I don't think I can work with you if you're going to be so demanding: A medication error story

This story is from a member of the Consumer Health Quality Council of Health Care for All:

I've told versions of this story in so many sterile white rooms. When I was 14, I suffered from a series of unexplained seizures, and ever since then, debilitating migraine headaches. It is said that the function of the human brain is one of medicine’s last remaining mysteries. I believe that the function (or should I say dysfunction?) of our health care system is equally confounding. When I first moved to Boston after college, my seizures and headaches were well- controlled.

Soon after I started my first job, I was stricken by an intractable migraine. I was newly endowed with health insurance, so I picked a doctor’s name out of a directory. I was 22, and it seemed as good a method as any for choosing a PCP. My doctor asked me briskly why I'd come, and I explained about the relentless headache and my complex neurological history. I requested a referral to a neurologist. "I don't think you need to see a neurologist,” she said dismissively. “I want you to try taking Sudafed--" she scribbled the dosage on a pad-- "and see if that helps.” I knew my condition—and my suffering--was far beyond the powers of Sudafed, and I tried to convey that. But the doctor smiled tightly, gathered up her papers, and left the room. When the Sudafed failed, my PCP informed me that no in-network neurologist could see me before March, which, after all, “was only two months away”.

After days of diligent effort, and calls to three different hospitals, I finally wrangled an earlier appointment. By then I was enraged. The pain had become excruciating, and so had the indignity of having to negotiate the privilege of medical care. I recounted the whole saga to the neurologist. He nodded thoughtfully, stroking his beard and taking notes. I hoped he was jotting down ideas for fast- tracking my future appointments. Finally, he asked how I was feeling. I sighed, trembling now. "I feel horrible. I'm really hoping you can give me something for the pain." The physician paused and then his face closed. "I don't think I can work with you if you're going to be so demanding. I'm going to refer you to another neurologist; hopefully he can accommodate you better." I nodded politely, deeply humiliated. I thought about the rain outside, the missed morning of work, all the effort wasted for this referral, for which I'd lobbied so hard. I believe that it was only through family connections that I gained access to a headache specialist who ended my misery and prescribed medication that has helped me for years.

But sadly, the story doesn’t end there. After several years of equilibrium, the intensive stress of graduate school wreaked further havoc on my system. I met with yet another provider, who prescribed a medication that I knew lowers seizure threshold. In fact, I said, I had taken the same medication as a teenager, right before I experienced my first seizure. The doctor was cavalier. “Those seizures were almost 20 years ago; I think you’ll be fine.” Without consulting any member of my health care team or reviewing my medical records, he wrote me a prescription. Then he left for vacation.

Exactly two weeks later, a grand mal seizure rendered me unconscious. I fell down on the sidewalk and woke up in an ambulance. Completely disoriented, I barely knew where—or who—I was. I spent the night in the hospital, and then began the process anew. Finding specialists. Begging for appointments. Demanding coverage from the stingy grad school health insurance. Eventually stabilizing the situation with different medications (expensive drugs that I will have to take for the foreseeable future) and caring providers.

I remain stunned that I received such uneven care in a city renowned for its medical resources. I’ve learned that the best providers are the most difficult to access, and that our flawed and complicated health care system often undermines the best intentions of health care and insurance providers. Through my experiences, I’ve learned to advocate for myself and my health. Through the Health Care Quality Consumer Council, I hope to advocate for systemic change.

Advice to patients: Become an advocate, and get an advocate.

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