Ariana Aboulafia

THE POWER OF DISBELIEF:
Or How My Misdiagnosis Nearly Killed Me

On my 22nd birthday, a surgeon told me that I had six weeks to live.

In response to his statement, his somber face and his outstretched hand across my hospital bed, I burst into laughter.

"Doc", I said incredulously, "There's no way I'm dying. I'm a vegan."

The doctor stared back at me, a slightly bemused expression taking over his face. I scrambled to fill the stale hospital air with words.

"Last month I was walking around New York City and partying at rooftop bars in LA. The month before that, I climbed 500 granite steps to the top of a waterfall in Yosemite National Park. There�s no way. It doesn�t make sense."

I looked up at the doctor's nodding head and downturned eyes, and let him grab onto my hand.

"You need surgery", he said, finally making eye contact with me and repeating his ultimatum.

"Without it, you will die in six weeks."

Defeated and devoid of excuses and energy, I nodded back. Surgery it was, then.

Two days before this conversation, I had been carrying on with my somewhat hectic life as a first-year law student, getting adjusted to the new workload and the new city that I had moved to about a month before. I had noticed a pain behind my left rib that had been getting steadily worse each day—had thought that it was the result of carrying too many heavy textbooks, and decided to stop into the campus health center to get it checked out.

For the previous eight months, I had also been experiencing a host of other symptoms, including early satiety, fatigue, and extreme nausea, that had led to severe weight loss. The nausea was so bad that I could barely consume three bites of food at a time, and was struggling to consume a mere 500 calories a day. For months, I had been soliciting advice from several different physicians, and was told over and over again that the symptoms were all in my head, a result of anorexia and body dysmorphia and a desire to be skinny. The thing was, though, I didn't want to be skinny. I had liked the way I looked before the weight loss—and now, I could barely stand to look at myself in the bathroom mirror. Furthermore, I couldn't stand how weak and tired I was from not being able to consume enough calories each day, and I wanted nothing more than to be able to dig into a big plate of tacos or bowl of pasta. Anorexia is a serious illness, and a legitimate diagnosis—but it didn't fit, and deep down I knew that.

However, as the months went on and doctor after doctor (plus some friends and family members) continued to insist that I was anorexic, I began to slowly give up on ever finding a physiological explanation for my nausea and satiety, and accepted the diagnosis of and recommended treatment for anorexia. I began taking medication for depression and anxiety that I didn't have, as well as an appetite stimulant, to no avail. With each day that passed, I was giving up the hope of ever finding a true diagnosis for what was happening to me, and I had also given up the hope that I would never be able to eat normally again. Each night, I went to bed starving and nauseous at the same time, and dreamt about the food that my body would not allow me to consume. Each day, I sat in class and daydreamed about fluffy waffles, creamy guacamole, and crispy French fries. Food consumed my every thought, and I began cooking elaborate meals for my girlfriend each night just so that I could be close to food, even if I couldn't eat it.

The nausea and satiety had become such a part of my everyday life that, when the doctor at the health center asked me if I had been experiencing any other symptoms in addition to the rib pain, it took me a second to remember and tell her about them. When she heard about my symptoms and saw just how underweight I was, she looked me in the eye and asked me the question that no other physician had thought to ask.

"Ariana", she said. "Are you anorexic?"

I matched her steady gaze with one of my own.

"No," I said back. "I'm not."

She nodded, and immediately rushed me to the closest ER for a CT scan. I was so shocked that someone had finally decided to believe that my symptoms were physiological rather than psychological that the hours in the ER passed quickly, as I waited for physicians to tell me that the CT scan had come back normal, and that this was truly all in my head yet again I was even more surprised when the opposite happened – as the sun as the sun set behind the hospital window, an ER physician came up to my bed with a perplexed expression and a piece of paper in her hand.

"We think we found the cause of the pain and of your weight loss", she said, placing the paper gingerly onto my bed. "It's called superior mesenteric artery syndrome. It's really rare, I�ve only ever seen it in textbooks before." She pointed at the paper, which showed a diagram of my upper GI tract, and illustrated how my superior mesenteric artery, an offshoot of the abdominal aorta, had been cinching the opening of my duodenum (part of the intestine) closed, so that no food could move through it. An average duodenum, she said, had an opening of about 30 millimeters. Mine had a 3 millimeter opening, that was only open 50% of the time—the other 50% of the time, each time the artery beat in time with the aorta, there was no opening there at all.

Suddenly, the weight loss made sharp sense, as did the nausea and early satiety. All of the mysterious symptoms that I had struggled with and accepted the blame for, it turned out, had had a physiological origin after all. The ER doctor rushed me into a hospital gown and then into a hospital room, where I stayed for the next three weeks. Because I was so underweight and malnourished, doctors first had to insert a feeding tube into my abdomen and pump my body with calories for a week before surgery. Then, a gastrovascular surgeon performed a duodenal jejuneostomy on me, a type of intestinal bypass procedure where physicians cut the intestines to create a new pathway for food to pass through, so it no longer encounters the blockage created by the superior mesenteric artery. Slowly but surely, the doctors said, my body would get used to sending food through this new pathway instead of the old, blocked one, and I would be able to eat again.

The three weeks that I spent in the hospital were incredibly difficult. Not only was I literally fighting for my life, I was dealing with the emotional aspect of finally having a physiological diagnosis—albeit a life-threatening one, but a physiological diagnosis nonetheless—after being told for months that my symptoms had all been created in my own head. Furthermore, I was attempting to deal with (and still am dealing with) the reality of a long road to recovery, one that has already included a month of painkillers and a deferment from school and will probably include many more months of rest and physical therapy as I try to rebuild what my body has lost.

How can I learn to trust my body again, when it betrayed me so deeply that it forgot how to eat? And, how can I ever trust doctors again, when so many of them have failed me?

None of this has been easy. When I look back at this entire experience, the thing that stands out the most is just how close I had to get to death—six weeks away, apparently—in order for a physician to finally take my pain and my symptoms seriously. And, this is not just something that has happened to me; according to a recent article published by The Atlantic, pain reported by female patients is often seen as "constructed or exaggerated", while female pain patients themselves are often seen as melodramatic until they are able to "prove that they are as sick as male patients". In fact, the article goes on to state, men in the United States wait an average of 49 minutes before receiving an analgesic for acute abdominal pain, while women wait an average of 65 minutes for the same thing. This disparity in treatment can lead to severe physiological and psychological repercussions for female patients, many of whom (like me) have their treatment delayed simply because no one will believe that we are truly as sick as we say that we are.

Sometimes it feels like behind every ill or chronically ill person lies the shadows of those who have walked away from us. These are the people who have dismissed and misdiagnosed us, who have told us we were "crazy" or too sick or not sick enough, or somehow not worthy of treatment or remission or life. Our lives are better off without these people in them, and yet standing in their shadows can feel a little cold at times. For these times, we must rememberthe light and the warmth of those who stuck by us instead. These people—the physicians who finally believe us, the family members who fly to us, the partners that sleep in uncomfortable recliners and eat hospital chicken salad sandwiches so that we do not need to be alone—their light greatly outweighs the darkness of being left behind and dismissed, even repeatedly, because it is their actions that matter most.

I hope to one day witness a healthcare system where a physician who believes your pain is standard rather than remarkable, where a young woman does not have to come a whisper away from death in order to be taken seriously.

Ariana Aboulafia is a 22-year-old writer from a small town one hour north of New York City. In 2016, she graduated with a B.A in Political Science and a B.A in Law, History and Culture from the University of Southern California in Los Angeles, CA. She will be starting the University of Miami School of Law in August, to pursue a JD degree.