My mother isn’t a drug-seeking patient. She’s in pain.

The patient, age forty-nine, complained of abdominal pain. She was taking both slow- and fast-acting oxycodone to manage the pain, and she also took antidepressants and a sleeping aid. She’d come to the hospital several times in the past year, always with the same complaint. This time, not feeling well enough to drive, she’d come by taxi. The veins in her arms were small, threadlike and collapsed, like those of a ninety-year-old or a recreational drug user.

Her medical file was huge, with reports from her primary-care physician, from local hospitals and the gastroenterology department of a highly regarded teaching hospital across the state.

She told the ER doctor that her pain was caused by chronic pancreatitis — a permanent inflammation of the pancreas — and that the pain had worsened over the past two days until she could barely stand. She urged him to contact the teaching hospital, whose specialists were familiar with her condition and asked to be transferred there.

“I can give you fluids, but no pain medication,” the doctor replied, adding, “You know, taking narcotics is not good for you.” He didn’t call the teaching hospital, nor did he read the gastroenterologist’s note stating that the patient was not drug-seeking and confirming that her pain did stem from chronic pancreatitis.

Chronic pancreatitis often occurs in alcoholics and drug users, but in my mother’s case, it was caused by a rare birth defect in her pancreas anatomy. When the pancreas becomes inflamed, the digestive enzymes it secretes attack the organ itself. In response, the organ’s damaged nerves send out sharp, persistent jabs of pain that worsen whenever it’s jostled or stressed, as in walking or eating.

It was 2:00 p.m. when Mom’s number popped up on my phone. I was walking to my organic chemistry lab at the university where I was in my senior year of premedical studies. We were going to isolate the red pigment lycopene from tomato paste samples. After that, I planned to park myself somewhere and study for the next morning’s animal physiology exam.

I pressed “Answer.”

“Christina, don’t freak out — but I’m at the hospital again,” said my mother’s voice. I sucked in a breath.

“The pain isn’t going away?” I asked. “Do they believe you?” Walking into the science building, I waved to a friend, then ducked into an alcove by the lab door.

“No.” I heard her exhale, then start to cry. The sound felt like a punch to my diaphragm.

“Let me talk to them,” I said. “Are they sending you up to your gastroenterologist?”

It had been almost three years since my mother developed pancreatitis. At first, her attacks happened only sporadically; I spent the summer before sophomore year shuttling her to appointments and sitting in hospital rooms, watching reality shows while she received her fluids and nutrition through tubes. My father was out of the picture, and my younger sister (and only sibling) is intellectually disabled, so all of the caretaking fell to me.

My mother’s bouts of pain started to come every month, then became constant. Throughout all of this, she worked full-time as an engineer for an aeronautics lab while also taking care of my younger sister.

The pain was controlled by prescription narcotics — until it wasn’t anymore. My mother became a shell of her former self, barely able to load the dishwasher, much less work. She sank into depression and had trouble sleeping. Approved for surgery to repair or remove her pancreas, she began the nine-month wait to reach the top of the surgeons’ list.

While waiting, Mom tried to manage her pain by not eating solid foods, lying on her stomach or lifting heavy objects. When these measures failed, she had no choice but seek relief at the local hospital.

“Christina, they’re just sending me home. I can’t do this. I hurt so much.”

“I know, Mom. I know.”

I peered through the lab window to where my professor was setting up test tubes. He saw me and waved.

“Can one of your friends drive you to the teaching hospital?” I said. “If not, I’ll fly home tonight.” This would mean a 900-mile cross-country trek — and missing tomorrow’s exam.

On the other end of the line, I heard her ask the nurse, “Why don’t you believe me?”

To me, she said, “I’ll call someone. I have to go. They’re sending me home. I’ll text you when I get a ride.”

She hung up, and I walked into my lab.

There I did what thousands of organic chemistry students do every semester: I went through the motions of pipetting substances into test tubes, weighing them and transferring them into new test tubes.

Weighing the samples, I reflected that it was easy to view each one as identical with all the rest and to prepare it using the same methods and shortcuts that had worked countless times before. I could understand how medical professionals might do the same with their patients — how, looking at my mother, they might see a patient like countless others who’d complained of pain without necessarily having it.

But she’s not one of those patients, I thought. As I pictured my mother’s suffering at the hands of doctors who could have eased her pain but chose not to, I felt helpless and furious.

After college, while working as an EMT, I would encounter plenty of patients who were classified as “drug-seeking,” “oversensitive” or “complainers,” including one Vietnam veteran whose nursing home attendants had ignored his complaints of heel pain. Half of his heel came away with the bandage I removed from his foot.

Whenever I felt tired at the end of a long shift, and disinclined to give a patient a full exam because I suspected that he was drug-seeking, I tried hard to remind myself what it’s like to be on the other side.

Eventually, I decided not to go to medical school and stopped working as an EMT. I found it difficult to shoulder the burden of being responsible for a patient’s life, and I had to admit that I lacked the knack for caring for strangers. Without the strong emotional attachment that I’d felt for my mother, I found myself becoming impatient when they complained, or when I had to carry out routine procedures, as medical caregiving requires endlessly.

I still haven’t forgotten how easy it is, as a clinician, to see the symptoms first and the patient second, and to reach quick conclusions based on previous experience. How can I forget, when just months ago I had to help my mother contend with a doctor who, despite the chart in his hand and the eleven-inch scar across her abdomen, refused to believe that she’d had her pancreas removed?

But I have to keep hoping that, as hard as it can be, my mother’s caregivers, and others like them, will find a way to keep an open mind and an open heart.

Because I also can’t forget what it felt like to be a twenty-year-old listening helplessly to her mother cry, a thousand miles away, because she was hurting, and nobody else would listen.

Christina Phillips is a radio producer. This piece was originally published in Pulse — voices from the heart of medicine

Image credit: Shutterstock.com

Leave a Comment

Most Popular

Get KevinMD's 5 most popular stories.