Besides being a member here, I also follow a few diabetic groups on Facebook, some based in other countries even. Today I had a very unpleasant experience with one of those groups, and felt the need to share it here, maybe get some advice.
It was an FB group of people that mainly follow a low carb diet, based on Dr. Bernstein’s book. So far so good, as I too follow said diet with great results so I have that in common with other group members. It all started with a post by a young, newly diagnosed T1D member asking a question about insulin management. Many responded giving advice including me, however one person in particular asked for her C-Peptide results, saying she could completely wean herself off of insulin using a strict 0 carb diet. Now, to make this clear, this conversation was not in English and the word he used for “weaning” has a strong drug/alcohol, somewhat negative, connotation. The same person saying this went on another thread in which a mother to a newly diagnosed teenage daughter asked if going low carb could help her daughter avoid having to take any bolus insulin once her honey moon was over. He left a very similar comment, saying her daughter can wean herself off completely as well. He then used an example of some boy who managed to do so. I think he left a couple more similar comments like that in different posts by people relatively new to the game with either T1 or T2.
Now, I have no desire to know if you agree or disagree with this person. We both got into a pretty heated argument over there which frankly just drained me. All I wanted him to do was to stop using that word “wean off” in regards to T1D and insulin. This year will mark my 30th as a T1D and I’ve been dealing with people’s misconceptions my whole life. People thinking I did this to myself, that I don’t eat right, confusing T1 and T2, not understanding that carbs are sugar, suggesting all kinds of snake oil to cure me, and the list goes on. That person, himself a diabetic (I think T2) just got me to be very emotional over it, and I hate feeling like this. I hate that another diabetic is using language that pins the blame on diabetics. I hate that he’s “spreading the word” that all diabetes is curable if you just catch in on time. The worst part was that while most people sided with me, there were a few that sided with him. Nobody really understood my point that using language like that is dangerous.
Now I’m feeling tired, angry and sad on the verge of tears. It’s especially hurtful because I’ve been feeling so good lately with my diabetes and its emotional aspects. I’ve connected with other diabetics in my local community and online, and been feeling very empowered and positive. This whole thing made such a dent in things. Am I overreacting? Why am I so emotional over this?
I feel the same way when someone tells me I can reverse or cure my type 2 diabetes. Words do matter. Even Dr. B would never suggest you can stop taking insulin just because you stop eating carbs.
Dealing with the near-universal misconception that diabetes is self-inflicted is a battle we fight every day. We call it the “blame game”. At one time or another, It has been the source of heated debate and—and yes, flame wars—in every corner of the DOC. Fights have erupted over it right here in TuDiabetes, more than once. It’s a pernicious lie that just never dies.
Likewise for the various “cure yourself” fads, too numerous to count, that seem never to go away.
There’s no good answer that I’ve ever found, other than to nod and smile and change the subject. Sometimes it can be turned into a teachable moment, but that doesn’t always work . . . as you just experienced. Whether and how to stand up and try to correct it is always a judgement call, and you’ll never bat 1.000. Just know that when you find yourself crawling away, licking your wounds, that we’ve all been there and done that, and that you can always come here and vent, if necessary, to friends who get it.
Thank you, @Brian_BSC and @David_dns, for your kind words. It’s good to know that people here understand this.
That entire argument with him brought back tough memories of my own diagnosis when I was 4, remembering how confused I was, not understanding that it was forever.
I was especially angered that he was speaking to parents of newly diagnosed kids, suggesting to them that they can cure their children, giving them false hope. I was thinking back on my own parents at the time of diagnosis and how they’d do anything to cure me if they could. How scared and desperate they were.
@Brian_BSC, funny enough, in one of his comments to me, he said I was trying to shut him up, just like the medical community was trying to shut Dr. B up when he was advocating for self management and diet.
Anyway, I’m also really bothered by this whole idea that we’re “addicted to insulin”. I can’t exactly say why, just find that language to be toxic.
I well understand this struggle, Maya. I have found 2 Bernstein-oriented groups on FB that I trust—and left several others because they were rabid and fanatical and intolerant—lacking in kindness, which is what matters most to me.
I have become somewhat jaded about slapping down The Desperate who will cure my T2 with magic potions. But when they do that to a T1, I am offended to the depths of my soul----Exactly because it is so dangerous!
It is very hard to sustain this fight when you care so much. But you do need to take breaks. To remind yourself that you are not alone in the battle. And to nurture yourself!..Blessings…Judith in Portland
MayaK, should this asshat ever cross paths with you again, perhaps you could ask him why he hasn’t managed to cure his own diabetes yet and why he remains addicted to insulin.
What I find works for me is to meet people where they are. If you are convinced that what you know about managing diabetes is based upon evidence, then take comfort in knowing that the decisions you make about your health are based upon fact and not emotion.
I personally don’t engage anyone who bases their argument solely on emotion.
One thing that bothers me in the realm of diabetes is people who refers to themselves as “diabetics.” I personally feel that people who have been diagnosed with diabetes are not diabetics. They are the wonderful people with mothers, fathers, sisters brothers friends, feelings, desires and needs just like people who have not been diagnosed with diabetes. However, it is simply not my place to convince a person who likes to refer to him or herself as a diabetic that he is she is not a diabetic. If that is how one identifies him/herself then that is where I will meet the individual.
Not my battle. Be who you want to be, think what you want to think as autonomous human beings we have that right.
I can totally sympathize with your being upset. I was watching a PBS Frontline doc last night about new non-punitive approaches for dealing with drug abuse in American cities, and that old thing came up about “Jeez, diabetics get insulin as a medication, what’s the big deal about treating heroin addicts with maintenance doses of their drug of choice!” I first encountered that one myself in a support group for parents of addicts, and I just about hit the roof. Insulin is not an effing recreational drug f’r cripesake, it’s an artificial replacement for a hormone your body doesn’t produce. And you sure as hell don’t take it for FUN. I’m “addicted” to it in the same way other people are addicted to, y’know, AIR. The only connection–the only reason they pick on insulin for this–is the totally arbitrary and utterly insignificant similarity that you inject the stuff. I actually thought the documentary really interesting and then they have to throw this nonsense into the mix. GGGRrrrrrrrr.
I should point out I’ve nothing against non-punitive approaches to the drug problem, I just want to be clear that insulin dependence is not part of that problem. We have enough stigma and confusion around our condition as it is.
Encountering this marks the end of civil discourse. At this point, I’m usually trembling from the tension of trying to be polite, trying to be reasonable, and trying to explain that I WILL DIE WITHOUT INSULIN, er, I mean trying to explain that the concept is not grounded in scientific principles, nor are there any reputable studies showing that it is feasible.
Oh, I know how you feel! I’m not sure I have a good answer for how not to feel this way. Maybe it’s the price one pays for caring about the welfare of others. I find it really hard to have a parent read ‘advice’ that will injure her child, and I will always add something to the effect that there is no study that supports the ‘gentleman’s old wives tale of zero insulin’. Then I copy & paste it every time ‘the gentleman’ tries again. I try to let go of the emotion and stick with the facts. But I admit I still feel that tension.
Thanks, everyone for all your kind words and advice.
I do feel a little better today though I’ve decided that I might have to leave that group as the group’s admin, while he might have just tried to defuse the situation, basically said that he believes in all possibilities and actually stated that he’s on that other person’s side (using those words exactly in response to more of that guy’s nonsense).
I wrote another message on there in which I stated that I’m an open-minded person, and I’m all for experimenting with one’s nutrition when it comes to diabetes as I believe so much of diabetes management is a result of lots of trial and error. I can’t however support the claim that T1Ds can quit taking insulin, just like we cannot all just quit breathing air. That was it.
This is really sort of an aside, but my experience was somewhat parallel. My initial involvement in the DOC was on Facebook. Eventually I discovered TuDiabetes and it wasn’t very long before the loud static and the unregulated combativeness on FB led me to abandon them and spend my time here, in a community where civility rules and nonsense is tolerated up to (but not beyond) the point of reasonableness.
@Judith_in_Portland It’s pretty disheartening to hear that my situation is not an uncommon one.
I’m sorry you too had to deal with it. I do wonder if some people who follow Dr. Bernstein treat it a bit like a cult.
That person’s conviction made me feel like I was being preached at. When I pointed out to him that I do agree with him on many other points besides that one, he said I just wasn’t “advanced” yet to understand whet he was saying. Like I wasn’t there yet. It reminded me of some strange, twisted religion I just wasn’t a part of.
@rgcainmd and @erice I didn’t ask him, but it seemed like he’s one of the few lucky type 2s who can actually manage to fully control their diabetes with diet alone and without the use of any insulin.
. . . not to mention being egregiously patronizing and condescending.
It’s true that some Bernstein followers (full disclosure: I am one) become such true believers that they treat his approach like a religion and will brook no disagreement on any point however minor. That very fanaticism stimulates the opposite camp, people who are so incensed with the rigid intolerance that they become equally fierce in knee-jerk opposition. Emotion rules the day and rational discussion thus goes out the window. That serves no one’s interest.
David’s Rule #1 for dealing with experts: take what you can use and leave the rest.
A little tolerance for other viewpoints goes a long way. We need more of it.
@jojeegirl Thank you. I agree that approaching a disagreement from an emotional standpoint isn’t the right way to convince anyone.
I’m sorry if I had offended you by using the term “diabetics”. I agree that all people are more than just that, of course. In this particular context I used the word to describe a community of people who all have that disease in common. I never meant to reduce anyone to just their ailment. Personally, I’m proud of who I am, and who I am is also a diabetic among many other things. I do not take offense to that, because I do not view diabetes as being shameful in anyway. Just like being mothers, fathers, sisters and brothers.
@DrBB I totally get that!
I’m really not trying to put addiction and addicts down as I do believe it’s a serious problem but that comparison is outright wrong. Non of us made the initial choice to get diabetes. Addicts, while they didn’t choose to be addicted, did have an initial choice in using drugs. It’s really aggravating and I think for me, when someone puts drugs/alcohol together with insulin, it’s pushing some buttons there.
I don’t know about you, but I definitely caused my diabetes. I ate candy continuously throughout my life, exercise was something to watch other people do. I also never slept properly and drank lots of Diet Coke. In addition, I’ve never even tasted okra water and only eat cinnamon when it’s inside a CAKE. In addition, I also did other things to self-inflict diabetes: As a kid, I rode my bike without a helmet to play in a park unsupervised. I even played sports that were not part of an organized league! I drank regular tap water. We rode in cars without seat belts and sometimes even without seats! I didn’t know what “sunscreen” was and wore whatever was on my feet for sport – no sport-specific foot gear (well, except ice skates…)!
@Buck I think that was the problem for me, the possibly of someone actually hurting themselves or their child.
I just couldn’t stay silent, but that’s when emotions run high which is bad for any good discussion.
@David_dns Haha, I am too a Bernstein follower, which was why I joined that group in the first place, but I guess it is a bit like a religion in which you have the moderates and the extremes. I totally agree with you on the whole “take what you can use and leave the rest.” part!
LOL. Actually everybody is “addicted” to insulin, considering that it’s impossible to live without it. We just can’t make our own.
