A doctor speaks out

"The best doctors are the ones who aren’t afraid to say ‘I don’t know’ or ‘I’m not sure.’ The most dangerous are the ones who think they know but don’t."

      – Anonymous oncologist, Santa Cruz CA

         Reader’s Digest 7/08

Every CFS patient can tell you horror stories about doctors "who think they know but don’t." I’m not alone in having dealt with a doctor who thought he recognized a couple of symptoms and gave me a wrong diagnosis based on that partial information.

What made that doctor especially dangerous was the fact that he thought he knew more than the specialists who’d already given me the correct diagnosis. He took it upon himself to overrule their expertise, to prescribe something the experts say doesn’t work for what I really have, and to blame the patient when treating what I don’t have didn’t cure me.

I told him at every appointment what the experts recommend, and at every appointment he came up with something else he wanted to try first. It became apparent that this was an ego game: he’s the doctor, I don’t have a medical degree. Even if the patient learned from experts in the field, she’s still not a doctor and therefore he doesn’t have to listen to anything she says about expert-recommended treatments. (Although we have patients who are medical professionals, and they also report their doctors playing Blame The Patient. See Dr. Ryll’s history of the Mercy San Juan Hospital epidemic, where CDC investigators concluded the doctors and nurses were "just too lazy to work.")

When the subject of the misdiagnosis came up after the fact, Dr. Thinks He Knows Everything’s explanation was "nothing you said made sense." And that comment made all the sense in the world ... the symptoms I described don’t make sense in the context of what he wanted to diagnose, and he didn’t know enough about CFS to make sense of them. They were specifically intended to not make sense for his desired diagnosis: I know what symptoms differentiate CFS from depression, and I make sure to recite those to be sure that I get the right diagnosis, so that a doctor who might be thinking depression stops short and thinks "that doesn’t make sense" and looks for another diagnosis that matches the symptoms. But, that requires the doctor to know what all the symptoms of depression are, and not just "tired and listless" (depression also requires an emotional component – crying, low self-esteem, thoughts of suicide – which I don’t have).

The very first doctor in 1987 who wanted to diagnose "hypochondriac female" insisted on a psych evaluation; a professor of counseling explained to us that without the required emotional involvement, the symptoms of depression/anxiety were the same as those of physical illness, and since I was running a fever, it would make more sense to him to refer my problem to an MD instead of a psychiatrist, because it sounded to him like I had the flu. In his professional opinion, nothing that was described sounded like a psychological problem. That doctor, too, didn’t want to hear that I had a clean psychiatric bill of health, and was in favor of sending me to as many shrinks as it took to get the opinion he wanted to hear.

As the Griffith/Zarrouf article posted earlier today says, the best diagnostic tool is a good history. They’re not popular among doctors because it takes time to take a good history, whereas you can slap an erroneous depression label on a patient as soon as she says "I’m tired". But "my symptoms started with a virus" will lead you along the path to CFS, as will inquiring into the patient’s emotional state, instead of taking the short-cut of assuming you know what she’s thinking: the circular reasoning that "if" the patient has depression, therefore the patient has the emotional symptoms of depression, and therefore, the patient must have depression, without ever asking the patient about those required emotional components. (As with any other debilitating illness, some patients develop depression as a result of being ill and unable to continue life as they knew it, but again, a good history will reveal that the patient was not depressed until after months of physical illness and reduced quality of life. In which case, anti-depressants can help the overlay of depression, though they won’t do a thing for the underlying physical illness, whether that’s CFS or cancer.)

I have respect for the doctor who told me "I don’t know much about CFS." I have respect for the doctor who told me "I’m not sure what to do for you, because there’s no magic pill." But I don’t have respect for doctors whose ego won’t allow them to say "I don’t know" or "I’m not sure" or "you’ve read a lot about this over the years since you were diagnosed, what do the experts say?"

My current doctor is not a CFS expert – it’s a full day’s journey to get to the nearest CFS expert and my health isn’t up to full days out of bed – but he’s open-minded enough to accept that I’m an intelligent, educated human being who can read English and tell the difference between snake oil and published research. If I bring him a research abstract or an article by one of the experts, he will discuss it with me; I know he’s not going to just write a prescription, we’re going to talk about the pros and cons, the potential side effects, but if I tell him "this expert says to try that pill" he’ll consider it, and not just dismiss it out of hand because it was my suggestion and not his own idea. And that’s really all I ask of a doctor: to admit that he can still learn a few things. Even the experts occasionally get together at conferences to learn from each other.

The problem is, the dangerous doctors will never admit to you or to themselves that they don’t know. They think they know, and therefore, they don’t think they need to seek outside expertise. If you ask them, they will tell you that they know about CFS; it takes time to see the proof that they don’t know as much as they think they do, and by then, the damage may be done.

I can never erase the erroneous comments in my medical records describing the fictional "long history of depression", the lie "never diagnosed by any doctor", the disparaging remarks that I "refuse to get better" so I don’t have to go back to work. The best I can do is to demand that anyone reviewing those records look at other records to try to find where anyone was prescribing all those anti-depressants I supposedly took non-stop for years and years, look at the proof that I was diagnosed with CFS by a CFS specialist in 1988 (and diagnosed again by rheumatologists in 2000, 2001, 2003, 2004...), and read the experts’ comments that support my stance that the reason I didn’t get better was because anti-depressants are totally useless for CFS.

At the time I was accused of not wanting to work, I had a business of my own and a second business started with a partner; what really doesn’t make sense is that accusation that I don’t want to work, because I’ve always either been looking for a job or running my own business. The real problem with work is that, without doctors addressing my actual disease, my health got worse and no one would hire someone who came into their office looking and acting deathly ill (one interviewer described me as "a worker’s comp claim waiting to happen" because the symptoms the doctor refused to see were so obvious to someone who was not in deep denial about the physical nature of my ailment).

As Dr. Katrina Berne writes, "Some problems are just not easily fixed, even when the motivation is strong." Most CFS patients have a strong motivation to get well and return to work, but the lack of proper medication means that their problem is not easily fixed. The lack of proper medication to fix the problem should not be blamed on the patient – it’s a direct result of the fact that many in the medical profession either don’t know or refuse to believe that CFS and depression are not the same thing, and the dearth of research funding resulting from CFS not being taken seriously. (According to Dorothy Wall, "In 2003, more than twenty years after the first CFS patients ... the total federal expenditure for CFS research – from both the NIH and CDC – was still a paltry $16 million. By contrast, according to its own documents, the NIH alone spent $99 million on multiple sclerosis in 2003, an illness affecting half as many people." Yet, the experts are clear that the level of disability in CFS is equivalent to the disability of MS, and therefore, it would seem fair that CFS should receive at least equal research funding.)

And as long as there are doctors who don’t know how to tell the difference between CFS and depression, yet insist on treating CFS patients anyway, there will be patients whose future health is in danger due to the doctor’s inability to say "I don’t know."