I have no faith in medicine

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.


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?


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

Nice post! It’s cool to see the thought and consideration put into your words.

A couple thoughts I’d share (even though I’m not brilliant):

Time will make you wiser, but probably not more brilliant. Thus, patience is key.

Health & happy survival for PwD comes from successful manipulation of the health care system. If your personal circumstances (finances, brains, health insurance, etc) allow you can live a very rewarding and full life with diabetes. If all these circumstances are positive for you, consider philanthropy and give back to the diabetes community.

Trust the scientific method. Trust medicine. Question the institutions.

The White Stripes rock.

Thank you for your words of wisdom. :slight_smile: It just gets me so down! And frustrated! I feel powerless, you know? Thanks for your suggestions though, and I do hope to be in a position where I can give back to the community one day.

And The White Stripes do rock. :wink:

I agree with you, I’m 71 and am often treated like the little old dumb lady, which infuriates me. Whatever we think or feel we still have to take our insulin, pills, test ourselves, eat to our meters, etc. It is all we can do, the guilt trips that are imposed on us by others have to be ignored. We can check out advice given us through reading, searching on the net and just thinking. I see no advantage in following things that are good for diabetics in general when it is such a personal problem. Keep going, keep smiling, and hold your tongue sometimes but never your thoughts. Just ask and ask and ask for clarification on what information is given you, don’t let them get away with careless and slack thinking, after all we pay for all this stuff.

I have not experienced my doctors or providers assigning guilt to me. For all the years I’ve been diabetic, I seek treatment, advice, support, and the rx’s I need to survive. The research, science studies and cures won’t likey come from my doc, so I don’t hold her responsible to answer my desire for a cure. I respect also that doc might not have slotted an appointment where a biolgoy lesson was the topic. I would change docs if mine said, “Just take your insulin, that’s all you need to know”. I have been fortunate to find docs who “help” me manage my disease, not hold me responsible for it so I know they are out there. I hope you find the answers you seek.

As you say diabetes is a disease with tremendous variations from person to person. It is unfortunate that T1 and T2 share the same name, as they have almost nothing in common, beyond an inability to properly metabolize carbohydrates. If you spend enough time here you will hear numerous horror stories of misdiagnosis, inappropriate treatment etc. I think there is a desire to dispense a pill or recommend a diet, fix the problem and then move on to the next patient. Also I believe this is what many, perhaps most, patients want. When this doesn’t work many just blame the patient, it’s way easier.

But you will also find people here who love their docs and have a good working relationship, so these doctors and other health car professionals are out there. Perhaps it’s time to move on until you find professionals who are not threatened by an educated, independent thinking patient, and are willing to work with you.

With so much variation in the disease a pragmatic approach, that acknowledges we don’t understand everything there is to know, will be more successful in the end. Science is always a work in progress and an effective health care professional needs to keep up with the latest developments. However, many are pressed for time and find this difficult.

Some doctors think they drive the bus, when actually they’re just tour guides. The important thing is that you know on all levels that YOU are driving the bus, and if some “tour guide” with an MD decides to point you in a direction you know to be wrong (whether they do this through arrogance, ignorance, or inattentiveness, it happens a lot), then it’s up to you to remind them of their place and to turn the bus in the direction you know it should go. There’s a little voice of wisdom in all of us that tells us what we need – more of us should listen to it. That you’ve come to this conclusion so young shows that you really are brilliant, yes… but age & experience are what will teach you what to do with that knowledge.

I have often told people that your diabetes is NOT my diabetes. Of course I am wrong according to them. Some people can eat dark chocolate and it doesn’t nothing, I look at it, and my number soar. Diabetes although is not rocket science and on any given day you can be in control or out of control. I totally agree that the med community doesn’t know everything about this disease, even if they have it also. So it’s a matter of our educating them about us, and then listening to what they say, if it makes sense and gives the desired result, great, if not. I have often told them no…here is another idea. But very few people have that kind of courage. Let’s face it they may be the guides, but they have them pens and paper too for meds and such.
I visited with one doc in my search for a new one, who straight out told me if I didn’t do exactly what she wanted, I could go elsewhere, which also meant that I couldn’t be seen by any of the docs in that practice. GREAT…Thankfully I have found one that allows me the freedom of my intelligence and listens to my ideas and thoughts before asking questions…we work at this together. They are not usually the bad guys, they are just people putting their pants on one leg at a time…fortunately, we are still in control of our own treatment, if we so choose.

I share your perspective. I was anti-medical even before dx, so I have really struggled with being snared by the medical-insurance system. I manage my T1 just fine, thank you, and I only go in because I cannot get my meds otherwise.

I can’t begin to address a tenth of what you bring up in your post! You clearly ARE intelligent, and your thinking is a wonderful thing, even if your docs don’t think so! What did/are you studying in college?

Anyway, my approach to diabetes has always HAD to be independent because I’m an outlier, and don’t fit into the standard boxes. You are more astute than most doctors in recognizing that diabetes comes in a lot more varieties than the types they have defined, and a lot of us are assigned “garbage can” diagnoses, because the docs can’t figure us out.

So I’ve been on the internet for about 20 years now, and done a LOT of reading of professional articles (haven’t found all that many that impress me), and have been EXTREMELY fortunate in having doctors who will work with me. When, after a couple of months, it became apparent that the oral meds weren’t working, my doc had no hesitation in letting me go on insulin when I asked, although I doubt he would have suggested it himself.Then he had to go through all the “Type 2” stages before coming to the conclusion that I needed MDI. It took some convincing (like putting MYSELF on the pump, an old one given to me by a friend who had gotten a new one) to get him to cooperate with pumping, but he came around. I guess I’m trying to say that you have to be totally proactive, and find a doctor who will cooperate. They ARE out there!

The other thing that has supported me all the while is that the Diabetes Online Community is extremely supportive, and there are some incredible members who know a LOT about the state of the science. It’s fascinating to watch them discuss and debate with each other, and they usually make much more sense than the “media”, especially the ADA or the Mayo Clinic or what have you. Science moves slowly, and there are always stick-in-the-muds, and I DON’T think you are going to get an answer to “why?” for a long time to come, unless you discover it yourself. Which is another reason to be proactive – you only have one body and one life – you have to live it with incomplete knowledge, so the best you can do is be as knowledgeable as you can, and do what seems right to you. Things may change radically in 200 years, but that’s not going to do US any good! Of COURSE I’d like to know why I have diabetes (and I’d like a cure even better), but no one can tell me, and I’m not even going to bother people who surely don’t know. Just gotta live with it, and do the best I can.

This post rocks, and so does your White Stripes comment.

Yes, excuse my French, but I agree with you – no one really knows what the f**k is going on. We can just be happy that insulin therapy exists, because those of us who rely on it wouldn’t be around without it, but yeah – if you wanna go for a medical degree and be a radical doctor/researcher for this particular subject and anything else that might be related, I for one would will totally support you in that! The medical field, just like any other, can use a shake up.

I sort of agree although I have had different experiences with doctors, perhaps because I haven’t ever really discussed anything with them? I get ok results and, for the most part, they have left me alone. This has changed a bit recently and, through the nurse who is the email point of contact, I am now getting directions such as “turn down your basal rate” as I have pretty frequent lower BGs (largely by choice, 70s to me are the goal, not a problem…). It may also have something to do with running a lot but I dunno about that either.

Now it’s “crunch time” as they are wanting me to fix the AM carb ratio to wipe those lows out however a lot of the lows are likely because I bolus for like 25G of carb and eat like 15-20 most of the time, to hedge my bets after 23 years of DP? I am not quite sure how to explain all this but I am thinking emails w/ the nurse are not likely to be useful. I suppose the only alternative would be to make an appointment to talk to the doc but, after the cardiac bizarre event, I am doctored out for a while. I’ll slack off on emailing her back and see what happens for a while. I also had emailed them my Garmin logs of running which likely influence some of the BG numbers a bit. I don’t feel like getting into a flamewar though?

I’ve always said that people in the health care system can’t know as much as they think they do because they don’t live with D 24/7. I guess that is why I like Dr. Bernstein’s book so much. As you said, we have to take control of our own treatment and hopefully we will find a dr who will agree with us.

You say you are confused. Sorry to say, but sometimes research does that. As we all know, we do no react the same to foods, meds, etc. Sometimes the more we know the more confused we get. At those times we need to step back and rely on our bodies. We need to see how WE react not how others do.

Just remember, it’s not WHY but HOW. We may never understand why a food effects us one way and someone else another. But, we can understand we can learn how foods effect us.

You just have to let them know that you don’t consider those numbers low, and that you are actually trying for them.

The problem is that they’re likely to say “Whassamatta, you crazy, man?” I recently had a PCP APN tell me not to aim for an A1c lower than 6.5 because of the ACCORD study. She was unaware of the flaws in the study. Well, I didn’t argue with her, and am aiming for normal A1c’s anyway. What’s she gonna do – shoot me if I don’t get it up to 6.5?

I’m sort of on the side of tell the medical folk only what they absolutely need to know, and just tell them you’re doing your best. The best argument for AR’s goals is lack of severe hypos – they can’t argue with that. They can tell you to reduce your basals, but you are the one who has the choice whether to do it or not. Maybe the one good thing about diabetes is that YOU’RE in control!

Except I had a severe hypo, leading to the EKG which led to $12-15K in negative tests which could lead to another $12K in negative tests if I want to screw around w/ a cardiologist? I have my own litany of excuses, overdoing Mothers Day activities and exercising too much at the same time. Long story in my blog and, while the doc is perhaps trying to get me to back off on the heater, it also comes across as a panopticonic control struggle “ok, now set your AM bolus ratio to 14-1” which is higher than it’s ever been leaves several options…do it, and likely run into highs,which is what happened the last time I tried 11, much less 14. WTF are they smoking? I could also explain myself to them “I always bolus for 25G of carbs and eat about 15 to make sure DP doesn’t spill over into the rest of the day”. This, of course, creates a whacky, artificial carb ratio of it’s own but I am probably not consistent either and certainly don’t take notes. The other, more appealing option for now is to leave the ball they hit into my court (“change these numbers…”) hanging and ignore their email until my next appointment and see what happens? Or, of course, I could do some “chores” and get my rates, etc. set more correctly. This seems tediious however I have a few days off at the end of this week. I can test something and come up with a different plan and tell them what I’ve done. Which may still get me labeled as “non-compliant”? Hmmmm…

Loved your post!
I could go on for hours about how my doctors told me what they wanted me to do and I told them no…I want more info first. I found that my instincts are 99% correct. I am T1, diagnosed at 38, am now 46 and still not in control. Not one doc, PA, etc. listens to what I am saying and only looks at my numbers. My numbers are like rollercoasters on a graph. I don’t fit into there nice neat guidelines. I actually emailed a proffessor at a university that teaches medicine to see if anyone is doing a study to figure out glucose burn rate for diabetics. I got no response. So maybe you, with a head full of brains, could go to medical school and start research projects that could help our community manage ourselves day to day. This trail and error thing is not working for me. Good Luck and keep those doctors on their toes!

I love it! You’re right, the question is how. I get so frustrated and wrapped up in why.

Thanks! Im glad you liked it! It was so frustrating to write because I think about all of this but I haven’t really put it into words before. I have yet to find a doc that actually listens to me. I truly feel that they think all patients are morons and they have more knowledge about their patients’ day to day existence with D because they went to medical school. I have not met one diabetic endo. I am going to start asking them why they decided to specialize in endocrinology. I was diagnosed 2 years and 27 days ago, I have a pump and no one has been able to explain what good control is. All I get is A1c nonsense when I can have an A1c below 7 and have numbers anywhere from 40 to 300. That to me is not good control.

I completely hear what you’re saying. They tell you to do records and then they look at them for two seconds and tell you “Try this, and when that doesn’t work come in for another appointment and I’ll give you something else to try that isn’t going to work.” Its such a racket! Non-compliant my a$$! I have better things to do than mess around with basals all day long. I know what works for me reasonably well and when I have time I make adjustments that make sense with my life, not just numbers on a chart. Any data I collect is arbitrary anyway because my schedule is so variable.