This is the February edition of the “Patients for a Moment” blog carnival.

Literacy (noun): the ability to read and write; competence and knowledge in a specific area

How much should a chronic patient be expected to understand about his own medical condition? How much information are medical practitioners expecting him to bring to the table?

I’ve had conflicting opinions on this. I’ve had extremely fruitful conversations with doctors like Drs. Leo and Samuel where I’ve attempted to talk in their language. Gregory helped me put together a medical resume of my medical history that I’ve faithfully carted around to medical appointments for the past year or so. I find myself calling Dr. Bryan or Elliot when something comes up and I’m confused. At the same time, I’ve also worked in a hospital before. I remember those patients who thought they knew what they were talking about… but really didn’t. We had a name for them: annoying.

Barbara of In Sickness and In Health discusses the importance of researching your own condition. She deals with the fine line between being informed and being paranoid. It’s useful to know what the key terms are and what signs one should look for. At the same time, it’s awfully easy to fall into medical students’ disease where one thinks one experiences the disease currently being studied!!

Toni at Turning Straw into Gold talks about the ways in which one can approach internet research and how to bring up issues to your physician or medical practitioner without being snobby. I found her concept of diplomacy helpful.

Aviva of Sick Momma discusses why she started becoming mistaken as a medical professional. Simple knowledge of what has already been done gives command of the situation, which can save chronic patients from going around and around in circles, repeating the same (pointless) diagnostic tests.

Lydia of A Path through the Valley talks about medical literacy as a way to embrace your own identity. As a chronic patient, chances are that you’re the one who has to live with the consequences of it day in and day out. Maybe it’s a good idea to have a clue what it is you’re living with??

From the opposite perspective, Emma at Your Doctor’s Wife tells how the assumption of medical literacy can lead to some interesting conversations.

And Dr. Bryan shared on a social networking site a fantastic story about how medical literacy isn’t always everything. Medical professionals are trained to look for certain things and ask certain questions. If you’re coming at a problem from a different perspective, chances are that not only will you miss something they’d see but that you’d also see things they’d never think to take note of. And that can be important in the field of medicine, especially if you’re facing a disease that you’re going to be dealing with for a long time.

All in all, I gather that the consensus is that being an informed citizen can be useful. If nothing else, it can give you confidence in an immensely confusing situation (when it’s not making you quake in your boots.) I’ve found that finding information and asking questions can be useful; I like being able to have conversations with medical professionals about this new info and new questions. I also find that having a medical resume and being in command of your care makes sure that you don’t get swept under the rug in the 5 minute check-ups. And, it’s always fun to have a laugh at the ridiculousness of the medical profession. Not that any other profession doesn’t have its weaknesses… but it’s good to laugh every now and then.

Abigail Cashelle

Disclaimer: I didn’t get very many submissions, so I was expansive in what I considered to be submissions. I hope that this paints a fuller picture and also is helpful to those of us who, for reasons out of our control, have to face this issue fairly often.

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