I’m not suggesting we manipulate language simply to avoid something negative by society. I think I may need to update the OG post to include a recommendation that people read all the chapters leading up to this one as well. The broader issue I make in the prior chapters is that the term diabetes just isn’t an optimal term, period, to describe the various versions of conditions that live within it.
Well, if I’m on your timeline then I’ve barely touched denial! However, I’ve lived with a T1D for decades, so my journey is mixed between 2nd hand and 1st hand.
I agree that perspectives can certainly change as we grow. In fact, I think that’s one of the best reasons to hope for a long and healthy life – and to avoid complications driven by glucose toxicity! Working hard to avoid complications down the line is a big part of the other chapters in the document. And it’s what’s essentially behind every chapter in the manifesto.
No, I was just speaking more broadly about language in general.
I generally bow out of discussions about changing the term diabetes. I have seen that discussed ad nauseam, and have no particular problem with the term myself. I have also seen language shift over the years (from juvenile diabetes to insulin-dependent diabetes to Type 1 diabetes), and it has never actually seemed to make any difference to the experience of people living with diabetes.
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For what it’s worth, what I suggest in this manifesto is quite different than any of these prior attempts. But some people just aren’t interested and that’s fine. I am deeply interested, so I wrote a lot about it. 
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@JonDeutsch. Writing your manifesto will ultimately mean more to you than anyone else, as it is a deeply personal expression of your own experiences.
We all come from different walks of life, have different life experiences, and have been affected to various degrees with medical conditions that may or may not be diabetes related.
I applaud your desire to examine that which seems to have affected you profoundly, that is a very worthwhile pursuit. My experiences seem to be significantly different than yours, and I don’t have the same animosity towards the term Diabetes that you do because it doesn’t define me or my life in my eyes or anyone else’s.
@JonDeutsch pursue your dreams, and I will refrain from commenting on your manifesto going forward.
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@JonDeutsch I think you will find many people in the world would feel victimized by a hang nail . Or the loss of their hair when they get older. Mentally healthy people are not like that.
I have been diabetic for almost 50 years, and not once in those many years did I feel victimized. At 70, if anything, I feel blessed.
But you keep writing for those with deficiencies, but I really have none.
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Jon, The first characteristic of living with diabetes I learned online (here) was YDMV. It is a very empowering concept and has no victimization attached to it. It applies to just about every detail of how we manage our 24/7 diabetic lifestyles and outlook on life.
I suspect that you are noticing diabetics who go online on FB or wherever to talk about their victimhood and you may be generalizing based on that sample. I believe the proportion of diabetics who feel victimized vs empowered is probably the same as the proportion of the general public who feel victimized by “whatever” (their parents, society, their looks or IQ, politicians, bankers, etc.). There is a victimization culture running amok these days especially online and in the press. I doubt that diabetics are immune from falling for that BS.
I should confess that I have explained to friends that I am addicted to insulin but as long as I keep feeding my habit all is good for me. For those who know me, it does not matter what Type we call it or if I am “diabetic” or a PWD. For random people on FB, I don’t care.
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@JonDeutsch Jon, with all due respect, after reading the chapter and all of the comments, it seems to me that you are being somewhat passive-aggressive.
You write passionately about things that are controversial and that clearly bother you about diabetes. In fact you are lobbying to effect a change in the community and in society at large.
Yet, in most of your responses you “back off” from your strong beliefs and tell us “that this doesn’t apply to you”, “this is just how I feel”, “I am just bringing this up to stimulate discussion”, and the like.
This passive-aggresive behavior only serves to muddle your message and anger our members.
Perhaps you should reexamine the presentation of your feelings.
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For all I know, this is accurate. But the vast majority of diabetics in my life are clueless about what their condition is, and why it is. They just follow doctor’s orders and take lots of drugs and are proud to have A1c’s under 7.5.
This in conjunction with a large number of confused newly diagnosed people that, yes, I mostly see on FB forums to be honest, is what compelled me to write what I wrote.
It’s clear that this forum is not where these victims come to commune. My post was not intended to indict this forum/site or any member of it. I shared it here, frankly, because I respect this community and wanted to gain a collective POV. I had not expected to insult and aggravate so many people in the process.
I will have to re-look at this chapter to see if there are ways that I can keep my message as laser-focused as I want it to be without having the side effect of insulting people in the process.
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I appreciate your honesty, but I have to confess that I’m confused by your assessment.
I wrote a manifesto, in a manifesto-style. It’s designed, by its very nature, to kind of shake things up, challenge the status quo, and provoke new thinking around very-accepted topics.
As a member of this community, I am a member of this community. And as a member, I aim to be respectful, honest, and caring. I really value connecting with people. Even when we do not agree. As a member of the community, I feel it is my responsibility to keep things civil, friendly, supportive, and relevant - even when being told that I’m being arrogant and ridiculous by other members.
I regret that these different different tones and styles confuse you and the community. Not my intent.
I hope this makes sense? If not, and if I am doing more harm then good, I would be OK if you felt it better to remove this post and thread entirely. I’d rather it not be removed, because I enjoy a good debate. But, at times in this thread, it has not been a very rewarding discussion for me. It’s been more painful than energizing, that’s for sure.
I have learned one thing, though: that people are more prone to being insulted by this content than I had ever expected. I had 5 diabetics (including a Nun!) review this document prior to publishing and the feedback was over-the-roof positive.
“Generally, I love your style of writing, Jon. I feel as though you are engaging and speaking directly to me. The content is truly outstanding. I am so happy that you are pursuing the manifesto because it’s a game-changer.” - Sister Kathleen
You could understand my excitement in sharing this manifesto with others based on feedback like this.
Cheers,
Jon
Jon, I hope you are ready for a real barn burning debate if you decide to create a thread from your chapter on Complications of Diabetes.
My blood sugars over the past 50 years have given me the opportunity to successfully go to dental school (they didn’t cut me any slack either), and have a 43 year successful career in dentistry. I am sure I don’t have “glucose toxicity”. However, I have had medical problems (complications) as the result of the underlying disease. Hashimoto’s thryroiditis, premature terminal cataracts, idiopathic bilateral subdural hematomas just to name a few. They are all more common diseases in “insulin deficient” individuals despite maintaining glucose normality.
So to label as naive some of your writings is not out of line.
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I am ready, and thank you for the invitation to post about that chapter. Next week.
Accusing me of being naive before giving me the opportunity to engage in said barn burning debate is a bit presumptuous, no? The least you can do is give me the opportunity to prove that I’m naive!
Jon, don’t worry about it, I did not intend to come across as insulted and I doubt most commenters did. Your manifesto seems to have veered away from the reality that I and others here have grown accustomed to. It’s of course possible that today’s reality differs a lot from the first months or year after diagnosis.
I don’t want to veer off topic but I also rankle when I read a clinical study that does not include a large sample of “people like me” but instead is dominated by age groups or A1c’s that I can’t relate to. My first thought is usually “There’s not much here I can use.” My second thought is “what if…these people don’t have diabetes the same way I do?”.
YDMV sums up my approach to the universe of attitudes about living with diabetes. Unfortunately that makes me unreceptive to some of the statements and ideas in the manifesto which hit me as overly broad.
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Claiming that facts (“Diabetes is a disease”) are bogus and borrowing terminology from oncology (“If you have thought or said “I’m a diabetic” you’ve let an insulin disorder metastasize to your mind”) to describe others is somehow civil, friendly and supportive? Is it that surprising that I think those claims are arrogant?
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Yes, I have accepted diabetes as part of my identity. The alternative would mean that I am diseased. And that I refuse to accept. This attitude has enabled me to have a normal life. There is nothing that I didn’t do because of diabetes, nor won’t do. And I am a month from being 80 years old. Age may inhibit me, but diabetes, never.
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I’m sorry that you didn’t understand what I said in the post you quoted me in above. I’ll restate:
The manifesto is designed to create conversation, so it is bold and provocative. And it’s predicated on a philosophy I’m advocating as a Type A Diabetic. I even added a “Is This For You?” page to help level-set the perspective and biases that come along with this manifesto.
Me, as Jon Deutsch, not writing a manifesto, is who contributes on this forum, as a respectful member of the community. Perhaps I’m odd but I can separate a purposeful document from personal conduct. And I don’t see it as passive-aggressive. I see it as, at best, giving different parts of myself to the community, and, at worst, compartmentalizing my contributions that are leading to some confusion in some circles.
I’ll state once again - it was my error to post only this chapter and not encourage everyone to read at least the introduction chapter defining what a Type A Diabetic is, and how this entire document is geared around this philosophy. Just because I am advocating a philosophy of thought around this condition doesn’t mean you need to be insulted when you disagree with it. There’s far too much of this out there in our society already. I thought the document would raise eyebrows, sure. But, boy, some of the replies here are just so angry and upset - and accusatory of my competency, knowledge, and/or motives. Not at all what I expected!
I invite everyone to read the Welcome and What is a Type A Diabetic chapters as well, which briefly set the context, purpose, and rationale for the manifesto, including all the ideas within it.
I hope that my biggest mistake was actually sending you directly to a chapter without offering you the opportunity to understand the context in which that chapter was written.
This is essentially the sentiment that I am advocating in the manifesto surrounding the culture of diabetes. Thank you for sharing. What we call things matters. And how we think about things (mental models) really matters. Nobody has to be a Type A Diabetic, but if they are, they will re-think their condition as just that – a condition, and not let it metastasize into an identity. That’s just the Type A Diabetic way as I define it. It (clearly!) may not apply to many people’s way of looking at things, and that’s fine. But I am actively advocating that it would be a healthier mental model for many who may not even realize it’s an option.
Do you think or have any evidence that there is more of a sense of victimization among people with diabetes than there is in any other chronic disease community such as cancer, kidney disease, RA, COPD, or blindness? Or is this the only chronic disease community with which you regularly interact?
My guess is that there is a range of people in all of those communities …
Stay safe!
John
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Hi John,
I don’t have much experience outside the diabetes community. There was another commenter on this thread that there is victimization across all spectrums of life, and that diabetes wouldn’t be much different. I agree with this in the general sense. But the reason I wrote what I wrote is because I see diabetes being wrapped up in identity in the diabetes community, which I think pushes victimization a level further.
To put a finer point on what I’m getting at: While I’m certain there are a fair number of people who are blind who feel victimized (I know I would), I wonder how many refer to themselves as “one of the blind.” vs. “I am blind.” By saying “I’m a diabetic,” I see this as being equivalent from an identity perspective to “I am of the blind” – as if it’s a tribe they belong to. “I have diabetes / I am blind” to me is a completely different mental model from “I am a diabetic / I am of the blind.”
[EDIT: I missed an “a” in my initial post, I’ve since added it and bolded it]
You are literally saying that saying “I am diabetic” is not like “I am blind” when it quite literally is the exact same structure? You are inventing some very convoluted and illogical rationale as to why it’s not, without any real evidence that that’s accurate and how other people view their language choices. I know I certainly don’t mean “I am diabetic” to reference being part of the community. It means I am a person who has diabetes, but prefers to be more concise than that most of the time when I talk about it. I suspect that’s the more common intent behind the phrasing…
Oh by the way, if someone takes meds for hypertension or high cholesterol, they absolutely maintain those diagnoses, just listed as controlled. I don’t know where you get the idea that those conditions evaporate when they are under successful treatment? Definitely not. Also, in psychiatry, someone with a chronic mood disorder even if it gets to remission, retains that diagnosis too, just “in remission”, because that’s really important information for medical providers to have. Those types of inaccuracies stated emphatically as fact also don’t exactly lend credibility to the manifesto, since they suggest you haven’t really done your homework, yet are loudly declaring many things to be broad facts. I think this is where people are calling you naive—I think it’s both that and that you seem to assume your personal feelings and thoughts are both factual and broadly applicable, when many may not be. Not to mention that there is considerable research in the field of behavioral medicine that I’d suggest looking up and reading first if this is an area in which you really want to delve deeply and make a difference. You’re going to need better information and education about these topics if you want to tackle them in a way that convinces many people, especially the more informed consumers and any experts. Right now it’s just not there.
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