I would agree, Shadow, that TuD (IMO, of course) has been less friendly lately. I don't visit as much anymore. I think it comes down to a concept that I wrote about in my most recent blog, that one size does not fit all--when you give advice, say, “This worked for me, it might work for you, but then again it might not.” I think that people in the "5 A1c Club" drown out those who then feel they don't measure up if they are in the sixes or more. And the "very low carb is the only way" mentality excludes people. My personal opinion is that we need more compassion, less judgment. Diabetes is not pretty; we all can use a helping hand and the friendship of people who truly understand.
One of my personal goals with the new site is to change this tone of the community. I want this to be more welcoming to T2s and let it be about people finding their own way even if those ways are very diverse. And I agree, what we all need is emotional support, compassion and empathy.
It's sort of sad that people are saying "the site isn't as friendly so I don't hang out" as it seems like the way to make it friendlier would be to support the commmunity by hanging out. If people are being obnoxious about their numbers or their diet, speak up and say "well, I eat carbs and sometimes I'm successful at it", ideally tossing out some ideas, prebolusing, extended bolusing tactics or whatever.
I see stuff on FB, e.g. the 5.5 and 99 club, that can be fun but don't have the same possibilities for deeper conversations with more specifics about tactics and strategies that we have had here on Tu. I haven't ever joined the 5 A1C Club group because I feel like it smacks of elitism, although I am super guilty of waving that around when, in certain contexts, it might make sense or if I feel like it gives me some credibility for one purpose or another. I would not be opposed if someone said "shut up with that, I do everything and my A1C is X" with X having all sorts of potential numbers. If the person is happy with that number, I try to give them a high five, if someone says "eek, I want to change my number" it might open up the floodgates to all sorts of tactics but, well, that would depend on the information provided and all that. I try to be friendly and I think the solution to charges that "the site is not as friendly as it used to be" would be to post in such a manner as to help push the site in a direction you'd like it to go. I'd ask you folks to try to do that, maybe the "reno" project will be a good opportunity to try to be friendlier?
Hmmm...what a waste of a perfectly good way to dispose of rotten tomatoes ...
(Sorry guys, I am in a snarky, kidding mood this morning)
AR, you wrote: If the person is happy with that number, I try to give them a high five, BAM! See what you've done? You have subliminally beat them up for not being in the 5 A1C club, by giving them the high FIVE!?#*$*! Maybe you should try and give a high six or seven, or 6.4, etc??
Hey Shadow. Hopefully your thoughts don't prevent you from being an active participant, because no question is too silly and I've learned just in the past month or so there are many very smart and compassionate people on this site. I do get what you are saying though, that there are some (for lack of a better term) "soap box posters" here. I don't participate in many sites like this but when I do, I try to remember to keep a sense of humor and not take anything personally. It's hard to do both, especially when living with any type of diabetes is inherently not humorous AND very personal, but I try. Take care of yourself.
Yes, I thought about that acidrock, that those who feel there may be a need for more balance in the friendly department should post more, not less. That said, if you feel like you are exposing yourself to negative “vibes” anywhere in your life and you can remove that negativity you’re going to do it. Perhaps this is something for the admin and care teams to be aware of and try to counteract by taking part in discussions that get snarky and spreading a little TuD love? Not sure what the answer is, and FYI acidrock I’ve never picked up on any bad vibes in your posts:) In terms of the T1/T2 discussions that seem to be at the root of many snarky debates I have a kind of outsider perspective because my diagnosis has been, and still is to some degree, unclear. So when I’d read those exchanges that often turned argumentative with hurt feelings between the two camps I’d think, “well at least you guys know what’s wrong with you and you’re getting treatment and some help and support from your physicians.” Diabetes is a symptom of blood glucose disregulation and the way it is diagnosed and typed in my humble opinion is archaic. There are so many different things that can go wrong along that regulation loop, so many degrees of disease, so many variations in how it effects a persons everyday health that to say there are basically only two types is kind of absurd. Maybe there is a brave endocrinologist somewhere who will take the lead and call for major changes in the diagnosis of these problems and along with better (and earlier) treatment for patients there will be less “competition” someday between patients in terms of what type has it worse. Because it seems to me that if you lose a foot from complications of diabetes it doesn’t matter what “type” it is, either way you suffer. Patient forums like this are important, I felt supported when I joined and I’ve learned a lot here and plan to stick around. I do wish that more people would comment though and my concern is some are a bit timid and perhaps worried about saying the “wrong” thing and being attacked. I think we need to remember that people are different, what may be a healthy debate to one person may feel like an attack to another. Neither perception is wrong but it’s important for these differences to be respected if all members of the diabetes community are going to feel like they belong here at Tudiabetes. Melitta, I (and many others) hope you will continue to post here, your knowledge and compassion for those with this illness has helped so many people understand their disease better and get better treatment.
It is my understanding that there is a remote village in central or south america somewhere where most of the residents routinely give high sixes and sevens... :-)
FWIW, I'm truly sorry for any contribution I've made to this change in tone.
I'm a very scientifically-minded person, so when I get on a roll about something in that domain, I tend to get very clinical -- cold -- in my rhetoric.
Also, since my own near-religious conversion to using insulin as a T2, and the dramatic effect it has had on my diabetes management and overall health and well-being, I tend to get very evangelistic about the whole thing when new members show up with chronic BGs in the 300s and a1c's >10.
That's when I go into "Drill Instructor" mode, making statements that sound like orders. It's only because I know how these people feel, and how that could feel. I truly just want for them what I've been able to get.
This thread is very good, though, and has given me pause to think more carefully how these people are psychologically at the moment, needing a gentler approach. I'll keep that in mind going forward...
This sums up my view, which seems to anger some here, which I find puzzling. Diabetes is a single disease, with one issue: Failure to control blood sugar. This leads to a host of hyperglycemia-related complications.
Whether you're T1, T2, MODY, LADA, etc. is relatively minor insofar as the primary problem, and the approaches to treating it.
Now, that's at a very gross level. Of course there are significant differences in the etiology of different paths to getting diabetes. But this is nothing novel either -- many diseases have variations, and different paths to getting there. These are significant issues, and modify treatment modalities to some degree, but in the end the problem still is the same: Managing blood sugar control.
One thing we're finding is that treating T2 like it's substantially different than T1 is turning out to be a mistake. Insulin-replacement therapy from diagnosis is gaining support as each day goes by. We're finding that overstimulating an already weak an failing pancreas isn't the best solution, and throwing off all sorts of other endocrine mechanisms by overstimulating them doesn't seem to be such a great idea either.
Rather, simply replacing the insulin that would otherwise be there with a fully functioning pancreas works really well (surprise). It's a lot of work, but it also seems to be the best solution for T2's, just like T1's.
Go figure.
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Dave - I can honestly say that I've never taken your posts in a negative or "drill instructor" context. You are one of the most knowledgeable and best posters here. Plus, how can you not be cool with a pancake hat :)
The only reason you say all that nice stuff is because of the pancake. It's a secret magic weapon. I notice that, after looking at it, your avatar has little swirling spiral eyes... See how that works? :-) :-)
(Thanks, BTW...)
This thread does raise an important issue. In order for our culture to endure and continue to help people with diabetes it will always need a certain level of consideration for another's situation.
This site was instrumental in providing me with some tactical breakthroughs back in 2012. I was aware of the heated issue of the carb wars back then and I was primarily a lurker. But I followed the heated exchanges and learned a lot. I was a beneficiary of that conflict that I'm sure bruised many feelings!
One of the things I learned was how successful some T2Ds could be using a low carb high fat way of eating. They were getting much better levels of control than me and better A1c's, too.
This brings me to something that I've struggled with here that I don't know how to handle and may be a contributor to the mix of what OP observes. I've had some success. After struggling for 28 years with the T1D roller-coaster and accumulating a few complication diagnoses, I had turned a corner and found some metabolic sanity. For this I wanted to shout to high heaven and share with this community!
Sharing this success, I fear, may have rubbed some people the wrong way. I can understand how someone who is mired in blood sugar blues could see my writing and feel discouraged and depressed. I'm aware of this component and try not to "spike the ball and do a dance in the end-zone." But joy is joy and I still don't know how to rightfully share success without painfully reminding others that they don't share that same joy.
TuD has been a great place for me to share and learn. I've tried to help others when I can and will often reply to a post that has sunk below more active ones with a lonely "0" under the reply column.
I'm sorry that this issue persists and I hope that I can help the community work towards solving it. I am open to comments that may illuminate my "blind spot" and will try to change my ways to make things better.
Dave - I don't take offense at your analytical comments. I share that character trait. Some call it the engineering mindset.
I think the fact that Dr. Bernstein was an engineer before he was a doctor played a large role in his unique path to success. He looked at the same problem as the entire population of medical clinicians and saw a viable and different way to help people with diabetes.
Some of these psychological aspects of chronic diseases management by people with an engineering mindset may be lost on us. I don't know. We all see the world from different and sometimes isolated perspectives. I guess our challenge is how to bridge the gap between perspectives wihtout insulting.
I'll join in the mutual admiration society, 'cause you're one of the friendliest people on this site, Terry.
And frankly, you've been among a handful of people here I've considered role-models of diabetes management since I came to the site almost two years ago.
Don't change anything, Terry :-)
So true. To an engineer, every problem is a nail. The first thing we do is look through our hammer collection.
Drives my wife crazy sometimes, when all she wants to do is commiserate about a problem. From word one my brain is spinning working on a "solution".
After 24 years of marriage, I'll admit I have gotten a lot better at just listening... :-)
In my professional career(s) (I'm unretired and on to my second) I've learned that one of the hardest things to do is to "meet people where they're at". It's also one of the most important. You can't shout from a place a mile up the line and expect the person to fly over there. You have to stand next to the person and say, "I think you can take this one little step right here." And maybe even take their hand and walk it with them. That doesn't mean you can't say, "there's this great spot up ahead that has a cool spring to drink from and beautiful views. Let me suggest the path I took that got me there."
I think this site has an amazing culture of doing just that. We might have heard the same difficulty or issue a hundred times before, we might have successfully conquered it ourselves years ago, but we recognize that for that person it is new, intimidating, and overwhelming. So we stand next to them and show them that next little step. And maybe we too learn something new along the way.
I've always found group cultures very interesting. They grow and develop and get strong and then they're maintained by many hands sometimes without conscious volition. New people come into the group (whatever kind of group it is) and sometimes rock the boat a bit, but soon find their space and become a part of the culture (or hate it and leave!). I'm not saying it's some Stepford Wives conformist thing. TuD is made up of engineer minds and artist minds and psychologist minds, etc. And probably every diversity group there is (how cool is that!). And we all play a part, but the culture stays firm, changing slowly bit by bit with time and different influences. When a group grows quickly it goes through some rocky times until the new individuals find their place in the whole. Perhaps we are going through one of those times, I haven't noticed it personally. But the culture is strong; I felt it when I came here 6 years ago and soon I stopped going to the other two groups I'd joined looking for answers as to why the pills were no longer working for my "Type 2 diabetes." (because it was Type 1). I feel it today.
Now, engineer mind members, I'm counting on you to get us airy fairy types through the new website transition!
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I think the degree to which we may disagree and its results is the civility. As far as T1D and T2, I was first dxed as a T2, then dxed as a T1D.
Its much easier using insulin, even with the hypoglycemia. And I spent 2 years following a T2 regimen.
Creative "airy-fairy" types often come up with the best engineering solutions! We'll get through the transition together. As much as I don't like having to change and adapt, I know once I learn my way around, things'll be fine.
Diabetes is made for us engineering types. Once my doc was questioning me about why I test so much, he felt once a day would do. I replied that the data helped me improve my control. He muttered under his breath "damn engineers". I took that as a compliment:)