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Misery.com: My year as an Internet doc

The author was surprised by the level of suffering among patients in cyberspace.

By R. Steven Singer, MD
Neurologist/Kirkland, WA

I recently completed a year working part-time with a medical Web site that lets patients ask questions of specialists. As the designated Headache Expert, I was expected to review and reply to hundreds of questions.

The inquiries came from all over the world, but most were from small towns across America. I naively assumed that I’d simply receive a few basic questions about medication doses and the nuts and bolts of pain treatment. What I encountered was desperation and frustration, anger and ignorance, suicidal depression and panic. I started calling the Web site misery.com.

The first e-mail I opened set the tone. It was sent by a young woman in a small Southern town whose situation was so pitiful that I would have admitted her to a hospital for depression if she’d been my flesh and blood patient. Her desperate message had been sent a month earlier while the company was still hiring doctors to man the site. In other words, her message was old bad news, like finding a suicide note in a bottle on a beach.

This patient had severe daily headaches. Her life was being destroyed by her pain. None of her doctors with their multiple prescriptions could help. Somehow, she managed to cope and take care of her four children with little help from her husband, who was often absent.

Her e-mail didn’t make use of any known concept of spelling or punctuation. It was just a continuing wail of anguish without pause for breath. I could imagine her beating on her keyboard in the dead of night, sending out her plea for help. The situation was more dramatic than any soap opera and was more frightening because it was real, and I was supposed to do something for her.

I spent two hours composing a reply. It filled two screens, covering every possible scenario, and ended with my own plea that she find a good headache expert in her area. Of course, there were probably 100 reasons why she wouldn’t be able to do the things I was suggesting. It was like telling a starving Ethiopian to go the nearest McDonald’s.

After agonizing over that first drama, I still had 58 other messages to answer that month. I couldn’t spend two hours on each. So I sent that one off with a prayer and went on to the rest without much hope that I’d ever really answer their questions.

As it happened, that first message was the most desperate one I’d receive the whole year. The usual questions were a microcosm of medical practice today, starting with frustration about the health care system, and ending with more mundane ignorance about medicine.

A common scenario was anger at physicians for not prescribing enough pain pills. The underlying message was typically that the doctor is an insensitive jerk and should experience that much pain himself, and "then he would understand."

All the patients said they needed more time with medical professionals, particularly professionals familiar with pain and headache disorders. I have no doubt that the same need would be found on the irritable bowel, PMS, and fibromyalgia Web sites. Maybe every medical Web site.

Many patients knew they were in trouble with drugs, particularly the ridiculously overused over-the-counter analgesics, but they had no idea how to deal with their issues.

There were frequent comments about holistic and alternative treatments they read about in such eminent medical sources as The National Enquirer. I found it frightening that these patients were just as likely to believe the supermarket scandal sheet as their internists’ advice.

Many of the electronic patients had issues of co-morbidity with numerous diseases and symptom complexes overlapping. That’s always a problem for subspecialists, on or off the Web. Patients frequently "subcontracted" part of their problem to me, but left out huge amounts of information. Those messages would often begin, "I have fibromyalgia and maybe lupus ... but what I want to ask you about is ..."

This is a very dangerous scenario for doctors who don’t do complete histories and physicals. For these Web patients, it was always necessary to begin with the usual disclaimers, and recommend that they see a physician.

Seemingly innocuous questions came with huge underlying issues. "How many migraine pills can I take in a month?" one woman asked. "By the way, I’m in my sixth month of pregnancy." The phrase "Oh My God!" quickly occurred to me. Did she mean she’d already been taking the medicine for six months of her pregnancy when the recommended amount is zero?

By the end of the year, I had a new appreciation for pain patients, and I was just getting the hang of Internet medicine. The experience helped me develop better understanding of patients’ current thinking in areas that I might not have time to hear about in my hurried office schedule. Patients on the Web say what they want without fear of being interrupted by the doctor, a phone call, or the nurse. They also say what they really think without the censoring that goes on face-to-face in the office.

The dangers for doctors on the Web are evident. Given only partial information and with little opportunity for clarification and discussion, there’s only so much you can tell patients. The malpractice implications are unclear. Most insurers agree that any doctor who gives a medical opinion can be at risk, regardless of how that opinion is delivered. When the results of the doctor-patient interchange are documented on paper or on a hard drive somewhere, the doctor has to be particularly careful. Disclaimers should abound.

Misery.com was an education for me. Not a day in my office goes by when I don’t bring up something I was asked by some patient in a very similar situation. Patients love to hear that they are not alone in their misery.

R. Steven Singer. Misery.com: My year as an Internet doc.

Medical Economics

2001;7.