I see an whole lot more victim mentality in the general population than I do in the diabetes community in general. Sure there are people who are overwhelmed and feel victimized because they have diabetes. There are a people who feel the same for every other reason on the planet, including a lot of imaginary ones that aren’t even real.
All in all though, in my observation, once people get their mind wrapped around having diabetes and making the necessary adjustments in their life they tend to move forward with a very minimal degree of victim mentality, or none at all.
Thanks for pointing out that I made a typo. I missed adding the “a” – I meant to write “I’m a diabetic” (as I had written prior in the same post). I’ve since updated the post and added the a, and noted it was a post-post edit so that your response here makes sense in context.
Again, apologies for the typo. I think adding the “a” makes it different. Do you agree or disagree?
Never stated that they evaporated. I was explicitly referring to how people define themselves.
I can’t agree with you here, because while you’re right on this point from a medical/diagnostic perspective, that is not at all the lens I’m applying in this chapter, which is about culture and identity. There are other chapters completely dedicated to diagnosis and management, where I introduce other, novel approaches to diagnosis.
To be clear, the diabetes community chapter being discussed in this thread is based on my POV on (the most disturbing aspects of) the community as I see it. Other chapters tackle other aspects of diabetes, and depending on the chapter’s focus, it will rely on science, evidence, or my POV, depending on what is being discussed and dissected. Hopefully it’s clear that there is no science behind my assessment of the community. Yet, there’s plenty of science behind my assessment of use of types to diagnose people vs. my proposal.
This is a good suggestion, and I will do so, but it won’t change my mind on how identity seems to creep into diabetes whereas it does not do so nearly as much with nearly any other condition that I’m aware of.
I appreciate this constructive feedback. Thank you.
When someone says “but as diabetics, we have to acknowledge that we don’t heal as well as others” - I perceive this as victimization. Perhaps there’s a better term for it. But this is pernicious and inaccurate. And it bothers me deeply enough to feel compelled to create an entire chapter around this dynamic.
Perhaps you don’t have people like this in your circles, or you don’t see them in the forums. But I do. Far too often. This, to me, is a victimized belief system that spreads victimization disguised as self-help.
I’ll admit, I don’t understand all the references to victimization. I just do not experience that, in the diabetes community or most other health-related communities. Statements of fact do not make someone a victim. People with diabetes DO need to be more aware that healing may (or may not) be problematic for them. Diabetes IS a disease. How are these statements victimization?
I read more of your manifesto, and I must say, I simply can’t relate to it. I feel like it’s directed at people with pre-diabetes or early Type 2 diabetes. I feel like @cardamom is correct that some of your understandings may be inaccurate, such as statements that you are in the “Type 2” phase of “LADA” (the two are entirely different conditions, though I don’t have either, so will not comment further), or your glucose control knobs that don’t even include insulin (insulin is THE most important factor for those of us who use it!). Also, I find your comparison of avoiding carbohydrates to managing a food allergy offensive as someone who lives with true food allergies. Managing food allergies involves a lot more than just avoiding that food, and I can tell you from experience that eating a low-carb diet is nothing like and nowhere near as complex or difficult as avoiding food allergens. And comparing a brief spike in blood sugar to an allergic reaction is not scientifically accurate by any stretch of the imagination. These comparisons are not only highly inaccurate, but they actively harm understanding and awareness of food allergies.
I feel like your manifesto would fit well into the types of philosophies and beliefs (and, frankly, dogmas) adhered to by low-carb diabetes groups, such as those who follow Dr. Bernstein. People within those communities often have a “this is the one right way to manage diabetes” approach, and that type of mindset is something that members of this and other more open forums strongly push back on. We are all here to share our experiences, knowledge, and strategies, and hopefully help one another better our lives with diaebtes (and maybe our diabetes control, if there’s an interest). But we do so through a myraid of different strategies and techniques. Our diabetes management approaches and goals are as diverse and unique as we are, and our community is stronger for it.
But it’s a factual statement. Even well controlled long term diabetics are more prone to vascular insufficiency which can lead to impaired healing of wounds. The recognition and acceptance that 30 years from now despite excellent control I’ll likely have to pay more attention to taking care of my feet than I would otherwise if I didn’t have diabetes doesn’t make me a victim. It makes me a reasonably intelligent person with some self awareness.
I would say it’s all about perspective. And maybe your perspective is seeing it from that angle?
The glass half full, half empty type thing.
I hugely identify myself as a type 1 diabetic. I feel it is definitely part of me. I am not shy about talking about it or mentioning it. Sometimes because I want other people to know, the dentist, the eye doctor because of any special precautions. Sometimes it’s because I want a clue to the carbs in certain foods, although being a vegan I am asking about ingredients anyways. But sometimes too, to let “normals” know type 1’s are out there and we can do things and I am older and I can still do things! Or this is me and look what tools we have nowadays. Or this is me and I’m not a type 2, it doesn’t matter what I eat, it matters that I need insulin for almost everything etc etc.
Yes, I proudly say I’m a type 1. I am part of a select group that I have to make compensations for sometimes and that’s life. I don’t feel like a victim. Life is not always fair but it could be so much worse and I appreciate having a disease we have a pretty good solution for. It sometimes sucks, it makes me have to do things other people don’t. I have to make special compensation for it. It can be madly exasperating. I can stomp my feet at it sometimes. But it hasn’t stopped me and it’s not going to stop me and that’s the point.
I look at life as the glass half full, not half empty, when someone says “but as diabetics we have to acknowledge we don’t heal as well as others” I don’t look at that as victimization at all. I look at it as a matter of fact statement and potentially something I have to watch out for.
When a story is told, people can have a different perspective of what it meant. One might say the main actor was sad, another might say, no they were hardened and another might say they were relieved.
I don’t see what you see on the forums, I see some of it as a place to vent when you get exasperated, a place to ask questions when you want help, a place to talk to other type 1’s because other type 1’s are truly the only other people that understand alerts going off in the middle of the night or I walked down the street and today my blood sugar dropped yesterday it shot up. (sure there are all sorts of people with different personalities there) A place to share with others because a lot of us type 1’s don’t know other type 1’s. This forum is where I first learned I could aim for a lower number, I was not looking at I am a victim, I was looking for information that is helpful.
I look at it as a glass half full, not half empty and I think it’s the way you are viewing it that might be the problem of thinking it’s victimization.
Jen - this is an accurate and helpful statement. 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.
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).
You may see a distinction without a difference here, but I see a huge difference. For me, the term diabetes is getting in the way of being helpful and accurate in a host of different settings. I go into this conundrum in much more depth in the “Should We Call it Diabetes?” chapter.
I will admit that this, looking back, isn’t a great example on its own. I think I mean to provide more context around “diabetes is a disease” with some additional context, specifically around type 2. I will have to look at this and update it. Thanks for calling it out.
There is no doubt that a lot of the manifesto was initially geared towards newly-diagnosed and type 2. It expanded from there when I get into new diagnostic paradigms, but, yes you kind of figured out the initial conceit. It’s geared toward the 90%, but I did try hard to be inclusive of all types as I wrote it. As someone who has LADA, I feel like I’m a bit of both Type 2 and Type 1, so I tried to also write it for someone like me.
The control panel, like everything else in this manifesto, is not designed to be a primer on diabetes. It’s not an FAQ. It’s part of a manifesto, which is explicitly designed to advance “novel and provocative” ideas into a sterile and staid culture that I have found is resistant to adopting new philosophical thinking. We keep “piling on” new ideas but haven’t rebooted any thinking. If we did, we wouldn’t have 8+ different “types” of diabetes. We’d step back and re-assess the naming system.
Adding insulin to the control panel is the equivalent of me saying “water is wet.” Of course insulin is required for type 1 diabetics! You don’t need a manifesto to know that. I think (hope?) that I cover that point in that chapter. Each control panel knob only exists because I believe I have something new and interesting to add to the conversation of the knobs. 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. Hmmm…
I don’t have any food allergies but I know people who do. I based this thinking off of my and their experiences. I would love to learn more about this from your POV. Please PM me if you have the time or inclination.
Perhaps. But I am not a huge fan of dogma, believe it or not, and I don’t interact much with the Bernstein-stans. And I’m sure they would not be very happy to see sugar surfing as a certified Type A Diabetic approach for Type 1s.
As am I. And I shared my POV in a provocative fashion via a fairly large document that is not comprehensive, but it does cover my observations and offers my diagnostic on a status quo that I find severely lacking in the places that I’ve experienced on my journey. I did it purely to help improve the status quo. To introduce new ideas and thoughts that I had not seen anywhere in my travels to-date. As I’ve mentioned in prior posts, many diabetics (including type 1s and type 2s) who reviewed and edited this privately for me prior to publishing found it enormously helpful and empowering. As such, I was expecting far more positive feedback than I’ve garnered here (and on Reddit). It’s been very interesting to experience how different communities react so differently.
But I will accept this feedback. I know it’s coming from a thoughtful place from most. I was frankly hoping for a more targeted and constructive debate in this thread on the culture of diabetes, but I guess you can’t always get what you ask for in life.
Thank you for your detailed thoughts and comments, Jen, I appreciate it.
Every single time I have researched a “diabetic complication” in detail, I have been able to confirm the underlying cause of said complication is glucose toxicity.
Unfortunately, the concept of “well-controlled” varies significantly across the population. In my manifesto, I go hard on the medical community’s insistence of managing to 6.5-7.5 A1c as safe harbor…esp for Type 1s. This is almost guaranteeing complications down the line.
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.
I don’t want to quote your entire post but my reply is in response to your entire post:
I think this is great. I think this is super-healthy. There’s no doubt that as part of my thinking, I’ve connected the idea of identity with characteristics that typify identity politics. You are an example where identity does not necessarily have additional baggage along with it. When I think about identity, I think about it being connected either to feeling of entitlement or grievance. Sometimes both. Rarely neither!
Perhaps there are far more “neithers” out there that I don’t account for in my analysis. Perhaps that’s because the “neithers” are, by definition, not as strident and therefore not as easy to come across in online discussions.
You’re making me think of adding a bit to this chapter to exempt the ‘neithers’ from my analysis.
Most people here know me as a shy and quiet person who has a problem expressing how he feels. (waiting for the laughs here)…however, there isn’t much I can add. I have read most of the posts and agree with the sentiments of many of my forum members for the most part. When my son grows up I don’t want him to feel like he’s a “victim” even though he is…he’s a victim of a disease that he didn’t ask for and has to learn how to not only manage it successfully, but also how to live an UNLIMITED life…which is what FUD is all about and the very reason we LEFT the “other” communities out there and CREATED FUD. Too much woe is me, life really sucks, what will I ever do, bla bla bla. We get it…you got a disease. Millions of people get them. We are all left with choices about how we live with things and how we “identify” ourselves with living what that aspect of ourselves. We also have choice about how we let things affect us - labels or otherwise… It’s an individual choice that we all make. But if I decide to say “I have diabetes” or “I am diabetic”…it’s all semantics to me. I, for one, am going to teach my son to not cling to words…they’re shallow and mean very little. Take the lemons life made you and make the best f’ing lemon marange pie that anyone’s ever tasted and make them want it so badly that they’ll pay you to make them and their families and friends one too. It’s not about the cards you’ve been dealt - it’s how YOU decide to play them. He will learn to NEVER play the victim card and never allow someone to make him feel like he SHOULD play the victim card. He’s diabetic. He has diabetes. Both are true, neither is a victimization UNLESS WE ALLOW IT TO BECOME SO…it’s all about our own choices about how we decide to feel, or not feel about this or anything else that happens to him that could mess him up.
I go to this often because it’s TMI and it’s a part of my life, but I chose not to define myself by it…I was sexually abused as a child for years, as were my brothers, by a close family friend. I could have decided (like some other of my siblings) to get into the woe is me game and let it screw up my entire life, or I could have just set it aside on a shelf and understand that, OK, this happened…but I still want to be happy and live a fufilled life…so what should I do? Should I lament over it daily and live in deep depression as my siblings do? Should I allow those things to make me become bipolar or bring about other mental issues in me that they have? Sure. I could do that…but in my mind, it would be the easy way out. It’s much harder to rise above it and decide (choices) that it’s just not going to bother me, and put that part of my life behind me where it belongs. It was a choice…it’s different than someone being Type 1 diabetic, but not really because they’re both choices. People with diabetes can do the smart thing…which is just learn how to take care of themselves and live unlimited lives and figure out what works FOR THEM in order to meet those goals OR they could do the not so smart thing and decide that they’re a victim of a cruel world and lament about it daily and hate being identified as this or that, or whatever. Who cares!?! If we all just focus on being and doing the best we can be and do and disregard the negativity and negative conotations, we’d all be much happier I believe.
I honestly don’t care how Liam “identifies” himself when he gets older and I don’t care how others identify him. The only thing I care about is how happy, fulfilled and satisfied is my son with his life and how well is he taking care of his diabetes so that he can be around a long time to love his family and be loved by them. All the other stuff is just fluff that I don’t have time for in my life and I’ll teach him to be the same way. Let things roll off of you and keep being the badass that you are.
It is absolutely well documented that people with diabetes are at elevated risks for a plethora of complications even if they are able to maintain perfect control with normal blood sugars and A1c. I just shared one with you. CVD is also more prevalent in diabetics even after adjusting for glucose levels.
Elevated risk of heart disease in Type 1 diabetics is a good example. While they think that elevated blood sugar does play a role, even with very good control there is still an elevated risk that cannot be easily explained by blood sugar alone.
I’m not even going to engage in a debate. 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.
That’s fine if writing is your way of coping, it can be a healthy one. 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.
Save these conversations somewhere that you can look back on them 15 years from now.
People without Diabetes can and do get Retinopathy (retinal vein occlusion) and I haven’t read any study that conclusively links 100% of these cases to glucose toxicity…might glucose play a role? Sure! But so may a plethora of other conditions…obesity, hypertension, gender, smoking status, among others. Your statements just don’t hold water and seem like you may be picking and choosing which science you believe. There is a science I know and then there is a science which a good portion of America seems to believe in these days where a blue sky may be yellow if the person looking at it wants to just say it’s yellow (assuming they’re not color blind of course.) Not saying you’re this kind of person, but to make such a blanket statement about every single complication that diabetics may have and attribute it to glucuse toxicity w/o citing your sources is something that would get an F on a school paper.
I’m back to the scientific question: If not glucose, then what? Everything I’ve researched (and, @Sam, I’ve researched hundreds of documents as part of my pre-work) points back to glucose being the underlying factor for complications.
For Type 1’s, it could, in theory, also be a lack of glucagon, I suppose. But… there’s nothing that points us to this as being a underlying factor of complications as far as I’ve researched.
I struggle to see how and why we can’t accept the likelihood that glucose toxicity is the common denominator in (virtually, if not all) complications in diabetics.
So-called “good control” may just not be “good enough” - especially given how complications can come to be based on A1c’s in the 5s:
We don’t know what we don’t know…that’s why Science is constantly evolving and why scientists continue research on diabetes and pretty much every other disease in the history of mankind. There are always going to be unanswered questions that we don’t know yet.
Because the system you are trying to simplify is a complicated one which we don’t fully understand. Why do some people who have uncontrolled blood sugar for years have no problems, and some 20 year olds with just a few years of high blood sugar end up in renal failure? Why do some smokers get lung diseases and my grandmother smoked a pack a day for 50 years and didn’t have any lung disease? Should we strive for good glucose control (yes) should we not smoke (yes), but you can’t blame everything in a complicated and malfunctioning regulation/counter regulation system on one factor just because it is easy to measure.
But I am always really glad to see long posts from you!