It Happened To Me: I Wanted A Chronic Illness My Whole Life, Then I Got One And It Kind Of Sucks

According to the very few doctors who find the Cyclical Vomiting Disease worth studying, “anything” can set it off.
Publish date:
March 28, 2014
health, chronic illnesses

I was officially diagnosed with Cyclical Vomiting Syndrome (CVS) in 2010 by an extremely striking doctor whose clinical expertise included “second opinions” -- I told him my background, we talked about Coney Island, he suggested antidepressants, and that was that.

CVS usually first shows up when you’re little. You vomit constantly for no reason starting around six or seven, and you probably miss a lot of school, but you’re definitely always all right. I would throw up almost exclusively in the middle of the night, like a tiny vomiting bat. Around high school it sort of stops, probably because you’re too busy smoking weed and making out to be vomiting all the time. And then around 20 or so, when you sort of have nothing else going on and everything’s getting kind of boring, it reappears, only stronger and more pertinent than it was when you were little.

In the adult stages, you throw up much more, usually for hours or days at a time. According to the very few doctors who find the disease worth studying, “anything” can set it off, but as a victim of the disease, I would say that “specifically you wanting to avoid whatever else you have to do at the moment” is what it sets it off the most. The only other trait that links CVS sufferers, besides occasional migraines, is lifelong hypochondria, which bounces off and on the lists of official symptoms but becomes instantly apparent the minute you delve into the patients’ lives.

Like all hypochondriacs, I’d longed for a chronic disease my entire life, and when I finally found one, it had barely any impact on my life at all. The disappointment was crushing, but I managed to make it work, because the thing about intense vomiting for hours on end is that even if you’re so used to it that you might as well be transcribing court documents or knitting a hat, everyone around you thinks it’s probably the worst thing that’s ever happened to you, and wants to do everything they can to make you feel better.

The other upshot to a chronic disease with no real consequences is that you always have an excuse to look into the possibility that it might have turned into something fatal, should you choose. A lot of people with CVS will rush to the hospital at their first batch of vomiting within a cycle; this is a mistake.

The correct thing to do, if you want to make an impact, is to wait for it to manifest into something that seems like more than it is. You need the desperation, rather than the urgency, to be taken seriously. But you also need to have a real disease, so the whole thing won’t really last long. Twenty minutes in and out, maybe. Probably a new prescription. Maybe a gastro appointment. Really not much else.
 A hypochondriac’s dream, if we’re being honest. So close to the edge, but able to walk right back out, to go find something else wrong with you.

Up until very recently, CVS was almost unheard of. When I first Googled “constant vomiting for no reason” in 2010, the Cyclic Vomiting Syndrome Association website was basically a couple of sections about what to do when your kid can’t stop flinging his dinner out of his mouth, plus the previously mentioned message board, with hoards of topics like “the hospital sent me away -- could it be lupus????”

Now the page boasts symptom checkers, international hotlines, a store that sells car magnets so everyone in your parking lot will know you might vomit on them, and a brand new post on the official blog titled “There’s NEVER been a better time to have CVS!” I can’t disagree. The whole disease feels like it’s about to take off, and I’m excited to be on the cusp. They’ve even got a brand new slogan: Hope Starts Here.

It’s not entirely clear where you’re supposed to go with that hope. The official Facebook page for CVSA, maintained by a woman named “Pattie,” is sporadically active, mostly with people commenting with long descriptions of their episodes and lifestyles. It’s all the same physical stuff –- Zofran, hard tile floors, missing school, etc. There’s a sadness to their stories as well; they feel lonely, often misunderstood, and sometimes even embarrassed by the condition. There’s a sense of community, but it doesn’t really have a purpose. There’s no cure for CVS, or even really an intention to find one, because, as Pattie aptly put it last April, “Who’s going to give someone $$ to research a bunch of people puking?”

I understand the commenters’ grief. It’s not pleasant to vomit for hours on end, and it can often hit you at the worst possible moment. I, for example, had terrible hangovers when I was younger, which I’m told was connected to the CVS, but which I always saw as a sort of penance. One morning I woke up at a friend’s place on the Lower East Side, and had to fight my way home through a jungle of public bathrooms in New York City, because I could barely move without vomiting. I ended up in the second floor restroom of the Thompson Hotel, sprawled out on a thankfully clean floor.

For hours, I would violently throw up and then drift off to sleep -- and then wake back up and repeat the entire cycle. When I felt I could move –- you can always feel when you’re done –- I gathered my bag, washed my hands, ignored the mirror, and walked out the door. No one noticed me leave. I went home and ordered hash browns.

I spent a few years indulging my CVS, and it was certainly fun and exciting –- who doesn’t want to have to tell new roommates that you have an uncontrollable vomiting disease -- but after a while there was nothing really left to do with it. It’s almost entirely mental, that’s the secret to it. Your doctors will only tell you that if you ask them directly, but if you’re willing to admit that your body is essentially pulling a giant prank on you and your entire life, the whole thing becomes less of a lifestyle, and more of a mild nuisance, like a dumb weird cousin that no one invited to Thanksgiving but who showed up anyway and accidentally broke a vase.

In the old world of CVS information, years before I could buy silicone awareness bracelets about how much I vomited, the only comforting fact I ever found was on the previously slim Wikipedia page. A single sentence, under the mortality header: “There is little hard evidence of death as a result of this condition.” It became a sort of mantra for me. Nothing about this pointless, moronic disease was going to kill me. I was just going to feel truly terrible, for a really long time, until finally, at the very end, when the retching stopped and there was nothing left inside me, I would feel basically OK, for a little bit, maybe, until something else triggered me, and then I’d just vomit more.