathe way too regularly, swallow a lot, and attempt to maintain one physical position for so long that you might become worried.

If I ask for nausea meds, likely I needed them hours ago. If I ask for a bucket, get one fast. Do not tell me that I will not vomit, that I am doing so well, that I am only afraid I will vomit, or that I won’t need any of those nausea meds. Don’t give me a pep talk into not vomiting. Just give me the things I need to prevent vomiting and to help me if I do vomit.

And it would be nice at that point to have someone around. If I vomit too long, my risk of aspiration goes up due to neuromuscular problems. Those same neuromuscular problems mean that vomiting can lead to collapse or trouble breathing, from wear on the muscles since my vomiting can be intense and involve lots of muscles all over my body. I can lose the ability to sit up, hold the puke bucket, clean myself up afterwards, and so forth. Many times I lose bladder or bowel control. I can become weak or even turn completely limp in some areas.

But people expect me to have the physical, perceptual, and cognitive skills of a healthy person when I’m sick enough to be in the hospital, which especially concerns me. People expect me to do things I can’t even do at my peak of health lately. These aren’t realistic expectations of someone with complex medical needs. I understand places are understaffed, but would appreciate if people would tell me this rather than blaming my body for causing too many problems, or telling me I don’t have enough willpower. I have more willpower than most people will ever need, but I’m a human being with the same limitations of any human. I can’t be superhuman when I’m a person with severe chronic illnesses who is so sick I’m in the hospital, and outside the hospital I could land in the hospital with tiny changes to my daily routine. Please don’t ask me to be more than that. I also have workaholic tendencies, please don’t encourage me in them, they have almost killed me more then once.

In other words, my former emetophobia is real. It’s serious. And it has a severe impact on my treatment for gastroparesis and bowel obstructions. It can make it seem as if I am more or less nauseated than I am, it can make people call for too many or too few medications, and it can confuse people about how serious my conditions are. It is not a mild fear of vomiting, it is a terror of vomiting so life-altering that it’s hard to understand if you don’t have it. And you can’t go into treatment for someone with severe gastroparesis and even a mild or residual form of emetophobia, without understanding that both these conditions affect each other in tons of different, overlapping ways. Respect emetophobia for what it is, and you can learn all sorts of things about treating your patients who have it – whether they’re aware it has a name or not. Treat it as real, and you can treat things that only puzzled you before. Treat it as “just minor fear of vomiting”, and in the worst case you can lose a patient to something preventable. So this should be a priority. And maybe you can learn something about the importance of taking into account coexisting conditions in hospitalized people.