I’ve been lurking through discussions here on tudiabetes for quite some time now. Occasionally I comment or post but I mostly read. Recently, I have been struck by the amount of power that we give our medical providers, including Endocrinologists, Diabetes Nurses, General Practitioners, Nurse Practitioners, GI docs, etc. In comments and discussion on this website the sense that medical professionals know more and have all the answers stands out to me. Occasionally I have noticed push back, bucking the system, seeking of second opinions, but far more I see PWD regardless of type carrying some kind of guilt along with blood sugars gone wrong and other ailments. It is my hypothesis that medical providers assign us this guilt.
I recently had several doctors be very unprofessional with me. I am not sure what to do about it. I want to buck the system, but its as if a little voice inside my head is saying, “What if they are right?” even though I know because of a little thing called logic and in my soul and every fiber of my being that I am right. Because I am the customer. And I know me better than anyone else knows me…except for my mother; she knows me just as well (maybe a little better) than I know myself. Also, I am brilliant. I am not even going to try to be modest. I left high school at 15 and went to college. I go to a private university. I am very well educated. I read constantly. Through my school library website I have access to the most recent cutting edge medical research out their right now; a click away. I read about diabetes, diabetes and celiac, diabetes and other autoimmune conditions, autoimmune disease in general, and what I have found through all of this reading and researching is that the medical and scientific research community doesn’t know nearly everything there is to know about autoimmune conditions, including diabetes. We know that it happens, we know how to manage diabetes through advances in technology and the invention of injectable insulin. What we don’t know is why.
Why?
That question has been plaguing my thoughts, because the answer to that question is the cure to autoimmune conditions. We know a little bit about how autoimmune diseases are triggered, a virus, a toxin, an allergy; maybe? But really, we don’t know. Doctors don’t know, scientists don’t know, “they” don’t know.
It is a pretty profound realization for me coming from a society that puts men in white coats on pedestals. Sometimes women in white coats too, but honestly as soon as “healing” (and I use that term loosely when referring to modern medicine) became a profession men took over.
Every time I walk into a doctor’s office and I start asking questions about science and research and how human bodies work I am met with a lot of resistance. Because apparently a little girl like me at 19 shouldn’t worry her pretty little head with those notions! “Just take your insulin. That’s all you need to know” is implied in every doctors visit.
I am really confused with the way people with d are categorized. It seems to me from reading these forums that within the “types” of diabetes there is innumerable variation from one person to the next. It would seem that there is more of a spectrum of diabetes as opposed to hard and fast “types.” Take Type 1.5 for instance, or MODY. Even straight up, type 1s experience vastly different reactions to different types of insulin, foods, exercise, and different levels of control even when managing their condition in the same ways. Why can some people eat rice and have success with their bs remaining stable and others would be reeling for hours if not the rest of the day from a small amount of rice? Or pizza, or ice cream, or bananas? Medical science doesn’t seek to answer these questions that I feel are important. We have all experienced this. I have read discussions about some people who can bolus, eat ice cream and the insulin in their bodies metabolizes the glucose from the ice cream perfectly. Others have some success with “dual wave” or “combo” boluses or temp basals. Others cannot tolerate it at all. I could just as easily use another food, like cucumbers or whatever, as an example and the results would be the same: some people would be able to bolus for the 5 grams of carb or whatever that is in a couple of cucumbers while others (like me!) would be shocked to find that a cucumber had raised their blood sugar 20 mg/dl or something outrageous! That’s fine with me (because I’ve never particularly liked cucumbers anyway) but something is going on here. What is it?
Why?
Why?
Why?
I feel like I know the answer. What I don’t have is scientific proof. My logical brain is going “for different people at different times in their life and under specific conditions certain foods are better for them and certain foods are worse.” And its complicated. And it changes. And there is no one size fits all eat vegan/paleo/whatever-fad-health-food-diet-and-you-will-be-healthy answer. There also is no such thing as eating “normal.” Well, socially there is but from a health perspective, no! I look at the propaganda put forth by the US Food and Drug Administration and their cute little pyramid telling everyone what they should eat and it just blows my mind!
I guess there is a lot I don’t understand. But I know what I know, and I know what is right for me and if I don’t know I certainly know how to figure it out. Because I am not a moron. I am not just going to lay down and take what they give me, whoever the proverbial they is.
This post ended up in a very different place fromwhat I intended. I came online to seek answers for what I should do about doctors who are pushy and unhelpful and rude and try to make me second guess myself. I feel like I need to go get a medical degree and be a radical but I don’t want to be taught to treat patients as noncompliant, non-entities who must be told what to think and do, and anytime they show agency you must shoot them down because otherwise they might ruin the facade!
I am so conflicted and would like some advice from the community because all of us as patients are affected by this.
I leave you with the lyrics to The White Stripes “Girl, You have no faith in medicine”
Girl, you have no faith in medicine
Oh girl, you have no faith in medicine
Acetaminophen. You see the medicine, oh girl
Is there a way to find the cure for this implanted in a pill?It’s just the name upon the bottle, which determines if it will
Is the problem you’re allergic to a well familiar name?
Do you have a problem with this one if the results are the same?
Acetaminophen. You see the medicine
Oh girl, you have no faith in medicine
Oh girl, you have no faith in medicine
Acetaminophen. You see the medicine, oh girl
But girl, you have no faith in medicine
Acetaminophen. You see the medicine, oh girl
Well strip the bark right off a tree and just hand it this way
Don’t even need a drink of water to make the headache go away
Give me a sugar pill and watch me just rattle down the street
Acetaminophen you see the medicine
Oh girl you have no faith in medicine