Doctors

As you travel the road with CFS, you will learn some important things.

(1) There are those people who will believe that the doctor is always right, and

(2) doctors are only human and humans make mistakes.

Dr. Groopman’s book discusses the many ways that doctors make mistakes, errors in thinking, and one of the most common is "diagnosis by stereotype".

The first time I saw a doctor for CFS, I was newly-married. Being of the older generation, he instantly saw the problem: he assumed that I’d gotten married with the expectation of quitting my job and now my husband wouldn’t "let me". Didn’t factor into his thinking at all that my new husband was a full-time student, and I’d have to be pretty stupid to turn down the lawyer I was dating the year before to marry someone who’d be a student for another couple years, if my goal in getting married was to stop working.

My husband had come into the appointment with the intention of backing up what I said about the objective symptoms. But he was raised that the doctor is always right, and therefore, when the doctor said I was imagining things, my husband was easily convinced that he was also imagining things. All those things that he had seen and heard for himself could be disregarded because the doctor said they never happened.

My boss, on the other hand, was not so easily brainwashed. Making a career in litigation, you see a lot of medical mistakes. His reaction was "how can he say it’s nothing?" given all the objective symptoms my boss and other co-workers were noticing. If the doctor wasn’t doing anything, how did he expect me to get better? If the doctor couldn’t see these problems, he needed to look again, because they were that obvious to the people around me. My boss kept after me to keep looking for answers because there was clearly something very wrong with me physically, no matter what the first doctor said.

Unfortunately, the first doctor having planted the seed that I simply didn’t want to work was all it took to affect my marriage. Even after getting the CFS diagnosis from a specialist a few months later, it weighed on my husband’s mind that the doctor said I didn’t want to work. Therefore, when I asked for help around the house, that must mean that I was just too lazy to do the chores myself, because the first doctor said I wasn’t really sick, and "doctors are never wrong".

Because patients usually don’t go back to doctors they’re dissatisfied with, the doctors rarely see the results of their mistakes. Support groups do: the broken marriages, the permanent disability, the endless poverty because the patient didn’t get the right help in the crucial period where it would be most effective to reverse the relapse.

Anti-depressants have been repeatedly proven useless against CFS in research settings. Yet, that’s all a number of doctors were willing to give me, even those who diagnosed CFS. When I didn’t get better, it wasn’t their fault for giving me the wrong pills, it was my fault for "not wanting to get well". Again, the doctors’ attitude begs the question, why would someone with no other means of support except her own working make the choice to not work? Do I truly look that stupid that I would choose to live in dire poverty when I have the option of living quite well on a paralegal salary?

Never mind that at the very time that they claim I said "I don’t want to work", I was in fact running my own business. It wasn’t particularly successful, because I wasn’t getting the medical help I needed to be able to work effectively: my business partner counted up 17 days in one month that I e-mailed her that I could not work on my half of a project due to a blinding headache. Other days that month, I could work 5 minutes out of an hour before I had to lie down on the verge of passing out. What my business partner was seeing was not someone who "doesn’t want to work" but rather someone who was trying to work against the odds and could not succeed because the doctors were doing precisely nothing to deal with her symptoms.

Funny how the people around us see very different things than the doctors do!

Doctors (and judges) who want to see depression, anxiety, desire for alimony, or something else, will discount the patient’s reports when they don’t match up to what the doctor wants to hear. I was told "nothing you said made sense", not because what I described to the doctor is incompatible with CFS, but because he was looking for depression and the symptoms I described contradicted what he wanted to hear.

This attitude is amply demonstrated by a study in which the patients’ reports of their pre-illness activity level are corroborated by friends and family, and the study authors devoted much of their page count to explaining why these substantiated reports could not be believed – it’s not that the reports are not true, but that they are not what the doctors expect to hear, andtherefore, must be discounted in order for the doctors to reach the conclusion they want to reach. (A case control study of premorbid and currently reported physical activity levels in chronic fatigue syndrome BMC Psychiatry 2006, 6:53doi:10.1186/1471-244X-6-53 http://www.biomedcentral.com/1471-244X/6/53)