In Praise of the "Difficult Patient"

An essay originally published in the journal Health Affairs and reported in Science Daily last month raised an issue that needs a lot more discussion both among us folks with diabetes and within the community of doctors who treat us.

The report is here: Science Daily: Survival Instincts Propel 'Difficult Patient' To Insist On Quality Care.

"Difficult patients" turns out to be patients who do not accept mediocre care from unconcerned doctors. They are patients with serious symptoms who want a better diagnosis than a shrug of the shoulders--patients, in short, who demand that doctors do the job they are being so very well paid to do.

Doctors loathe these "difficult patients." They are quick to label any patient who challenges the level of care they receive with an unpleasant psychiatric label. One such label is "hypochondriac." This term is used to describe a person who imagines they are sick when they are not. If you are labeled with this label, your chances of getting decent care from the doctor applying the label drops to zero.

Many of you have been labeled hypochondriacs. I certainly have. Around the time I discovered my blood sugars were extremely high, I had a doctor who told me that blood sugars that rose into the middle 200s after every meal were "nothing to worry about" and that it was "obsessive" for me to test my blood sugar after eating. Because she refused to diagnose me correctly as having diabetes, I was unable to get any insurance coverage for the blood testing strips I needed to start learning how to control my blood sugar.

Fortunately for me, by the time this happened, I already had a lot of experience with mediocre doctors whose misdiagnoses had hurt both myself and my kids. I was also lucky enough to stumble upon Dr. Bernstein's "Diabetes Solution" book, which made it very clear to me how abnormal my blood sugars really were. So I found different, better doctors and have pushed them ever since for the treatments I needed to keep my blood sugars in the healthy range.

But most of my first doctor's patients who had blood sugars like mine probably were relieved to learn they were "fine" and did not take it any further. I'm sure that the doctor liked them a lot more as patients than mine do. But I'm also sure I'm in much better shape a decade later.

I'm far from being alone in this. Many of you have written to me about doctors who refused to diagnose you, even when you had demonstrably abnormal blood sugars. You write me about doctors who refused to refer you to specialists when they were clearly out of their depth dealing with your diabetes. And many of you complain about doctors who implied that you were a bit "mental" because you won't settle for an average blood sugar of 180 mg/dl and an A1c high enough to guarantee complications.

Now a study published in a psychology journal, Psychosomatic Medicine, quantifies the damage done by doctors who write off "difficult patients" as hypochondriacs.

Anxious Temperament and Disease Progression at Diagnosis: The Case of Type 2 Diabetes

To fully understand this study, you have to understand that the term "anxious" when applied by a psychologist is a loaded word which suggests that the patient is not mentally healthy. If you are diagnosed with "Anxiety", most psychiatrists will prescribe a powerful psychoactive drug. In addition, it is one of those diagnoses which is much more likely to be applied to females by male practitioners.

What this study found was that "anxious" patients had much better A1cs at time of diagnosis than did those who were supposedly more well-adjusted. As Diabetes in Control (who had access to the entire publication, not just the abstract) reports, "those with more anxious temperaments were diagnosed at an earlier stage compared with their more relaxed peers. The relationship was particularly strong among younger people, who do not normally undergo routine screening for diabetes. The patients who were diagnosed early were also more likely to have better control of the diabetes, regardless of their age."

Lower A1cs translate into fewer complications and heart attacks. This is good. But the doctor who dismisses the "anxious" i.e. concerned patient--often female--as a hypochondriac will miss the diagnosis in these patients or will ignore it, depriving them of the care that could help them keep those A1cs low over time.

So here's a thought to keep in mind: if your doctor only diagnoses or treats diabetes in patients who arrive in his office with neuropathy and retinal changes, who are peeing all the time and losing weight because their blood sugar is always above 300, you would do well to be as anxious as possible. And you should also do what you can to make sure that kind of mediocre doctor continues to think you are a hypochondriac, because the only time that kind of doctor will take you seriously is when his poor doctoring has led to your developing undeniable diabetic complications.

Many people with diabetes who were not sufficiently anxious get their first diabetes diagnosis in intensive care, after their heart attack. Even more tragically, some get that diagnosis when they suffer a serious wound that won't heal, which may even require amputation.

You do not want to be one of those people. It is much better to be labeled "Difficult" or "Anxious." And it is even better when you have been labeled (and treated) that way to find a new and better doctor who will work with you to make sure that you never develop the complications that make diagnosis so easy for out-of-date doctors.