That's an interesting summation and upon seeing the guidlines you posted, I agree with your parallels. I've been getting a victim-blaming feel from the letter, although I have other issues with thinking of people with chronic illness as victims. But certainly, the effect is simililar in that it places the onus on the person in the relationship with less power while enabling the system that maintains the other person's power.
My thoughts, as both a patient and physician, have been posted in several places, and I am trying to get my language right before posting it to his letter directly. Here's a repost of my most recent version, posted this AM to
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That's an interesting summation and upon seeing the guidlines you posted, I agree with your parallels. I've been getting a victim-blaming feel from the letter, although I have other issues with thinking of people with chronic illness as victims. But certainly, the effect is simililar in that it places the onus on the person in the relationship with less power while enabling the system that maintains the other person's power.
My thoughts, as both a patient and physician, have been posted in several places, and I am trying to get my language right before posting it to his letter directly. Here's a repost of my most recent version, posted this AM to <a href="http://www.butyoudontlooksick.com/boards/search.php?search_id=newposts>"But You Don't Look Sick."</a>
"I'm a doctor when I'm not a spoonie - except, of course, that I'm always a doctor and always a spoonie. I find his letter extremely problematic in that it acknowledges the difficulty physicians traditionally have with patients with chronic, complex conditions while placing the burden of responsibility for this difficulty on the patient rather than addressing the system which enables it. I hesitate to use the term "victim blaming" only because I dislike the model of patient as victim, but the effect is similar to that in blaming the person with the minority experience for the mistreatment they recieve from the majority.
I've posted my thoughts on several other websites - appologies to anyone seeing this multiple times."
"The discomfort doctors experience when caring for patients with disability - I don't know the chronic illness literature as well but I suspect it is similar - is well documented. There are classes taught to medical students in communicating with patients. However, these classes, even at best, tend to treat the patient as the "other" in the situation and rely on a helping model rather than a team approach model.
I have not found that most patients with chronic illness, or their families, see the physician as god-like. I have found they - we - are generally aware of their doctors humanity, and their doctor's discomfort with their care. To compensate, many have become extremely knowledgable about their individual conditions and about how the condition affects themselves as individuals. Many have learned to come to medical appointments armed with information, details of prior treatments, lists of questions. Some are adversarial or resentful due to prior maltreatment. Many physicians are uncomfortable with the informed patient. Many see the preparation as a challenge to their knowledge and authority.
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.
Instead of presuming to instruct his patients on how they should behave in a nice, non-threatening manner at all times, imagine if this doctor spent the time and energy to train his colleagues on how to better care for patients with chronic conditions. Imagine if he taught his colleagues to respect the patient who comes in with lists and questions. Imagine if he sent this letter to his colleagues and encouraged them to examine their own attitudes and misconceptions about chronic illness and disability and to educate themselves to provide better care. Just imagine."
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26/7/10 17:21 (UTC)My thoughts, as both a patient and physician, have been posted in several places, and I am trying to get my language right before posting it to his letter directly. Here's a repost of my most recent version, posted this AM to
My thoughts, as both a patient and physician, have been posted in several places, and I am trying to get my language right before posting it to his letter directly. Here's a repost of my most recent version, posted this AM to <a href="http://www.butyoudontlooksick.com/boards/search.php?search_id=newposts>"But You Don't Look Sick."</a>
"I'm a doctor when I'm not a spoonie - except, of course, that I'm always a doctor and always a spoonie. I find his letter extremely problematic in that it acknowledges the difficulty physicians traditionally have with patients with chronic, complex conditions while placing the burden of responsibility for this difficulty on the patient rather than addressing the system which enables it. I hesitate to use the term "victim blaming" only because I dislike the model of patient as victim, but the effect is similar to that in blaming the person with the minority experience for the mistreatment they recieve from the majority.
I've posted my thoughts on several other websites - appologies to anyone seeing this multiple times."
"The discomfort doctors experience when caring for patients with disability - I don't know the chronic illness literature as well but I suspect it is similar - is well documented. There are classes taught to medical students in communicating with patients. However, these classes, even at best, tend to treat the patient as the "other" in the situation and rely on a helping model rather than a team approach model.
I have not found that most patients with chronic illness, or their families, see the physician as god-like. I have found they - we - are generally aware of their doctors humanity, and their doctor's discomfort with their care. To compensate, many have become extremely knowledgable about their individual conditions and about how the condition affects themselves as individuals. Many have learned to come to medical appointments armed with information, details of prior treatments, lists of questions. Some are adversarial or resentful due to prior maltreatment. Many physicians are uncomfortable with the informed patient. Many see the preparation as a challenge to their knowledge and authority.
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.
Instead of presuming to instruct his patients on how they should behave in a nice, non-threatening manner at all times, imagine if this doctor spent the time and energy to train his colleagues on how to better care for patients with chronic conditions. Imagine if he taught his colleagues to respect the patient who comes in with lists and questions. Imagine if he sent this letter to his colleagues and encouraged them to examine their own attitudes and misconceptions about chronic illness and disability and to educate themselves to provide better care. Just imagine."