Is Diabetes even the right word to use?

[MM2]

I have searched for Diabetes Manifesto" and see several books on Amazon, by other people. I’m curious to know what direction they took.

[Boerenkool]

That clarifies a lot. I guess I didn’t read that chapter of the manifesto.

[Boerenkool]

So that’s literally a walk in the park then?

[JonDeutsch]

@Boerenkool

@JonDeutsch

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.

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.

Clearly what we have here is a miscommunication of the first order. You’re going to have to excuse my confusion, but where are my baseless accusations? The very chapter we’re talking about starts with actual quotes that I copy-and-pasted from online communities. That, by very definition, isn’t baseless. It’s literally based on patterns I see in communities writ large.

Literally based is the opposite of baseless.

And, sadly, you are one of many who have misconstrued my “metastasized” statement as somehow having to do with diabetes or health. No. As I clearly preface in the document immediately prior to making the metastasized claim:

It’s one thing to say “I have diabetes” or even “I am diabetic” – at least this lays out that you have contracted an illness, disease, or disorder. But it’s an entirely different thing to transform what you have into what you are.

Once you connect a disease to your identity, the disease is now more a part of you than simply your insulin disorder. The disease is now in your mind as well.

I’m sorry if you conflate this with insulting people, but this is not what I’m doing at all. I’m making an observation about when a medical condition morphs into an identity. And my manifesto has a clear point of view that diabetes should not be an identity.

You may disagree with this! Great! But this is so different from your accusations of me insulting you and others.

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.

Now this is a valuable critique! I welcome this and more like this. It will make for a better document as I continue to evolve it.

@JonDeutsch

nor that what I said is considered generally insulting

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?

Again, you are stuck on this metaziation thing. Please re-read. It has nothing to do with cancer, and everything to do with identiy, using cancer as a metaphor.

@JonDeutsch

I cannot control everyone’s reactions to everything I write, obviously.

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.

100% agreed. If I failed at making a substantiated argument, I will aim to improve that. My objective is to have every argument in my manifesto suitably substaintiated. But I will need more than ad hominem attacks to work with to make improvements.

@JonDeutsch

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?

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.

Vague disparaging comments aren’t helpful.

@JonDeutsch

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.

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.

Most of the people who support and hold my ideas in high regard think of the responses here as people who are too tied to their identity to see another way. That my suggestions rub against the investments in self that so many diabetics have made to try to make sense of the condition that it appears as a threat…to their identity. There may be a grain of truth to this, but I honestly do not know the source of your or others’ vitriolic scorn.

I’m “lucky” enough to have contracted my insulin disorder at the ripe age of 50, so I have an “advantage” of sorts of having a lot of coping strategies that perhaps others did not. But that’s why I was so eager to share my personal revelations with the community – I think I’ve found a better way to cope, deal, and manage this condition. And while it may not work for everyone, I wanted this point-of-view to at least get a fighting chance against the mainstream orthodoxy that I see in the world. An orthodoxy that I believe is hurting people and making people unhealthy at a grand scale.

@JonDeutsch

There are plenty of people who have sent me notes thanking me for helping them reset their thinking. This outcome was the intended intent.

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.

Your generosity of spirit is breathtaking.

@JonDeutsch

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.

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.

To the best of my recollection and knowledge, I’ve demanded exactly nothing except that people refrain from making ad hominem attacks - of which there were many. I will repeatedly state that I expected more from this community and its moderators to keep things civil, and that I’m disappointed in the results.

There are ways to debate ideas without ad hominem attacks. Some here have done a nice job of it; too many have not.

Even if I did attack you and others in my manifesto with malice (which is categorically untrue), a community I’d be proud to be a part of would not retaliate in kind. This one not only incorrectly presumed malice of intent, but also retaliated in kind when it presumed the worst.

[JonDeutsch]

@Gary

@JonDeutsch

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.

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.

Fascinating. I guess you didn’t read my manifesto where I write, on the Welcome page:

It looks to be that I have a less common form of diabetes called LADA – Latent Autoimmune Diabetes in Adults.

LADA is not super-common, but it is what the medical community labels as Type 1.

The fact that you don’t even get the type I am is part and parcel to my entire hypothesis that we need to rid ourselves of types in diabetes. It’s an unmitigated disaster.

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…

@JonDeutsch

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”

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.

Yeah, I made that very point in my post on this very site. Sadly, it doesn’t seem to matter much of what I say. Many people here seem just determined to be angry at me for suggesting things that go against orthodoxy or settled point-of-views.

Has nobody here really been exposed to people with diabetes who think its a homogeneous syndrome that is an absolute bear to live with? Has nobody seen the research that shows positive correlation between depression and diabetes? There are real issues out there. Me trying to push the boundaries of discourse is my way of trying to further the state-of-the-art of thinking. Unfortunately, from my point of view, far too many people construe (albeit tough and dispassionate) challenges to the status quo as attacks and insults. This may be an inescapable consequence of my style of boundary pushing. If so, that’s a real shame. Because as I see it, people are letting anger and defensiveness get in the way of potential progress.

[JonDeutsch]

@Eric

@Boerenkool

Are you aware that Jon is a Type 1 LADA?

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

Yes, he’s sure. And he’s right. Type A is orthogonal to the outdated and unhelpful numeric types.

I continue to be fascinated by the number of people who suggest that I’m not what I say I am, or that I am a fraud, or that I’m just out to make a buck. And so many other baseless claims. All made right here on fudiabetes.com.

If you read my Manifesto, you’d have learned that I’m LADA on the very first page.

If I had the energy, I’d compile all of the baseless claims made against me personally. It would be a sight to see. But it’s really not worth my time. You can read through the threads I’ve created around my manifesto here and see for yourself if you’re so inclined.

And yes, I’ve stopped creating new posts around the manifesto because this community doesn’t seem to be interested in that kind of discussion and debate. Live and learn.

[JonDeutsch]

@Gary

@Boerenkool

Are you aware that Jon is a Type 1 LADA?

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.

I am not pre-diabetic. I’m Type 1 with some lingering pancreatic function. AMA.

[JonDeutsch]

@Boerenkool

So that’s literally a walk in the park then?

My approach to managing my insulin disorder does seem to be a walk in the park compared to virtually everyone else I know who is diabetic (of any type) who is serious about not getting complications.

This is, in part, why I penned my manifesto. I’ve taken a novel approach to management (including using alcohol therapeutically, exercising strategically, eating as if I have a carbohydrate allergy, and using inhalable insulin exclusively) that has, thus far, worked well for me. I’m sure things will continue to progress, but it’s not like a pump would change my situation much. It’ll just be another thing to attach to me. Suboptimal? Yes. But far better than complications.

The broader point is that I’ve decided to take control over my condition instead of letting it take control over me in any way, shape, or form. And I wanted to share this option and perspective with others who might not even be aware this path exists. When this happens, its exhilarating. Apparently, sharing this thought process with “old pros” here doesn’t work quite as well.

[ClaudnDaye]

@JonDeutsch

The broader point is that I’ve decided to take control over my condition instead of letting it take control over me in any way, shape, or form.

Of everything you’ve said, I think this sentiment is what bothers me the most. You are in a forum where we do this (taking control of our conditions… Hence the name FUD – For Unlimited Diabetics)… Every… Single…Day. You’re manifesto is bringing nothing new on this community. Your quibbling over semantics bored and disinterested me from the beginning and I shut off early on.

Listening to you reminds me of a social worker who has no kids who is trying to tell parents how to raise their kids.

[Boerenkool]

@JonDeutsch

Clearly what we have here is a miscommunication of the first order. You’re going to have to excuse my confusion, but where are my baseless accusations? The very chapter we’re talking about starts with actual quotes that I copy-and-pasted from online communities. That, by very definition, isn’t baseless. It’s literally based on patterns I see in communities writ large.

Well, your quotes don’t turn up any results on google, except your manifesto. That’s quite suspicious if you copied them directly from online communities. Still, you don’t provide any evidence that these quotes are an indication of victimization complex, nor do you provide any data or other kind of evidence of a pattern within these communities. As long as the chapter remains in this state, I have to conclude that your claims are baseless.

In addition, not all the quotes are actually false. The statements about wound healing and life expectancy are true on a population level and that’s probably what they mean. In scientific articles you might expect authors to include disclaimers like ‘on average’, but outside of that, people don’t. The fourth statement about needing pumps or injections for the rest of our lives, seems to be written from a type 1 perspective (if the statements isn’t made up as you claim), so I would rate that as true. And saying that isn’t true because actually some specific things may not be needed in the future due to technology, is just pedantic, sorry.

@JonDeutsch

I’m making an observation about when a medical condition morphs into an identity.

That’s not an observation. That’s an opinion on your own usage of language. For me and many others, saying ‘I am a diabetic’ has nothing to do with identity. Diabetic simply means person with diabetes. That’s all.

@JonDeutsch

And, sadly, you are one of many who have misconstrued my “metastasized” statement as somehow having to do with diabetes or health. No. As I clearly preface in the document immediately prior to making the metastasized claim:

That preface doesn’t disprove anything I said. The metastasis comparison is an analogy, I know, but it is an insulting analogy. If you won’t understand that, we’re not going to get anywhere.

@JonDeutsch

It has nothing to do with cancer, and everything to do with identiy, using cancer as a metaphor.

It’s precisely that metaphor that is so insulting.

@JonDeutsch

Vague disparaging comments aren’t helpful.

OK, some examples:

• I think I already pointed out in that other thread that etymology doesn’t dictate the current meaning of words, so statements that diabetic means “those who pee a lot” are nonsensical.
• You take issue with the WHO for defining diabetes by its untreated state, which (defining diseases by its untreated state) is just normal practice in biomedical sciences.
• Your take on complications is very narrow and highly reductionist. E.g. DKA and hypo unawareness are not complications according to your view that hyperglycemia is the cause of all complications.

I’ll leave it at that for now.

@JonDeutsch

Your generosity of spirit is breathtaking.

No seriously, the more often you repeat how many people have thanked you, the more it comes across as patting yourself on the back. That perception may be wrong though.

@JonDeutsch

To the best of my recollection and knowledge, I’ve demanded exactly nothing except that people refrain

@JonDeutsch

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”?

Don’t say that isn’t an implicit demand for apologies.

@JonDeutsch

There are ways to debate ideas without ad hominem attacks. Some here have done a nice job of it; too many have not.

I agree, but I don’t agree that you’re as innocent as you pretend to be.

[Boerenkool]

@JonDeutsch

Has nobody seen the research that shows positive correlation between depression and diabetes?

Are you suggesting that depression is a sign of victimization?

[ClaudnDaye]

@JonDeutsch

Has nobody seen the research that shows positive correlation between depression and diabetes?

There is a correlation between EVERYTHING WE KNOW AND EVERYTHING WE DO, to depression…depression is result of an incalculable numbers of things. Whooptie doo that research shows that diabetes and depression are linked. Who’s the genious what figured that one out? I wish more people would just use common sense sometimes. I mean, really…D’uh? Diabetes (if you allow it to become so) can be a VERY depressing disease. Wonder why it causes depression? Hmm…let me ponder why that could be.

And EVEN IF Diabetes can cause Depression, it’s STILL got nothing to do with “victimization”…it has everything to do with just how much damned work it can be and how much of your life it can take over.

I mean seriously…all the ground-breaking things we are learning here.

On a related note…I found out that my youngest sons who still wet the bed are causing the sheets to become soiled! And I think I’ve connected the dots on this one! – Peeing in bed causes…get ready for it – soiled bedsheets!!! I figured out one out all by myself!!

[Boerenkool]

@JonDeutsch

Most of the people who support and hold my ideas in high regard think of the responses here as people who are too tied to their identity to see another way. That my suggestions rub against the investments in self that so many diabetics have made to try to make sense of the condition that it appears as a threat…to their identity. There may be a grain of truth to this, but I honestly do not know the source of your or others’ vitriolic scorn.

That’s a nice Kafka trap combined with an appeal to the people.

[ClaudnDaye]

@JonDeutsch

people who are too tied to their identity to see another way.

Wow. lol…passive aggressive much? That’s an indirect attack on each person here who thinks your words are nonsense. Because we disagree with your opinion (being passed off as rigerous research and analysis and challenging all actual scientific evidence and organizations), it is only because “we are too tied to our identities to see another way.” Really? lol

[ClaudnDaye]

A thread locking may be in order…this is not (nor will it) go anywhere.

[Eric]

@ClaudnDaye

Peeing in bed causes…get ready for it – soiled bedsheets!!!

No, peeing in the bed causes diabetes. I learned that the hard way!

[JonDeutsch]

Sorry that my document, which is purely optional to read, but does include novel and provocative ideas that I’ve not seen anywhere else, bothers you so much. Not my intent whatsoever. Cheers.