Diabetes - A Community with a Victimization Complex?

[Jen]

@JonDeutsch

This is so not the same as someone saying “my CGM gave me a rash” and the common reply is “well, we diabetics don’t heal as fast.” This reply (which I see all too often online, and was even said to me by my own doctor!) is not helpful and not accurate.

Lots of online replies and doctor comments are not helpful. Is diabetes your first engagement with the healthcare system and online communities?

@JonDeutsch

What is accurate is that people with elevated glucose (i.e., glucose toxicity) suffer from all kinds of complications, including slower healing times. This is the fundamental distinction I’m trying to make: diabetes does not create complications. Poorly managed diabetes (i.e., glucose toxicity) is what is behind the vast majority of “diabetic complications” (which, in another chapter, I call BS on. They’re glucose toxicity complications, not diabetic complications).

If your definition of “poorly managed” diabetes is having any blood sugar levels higher than so-called normal, then everyone on this forum and every other diabetes forum has poorly managed diabetes. It is virtually impossible, even for those who have extremely tight control and access to all the latest technology, to never have high blood sugar. And, complications are associated with length of diabetes just as much as they are associated with control. So someone who has had diabetes for nearly 30 years like me is at risk of complications simply becuase I’ve had diabetes for 30 years, even though I’ve had good control (though maybe not by your standards!) that entire time.

@JonDeutsch

There is nothing new and interesting I can add to “insulin” except perhaps the very poor uptake of inhalable insulin, which I personally fine bizarre. In fact, maybe I will add insulin as a knob and focus on Afrezza.

Here is an area where your newness really, really shows. There have been massive changes in insulin over the past several decades and this is an area that continues to advance as we speak. There are tons of different insulin types to choose from these days, different delivery methods, different strategies of use, and managing insulin is basically what takes up a huge part of the energy of managing Type 1 diabetes. Afrezza is great…but it is very limited (the USA only) and it has a very specific use case (corrections and high-carb meals only, maybe @Sam can speak to that more). Afrezza definitely is not a replacement for learning to master other types of insulin, it can’t be used on its own for managing Type 1 diabetes.

@JonDeutsch

I don’t have any food allergies but I know people who do. I based this thinking off of my and their experiences.

I’d be curious what similarities you find between those you know living with food allergies and use of a low-carb diet. Besides the very surface similarity of avoiding a food. I don’t know anyone eating a low-carb diet who has to worry about contacting food manufacturers, what the person on the plane next to them is eating, whether the restaurant chef remembered to use a new knife, or the need to call an ambulance after two bites of a meal.

[Jen]

@JonDeutsch

For Type 1’s, it could, in theory, also be a lack of glucagon, I suppose.

Honestly, there is so much about how the body works at the molecular level that scientists still don’t understand. You also seem to completely forget that Type 1 diabetes is an autoimmune disease, and therefore complications could be due to an autoimmune process. People with Type 1 are also lacking c-peptide, which has been researched for a possible link to complications in the past. And lacking amylin as well. And maybe other hormones that haven’t even been discovered yet. And that’s not even counting the contribution of genetics…

There are many conditions such as frozen shoulder, glaucoma, cataracts, thyroid disease, hypertension that are much more prevelant in people with Type 1 diabetes despite having no association to diabetes control. And people without diabetes can get retinopathy, or neuropathy, or kidney disease, and so on.

[Sam]

And an awful lot of Americans who don’t have diabetes have higher and more erratic blood sugars than well controlled type 1s… and magically they don’t end up with complications associated with diabetes but the type 1s with excellent control still often do

[jim26]

A lot of conditions associated with diabetes which aren’t related to control.

Rheumatoid arthritis
Hashimoto
Graves
Gluten intolerance
Vitamin D deficiency

I’m sure there are 100 more. So those complications you reference could have other diabetes factors in play other than control.

[JonDeutsch]

@Sam

I’m not even going to engage in a debate.

Meh. You engage in a debate, accuse me of being wrong and not doing my homework, and then, when asked to give an example of where I’m wrong, you then choose not to engage in debate in retrospect? As our incoming president would say, “C’mon, man!”

@Sam

You are spouting off nonsense as if you’re a voice of authority when in reality you’re a newly diagnosed diabetic who hasn’t even had a chance to get your own mind wrapped around the situation. Your writings strike me as a reflection, and not one of reality.

Man, tough room! I’ve been nothing but respectful here to everyone in the community, and I keep on getting these insults levied at me.

Seriously, these insults and accusations are not cool. People can absolutely disagree with everything I state in my manifesto without needing to resort to insults and unfounded accusations. Want to see how to do that? Read my responses in this thread. I have not once lofted an insult upon anyone here, even when they insult me. Even when I disagree with them.

Also, who anointed me as a voice of authority? I’m just me, Jon, with a POV I want to share with people, with the hopes of opening up the conversation into the philosophical and sociological perspective.

@Sam

But don’t try to tell me we have a victim mentality and the only risks associated with diabetes have to do with poor control. That’s both obnoxious and ill informed.

Did you not read my original post?

@JonDeutsch

It may seem bizarre that I take this stance (and post it here!) given that fudiabetes.org is an online community for diabetics, but I am not blaming sites like this, nor am I taking aim at anyone in particular.

In other words, I am specifically not asserting that you, or this community writ large, have a victim mentality.

Did you see the title of my post? “Diabetes - A Community with a Victimization Mentality?” Do you think I put a question mark there for my health? It’s a question, not a command from upon high from some sort of mythical authority figure. It’s me framing this topic as a question to this community, specifically stating that I’m not implicating this community or the people within it.

A man can only do so much to provide appropriate levels of context to avoid misunderstandings.

And with regards to diabetic complications being sourced by factors other than glucose toxicity, I’m still eager to learn where my research has led me astray.

@Sam

Save these conversations somewhere that you can look back on them 15 years from now.

I get it. You see me as a diabetes neophyte with unbridled and misguided enthusiasm.

By the way, you just might be right. But, there’s also the possibility that you’re not. The truth is usually somewhere in the middle. And I’m OK with that.

Cheers,
Jon

[JonDeutsch]

@Jen

Honestly, there is so much about how the body works at the molecular level that scientists still don’t understand.

Of course. And, with diabetes, they seem to be well behind the curve of understanding given how long this condition has been recognized as life-threatening, combined with the sheer number of people impacted.

@Jen

You also seem to completely forget that Type 1 diabetes is an autoimmune disease, and therefore complications could be due to an autoimmune process.

No, I did not completely forget, nor even partially forget, this fact at all. We do, in fact, know how the autoimmune process creates type 1 diabetes. We know what it attacks, and what is disables. And we know the chain of events that are created due to this disabling.

@Jen

People with Type 1 are also lacking c-peptide, which has been researched for a possible link to complications in the past. And lacking amylin as well. And maybe other hormones that haven’t even been discovered yet.

Ironically, high levels of c-peptide are correlated with CVD:

C-peptide levels linked to death and heart disease in nondiabetic adults

Amylin plays a role in glucose homeostasis. It’s upstream from CVD. Again, happy to be shown otherwise, but every single piece of research I’ve read has led to the same dynamic: glucose toxicity is the culprit in “diabetic complications.”

Look, I’m not a doctor, nor a professional researcher, and I’m not saying that the CDC should promote my document as the new standard in thinking. What I am saying is that I’ve gone through a lot of information and every single piece of info I’ve come across to-date points to this as the core issue at hand.

@Jen

There are many conditions such as frozen shoulder, glaucoma, cataracts, thyroid disease, hypertension that are much more prevelant in people with Type 1 diabetes despite having no association to diabetes control. And people without diabetes can get retinopathy, or neuropathy, or kidney disease, and so on.

This is an excellent point, in my view. There are so many ways things can go out of homeostasis in so many sub-systems that lead to so many and varied complications.

It’s just that they have a special name for retinopathy for diabetics: “diabetic retinopathy” - and if you dig deep, the source of this is glucose toxicity. Same with every other “diabetic” complication. That’s not to say that diabetics can’t get other non-glucose-related conditions. Of course they can! I have Hashimoto’s. It’s not due to glucose toxicity! I have hypertension - have had it for 15 years. Not due to glucose toxicity!

It’s just that these go off the topic at hand in my view. I’m focusing on diabetes-instigated complications only here.

[JonDeutsch]

@jim26

A lot of conditions associated with diabetes which aren’t related to control.

Rheumatoid arthritis
Hashimoto
Graves
Gluten intolerance
Vitamin D deficiency

I’m sure there are 100 more. So those complications you reference could have other diabetes factors in play other than control.

Hi Jim - so I think there’s a distinction between “caused by” and “related to.”

My focus is the “caused by” category of complications. The list you started is more the “related to” list, which, you’re right, is not based on the diabetic state that leads to glucose imbalance. Sadly, I have a few “related to’s” in my own situation, but I don’t see them as diabetes complications. Make sense?

[JonDeutsch]

@Sam

And an awful lot of Americans who don’t have diabetes have higher and more erratic blood sugars than well controlled type 1s… and magically they don’t end up with complications associated with diabetes but the type 1s with excellent control still often do

If this is true, this would absolutely challenge my point of view on this topic. I have not come across any research that indicates that this is true, though. I’m not sure we track enough gluco-normals’ glucose levels to correlate their relatively unhealthy glucose levels with complications. I suspect there’s a bias in reporting where diabetes-instigated complications are far more easily collated and added up than complications of non-diagnosed Americans who just happen to die of a heart attack at 55 and people chalk it up to whatever makes sense given their host of issues.

In fact, my brother’s girlfriend’s brother died of a heart attack at 35. He was not diagnosed diabetic. His glucose levels were significantly elevated at time of death. They did not link his death to diabetes, because he had not been diagnosed.

[JonDeutsch]

@Sam

And an awful lot of Americans who don’t have diabetes have higher and more erratic blood sugars than well controlled type 1s… and magically they don’t end up with complications associated with diabetes but the type 1s with excellent control still often do

There’s a reason why the ADA says that nearly 1 in every 3 Americans likely is pre-diabetic. And, if you read my chapter on prediabetes, you’ll see that I see prediabetes as yet another horrific marketing term that does everyone a disservice. It’s not pre-anything. It’s elevated glucose toxicity, aka. Stage 1 Diabetes.

I would expect that many complications that people suffer from who are not officially diagnosed would otherwise be coded as diabetic complications. Again, I don’t have the proof. This is supposition.

[Sam]

@JonDeutsch

would expect that many complications that people suffer from who are not officially diagnosed would otherwise be coded as diabetic complications.

Yes, they would… but they don’t get them with near the frequency that even extremely well controlled diabetics do…

Of course tight control mitigates those risks strongly associated with diabetes, but it certainly doesn’t eliminate them.

[ClaudnDaye]

@JonDeutsch

you’ll see that I see prediabetes as yet another horrific marketing term that does everyone a disservice.

If you let it do you a disservice and if you worry about trivial things like that…no matter what term was decided upon there will always going to be those who have a problem with it. Can’t please everyone all the time. So should terms and diagnosis just be avoided to avoid the conflicts?

[docslotnick]

@JonDeutsch

This is the fundamental distinction I’m trying to make: diabetes does not create complications. Poorly managed diabetes (i.e., glucose toxicity) is what is behind the vast majority of “diabetic complications” (which, in another chapter, I call BS on. They’re glucose toxicity complications, not diabetic complications).

@JonDeutsch

I would like to understand if I’m missing something here: Please share with me a complication that would occur if my blood glucose was relatively equivalent to a gluco-normal’s glucose from a time-in-range and A1c perspective.

This “attitude” of complications of long term diabetes not causing complications is really your going off the rails.

I have had T1 diabetes for 50 years. For about the first 25 or so years A1c and time in range were not known in the medical community. My first A1c was under 6, and I have maintained an average A1c of about 5.8 since then. Similarly, since I started CGM with the Dexcom STS3 (the first CGM) when it became available, my time in range has been 80% or better. So glucose toxicity is something I’ve never experienced.

I have had complications caused by diabetes. Hashimoto’s thyroiditis, early bilateral cataracts, and idiopathic bilateral subdural hematomas. These were all traced to the disease of diabetes, NOT high blood sugar. Mostly vascular, but at least the Hashimoto’s was cellular. Again, all caused by diabetes, not high blood sugar.

I think you need to do more research before propounding such hairbrained, anti science ideas.

[JonDeutsch]

@Jen

Is diabetes your first engagement with the healthcare system and online communities?

While diabetes is my first chronic condition, it’s certainly not my first engagement with the healthcare system. It’s definitely first engagement with the healthcare system where I felt I was being given bad direction, bad advice, and bad counseling.

In terms of online communities, I created one of the first online communities on the internet, in fact, back in the early 1990s. I have been a member of a myriad of online communities for nearly 30 years.

@Jen

If your definition of “poorly managed” diabetes is having any blood sugar levels higher than so-called normal, then everyone on this forum and every other diabetes forum has poorly managed diabetes. It is virtually impossible, even for those who have extremely tight control and access to all the latest technology, to never have high blood sugar. And, complications are associated with length of diabetes just as much as they are associated with control. So someone who has had diabetes for nearly 30 years like me is at risk of complications simply becuase I’ve had diabetes for 30 years, even though I’ve had good control (though maybe not by your standards!) that entire time.

As I shared in an earlier post, there is research that indicates that even 5.5 A1c can be a risk factor for some complications. It would stand to reason that the longer you have the condition, the higher chances there are of complications. But nothing I’ve read to-date indicates that the length of time having diabetes itself is actually the cause. It’s just that diabetes as a condition leads to sub-optimal glucose levels, which then lead to increased risk of complications.

I recognize that this may be perceived as a difference without a distinction, but from where I’m standing, it makes a real difference what words we use to describe what’s going on at the physiological level.

@Jen

Here is an area where your newness really, really shows. There have been massive changes in insulin over the past several decades and this is an area that continues to advance as we speak. There are tons of different insulin types to choose from these days, different delivery methods, different strategies of use, and managing insulin is basically what takes up a huge part of the energy of managing Type 1 diabetes.

So, I’d argue that this is not due to my “newness.” It’s due to the fact that exogenous insulin just isn’t part of the Type A Diabetic Manifesto. You’d have to show me what the heck I could say about it that hasn’t already been said, shared and discussed somewhere already. If you feel like there’s an angle on insulin that is simply missing in the greater conversation, please share with me and I’ll definitely consider adding it in to the control panel.

Yes, I know what Afrezza is for and what it’s not for. Despite this, the vast majority of people in America have never heard of it and don’t know about the benefits associated with inhaling insulin. I think it’s a wonderful innovation and it’s struggling in the market.

@Jen

I’d be curious what similarities you find between those you know living with food allergies and use of a low-carb diet. Besides the very surface similarity of avoiding a food .

Yes, I know this sounds parochial, but if you’ve read a bunch of the manifesto, you’ll see that it definitely takes a functional view on practical applications of the diabetic condition and how to deal with it, manage it, and ultimately, control it. And equating insulin resistance to a food allergy is functionally the same thing - not physiologically. I try very hard to make that super clear in my document.

The Journal of the American College of Cardiology I think agrees with me, btw, when they say in one of their papers:

“Insulin resistance manifests functionally as carbohydrate intolerance.”

[JonDeutsch]

@docslotnick

This “attitude” of complications of long term diabetes not causing complications is really your going off the rails.

In other, less abrasive words, you don’t agree with my hypothesis.

@docslotnick

I have had T1 diabetes for 50 years. For about the first 25 or so years A1c and time in range were not known in the medical community. My first A1c was under 6, and I have maintained an average A1c of about 5.8 since then. Similarly, since I started CGM with the Dexcom STS3 (the first CGM) when it became available, my time in range has been 80% or better. So glucose toxicity is something I’ve never experienced.

Look, 5.8 is great in my view. But you’re right, before CGMs, you just couldn’t know what was happening between tests. And of course, the devil’s in the details. Your body (presumably) never forgets a spike.

I think every single diabetic has experienced some glucose toxicity (I’d imagine we all were at toxic levels prior to initial diagnosis, right?), and very very likely experiences glucose toxicity semi-regularly when not perfectly calibrating carbs and insulin.

But stepping back a bit, according to at least this research, “higher glucose levels were associated with stepwise higher risks of all end points, and higher risks also were observed for glucose levels within the normal range.”

Specifically, even at a 5.8 avg glucose, hazard ratios for retinopathy and nephropathy are elevated.

Sorry, but I have never seen any evidence that states that Hashimoto’s (which I also have) is caused by diabetes. It is certainly correlated, but not caused by, diabetes.

@docslotnick

I think you need to do more research before propounding such hairbrained, anti science ideas.

You certainly have a right to believe what you want to believe, but accusing me of being anti-science is quite the allegation.

Cheers,
Jon

[Jen]

@JonDeutsch

And equating insulin resistance to a food allergy is functionally the same thing - not physiologically.

But it is not functionally the same at all! It is completely different. Someone with a food allergy has to worry about a myraid of issues from food preparation and handling to cross-contamination and trace amounts on surfaces to airborne exposures with the risk that any of those things could kill them. Someone on a low-carbohydrate diet just doesn’t eat carbohydrates. The two are not even functionally comparable.

@JonDeutsch

The Journal of the American College of Cardiology I think agrees with me, btw, when they say in one of their papers:

“Insulin resistance manifests functionally as carbohydrate intolerance.”

No, they don’t agree with you.

An intolerance is not an allergy. The two involve completely different physiological processses and have very different management and risks. From the American Academy of Allergy, Asthma & Immunology:

A food intolerance response takes place in the digestive system. It occurs when you are unable to properly breakdown the food. This could be due to enzyme deficiencies, sensitivity to food additives or reactions to naturally occurring chemicals in foods. Often, people can eat small amounts of the food without causing problems.

A food allergic reaction involves the immune system. Your immune system controls how your body defends itself. For instance, if you have an allergy to cow’s milk, your immune system identifies cow’s milk as an invader or allergen. Your immune system overreacts by producing antibodies called Immunoglobulin E (IgE). These antibodies travel to cells that release chemicals, causing an allergic reaction. Each type of IgE has a specific “radar” for each type of allergen.

Unlike an intolerance to food, a food allergy can cause a serious or even life-threatening reaction by eating a microscopic amount, touching or inhaling the food.

Honestly, the difference between a food allergy and food intolerance is such a basic medical fact, and so easy to find with so very little effort, that it really throws your “extensive research” claims into question.

[SBee]

@JonDeutsch, it may not be for you, but for me it is a very large part of my identity.
It is the reason I can no longer work. It is also why I have developed mental health conditions. It has literally nearly killed me on numerous occasions. How can all of those things NOT become part of my identity? It’s like any life choices people make, they create the new person that you wake up being everyday. While I do consider myself a victim of this disease, I have learnt to adapt and get on with the way things are, and I quite like me. I would not be the same person without these experiences. Even if my outlook is a positive one, I can still be a victim. Just as any survivor of a violent crime is still a a victim, even if they have gone on to do great things.
I did read your whole manifesto and while I was interested in the beginning, you lost me with your rhetoric.

[JonDeutsch]

You’re right Jen, it’s a food intolerance, not an allergy. The document will be updated based on this information. Thanks for your help.

@Jen

that it really throws your “extensive research” claims into question.

While I absolutely appreciate the effort you’ve put in to help me fine-tune some of the language and framing I use, I still maintain that these kinds of gratuitous jabs are unnecessary, unfriendly, and unkind. One can do extensive research and still not get everything right. These jabs are hurtful to me, and I think it’s important that you understand that.

But, more importantly, you also help make the broader point that I make in the manifesto: words do matter. Because words describe situations and help aid in understanding. Me getting allergy and intolerance wrong wasn’t a big deal for me, but it is a big deal for others. And that’s why it matters which words we use, even if the words used don’t bother us personally.

This is why I am lobbying to remove the term diabetes from our vocabulary in the manifesto, and replacing it with insulin disorder. Diabetes is a horribly inaccurate and unhelpful term on so many levels, yet we seem content to use it despite its total lack of utility.

[JonDeutsch]

@SBee

I would not be the same person without these experiences. Even if my outlook is a positive one, I can still be a victim. Just as any survivor of a violent crime is still a a victim, even if they have gone on to do great things.
I did read your whole manifesto and while I was interested in the beginning, you lost me with your rhetoric.

Thanks for the honest feedback, SBee. And thank you for reading the whole thing. I appreciate it.

It’s a shame that my rhetoric turned you off. That was clearly not my intent, but I do recognize that a manifesto-style document isn’t going to be for everyone. I do wish that there were a way to express the same ideas in multiple ways so that every personality type found what they were looking for. Thankfully, many others have found the rhetoric to be more entertaining and engaging rather than insulting and infuriating, which was my objective.

I am glad you are peace with your victim-hood! I do think being at peace is the ultimate objective. As I learned earlier in this thread, there is a certain population that can be a victim without the baggage that I presumed came with it. As I promised in the manifesto itself, I do plan on making updates and additions based on what I’ve learned through this feedback loop.

[ClaudnDaye]

@JonDeutsch

Thankfully, many others have found the rhetoric to be more entertaining and engaging rather than insulting and infuriating, which was my objective.

Just for the record, your manifesto hasn’t insulted or infuriated me…can’t speak for others though. Just the title bugs me because I hate using the “victim card”. I don’t have a problem with the word diabetes so if you do get ground and change the world, I may continue just using the term because it doesn’t bother me (or my son) and the whole thing has been more “Meh” for me. I do realize you’ve put a lot of work into it though and I know your intentions are good so I applaud you for taking the time to put together a serious body of work that you’ve done your best at researching and compiling. You sound like an intelligent man who has done a lot of thinking about this and I wish you a lot of luck in your pursuits.

[Beacher]

@JonDeutsch

When someone says “but as diabetics, we have to acknowledge that we don’t heal as well as others” - I perceive this as victimization.

Do you see it differently if someone says, “But as myopics, we have to acknowledge that we don’t see as well as others,” or “But as dyslexics, we have to acknowledge that we don’t spell as well as others”? Do you see those as statements of victimization, or as acknowledgement/acceptance of biological fact?

@JonDeutsch

Did you see the title of my post? “Diabetes - A Community with a Victimization Mentality?” Do you think I put a question mark there for my health? It’s a question , not a command from upon high

But it seems to me, reading parts of your manifesto and your many rebuttals here, that you’ve already determined that it is not a question, and have set out to prove it.