I have not once (besides the title) perceived @JonDeutsch to be “questioning” whether or not there is a victim complex. Everything I have read from him in these threads and everything I read in his manifesto agree with your assertion that he’s clear it is true and he’s trying to convince others of it. The question mark on the title may be there just to use the rebuttal and claim it’s only a question. I think we can ascertain that he’s pretty certain it is occurring which is why so much time has been devoted to the manifesto and his dialog here with us.
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That’s OK. I promise I won’t be policing everyone’s verbiage if I’m successful in making a dent in the status quo. Did you happen to read the chapter(s) where I go into why I feel the term diabetes is so sub-optimal? I’m well aware that many people don’t get hung up on words. In a way, that’s really nice and liberating. But, me? Yeah, I get really hung up on words. That’s why I ended up in marketing and communications in my career as of late - despite starting out with a degree in computer science.
There’s no doubt that my new infatuation with the power of brands as the conveyor of ideas comes through in my diagnostic of the term diabetes. My hope and aim was simply to put a spotlight on this and generate a discussion around it, with the hopes of moving enough minds to make an improvement.
Thank you for the kind words (even if you disagree with some or all of my ideas and recommendations). I appreciate it.
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I see them as acknowledgement/acceptance of biological fact with the added bonus of including a tribal identity into the statement. “As a dyslexic, I have to acknowledge that I don’t spell as well as others” removes the tribalism/we-ism.
But the issue I have with this comparison (which, btw, is pretty good challenge of my position!) is that these acknowledge foundational truths about the condition. One of the central conceits of my manifesto (which, I fully acknowledge will be seen as controversial) is that diabetes doesn’t do anything but stop something from working right. The primary dangerous result of this fundamental system dysfunction (be it insulin resistance, insulin production, or some combination thereof) is glucose toxicity. And it is glucose toxicity that creates all the damage that we all try so hard to avoid. Glucose toxicity is the resulting dyshomeostasis created by diabetes that slows down healing, damages blood vessels and organs, etc.
I try oh so very hard to try to make this point over and over again throughout the document. I feel like we’re looking at the wrong thing. If the main topic is diabetes, then we’re already lost because there are so many different types, we can’t even start there as a baseline assumption without digging deeper into which type you have. Then, once we figure out the type of diabetes, we have to make sure that the type is even right/accurate, because who knows how much of the “diabetes” is resistance vs. production disorder? And once we figure that out, then it really does matter how well or poorly each patient manages their glucose equilibrium. Those who manage it well will have less complications. Those who manage it poorly will almost certainly experience more severe complications.
By saying “we as diabetics don’t heal as fast” is, to me, more akin to saying “we as autistics don’t understand people.” Neither are universally true, because both conditions exist in a continuum of diagnoses and symptoms. And both can have some agency in condition management that can improve the symptoms (arguably more for diabetics than autistics, but I’m not an expert in autism so I can’t say for sure).
So, yeah, I kind of made this point to @Sam a few posts back, but I’m happy to try to clarify again:
My manifesto is a document with a purpose and a style designed specifically around the type of document it is - a manifesto. With this, I absolutely tried to have some fun with the in-your-face style (fist-punch image and all) to help grab some headlines and make the topic engaging and, yes, controversial. A boring document I felt wouldn’t serve my objectives as well as a bold and provocative on.
But, me, Jon, as a person in this community, engaging with fellow human beings, I felt it was important to reframe my chapter as much as I could in my initial post to ensure that the community members understood my intent in getting feedback and discussion here around this topic. I put the question mark there with full intent to signal to the community that it is, for me, Jon, a question. The manifesto, though, is damned sure of what it believes in. And it does this by creating the “Type A Diabetic” archetype. If you notice, I never state that I, Jon Deutsch, think everyone’s a victim. I state that the Type A Diabetic position on any given topic is x, y, and z.
The manifesto is a product. The Type A Diabetic is an archetype. I am a human being who has decided to be a Type A Diabetic.
No, it’s not. Etymology doesn’t dictate the current meaning of words. Words can change meanings or gain additional meanings. Lots of words, including names of diseases, have etymologies that don’t correspond to the current meaning. So when you state in your manifesto that the meaning of diabetics is “those who pee a lot”, that’s just flat-out wrong. The only meaning of diabetic (noun) is a person who has diabetes. Diabetes in this context isn’t used in the original Greek or Latin sense, but the current medical definition.
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I would like to point out that my son pees no more than any other kid his age. Thanks to insulin. 
Prior to his diagnosis his HYPERGLYCEMIA caused him to pee a lot, but he has diabetes and he pees only once or twice per day…I’d say that’s pretty regular.
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YES! THIS! 
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For me, this is where this thread jumps the shark. I suppose that a fatal heart attack would be very stressful to the body, leading to a massive release of stress hormones, which of course would induce the liver to dump glucose into the bloodstream.
I think I’m done reading this thread. But I’ll comment that I don’t see how “diabetic as identity” or “diabetic” has anything to do with victimization, any more than “Deaf” or “deaf” in their community.
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This is not a langauge issue, it’s a concept issue. My issue with allergy and intolerance has nothing to do with feeling personally uncomfortable with one or the other term. Both terms are accurate for the concept they describe. But they describe completely different concepts and are not interchangeable. The issues you bring up just describe existing concepts with alternate terms because you’re personally uncomfortable with the conventional terms.
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This post is a great reminder as to the value of this website and the community that it has created. In my 2+ years of reading, this is the very first time that I have encountered any combinations of personal marketing and toxic, inflammatory, nonsense. I find it unfortunate that it received more attention than it deserved and hope that moving forward it’ll disappear back into the shadows from which it came. Perhaps FB, Youtube or LI are more keen on these types of communication dynamics.
I generally don’t talk about myself, but this is a fun opportunity to brag a little: I hold 2 masters’ (math and computer science) and a gold medal in the junior olympics. My career has gone well. I am not, and will never be, a “type A” person.
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Language describes concepts. They are inextricably linked.
The conventional term of diabetes is problematic, but it’s not personal. It’s an assessment. Diabetes is just not an efficient term to describe all the different physiological situations it tries to identify, because it was leveraged from describing a symptom.
The growing number of types of diabetes (and the confusion around them, like LADA “type 1.5” and Alzheimer’s Type 3) only make matters worse. We can do better. I know we can. People’s desire to stand by tradition has a long…tradition in human culture. But we can also make progress sometimes.
Often, progression takes willpower and the ability to withstand attacks from those who are wedded to the status quo. I’m not trying to be a martyr here. I’m simply trying to engage in a conversation about the potential evolution in how we think, manage, and treat these series of conditions. Most of the manage & treat bits are for Type 2s…definitely more room for flexibility there. But even for Type 1s, I find it obscene that so many Dr’s aim for a 6-7 A1c for Type 1s - and don’t push for every patient to get a CGM (affordability allowing)-- and I will continue to push for evolution in thinking here.
These topics are in other chapters of the manifesto. This thread was supposed to be limited to the chapter of victimization in the community. I’m sorry that I let it leak into other areas, but as you can tell, I feel compelled to address virtually every thing every person has posted, even if it’s off-topic.
Really? Maybe it’s just because I’m caregiver to a young T1D, but our Endo wants us to NOT be in the 5-7% range…they’re happy with 8-10%…which we find laughable. We WANT to be in the 5-7% range because that’s how we can help Liam prevent the longterm reprocussions of hyperglycemia.
I do agree with the sentiments of some T1D’s being disapproved for CGMs…to me this is a BIG injustice to PWDs. If I could have only 1 piece of equipment for our son, it would be the CGM. I love our Omniloop, but I could manage the insulin on my own via MDI but not knowing his BGs before we were approved for the CGM kept me up all night checking his BGs every half hour…I was a wreck early on in his diagnosis…most of that train wreck you can read about because I posted most everything we experienced in 2016 and 2017 as we were going through the learning curve and I entered the acceptance phase…entering that phase took me longer than most because I’m stufforn af.
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@JonDeutsch, one of my takeaways from this is that you must not have spent much time with people with serious chronic health problems requiring significant effort to manage if you think diabetes and the degree to which it becomes an identity and/or to which people form community around it is in any way unique among disorders. It’s not, whatsoever. I also have a connective tissue disorder called Ehlers Danlos Syndrome which causes myriad issues due to defective collagen, and people with EDS often refer to themselves as “Zebras” (as a counter to the medical adage “when you hear hoofbeats, think horse not zebra” given that we are the folks who actually have the rare condition and who are rarely diagnosed in a timely fashion). Anyway, that has if anything even stronger identity than diabetes, probably because if anything it can affect day to day life even more significantly with greater infringements on quality of life. But you see the same thing happen with many physical and mental health conditions, because it takes acceptance and finding a way to live with your disorder in order to live as healthy and well-adjusted a life as possible. And that’s coming out of loads of research on the topic that finds that acceptance and interventions that foster acceptance improve outcomes, in diabetes as well as many other health conditions. What that ends up looking like for individuals, including in terminology, is going to vary, and for some likely will involve identity-based approaches.
To me, the manifesto has a lot of content and a tone that honestly reads as denial being turned outward. Maybe you find the idea of diabetes having that much influence on you/your life threatening? Why are you trying so hard to save people from a “victimization” that they themselves don’t seem to have a problem with? What is the function of that behavior for you? That may be a more important question to answer.
Also, it’s frankly insulting to have someone who doesn’t even need exogenous insulin come on here and blast 6-7% A1cs as a goal. You have no idea whatsoever what full blown T1 control actually involves yet. I hope it is a very long time until you do! And if even when you eventually get there, it’s possible you as someone with very slow onset LADA may well maintain more insulin production, and as a man, you won’t have to deal with the complexities of ovarian reproductive hormones. If you don’t have other chronic health conditions, particularly those involving heightened inflammation, you also won’t experience that added significant complexity factor. You may never understand personally the very real challenges many face in managing their diabetes. So before you go suggesting that that’s a problematic goal vs an entirely reasonable one, maybe actually listen to more people with diabetes instead of talking at them, and realize your personal experiences are extremely limited and not particularly generalizable and thus frankly, insights based primarily on them (which is what the manifesto seems largely to be) may not be that valuable to the majority of us. I think that’s what some folks are politely referring to as “naivete”. I’d argue it’s almost good example of mansplaining, albeit to a mixed gender audience—someone coming in and telling people “well, actually…” about topics they have greater experience with and knowledge of. And that’s probably at least part of why you’ve gotten so much pushback.
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I think we’re saying the same thing? Ideally, we want to be in the 4-6 range. Too many docs (including the docs treating my T1D father) were happy to have him in the 7s (and even 8s!), thinking that it will reduce hypoglycemic episodes. Meanwhile, he’s had tons of hypoglycemic instances, and now has so many traditional complications as well. It’s maddening to me that he wasn’t given better advice over the years.
And T2Ds as well! So many are slowly “burning up their vascular system” by running high glucose levels between finger pricks and leading them to complications down the road. What % of the $327 BILLION dollars (in 2017) that diabetes costs annually is due to complications vs. management? I’m guessing it’s around dealing with complications. It would seem that better guidance would lead to better outcomes here.
For what it’s worth, a T2D who recently read my manifesto completely changed his entire approach to treating his T2D and is now looking at his condition more in terms of a food intolerance than something that he just takes a pill to fend off. He’s on the path to go from a 7.5 A1c to a 5.8 at this rate in 3 months. His doctor will not sanction a CGM, and his diabetic dietitian still will not sanction a low-carb diet for him. But he’s trying it anyway based on reading the manifesto.
I think 7’s are also OK for those who are doing their best and just find it challenging given their lives (which I don’t know anything about). Yes, we ideally want to stay as close to a non-d A1C as we can (between 5-6% is the normal range), but a lot of doctors who are telling their patients 6-7 are patients who may have been 8-10% or higher before consulting them. 6-7 isn’t anything to be ashamed about as a T1D and many have tried for years and still can’t reach that goal. I respect their efforts and if 6/7 is what they can manage, then I think it’s phenominal for them.
Personally, as a caregiver to a young T1D, my goal has always been to get too and stay under 7%. Our latest two A1C’s were 5.6 but even if Liam was 7% I wouldn’t be beating myself up over it because 7% is still great control.
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My dad has been T1D since I was born. My life partner of 25 years has chronic depression. Neither have picked up any of the group-think victimization that I’ve personally witnessed in my 18 months engaging in the broader diabetes community online (again, once again, not specifically here at FUD. in general).
This is not the first time this has been suggested. I find it fascinating and wondrous.
All I can say is that this chapter was inspired by a series of statements made by people I know personally and people who I do not know personally in online forums that spelled out a pattern for me. And I labeled this pattern victimization because I see identity being used in a way that I, for one, happen to see as unhealthy. Look, if you think “being a diabetic” is fine, then great. Nothing to solve for there. But when I see people say “as diabetics, we need to x, y, z” (where x, y, and z is some sort of painful truth for them but not a universal truth for all diabetics), it gets under my skin so much that I feel the need to write something about it and share it. It’s just that simple. That’s the psychology behind this.
I’m not blasting anything. I’m sharing research so that people are keenly aware of what typically causes damage in people, and what does not. In my experience, not nearly enough medical professionals are doing a good enough job here.
Oh, but yes I do. See above note about my dad. And, as an aside, this is like the n’th time someone on this forum has told me, without any apparent knowledge of what I know and do not know, what I know and what I don’t know. I have to say, it’s not a pleasurable experience when this happens.
Thank you! Me too. I absolutely agree that I, personally, currently, have it much easier than most any T1D. Probably a bit harder than many T2Ds. As someone who is petrified of needles, I will not go easily into the realm of insulin dependence. But, if/when I do, I plan on maintaining my A1c / glucose level controls. And, yes, I know what that entails (see: dad). And that’s in part why I developed the Type A Diabetic archetype. It’s a mind-over-matter approach for dedicating my practices and habits to overcome the build-in limitations of my damaged sub-systems.
And, guess what? I bet I experience burn-out at some point in time. Just like most others do. I’m not a super-human. But my hope and belief is that by creating this archetype, and assigning personal pride to it, that it will provide me with a cognitive tool to bring myself back to being proud of outsmarting my failing sub-systems once again.
It is this approach and philosophy that I want to share with others (as well as many, many other dimensions of diabetes) in case it helps them as well. The part I wasn’t expecting was, if my distinct approach doesn’t work for someone, that they would become toxically angry at me for suggesting such things.
Yeah, I get it. The Type A Diabetic Manifesto is very in-your-face and overly confident. Mansplaining is a good analogy. Here’s the thing, though: It’s a friggin’ manifesto! What do you want it to be? Timid and boring? I made a conscious decision to write a manifesto, not a blog post or a FAQ, to help some of these ideas punch through, hard. Why? Because I know people cling, naturally, to the status quo and to convention. And what I’m articulating in this document works against our nature so my hypothesis was to create an unconventional document with an unconventional style might create a stir, but it would at least get it on the map.
I also presumed (incorrectly) that the trappings of a manifesto-style document, combined with framing it around a made-up archetype of the Type A Diabetic, would allow most people to digest the rhetoric in that context. Most of the over-the-top rhetoric is designed more for engagement (and, even, entertainment) than finger-waving.
This, clearly, for this community here, was a faulty presumption. But you should be aware that there have been plenty of people (diabetes of all types) who have received this so well that they’ve already changed their behaviors and have encouraged me to share it widely. Specifically, I’ve received specific call-outs for the document “having a great tone that is instructive yet still fun to read.” This was my aim.
I’d suggest the feedback has ranged on this thread from thoughtful and trying to be helpful (including, for the most part, this very post I’m responding to) to accusatory, demeaning, and mean. Nevertheless, I think you’ve accurately diagnosed most of the reasons why the response has been as it has been. I appreciate you trying to help explain the dynamics to me.
Thanks for framing up the situation in such a way that gave me the headspace to explain some of the background behind my motivations and this document. I had not done so prior, and I do wonder if doing so would have helped reduce the heat at all.
Cheers,
Jon
I think judging others is a mistake, period. If 7s is good for you or someone you love, then that’s great. It doesn’t change the odds of developing painful complications down the road, but we’re all going to die of something, so it’s not like if you nail A1c you’re going to live forever. This is just about ensuring people are armed with the knowledge of what is known, and then let people decide what’s best for them based on that.
My document is simply stating that anyone has the opportunity to be a “Type A Diabetic” if they want to be. And being one means being pretty tough on your compliance and minimizing the glucose imbalance whenever possible, as consistently as possible.
Yup! This sentiment is actually outlined in the manifesto:
I understand the psychology behind the strategy of managing reasonable expectations across millions of patients. Many diabetics are initially diagnosed with 10-15% A1c levels, so reaching 7% or 8% A1c levels is a tremendous accomplishment.
But it goes on to say…
However, because the average patient doesn’t understand what the A1c really is, how it relates to hourly glucose levels (and spikes), and how this links to future complications, they go on their merry way happy that they’re meeting their doctor’s expectations.
It could always be better, and it could certainly be worse. I try to steer clear of judgments (I know, that sounds funny coming from me, right?), so I would not say it was “great” control per se. But it is clearly control you are satisfied with given the dynamics and situation you’re in.
My manifesto (and the Type A Diabetic credo) is an overlay on this: Too many people are blissfully ignorant about what a 6, 7, or 8 A1c means in terms of chances of developing painful, debilitating complications. If you’re aware of the risks and still feel good about the range, then I really have nothing to say!
Here’s a great analogy: I like to drink alcohol. It’s just one of my things. I used to enjoy expensive craft beer, then developed an insulin disorder, and now pay big bucks to enjoy fine scotch. I know alcohol is a toxin. I know that the more I drink the more brain cells I kill and there’s an increase in danger to my liver as well as developing cancer.
Yet, I still drink. To me, that’s not that different from someone saying that “I’ve done the analysis, and for me, a 7% A1c is right for me.” It’s totally fine. It’s just not super-healthy. Just like me drinking alcohol isn’t super-healthy. We all make choices. We all have to balance lots of things. Nobody gets out of this thing alive, so we each have to figure out for ourselves where we gives ourselves some slack, and where we clamp down.
It’s just that for a Type A Diabetic as I’ve defined it, no slack is given to glucose toxicity. Period. That’s just the philosophy. Something else will get me, but it’s not going to be diabetic complications if I have anything to say about it.
I hope this makes sense.
I’m with others – I think I’ve reached my limit on this thread.
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Wait a minute! Are you saying we should manage our blood sugar as best we can to avoid complications?
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Do you have studies that show serious complications at these A1Cs ?
My first 25 years of T1D didn’t even measure A1C, which became popular after DCCT study. My first A1Cs were 13+, with endo goal of 9, using older insulins and exchange diets. Started pump soon after and then averaged A1Cs 7-8 for many years. More improvement after starting CGMS.
Yet I completed school, college, and 40+ years of employment. Complications? Yes, but still quite capable and successful.
Many consider A1C 6-8 to be good balance of avoiding/reducing complications, without risking frequent lows. Not everyone has access to cgms, pump, or wants to use it. But for those that choose to stay in/near non-diabetic range, the tools are improving more than ever.
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@JonDeutsch, all the way through this thread I have left you, in my mind, a lot of leeway, because we all react differently to the shock of the diagnosis. I figure you are reacting in your own way.
In this case, I agree with @cardamom that you have no idea what it takes. My son’s A1c has always been between 5.5 and 6.5, mostly btw 5.5 and 6.0. But you certainly have no idea how much work this has meant for us, how much harder it has been as he has gone further into puberty, and how much he has paid in lows.
Despite your own indirect exposure to diabetes, you have absolutely no idea, because every person’s diabetes is different, and what is easy with one person is much harder with another, and it changes with every day, week ,month, period of the moon, cycle, weather, food, pollen in the air, speed and duration of the last walk you took, the work you do, the time of the day, how much sleep you had last night and the night before and last week, and god knows what else.
I know how much it costs us to get there, and I am perfectly aware that few people can afford to do what we do as a family unit to make these goals—you don’t know anything about what it takes for us, or for anyone else than for your own situation. That your partner suffers from depression, excuse me, while difficult in its own way, is simply not the same as a sickness where one single slight overdose of a drug you take every day (in quantities that would kill a glucose normal) can leave you dead overnight while you sleep. That is exactly what may happen is you aim for too low an A1C, and end up correcting a little too much before going to sleep.
So, yes, it is presumptuous of someone who does not need exogenous insulin to criticize other people’s techniques and goals, when you have never have to deal with it as your own enemy. Once you have been fully dependent on exogenous insulin for a few years, past honeymoon, you’ll have earned your stripes, and your absolutism, if you still hold it, which I doubt, can be better tolerated.
@Eric, here, like several other members, has a better A1c, quarter after quarter, than a glucose normal: I have never seen him talk down at another T1D because their goals are not aggressive enough. You must realize that, if the T1Ds with the most aggressive treatment on the web (FUD) get offended by your approach, there is at least a problem of tone in your approach 
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