Is Diabetes even the right word to use?

As I started doing research for my Diabetes Manifesto, I decided to start looking at how major health organizations actually defined diabetes.

What I found was not only a wide range of definitions, but, discouragingly, that most actually defined the condition poorly and inaccurately.

If our major institutions can’t be relied upon to accurately define the condition, does this speak to their competency? Or does it speak to the underlying issue with the term diabetes to describe this wide variety of physiological conditions?

I go into this in more detail in the “What is Diabetes?” chapter in my manifesto.

I look forward to your thoughts and comments on this matter.
Cheers,

Jon
Type A Diabetic

@JonDeutsch get ready for a bunch of verbosity, but as you so kindly asked.

I am a stickler for using the correct terminology. This puts be at odds with the NIH, WHO and CDC because they use the word, diabetes which derives from the Greek for siphon or go through. There are some seven types of diseases that have excessive urine as a symptom.

Diabetes mellitus is marked by sweet excessive urination and thirst. Diabetes insipidus the urine is nearly pure water, insipid. (seen word origins posted at the end)

There are four types of diabetes insipidus that cause extreme urination, but do not affect blood glucose levels. It is fairly rare, but should not be forgotten. A lot of doctors don’t even consider DI when a patient complains of thirst and urination. They assume diabetes mellitus.

There are 3 main types of diabetes mellitus, each with sub types. Type 1 DM is autoimmune that requires a genetic component that gets triggered by a viral infection. The immune system targets the insulin producing Beta cells. It often occurs in early childhood and early teens to young adults. A sub type is Latent Autoimmune Diabetes in Adults (LADA). It tends to occur in middle age, is slow to develop and is often misdiagnosed as Type 2 DM.

Often lumped up with type 1 DM is Neonatal diabetes. It is caused by one gene. It sometimes resolves by 6 months, but for about half born with it, it is for life. They will always be insulin dependent.

Type 2 DM is the most common and in the past appeared in middle age. There is a group or set of genes that cause cellular insulin receptors to resist the attachment of insulin. This is a different modality than type 1 DM. T2DMs in the early stages secrete lots of insulin, causing intermittant hypoglycemia and hyperglycemia with a build up of fatty tissue. Over time the overworked Beta cells tire, causing a progression of the disease.

Early on T2DMs can often achieve near normal BG levels and increased insulin sensitivity through diet and daily exercise. If it progresses, the patient will need drug therapy in addition, and finally supplemental insulin.

Maturity-onset diabetes of the young (MODY) is an outlier. It affect young people, but is not autoimmune. A change in a single gene in a group of 14 genes cause a deficiency of insulin secretion. MODY is not really type 1 or 2.

Type 3cDM is when the exocrine portion of the pancreas is injured by disease such as cancer or pancreatitis. The pancreas does a whole lot more than secrete insulin. There are 6 endocrine hormones from various islets of Langerhans and 2 or more exocrine enzymes that aid digestion. Damage to the exocrine area of the organ can also damage some of the islets causing blood glucose control issues. T3cDM can require complete insulin replacement or perhaps none at all, as the remaining Beta cells are secreting enough. Each T3cDM is a unique patient.

Well we all are, but more so for the 3c people.

I really don’t know how to define diabetes without specifying just what type the diabetes is.

ORIGIN
mid 16th century: via Latin from Greek, literally ‘siphon’, from diabainein ‘go through’; mellitus is from Latin mellitus ‘sweet’.

ORIGIN
late 19th century: from diabetes + Latin insipidus ‘insipid’.

I don’t think this community benefits from the “services” that you are attempting to market. Your last post about victim complexes was a similar attempt at appealing to peoples’ emotions and you left while claiming the victim.

I hope that this thread gets taken down before it wastes too much of the community’s time and energy. And no, I’m not going to engage any followups.

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False and baseless accusations like this is why I’ve more-or-less disengaged from this community. It’s shameful, defensive, and definitely not the constructive discourse I was expecting. I honestly expected the site owners/moderators to jump in to put a stop to this character assassination stuff, but unfortunately that hasn’t happened either.

I have been falsely accused of far too much here to make it worth my while to continue to engage in a productive, progressive dialog with this community. A crying shame, in my view, but it is what it is.

:frowning:

Jon, I am sorry you feel that way. We moderate with a very light touch, and I don’t think character assasination is correct, but I do agree that your views acted like a lightening rod with some, and I would think that you agree that your views are reasonably controversial.

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Baselessly claiming that I’m doing this to “market services” to me, is character assassination. It’s impugning my motives, my impetus, and my integrity. If you go through this thread, you will see countless other baseless and incorrect accusations. I spent almost a year writing and re-writing this 68-page document because I spy a serious set of problems in the diabetes ecosystem writ large, and I felt compelled to come out swinging and make some noise about it, with the intention of the debate moving the needle on a variety of fronts. This is not a “white paper” designed to drum up business. It’s a manifesto designed to raise questions, ask difficult questions, and ultimately drive change in what I view as a sub-optimal environment when it comes to health outcomes. Because it pains the hell out of me that we accept things as they are when so many millions of people actually do not need to suffer from all these complications, or suffer mentally that they are “broken” or “not like the others.”

Acknowledging that my views are controversial sidesteps the behaviors on display here. Ideas are not the same as behaviors. People can disagree without being disagreeable. Yet, I’ve seen no effort to maintain a modicum of decency and decorum.

I certainly am not proud of that whole thread. I can agree about that. Sure, people can disagree without disagreeable, provided that the controversial idea at hand is at least well-argued and substantiated, rather than a document filled with baseless, blanket accusations of victimization, disrespectful claims ('“I am a diabetic" is an insidious statement’) and repulsive comparisons with cancer (“If you have thought or said “I am a diabetic” you’ve let an insulin disorder metastasize to your mind.”). The distinction between ideas and behaviors is meaningless in this case. Promulgating an insulting document, even if strictly speaking you didn’t post the integral text of the manifesto chapter on this forum, makes the insults part of your behavior here. So when it comes to decency and decorum, I can’t see what leg you have left to stand on. Kind of the pot calling the kettle black.

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So, of 60+ pages of content designed specifically to shake up the status quo and to have us challenge our assumptions so that we actually view this condition differently, you’re insulted by a few phrases designed intentionally to provoke a reaction, and that’s the net impact of the entire document? Look, if that’s how you process the information, that’s how you process the information. I can’t control that.

And I’m perfectly happy to say “I’m sorry if I offended you” to anyone who was offended by anything I’ve written.

Who - to date on this thread - has said to me “I’m sorry if you’re offended by what I’ve written about you” or “I retract my baseless claim designed to insult you”?

Answer: Nobody.

I can also say that this is the only forum - other than Reddit and its moderators - that has taken such offense to my manifesto. It’s curious and it’s intriguing. A more mature, less trollish conversation about it may actually lead to more insights, more understanding – and more humanity in the process.

I have a feeling that people seize onto a few catch phrases – designed to provoke and shake up the status quo – and can’t let go of them, and, thusly, lose the entire plot of the document in the process.

That’s a funny way to describe insults. You think it’s perfectly fine to insult people as long as you add a disclaimer that it’s designed to provoke a reaction??
Your phrases certainly provoked a reaction, but what kind of reaction did you expect when you wrote those phrases?

I didn’t say that (if we’re talking about processing information…). You yourself picked single chapters to post and discuss here. The victimization chapter specifically is what provoked the backlash. So it should be clear from that context and my interchangeable use of the words ‘document’ and ‘manifesto chapter’ that I’m referring to that specific chapter, not the entire document.

Great, but what’s the meaning of apologies if you don’t remove the insults from your manifesto? Are you sorry for something you’ve written or only for the effects of certain writings?

What specifically are you talking about? We can’t apologize for or retract statements if we don’t know what offended you. I am willing to apologize if indeed I made unsubstantiated, insulting claims about you.

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I am extremely late to this discussion but I do want to comment. I generally do not indulge in long works such as this manifesto, short attention span I guess, but I wanted to see why so much controversary.

I have to say that a lot of what the author says makes sense but some of it is much to do about nothing, especially his part about victimization. It is clear that he is bringing his point from a type 2 perspective. While I don’t believe most type 1 diabetics feel victimized I believe most have a much better sense of the realities of what it means to have diabetes than he does. It is not so much a feeling of victimization among T1 diabetics as it is camaraderie born of shared experience and understanding that he see in diabetic forums. He would do well to refrain from preaching to the type one mindset until he has walked in those shoes.

I think another point he has made explains why he does not understand. Diabetes is more than one disease and he has gone to great length to bring out that point but has failed to stay in his lane. Type1 and Type2 are totally different diseases that share one name, he should not presume to create a manifesto and state that it is for diabetes as a whole.

I don’t agree that diabetes is a brand, it is a name and nothing more. While the original meaning of the name doesn’t always apply it is still a recognized name that people relate to a disease, what else should a name do. Perhaps there should be better more descriptive names for the diabetes types, T1 and T2 just don’t say much. Several years ago on TuDiabetes there was a discussion about changing the names. Good arguments were made both ways. One of the biggest against had to do with charitable funding for research. It was felt that if the two diseases were separated in the publics eye that type 2 would receive the lions share of funding because of the larger number of patients.

The author seems to wish to coin the term “Type A Diabetic” I get the point and approve of the reasoning. We all need to be type A personalities when it comes to managing our diabetes, what ever type it is.

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It’s really a mix - but I was referring mostly to the online communities that I take part in across the internet. Not specifically this one, or any one in particular. But, in general, I have seen more victimization (not necessarily the “woe is me” kind, but more the “we diabetics cannot do X, Y, and Z” kind). Creating a sense of community for support and guidance is wonderful. But taking it to the extreme by creating a shared experience when the experience does vary by individual I believe is taking it a step too far.

To be clear, I completely understand the nuances and differences between the different types of diabetes, which is precisely why I advocate to rid ourselves of a single “brand” (or label, or term, whatever you are comfortable calling it) and call it what it is: a spectrum of insulin disorders ranging from insulin production issues to insulin resistance issues – and mostly a combination of both.

A name should serve as an identifier of what you’re speaking of. If I say “diabetes” it means so little because without the type identifier, we’re talking about two completely different physiological conditions. It’s the equivalent of having two kids and naming them both Frank. You can do it, but it’s certainly not helpful in determining which kid you’re talking about until you start adding adjectives. At that point, why not just name the two kids different names???

This is what I specifically advocate for in the manifesto as well. And, yes, funding should go to the population that needs it most. But the raw numbers doesn’t tell the whole story - the cost of managing type 1 is a real factor in the payer universe.

Thank you. I concur. :slight_smile:

Where did I insult people? I remain perplexed! If we’re talking about this chapter, it’s been caveated out the wazoo, and it provides clear context as to what I consider identity-complex driven victimization.

I humbly suggest that just because someone is insulted by something I write doesn’t mean that I meant to insult, nor that what I said is considered generally insulting. I cannot control everyone’s reactions to everything I write, obviously. I am happy to caveat the hell out of what I’m saying, and provide deep context, which I’ve attempted to do. But if someone is insulted by something that I feel is important to share, I am sorry about that. But that doesn’t mean I shouldn’t share what I feel is important information to share.

Contemporary example: Some people are insulted by health experts claiming that if you don’t get a vaccine for COVID-19, that you are being socially irresponsible. Should health experts stop saying this if they believe its true from a population health perspective just because it insults a portion of the population?

Ironically, perhaps they should if they want more compliance! I say ironically because if my statements are having the same effect, then perhaps I should do the same. But I’m not there yet. I still feel the need to get “my truth” out there and see where it leads.

Al that said, I am open to revising my phrasing if it’s considered to be roundly unacceptable. I haven’t found this to be the case. I have found that this manifesto is broadly polarizing to be sure (which in it itself is a surprising outcome for me), but it’s not roundly despised as it is on fudiabetes.org. There are plenty of people who have sent me notes thanking me for helping them reset their thinking. This outcome was the intended intent.

I apologize. The heinous thread of insults was not this thread. It was a thread I started around the “Culture of Diabetes” chapter – the one that seems to have insulted the most people the most ways. That thread was painful. This one, probably not as much.

You write a chapter filled with baseless accusations of victimization ending in a comparison of those who use a word you don’t like to having metastatic cancer, a statement that has no purpose but to insult people. You can’t do that and then hide behind claims like that it’s a manifesto, written in a manifesto-style, intentionally designed to provoke a reaction (you got a reaction, just not the one you liked), as if that would give you free pass to write any insult you like.
Secondly, you may think it provides a clear context, but actually all you do is fabricate a few statements that you perceive as symptoms of victimization, while providing no evidence whatsoever that these actually are symptoms of victimization. Although probably some people do view themselves as victims, you’ve identified none of the symptoms.
You’ve stated before that you’ve put many hours in your manifesto, but this chapter doesn’t show that.

You really think comparing the use of normal terms to metastatic cancer is not generally considered insulting? Do you want to maintain that that’s actually a thoughtful idea worthy of serious discussion?

Agreed, it would be unreasonable to expect that. What I do expect, as stated in a previous post, is that controversial ideas are at least well-argued and substantiated.

Of course not, but considering that your manifesto doesn’t show a great understanding of linguistics and medicine, I don’t think you’re the health expert in this example.

If this culture chapter had been like the many “5 things you should never say to a person with diabetes: 1. Diabetic” or so articles on the web, I would simply have rolled my eyes at it, like I did when you posted the other chaptes of your manifesto. Although I think such articles are nonsensical and shouldn’t try to speak for everyone, they’re usually only expressing a personal opinion on how others should refer to diabetics, not on how people refer to themselves. If that’s what they like to preach, they should do that. I don’t care much. It does no harm when people call me “person with diabetes” instead of “diabetic”. But you come here and post an inflammatory piece that levels baseless accusations of victimization at diabetics who say or call themselves things you don’t like. That’s why that thread exploded, while the other chapters generated little response.

It’s quite obvious that backlash wasn’t the intended effect, so why do you keep repeating that you got lots of thank you notes?
This wouldn’t be the first manifesto in history to get things totally backwards, but receive a round of applause anyway.

No need to apologize. I understand that you were referring to the other thread. While I readily acknowledge that we, including me, were quite fierce, I can’t determine if your demand for apologies or retractions is justified when I don’t know what exactly you found to be insulting and whether that was something I said.

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To be clear, I don’t think you do, you only think you do. You may be fully educated in the differences in the different diabetes types but you cannot nor will you ever understand what it is to be Type 1 unless you become type 1, you cannot, you have no skin in the game.

Notice the Type 2 label beside my name, I will never say I fully understand what its like to be Type 1. Even though I am fully insulin dependent and do daily everything a T1 does I will not make that claim. I have been an administrator of the TuDiabetes website for 8 years and a member of that site for ten years during this time I have studied my T1 friends as if my survival depends upon it…

Sometimes I almost feel as if I am T1, but I have learned enough to know what I cannot know. I will never fully know the pressures, the struggles and the thought processes that goes into being type 1. There is a commonality of life’s realities among Type 1 diabetics that I believe you fail to see.

These forums are not victimization clubs. When you come here to FuDiabetes or even to TuDiabetes where I serve as a volunteer, you will not be treated as a victim, you will be helped with your struggles, You will be encouraged with answers to the problems that hold you back. If someone feels victimized its our job to help them through it. If you can’t see these things going on within these forum you are not looking hard enough.

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Are you aware that Jon is a Type 1 LADA?

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Are you sure? I thought he was a Type A diabetic. :joy:

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I thought you were the type A with the marathons and corporate connections! I’m type B so much as I get the bike out of the garage.

Thanks again for inspiring the waterproof watch + easy access carb setup for ocean activities…

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I thought he was pre-diabetic, and changing his diet (including alcohol, avoiding carbs as “allergy”) was able to get in non diabetic range.

From his website

> Thanks to my CGM, I have found a mechanism that not only keeps my body in better health (walking briskly for 1 to 2 miles/day is better for you than an apple a day!), but appears to replace the need for manufactured drugs or injecting myself with insulin to get my glucose levels back in the healthy zone.

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I guess that makes this all the more amusing. The “expert” has no empirical or experiential evidence upon which to base their expertise, nor any training or research.

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Actually I am aware that Jon thinks or wants to be type1 and identifies in this forum as T1 but I have read his manifesto. In it he says he was diagnosed as Type 2 but that he believes he may be LADA. I have read nothing in in manifesto that convinces me that he is not Type2. or that his diagnosis has changed.

I will be fair, as @MM2 says he is pre-diabetic, I think prediabetic T2 with a lesser chance of being pre LADA. Whatever be the case my point is still valid, he doesn’t yet know what it is to be T1 and probably never will.

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