The "right" way to talk about diabetes?

I had a Twitter exchange recently with another T1D. When someone asks her why her blood sugar is the way it is, she might say it’s because the moon was full – or because it wasn’t.

I heard this a lot when Samson was first diagnosed. I would ask why something spiked him, and would get “because it was a Wednesday.” Or statements that diabetes is inherently unknowable and indecipherable. Or outright exhortations to stop aiming for such tight control as it simply wasn’t possible.

At the time I found those comments EXTREMELY discouraging. Here I was, heartbroken that my beautiful little boy would be faced with potentially a lifetime of complications, and doctors are saying THIS ONE NUMBER is literally the only thing I can control to lower complication risks – and people are telling me it’s so inherently variable that expecting the level of control I was seeking was simply unrealistic.

On the other hand, she said she finds the assumption that she can keep always in-range blood sugars very discouraging. Which I completely get at this point. I mean, we don’t manage that feat and I think that while it’s *possible, the amount of effort to do it would be unrealistic given other factors in our life. And even amazing things like @daisymae 's swimming thread shows how close to amazing you can get – but that there is so much trial and error and that perfect certainly isn’t possible.

I guess I am sort of waffling around the basic question of what’s the right way to speak about diabetes when someone is first diagnosed – and later, when they’re frustrated with the control they get?

How much optimism and sense of control is good for a person to hear about, and how much just makes them feel unnecessarily guilty?

Do you find the “because of the moon!” type of talk annoying or discouraging, or actually reassuring and motivating?

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Annoying on a frequent basis… comical on an every once and awhile basis.

Things happen that are out of our control, and I think it’s worth acknowledging that. However, I find it more helpful to try to determine the cause of things going out of whack- especially if there’s a trend or things are going out of whack often.

I suppose for a newly diagnosed person, it’d be best, IMO, to acknowledge both but give a heavier weight to the problem-solving approach.

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I hear this same speech and it’s discouraging to KNOW it’s not true but know that any words I may offer in encouragement will fall on deaf ears…they just don’t want to hear it.

At some point the I just decided I have to worry about me and mine and try to point as many willing ears to FUD.

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I try to avoid the idea of “controlling” diabetes. I don’t control it, because I don’t control most other physiological processes inside my body. But what I can do is manage it, and I can manage it by attempting to manage, as much as possible, outside factors such as food, exercise, insulin, and knowing how things like illness, stress, or changes in the weather may affect me. And of course paying close attention to my CGM.

So no, I don’t think it’s useful to say the moon caused a certain blood sugar. But, if you keep enough records, you may discover that the weather or time of month or certain weekday when you have a particular routine does affect blood sugar. Once you know that, you can attempt to compensate. But no matter how much you try to compensate, you still have a disease that can’t truly be controlled in the strict sense of the word.

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first off, optimism is IMHO, always a wonderful thing to hear about. it provides a sense of hope and detracts from despair. however, i do understand the part about feeling unnecessarily guilty; when i go through periods during which my control seems lost, i blame myself “what am i doing wrong??” “why isnt my body working like other people’s do?” “what is wrong with me?”

not only, at least for me, is there a sense of guilt, but there is a lot of shame that comes into the picture. i dont want to be such a bother to my family or close friends. i will go through periods where my husband and i are supposed to go for a long walk over the Manhattan Bridge into Chinatown for brunch, and my BG is 50. obviously i cant walk around with him when i dont know which end is up. so i have some fast carbs and we must wait till it is safe to go. i feel like a burden sometimes. i apologize. and then i apologize some more. he will say “dont worry Honey. you dont need to apologize to me. sit down and wait for your sugars to come up. they always do.” but i feel “diseased.” i dont want to have diabetes.

when i first came onto this site (FUD), i read about people feeling frustrated like i did, i read about success stories, i wrote about problems, and members offered solutions. everything i ever wanted i was able to find on this site. there is compassion beyond words.

so when you ask “what is the RIGHT way to talk about diabetes?” i think, read this forum. everything is here. this is a place, at least for me, where i find answers, empathy, cheerleaders, comrodery, challenges…so much more. I think that we FUD members share a discourse in which, for the great part, talk about our experiences with diabetes the “right” way.

for myself, i find that comparing myself in any way to another, is detrimental to my perception of Self. but, by identifying with others i allow myself to be and to feel “a part of”. i am no longer alone. i am no longer different. i am no longer a disease. everyone has challenges. D or not D. but the D is just something i live with. it doesnt have to define me. it challenges me everyday to be the best “me” i can be. and i dont mean that the challenge is to be in perfect BG control. not at all. i mean, i do the best i can and let the rest go.

i really hope that i am not sounding arrogant or proselatizing. that is not my intention. i just wanted to interject and say that we all go through our own Sh*t, not just us diabetics. everyone.maybe that is my real message here: sometimes life feels overwhelming. sometimes life is overwhelming. but there is no shame in leaning on others to pull us up and say “hey, its okay. you’re doing great, and you’ll be fine.” ( and btw, what the heck is “fine” anyway? )

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From the perspective of someone newly diagnosed, the “because of the moon” stuff was really discouraging at first. I was totally terrified in the beginning. It was hard to imagine anything in life was going to be happy and fun in a relaxed and carefree way ever again. I’m realizing now that happiness is totally still there, and that despite the challenges, that particular fear was pretty unfounded. I’m working on that, anyway. However, I was googling compulsively at first looking for any sign of “this is going to be ok” and I kept reading the words “having diabetes sucks” on social media, and was so discouraged by that.

I don’t think anyone goes into this thinking it’s going to be a walk in the park, so I still would have understood that parts of this will not be so fun without reading those words over and over. I still see a lot of “diabetes sucks, but look, I climbed this mountain/did this triathlon/etc.” I would love to see those stories without the “it sucks, but…” qualifier.

Sorry for the tangent, but for me, it boils down to balancing the occasional “geez today was crazy and heaven only knows why” (because we all need to vent sometimes!) with actionable advice and encouragement. That’s why I’m soaking up so much of what you guys post here. It’s clear you’re all doing all you can to live your best life, and it’s encouraging to see that. I like seeing how successful you guys can be at this, while also seeing that there are difficulties along the way, because this forum does it in a positive way that leaves you feeling like it’s ok to struggle because there truly are ways to work this stuff out.

Diabetes social media can be a real tricky one for me… I like seeing other people with diabetes out doing life, and can find encouragement in that, but the “omg I ate fries tonight and now my bg is 350” posts makes it seem so out of control and just add stress for me. There has been a lot of unfollowing going on when it’s like ok, this isn’t good for me right now.

Sorry for the rant…

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When I was first diagnosed, I followed directions. Then I found out that I knew more about my care than anyone else and I just did whatever I had to to get great control. Since I was going against “convention”, I almost didn’t want to know how others were doing it and what they thought b/c I didn’t want anyone to get in my head and de-rail me or make me question what I was doing that was working.

Then I got de-railed bc that’s just how it went. Life changes and medication short-comings got me there. I’ve been paddling and paddling for a while now. The tricky, tricky, tricky part of this disease is that there is no hard and fast answer on anything (seemingly). That insulin might work great for you! Or it might not. Having a slightly elevated A1C might keep you clear of complications! Or it might not. Pumping could be great for you! Or it might not. Hormones could make control difficult! Or it might not.

That’s where I find the challenge in discussing it as a group. Things that I KNOW to be true about my body and my brand of diabetes might not be true at all for someone else. People may or may not be receptive to acknowledging that some aspects that I experience challenges with as true factors if they’ve never experienced them.

Back to the question: I think everyone deals with the constant uncertainty in different ways. I think everyone has different boundaries for their own perseverance and where they decide “good enough”.

Another thing that I’ve thought about…and I don’t want anyone to think I’m saying that FUD backfires in any way bc I absolutely am not…but when you see awesome Dexcom graphs or A1C’s and you have been struggling for a long time, and not for lack of effort, that can be…intimidating. There was a study done at the Air Force Academy, if I remember correctly, about trying to strategically group cadets for study groups in an attempt to generate motivation and competition to raise grade point averages. The study resulted in very different findings than they expected. The study groups in which A students and C students were grouped together were the most detrimental. The C students saw the chasm between their performance and the performance of the A students as too large to overcome, they self-identified as poor students, and then performed even worse. The best outcome was in groups in which C students were grouped together with other C students, and almost as good was when B and C students were grouped together. When C students were grouped together, they felt they were equals and the friendly/attainable competition pushed them all to far better grade improvement.

I’m not suggesting there are A diabetics and C diabetics. But when you are in the ditch and you’re trying and trying, it can feel like some forms of motivation are not as motivating as others.

I really hope no one takes that the wrong way. It is not at all an evaluation of FUD. It is meant as a study on “motivation” and the sometimes counter-intuitive results.

I have obviously found great community, support and information on FUD. Otherwise I wouldn’t be posting 5 million times a day. But this is something I’ve thought about. Diabetes is hard. I will likely never get better than a “neutral” feeling towards the disease. But I do take great pride in how hard I fight for myself and my family and my best life. I mean, I’ve never met a T1D or family member of a T1D who wasn’t interested in a cure. I think we’d all love a cure. Which I think means that most of us get tired of T1D at least some of the time.

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I find this irritating because there is always a reason. We may not know all of the reasons, but it is never a random thing.

Pump effectiveness, insulin effectiveness, site absorption, infusion day, BG meter error, CGM error, activity, recent carbs, recent basal changes, food changes, fat intake, sickness, temperature, altitude, sleep amount, sleep quality, stress, hormones, emotions, dawn phenomenon, the list goes on and on. This is just what popped into my head without even thinking hard about it.

I work hard on always trying to figure out exactly what is happening and why.

It takes a long time to learn to be able to connect the dots. The reason I can connect the dots is because I never blamed it on the rain, I put forth the effort to figure it out. And made mental notes of things when I didn’t understand them, and could go back and think about them if it happened again.

It takes work, but saying it is the moon or whatever makes someone much less likely to put forth the effort. If they think it can’t be figured out, they will not try.

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i love that you made this point about our success. i believe that it is important to measure our own success with our own successes, not measuring them against others’ successes. when i measure myself against others, i often come up short and discouraged, or experience false arrogance, which is of no help to anyone, particularly me.

that being said, to know that there is this wonderful place (here) where people challenge themselves and achieve more than they ever thought they could, is what is relevant to me.

eric has helped me a lot in regards to my swimming. he has been D for 40+ years. his experiences are numerous. he is an athlete. i doubt very much that i will ever be the athlete that he is. his accomplishments are his own. i have different goals. and i think that that is the point i really would like to try and to make: we each have our own goals. striving towards them is the process of life. setting and striving towards accomplishing my own goals is mine to do with what i choose.

a few sage notions have helped me a great deal. these are : 1) to be reasonable and realistic and 2) to be willing to be flexible. and, recognizing our own successes is invaluable and priceless.

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Hooray for you. the fight is worthwhile. i remember my grandmother always saying to me when i was going through puberty : “pick your battles carefully.” some things just arent worth fighting for. but then again, there are things that are definitely worth fighting for. we are all interested in finding a cure. (if not for diabetes, then for something else. ) a cure is a cure is a cure. it is a battle worth fighting for.(and it doesnt have to be a “fight” but an effort.

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This is interesting. My field is education, and this study seems counter to what many studies in the educational field conclude: that grouping by mixed abilities is positive both for the highly skilled and less skilled students, particularly when mentoring and peer-teaching are encouraged. My best guess is that perhaps in an environment where competition with others is encouraged, mixed ability groups may be stressful and therefore detremental; while in an environment where peer support and self-improvement are encouraged, mixed ability groups seem to have a positive impact for all involved.

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I have also used the term balancing, rather than controlling my BGs. I think of the tools we have as being similar to a pole or bar that a tight rope walker or balance beam gymnast might use. And even they fall off sometimes, and I assume they don’t blame the moon.

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for me, blame accomplishes nothing but resentments. one thing i strive to steer clear of is self-pity; i believe hole heartedly that self pity is its own disease; it creates negativity rather than a striving for hope for my well-being. i fall all the time. but hope gives me the strength to pick myself up, dust myself off, and climb back on to the beam.

i belong to another “support” community and they have this wonderful prayer. (and i am not much of a praying person) the prayer is this:

"grant me the serenity to accept the things i cannot change, the courage to change the things that i can, and the wisdom to know the difference."

and a member of this community once said to me while i was in a complaining, self-pity party, to

"pray to want the things i have, and to have the things that i want." (its taken me years to understand this one, and even longer to be able to practice it in my life. once i started practicing it, my outlook on life took a 180 degree turn for the better :blush: .)

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I have always been of the mindset that honesty and accountability are the best policies, especially when it comes to the management of ones health.

I would not presume it ok to tell a newly dx’d diabetic that the reason for insert issue here is due to / because of insert moon phase, birth sign, hair color here. Honesty, period. If someone is open to, and wants, the advice - that is PRECIOUS time and information that may make a difference for them. If it doesn’t, it’s something they may think of later at another time and try. Telling someone it’s due to it being a Wednesday vs. it could be due to the meal you ate after exercising and not adjusting your basal rate afterwards… well, hopefully something factual is going to have the most impact.

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Especially when combined with the understanding that it’s routine for it to not work out as planned, so we just surf our way out of immediate difficulties, and maybe adjust what we do for the next time to see if that works better.

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I have always been of the mindset that honesty and accountability are the best policies, especially when it comes to the management of ones health.

I definitely feel this way too, but it’s such a fine line between providing helpful information or suggestions and/or making people feel bad for their decision. For instance, in other forums I’ve seen parents say “we couldn’t get X food to work no matter how many times we tried it.” This was often the explanation for going low carb or having their kids never eat a certain food. And the thing that I always wondered is how many times they actually did try it, and how many ways they varied the experiment. I wondered if they realized how many experiments were required to actually conclude that it simply wouldn’t work. I mean, again, pointing to daisymae’s thread – there are 1,000 posts in it! That means she’s done hundreds of experiments to work out what’s going.

But I always hold my tongue because telling someone “well, you actually haven’t tried everything and given the average variability in blood sugar you’d probably need to do 30 experiments or more before you can even start to hone in on a robust formula” always seems kind of judgmental. And the reality is that this is totally possible in theory but the reality of day-to-day life means you make tradeoffs. so practically speaking, maybe it IS impossible for that particular family, in that particular circumstance, to figure out why blood sugar is doing something crazy.

I’ve also noticed (on this and other sites) that my desire to be so!helpful! and provide a huge data dump is often sort of overwhelming to people…like they’re only able to take in so much information at any given time, so giving that information at the wrong time might fall on deaf ears.

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At the risk of being the black sheep… I think my first words, before catching them, are often “that sucks”. Because in my mind, that sucks.

But I’m not a negative person, nor am I a bubbling optimist. I’m somewhere in the middle, when everything is well-aligned. And I don’t think saying, “that sucks” casts a negative light where there was none. I think most people think diabetes sucks, and I don’t remember being happy at diagnosis. So, in my mind, it’s confirmation of what’s already there and of what’s not TOTALLY untrue. Now, similarly, I also believe in venting and complaining… Some people discourage another from complaining, but I don’t think it’s such a bad thing. However, if it STOPS at complaining, then you’ve got nothing but negativity and staleness. But if after a good vent comes an idea or a strategy, then it’s a part of a healthy process, and for me, a necessary part. A catapult.

I don’t have any qualms telling a person it sucks when they tell me they’ve just been diagnosed. Okay. And now what? The faster you get to “it is what it is” and start acting, the better. And if you want to complain all the way through, that’s okay, too. As long as you’re complaining while taking care of business.

What I REALLY have to say about diabetes is in my actions. It’s in my energy and my humor and my passion for things. I can say it sucks until the day is done, but I’m not a miserable, sick person. I’m running, laughing, dancing… soon to be swimming… I’ll tell you that sucks on my way out of a Zumba class or while testing my blood sugar at the playground with my kids. I’m full of life (not an opportunity for a joke). And I live a good one. Life is hard on all of us. Diabetes DOES make it harder at times, but it has also made me a better fighter.

It hasn’t been peachy, so I couldn’t sell that if I tried, but it’s doable, and if you learn how to get up and do it everyday no matter which day of the week or where the moon is, it can be just fine. And life can go on being hard and wonderful like it is for everyone else.

Diabetes is an excellent teacher. And it sucks.

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I think commiserating about how diabetes sucks is really a normal thing for sure. I think both that it sucks AND that that we are so blessed to live in a time where our beloved child can grow up relatively healthy with such fine-tuned treatments.

But to me, saying diabetes sucks is sort of qualitatively different from saying it’s unknowable on some fundamental level. I mean, on some deep level sure – like all of life has some mystery at its core— but there is just a lot more information we can get before we reach the limits of our potential knowledge.

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So, I guess the one thing I also think can feel so mysterious about diabetes is that it’s like solving a complex math problem.

I remember sitting at the blackboard in college during either Complex Analysis or Fourier Transforms and thinking and thinking and thinking and thinking about a proof. You try a bunch of things. There’s all this busy energy that feels unproductive, because it’s just dead ends, false clues. Your brain feels like its spinning its wheels but you really are getting nowhere. You stare at the problem more and it feels like there’s just no way you are going to reach understanding. It feels totally and completely futile. Your brain is systematically trying things but none feel like they’re getting you closer to understanding.

And then somehow, a path opens, the pattern emerges and you start to see a path through. And then, once the problem is solved, it seems so hard to imagine not seeing the solution. But that process ALWAYS took longer than I thought it could/should, and there were no other classes in my life where understanding felt quite that way.

I feel like cracking diabetes problems is like that. You gather data, you try ideas. They all sort of feel like dead ends or wrong paths, but they provide information. You start feeling that “I’m totally lost, i’ll never figure it out” sense. But you keep gathering data. It all feels like being lost in a vast forest. And then somehow – I’m not sure how – one day you are looking at the problem and a solution presents itself. It may not be perfect but it’s closer to the right track. Maybe just because you’ve seen enough data that your brain has been puzzling on in the background…it’s finally figured out a pattern? And once you’re at the other end, the pattern seems so clear and obvious, and the next time you face a challenge it just doesn’t feel as uncrackable.

But that period of frustration with just one particular type of problem can last weeks or months, and I think very few of us are used to problems like that in life – where we just feel like we’re making zero headway for so long.

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You have to to accept that the answer exists… You just have to play Sherlock Holmes and figure it out. It’s never easy and always a lengthy and frustrating process. But the prize is worth it to me.

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