This is one symptom of the disconnect between diabetes patient and doctor. As long as they view us a the subject of their professional interest, they fail to understand the fuller context of our existence in our everyday world.
Our diabetes exists within our family, student, work, hobby, spiritual, and emotional lives. Some docs are more naturally empathic than others and they do get us. Most however are simply ignorant about what we face in the world each day as we occupy many roles and try to pay attention to our diabetes.
I don’t use "ignorant’ in a bad way here; we are all ignorant to some extent. Unfortunately, I don’t think our diabetes docs understand the nature and depth of their diabetes ignorance.
I know you’ve suggested that our doctors would be well served shadowing a diabetic through even one weekend. I agree that that would help. I also think that the professional doctor associations should make some room for patients at their professional meetings.
I’ve had a personal fantasy of a robust computer diabetes simulator that would allow for insulin dose timing and size, meals broken down by their macronutrient constituents, and exercise. This simulator would allow plenty of time for the user to select inputs but then would play out in accelerated time to show the BG trace of their expert decisions. I’d love to see the output of this simulator in a giant screen visible to their professional peers.
Our docs give us all kinds of treatment guidance and advice but rarely get the real feedback about what their recommendations mean in the real world. I would love to see other diabetes professionals use this simulator, like dietitians, nurses, and diabetes educators.
The “game” we play with diabetes is much more complicated than most doctors appreciate. I think a simulator like I describe would not only elicit some appropriate humility but also provide valuable lessons.
I admired the wisdom embedded in this concise slogan I read recently in a diabetes advocate context:
Nothing about us, without us!