Diabetes education is still navigating its way through the wave of change as patients turn to on line communities and resources for knowledge and support. Educators have had fundamental questions about whether DOC really helps patients in measurable ways and whether there are serious risks of harm. On on Aug 8th at AADE 2015, a presentation entitled The Diabetes Online Community: A SOCIAL MEDI(c)A(l) Approach to #DiabetesCare by a bright young researcher named Michelle Litchman, PhD FNP-BC finally spread some light on these questions. The conclusions of her work suggest that involvement in the DOC is associated with better glycemic control, self-care behavior and quality of life.
That’s good news. However I would suspect that involvement in the DOC is also associated with a loss of respect for physicians and a gain in contempt for registered dietitians.
It is scary to think where I’d be if I had continued to listen to the doctors who told me, “You’re thin, no way you have diabetes. Ignore that glucose tolerance test.” As it is, I have permanent damage to my discs and tendons from the 49 years before I read Bernstein and did my first post-meal blood sugar meter test.
I’ll be posting further about AADE. The ground has truly moved underneath the educators and now patients get substantial knowledge from the DOC. And some knowledge is in direct conflict with “doctrine.” Once you learn about low carb it is very hard to undo that knowledge. And what is a patient to think if their educator can’t get even the most basic thing right.
I’m happy to read that Dr. Lichtman’s survey shows the DOC in a favorable light. Since my discovery of the hugely favorable effects on my blood sugar from using a low carb way of eating while not hearing/reading a peep from the medical establishment, I remain wary of all credentialed advice.
I’m curious what the average diabetes educator thinks about us. When I say “us,” I don’t mean the average diabetic that they see in their practice, but the the more engaged and diabetes educated people that live with diabetes 24/7/365, pay attention, and participate in the DOC.
Has there been any recognition, at all, that a low carb way of eating can provide breakthrough success for at least some of their patients?
The difference between the advice I was given at diagnosis, 6.5 years ago, and what I actually adopted are like night and day. The DOC is a big reason I chose a different course.
My latest A1C was 5.6. I am certain it would be well north of 7 if I had stuck to the 50g per meal plus 2 15g snacks advice I was given. 30 to 50 g/day turned out to be a better match for my damaged metabolism.
I have come to realize that we in the DOC are more motivated than the average diabetic and that this is also a reason so many of us are doing well. Still I wish there was a way to help those who are blindly following the advice they are given.
Perhaps the results of this study will encourage more medical professionals to check out the DOC and modify their advice.
Don’t hold your breath waiting for doctors to check out the DOC. As my new found, delightful, and shockingly respectful family doctor said to me the last time I was in, most doctors HATE it when patients come in with information they’ve found on the web. They hate it even more when patients come in with information that contradicts the published guidelines.
This doctor and a few others I have seen are finally telling people with diabetes to cut back on carbohydrates, which is a nice step forward. But if you tell them you are eating less than 100 g a day, they still respond with shock, as they think of cutting back on carbs as meaning eating 200 g rather than 300g and cutting out white sugar and flour. There is still a very strong belief that eating fat is dangerous and that “the brain needs carbs”
Doctors are so crazy busy, and so overwhelmed with the requirements the insurers put on them now, that they don’t have time to read stuff out of work, and when they do, many are so burnt out after years of seeing a steady stream of patients that the last thing they want to read is anything about medicine.
I too wish change would come faster, but considering how long the “healthy whole grains” and anti fat propaganda has been going on it will just take time.
I agree docs must hate it when a patient brings up something they saw on the internet. I was dreading telling my doc about how I was eating soon after diagnosis. He didn’t say anything perhaps because it had already made such a dramatic change in my blood sugar. A year later he said we were partners in my treatment and he had learned things from me.
Unfortunately he closed his practice and I had to start with a new doctor. I haven’t talked too much about my diet but she did complement me on my A1C last visit. Next visit I’m going to ask her to not put my on the “Diabetic Diet” if I wind up in the hospital as it will make me even sicker. This will of course mean a more detailed discussion of my diet, wish me luck
Change is coming slowly. I saw a TV doctor the other day who recommended eggs and yoghurt for breakfast. The interviewer questioned the amount of saturated fat and lack of carbs. He answered that saturated fat is not considered a problem anymore and carbs cause unhealthy spikes in blood sugar.
@Jenny–It is delightful to see you here again. I was one of the lucky ones to find TuD not too long after my dx in early 2007—where I also discovered Bernstein and all the amazing work you were doing to get your book ready for publication. I remember how excited we all were when you first published it.
While my first doc was, indeed, as awful as we tend to expect, once I began to see my results stabilize at good levels–AND realized this was a way of eating I could enjoy and sustain indefinitely—I got very serious about finding a new doctor. The first two recommended by friends weren’t taking new patients. Then I thought I’d branch out and, by gum, I found a Family Practice doctor who is young and brilliant and wonderfully supportive.
Anyway, Jenny, what I wanted to say is that I took her a Care Package one visit that included both your books, Bernstein’s book, several packages of the 4-carb pitas and lavash with flax that I order from Joseph’s Bakery, a bunch of my personal recipes adapted to be lo-carb, and a bunch of TuD postcards.
She was delighted, tried out the pitas on her kids (who loved them) AND, left the books in her waiting room, where a couple docs who covered for her during her Urgent Care shifts also picked them up and were impressed.
So, I found a little hope. And a doc I feel I can trust which I thought could never happen. Granted she is often a gatekeeper, but only as I request it and after discussion…
Thanks, Jenny, for all that good work you did that can help us spread the word–I try to always have a spare of your books on hand to lend or give away!..
I think most people define it as the Diabetes Online community. Some people feel sensitive about “diabetic.” The addition of “ic” gives the word the meaning that the person “takes the form of” diabetes. We don’t call someone with cancer “canceric.” So the term Person With Diabetes (PWD) is usually used.
I am also not personally offended by being called diabetic or referring to myself as diabetic. But I just worry that words do matter. I hope to always to see you as a person with diabetes but never as diabetic.
I think the phrase “I am not my diabetes” sums up how sum people feel about.
But we refer to someone with anemia as anemic, and someone with epilepsy as epileptic… And someone with myopathy as myopic… And the list goes on. I’ve honestly never understood why anyone feels the term “diabetes” vs “diabetic” makes a bit of difference. So it’s interesting that some are offended by the “ic” in diabetic but not in other health conditions. I think this has more to do with still prevalent negative stereotypes of misconceptions of diabetes itself than it has to do with how we suffix the word. I’ve always found these concepts interesting how people react differently to different forms of the same words.
What a gem of a doctor you have, and thanks so much for including me in the care package.
I am getting started on a revision of the book, but it is slow work as I have so much trouble with my discs (or rather lack of them) that I can’t put on the long hours I could a decade ago. I’ll chip away at it this fall. There isn’t much that is new, beyond all the new drugs and some more data backing up the safety of the diet. What I’ve learned from my site is that most people want the basic info, not too much detail, so I struggle to stay on that path and not wander away into areas that most readers aren’t ready for.
I know quite a few PWD in real life, but they just do whatever the doc says and have zero interest in learning anything. The local docs tell them 7.5% A1Cs are fine and prescribe all the pills their insurance will pay for.
I learned long ago not to evangelize, but to share info with people who want it. Which is why I am so active online.
The difference is that we don’t call the person who is anemic “an anemic”. I’m fine with the adjective, but not when it becomes the noun describing me. Its like when doctors talk about the kidney in room 503.
BTW the software is complaining about multiple replies, but I’m typing on a small tablet and having a very tough time posting at all. This editor is not friendly to browsers in desktop mode which is what I need for many sites.
@Jenny (I’m not sure why it removes the person I’m replying to when I edit a post, which I almost always do since I’m typing on a tiny iPhone screen)
That’s an interesting distinction, Jenny. Though I think I could be described if I had anemia, as “an anemic 35 year old male” etc just as I could be described as a “diabetic 35 year old male”
I do see your point though, but the counter examples are also interesting-- For example a person with clinical psychosis is psychotic or in the noun tense, a psycho or psychopath. A person with leprosy is a leper-- those are the first two examples that come to my mind-- and they’re both considered not only diagnosis but also diagnosis with very negative historical connotations— psychotic people can commit horrible crimes if not properly treated, or locked in psych wards, lepers were historically confined to colonies—
so it appears we do associate the descriptive term with negatives when it comes to a medical condition? I wonder why diabetes is considered in that light by some. We don’t in most other contexts I can think of besides medical conditions… Somebody who uses comedy is a comic… We’re fine with that. And a person with a million dollars is a millionaire, and that’s ok. But we object to a person with diabetes being called a diabetic. These things make me think.
Edit to add— another example-- we don’t call a person with hypochondria “a person with hypochondria” we call them a______…
And a person with narcissism is a narcissist… Yet again, though, both examples of real conditions that are usually described in a mocking, or negative manner… I just think there is a link to the negative perceptions of diabetes in our society that make us not want to be called “a diabetic” as if it’s some kind of ridicule or insult… When I don’t think we should feel that way.
I didn’t perceive the study in question to have had or focused on any sort of dietary specificity, just that engagement with the online community of people with diabetes has benefits Many folks find benefits in T2 but I think the bigger benefits can be distilled to more normal BG targets (which, of course, maybe less carbs can help with) and testing a lot (which may show interesting results from eating less carbs) but I don’t really eat low carb, maybe moderate carb. But I also have fun with higher or at least “normal” carb excursions and sometimes I can pull it off with relatively normal BG.
I haven’t seen any posts suggesting the DOC actually harms patients. I suppose that here and there you see people saying “don’t listen to acidrock23, he is full of crap. You should only listen to my doctor, because they know everything…” but I don’t see that too much either…
I avoid using the term “diabetic” as I perceive it to have an ontological angle that I don’t perceive people with diabetes has. I just avoid it. It might slip out every now and then but, generally, I try to look before I “reply” and work around it. I’ve been doing it long enough that I think I usually avoid it.
