Real-Life Medical Mysteries: Not Like They Are On Television

The New York Times runs an ongoing column called Diagnosis which I read occasionally, featuring tales of patients with complex medical mysteries that take weeks, months, or years to unravel. The stories are interesting and they feed my fascination with medical practice, and they’re also a fairly accurate description of the frustrations involved in getting to the bottom of medical problems; the columns manage to hint at the amount of time and work it can take to figure out why someone is unwell, and to decide what to do about it from there.

A far cry from depictions of medical mysteries in pop culture, where the problem is usually resolved in a single episode, because something stretching over multiple episodes would be boring and criticised for dragging. The fact is that real-life medical mysteries are actually very boring and draggy, until they are not, because something catastrophic has happened, and then things get boring again, and they they get scary, and so forth. It’s a rollercoaster that in some cases never lets up because a diagnosis is never reached.

Not everyone has the happy ending of the House character lying weakly in the hospital bed who gets a final diagnosis, a treatment, and a happy walk out the door or at least an implied promise of such. In the real world, people may be ill for extended periods of time and they don’t know why, even when they are working with expert diagnosticians and they are doing all the right things. You can’t test for everything, as television sometimes shows viewers, and some diagnoses are about a process of elimination more than an active process of testing to find out what a patient has.

Chronic pain and fatigue are perhaps two of the most common examples of medical mysteries. People start to feel pain, and they are tired, all the time, but there’s no clear cause, despite all the testing available. Patients with chronic conditions often have to battle to be seen, to have their symptoms acknowledged, to get treatment, to meet with a doctor. They are told over and over again that it’s all in their head and they are making it up. They are referred to counselors and psychologists who want to discuss their feelings, rather than pain management specialists who could help them not be in pain.

Being trapped in the land of being sick with no diagnosis is not a fun place to be. A diagnosis can be a great legitimising agent, because it’s the thing you can use to explain why you are sick, though not all diagnoses are created equal. People sneer at fibromyalgia and chronic fatigue syndrome, for example, while leukemia is accepted as a valid reason to be fatigued and in pain all the time. Some people don’t even have a stigmatised and mocked diagnosis to make them feel less alone, to help them find a community so they can affirm that something really is happening to them and they really are sick.

All they have is medical records that go on for reams, and hours of visits clocked in various doctor’s offices, and endless test results, with no clear outcome. They may know what they do not have, but they do not know what they have. They know they are ill, and can describe what that feels like, but they do not know what that illness is or how to treat it. They fight the symptoms in the hope that this will make them feel less ill and more functional, but they don’t always get help with fighting the symptoms; why continue to prescribe narcotics to a patient who ‘claims’ to be in pain but doesn’t have a diagnosis, after all?

The pop culture vision of diagnosis sometimes admits that it can be tricky, and House probably does the best job of this, given the focus of the show. Sometimes we get a chance to see patients talking about how hard they had to work to see Dr. House and how they’ve been struggling for years with a chronic illness and no resolution. But the case is almost always resolved over the course of the episode, after a few false starts and some dramatic experimentation. In the end, the patient always gets a resolution and a diagnosis and things end on a note suggesting that diagnosis is possible.

Except that sometimes, it isn’t. People seeing medical dramas like House may have trouble understanding why friends and family are just ‘sick,’ with no clear diagnosis. As a friend of mine jokes, ‘I have syndrome.’ People come to the conclusion that someone who is sick needs more tests, should see another doctor, just needs to work harder to find a diagnosis, like it’s a purse left behind at a restaurant. ‘Did you call the day staff to see if they found it? Have you checked the lost and found? Does your phone have GPS, can you track it?’

Or they think that someone must be making the illness up. Someone who doesn’t want more testing and doesn’t want to go to another doctor and is tired and needs a break may be informed that obviously this is faking, because anyone who was ‘really’ sick wouldn’t stop without a diagnosis. Would keep trying until a treatment became available. Wouldn’t use ‘sick’ as an ‘excuse.’ Sometimes there is no clearly defined end, no solution, no resolution. You’re just sick, and you don’t know why.

Medical mysteries in pop culture would be a lot less rewarding for viewers if they ended more like real-life mysteries.