Doctors scare chronically sick patients too

Dr Rob, an American primary care doctor (or GP), recently published a “letter to patients with chonic disease”, quite an interesting article in which he informs them that doctors are actually scared of them because they remind the doctors of the limitations of what they can do, and because they often come on too strong:

We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

I got tweeted this by Ricky Buchanan, who runs a site for those with ME and commonly related illnesses (as well as a Mac accessibility site); she has been bedridden with likely ME for some years although she has recently made some progress. (Her open letter to those without … group of articles is worth reading, particularly in this context.) It then got picked up on the FWD/Forward site, and the comments there were uniformly negative, with Nightengale, a “patient and health care provider”, commenting:

The “letter to patients” article makes me feel ashamed of my profession.

It is not the job of the patient to make his or her doctor feel better. It is not the job of the patient to avoid making the doctor feel out of control. It is not the job of the patient to avoid scaring doctors.

Rather, it is the job of the doctor to learn to care for patients with complex, puzzling chronic conditions. It is the job of the doctor to learn to share control with the patient rather than need to be in control at all times. It is the job of the doctor to learn to respect the patient who comes in with knowledge and questions and ideas and to not feel threatened by patients who take that approach. It is even the job of the doctor to get a reasonable grasp on a situation without those years of prior knowledge of the patient, when circumstances require, such as in the ER, and to provide adequate and respectful care.

What I noticed glaringly missing from Dr Rob’s article was any acknowledgement that some patients might actually be scared of doctors, and have long and traumatic histories of mistreatment by them. Some patients don’t have a great deal of patience not because the doctors haven’t been able to cure their fatigue, pain or whatever instantly, but because they have been treated arrogantly or dismissively, and told their illness is all in their minds. In the worst cases, there have been children taken from their families in dawn raids because doctors (who didn’t believe in the child’s illness) convinced social workers that the children were in danger, and subjected to all manner of terrifying treatments while they were paralysed.

I am principally talking about M.E. patients here, although I am sure there are those with other conditions who have had their health messed up by those who should have been helping them. Dr Rob doesn’t mention that particular condition (not even as CFS), but the way so many patients were flatly disbelieved and treated as if they were simply malingering when they were terribly ill and in a lot of distress, often when they were children, did so much damage, not only to their trust in and attitude towards the medical profession but also, in some cases, to their own health.

It’s difficult to see how a doctor can be scared of someone who’s so debilitated that they can’t get their head off the pillow and who can’t talk. Such a person has a lot to fear from a doctor, in fact (in the case of one young woman in England that I know of, this included broken bones and a punctured lung). Perhaps most of Dr Rob’s patients haven’t experienced anything this extreme, but maybe they’ve experienced a great deal of frustration and disrespect, and as one of my friends said when I showed her his letter, “I have always shown doctors respect and it hasn’t made a lick of difference when they get to the point that they don’t know what to do. Chronic pain is a tad harder to deal with than a bruised ego”.

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