5 Awful Lessons I Learned Living With a Mystery Illness
Having a chronic, potentially life-threatening illness is terrible, which is why we call it "chronic illness" and not "chronic victory." Luckily, medical science has advanced to such a point over the years that, for the most part, you can go to a doctor to get your symptoms diagnosed and treated with a minimal amount of leeching.
But what if you were violently, persistently ill, and not a single doctor in the country had any idea what was wrong with you? That's what happened to Thomas Wolfe, who suffered from an extremely rare disease that took four damn years to correctly diagnose. We tend to think that modern medicine has identified every possible disease a person can catch, but as we learned when we talked to Mr. Wolfe about his experience, that assumption is dangerously, hilariously far from the truth:
Prepare for the Nationwide Tour of Confused Medical Specialists
My story wasn't much different than the prologue of any House rerun -- average guy, going about his day, when a mystery symptom shows up out of the blue. I was at a basketball game (doing security, in training to be a police officer) and vomited up a sandwich I had just eaten. No big deal, right? I chalked it up to just being what happens when you eat a concession-stand sandwich, but it happened the next time I ate, and the time after that. For the next year, I was unable to eat without vomiting, due to what would turn out to be a mystery illness that science didn't understand.
I had avoided medical attention as long as possible, pretending nothing was wrong, self-medicating with alcohol until I eventually couldn't hide it anymore. After my illness forced me to quit both school and my job, I had to come clean with my parents that something was seriously wrong with me, and they brought me home. I went to our family doctor who, sure enough, had no idea what the hell was happening to me.
So, my family doctor referred me to a GI specialist in Pensacola, Florida. From there I went to a hospital in New Orleans, then to another in Birmingham, Alabama, essentially on a national tour of vomit. I've basically had every medical test except for the one to check for black magic curses and for four years, all of them returned a result somewhere between "fuck" and "all."
I've done the "egg test," which involves eating powdered eggs laced with nuclear tracers along with dry toast and water, which is presumably what RoboCop eats when he runs out of baby food. The tracers are tracked through your system to test the rate at which food is passing through it. I've had an endoscopy, which is when they shove a camera down your throat to try to see what the hell is going on down in your insides. It can get down only so far though, so you'll often have to get a colonoscopy (i.e. asshole camera) too, sometimes at the same time.
That's right -- I've had cameras plugged into both ends, simultaneously (if you want to visualize it, there are certain porn clips you can go look up). The colonoscopy was particularly fun because, before the procedure, you have to drink a liquid that tastes like lemon-flavored ocean and turns your shit into hot water. I have fart PTSD now.
Then there was your run-of-the-mill bone marrow biopsy, the slightly more interesting esophageal manometry (they basically shove a tube up your nose to measure the pressure in your stomach), and something called a nuclear Debray, about which I can remember no details because I had more opiates in my system than Keith Richards in Qing China. I know it had something to do with scanning my stomach, but beyond that I couldn't tell you.
Medical tests are disgusting and repetitive (I've had around 10 endoscopes at this point), but most of them aren't nearly as painful as they make them out to be on television. Most of them. When tests get crazy, they get really crazy -- it's nasty, brutal, and hard. You just hope that all the bullshit and terror will be worth it. But ...
Next Come the Terrifying Experimental (and Illegal) Drugs
Even if the doctors don't know what's wrong with you, they'll still throw the entire weight of the pharmaceutical industry at you to try to keep your suffering to a minimum while they continue to poke and prod for the answer. Unfortunately, when the answer takes its sweet-ass time coming around, it's pretty easy to lose track of all the medicine they've been giving you, and before long you find yourself crushed under the weight of all those pills.
Some of it was pretty routine, like vitamins to prevent malnutrition, steroids to help with my nausea, and, of course, good old medicinal marijuana. Some of it was straight out of science-fiction, like IVIG treatments, which involve pumping other people's immunoglobulins straight into your veins like some kind of goddamned techno-vampire. Sometimes it was a familiar friend doing something new, like Xanax and Ativan, both of which work surprisingly well for nausea but also caused me to freak out and pull a gun on an automatic air freshener (not a joke). I'm currently taking a low-dose antipsychotic that basically tricks my brain into not vomiting. I am hoping that my brain does not catch on.
However, none of these can compare to domperidone. You can get it only through a special experimental medicine exemption, because it is illegal as balls in the United States. After taking it, I can absolutely see why. It's supposed to do something to your digestive system, but all it did to me was turn me into an alternately sluggish and rampagingly maniacal zombie.
When I first started taking domperidone, I felt like I was moving through sand. The feeling got progressively worse over the next few days until I eventually just passed out, and no one could wake me up. When I finally came out of my mini-coma, I didn't recognize anyone, but I had decided at some point during my drug-induced slumber that they were all evil. I tried to fight my brother, cursed at my mother, and did a number of other insane things before they were able to calm me down. That's what they tell me, anyway. All I remember is that there were monsters and bats everywhere and I might have spoken to God. Needless to say, I didn't take any more domperidone after that.
As bad as my reaction to that drug was, it wasn't quite as serious as what happened to me when I took methotrexate, which is basically a low-grade chemotherapy drug. The drug is probably fine when administered in the correct amount to cancer patients, but my nurse gave me eight times the recommended dose. I legitimately thought I was going to die. It turns out that, far from being infallible logic machines, medical professionals make potentially catastrophic errors just, like, all the time.
Which brings me to my next point ...
When Doctors Get Stumped, They Blame the Patient
As I got passed from hospital to hospital to specialty clinic like an unwanted potato, I learned pretty quickly that doctors don't know everything. They don't have a magic 8-ball in their brain that they can shake up for a diagnosis -- they solve problems the same way everyone else does, which means comparing the evidence (my symptoms, in this case) to their own knowledge and experience. They also react the same way everyone else does when they can't come up with an answer -- they look for someone to blame.
For instance, many doctors, when faced with a patient experiencing a mysterious illness, automatically suspect some kind of shenanigans. One time, I was going under anesthesia for one of my fun-filled medical tests when one of the doctors, evidently thinking that I was already unconscious, said, "You know, I think this guy's just got Munchausen." Munchausen Syndrome, in case you don't know, is when a person fakes an illness for attention or to fill a psychological need to be cared for by others. In fairness to the doctors, Munchausen Syndrome is a serious problem, but in fairness to me, fuck that guy. I'd been throwing up every meal for years at that point, but because they couldn't figure out what was wrong with me, it was more comfortable to assume that I was lying than to accept the possibility that whatever was kicking my ass was something they just weren't thinking of.
Other, more charitable doctors just thought that I might be crazy (which, again, is more comfortable than admitting they can't figure out what's wrong with me). Eventually, they all start running through the standard-issue mental health questionnaire that I assume every doctor keeps in the office in a glass box labeled "Break in Case of Mystery Illness." I got a bunch of questions about body image, because the natural assumption was that I was either consciously or subconsciously anorexic, which was hilarious to me.
That said, with all these educated professionals giving me the side-eye, I really did start to wonder if I was crazy, and if the whole thing was just in my head. So, I went to a psychologist. She asked me all the same questions, and I told her, "Look, lady, I love cheeseburgers. I'm a fat kid in a sick man's body. I would punch everyone in this building for the chance to eat one without throwing up." At the end of the session, she handed me a piece of paper and said, "Here's a note declaring that you're one of the sanest people I've ever met."
It's not that I think doctors are stupid assholes. I just think they aren't used to being stumped, so they shut down and start pointing fingers. These guys have egos, just like the rest of us.
And, while they point fingers, there's no shortage of advice coming from other "helpful" people in your life ...
Everyone Wants to Give You Advice and "Miracle" Cures
When you have a chronic, undiagnosed illness, every random person you meet is convinced they have a startlingly simple answer that the doctors just keep failing to discover. It's nice to know that people care, but pretty much every piece of insight someone tossed my way was totally insane.
For example, many people were convinced that I simply didn't know how to eat, despite having successfully done so most of my life. My whole problem, apparently, was that I just didn't chew my food enough -- I was taking bites that were too big, thus causing me to throw up all the time. Considering that only a few people at the Golden Corral on any given night end their meal by making out with a toilet, this probably wasn't the breakthrough theory I was looking for.
Also, there are tons of people just waiting for an opportunity to test out some miracle cure they've been carrying around, whether it be a magical natural supplement or actual magic. Some of these methods were relatively normal, like fish oil pills that supposedly cured a bunch of people in Norway, but some were definitely weird. My absolute favorite was God's Tea, a miracle elixir sold out of the back of a Florida man's van that someone told my mom about (to be clear: I did not drink any of God's Tea). I also have salt in my house that was supposedly blessed by the Virgin Mary. It was given to me with instructions to sprinkle it on my food, but it has never left the package. I really don't feel like vomiting particles of the Virgin Mary all over my bathroom floor.
Even if They Diagnose It, That Doesn't Mean They Can Fix It
In the final act of a typical House episode, once Dr. House stares off into the middle distance and has his revelation about what exactly is killing his patient, the very next scene is the doctors doing the surgery/administering the drugs that will fix everything. In the real world, there are plenty of disorders we know the names of but can't actually fix. Add mine to the list.
After four years of this bullshit, I finally found a doctor who looked back through all of my old test results and spotted something everybody had missed. She determined that what was happening to me was being caused by an enterovirus, a virus from the same family as polio. It normally takes the form of a respiratory infection, but because I'm so lucky, it attacked my GI tract instead, which is why nobody else had considered it a possibility.
"Well that's great!" you might be thinking. And, yeah, it is nice to finally have the official scientific name for what is happening to me instead of constantly having to refer to it as The Eternal Nightmare of Stomach Destruction. But knowing what it's called is pretty much all I've got -- the condition is so rare that we still don't know how to treat it, or what's going to happen to me in the long run (or, as might be the case, in the short run).
What we do know is that a bunch of kids in the U.S. just died from a particular strain of what I've got. So for some pretty important questions -- like "Am I going to die?" -- the answer is still a big, fat shrug. I could drop dead tomorrow or outlive you all. Nobody knows. All I can do is wake up every day and hope that's the day I start getting better. Otherwise, I just ... keep going. The same as the rest of you.
For more insider perspectives, check out 6 Weird Realities of My Life With an Awful Superpower and 5 Ways Life With Tourette's is Way Weirder Than in Movies.
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