Let’s keep the conversation going about how we feel the platform migration has changed the nature of the TuDiabetes (for better and for no-so-better), what we might do to woo back some of our old friends who are not here much these days as well as make new ones!
As a starter here: @Brian_BSC and I had a conversation this morning in which he shared with me a great idea to work on a campaign that would encourage more sharing of our personal stories, through a few different means. I think this could be a great way to get reconnected with one another and also get to know new folks better. What do you guys think? What other ideas do you have?
There are some very personal stories I would like to share. It doesn’t feel safe to do so here anymore. The one I would like to delve into at the moment, I would have posted in the Bernstein Group on the old site–a place where there was a baseline agreement on a starting place, no long explanations needed of where one is coming from.
I see very few lengthy posts about issues—a few, yes, and I enjoy them very much. But everything is very telegraphic. That isn’t how I write…
Discussing issues and feeling safe to do so are important, and I, too, really benefit from those posts. I find myself at times wanting to ask questions but I am afraid that I would inadvertently give offense.
@Judith_in_Portland, the Bernstein Solution Group is still here, only in the form of a discussion instead of a “group” as they existed on our previous platform. I hope you will feel safe and comfortable to post there!
I absolutely agree that we all need to feel safe to ask our honest, genuine questions here, as well as voice our opinions and experiences. What are the things here that cause your concern about giving offense, @kathimcb? I would love to figure out ways to increase members’ feelings of safety here
Please feel free to ask ANY questions. The admins here are watching things for comments that might indicate a misunderstanding has occurred, and we now have a flagging system that any member in good standing may use to alert us to a possible offensive, disrespectful or off-topic post.
we have newbies to diabetes here as well as seasoned veterans. I feel our values here reflect a core belief that we want to help each other here, and as Emily Coles recently said “No one knows everything”.
@EmilyC and @MarieB,
Thank you for your support. I check in most every day and have found this site extremely helpful. I have learned a great deal.
I think one thing that makes me hesident to share is I can’t help but feel that my issues as a Type II pale in comparison to more serious issues I have read here. When my biggest issue is my repeated failure to control what I put in my mouth, I can’t see that as being particularly relevant to this forum. I also don’t see many posts in the Type II category and I wonder why, which is something I’ve wanted to ask, but haven’t.
I guess the problem lies more with me than the site. I think I am going to have to be braver.
I have had problems jumping in on conversations because it all feels so technical and less sympathetic. Personal stories become more about science & less about the person. Sometimes people just need a friendly space where others relate & offer encouragement. Sure, someone might not agree with advice given, but let others have their say without correcting them to one’s own views. I had stepped away from the site because of that & decided to try again after the re-launch. But I have yet to find give & take conversations, just more ‘my way or you are wrong and here is the research/5 paragraphs to back it up.’ Sometimes I feel like we need a less formal area to offer support. Someplace were people cheer each other on & offer a shoulder to cry on if needed.
I saw a really great tweet from the first day of Master Lab… “When we don’t feel comfortable sharing experience(story) we experience a systemic numbing” [Link][1] (Speaker Marina Tsaplina)
[1]: https://twitter.com/SpinningDPlates/status/618438982196707328
To me, having a bunch of goobly goop thrown around when someone just needs support creates that numbing experience. And in turn, drives members away.
I am a relative newbie, and I speculate that would the source of any tentativeness I feel to post. I am learning a great deal and am very appreciative for that.
I vote for braver, this is not just a T1 site. TuDiabetes exist for everyone. At the time that Manny Hernandez created TuDiabetes he was misdiagnosed as a T2 , for that reason I say that T2 issues are just as important as those of any other type. If you ask the question I believe you will find a sympathetic person to answer. Please don’t fool yourself your issues are just as important. Don’t let the blame that has been heaped on T2 diabetics stop you from participating.
I’m sorry I didn’t weigh in earlier, I am running around and haven’t had the best connections down here at FFL.
My suggestion to @EmilyC was that we get back to a core concept that started this whole community, “You are not alone.” And that we have an initiative that focuses on two primary issues:
With the migration we lost at least some of the strong personal connection we had on the old site. We lost touch with friends. And most of all we couldn’t really see each other’s “Stories” (more on stories later).
We underserve our community. There are 30 million people in the US with diabetes and another 80-90 million with pre-diabetes. Only a tiny, tiny fraction are here.
So I proposed to Emily a two pronged approach, first that we address the personal connection issues by series of initiatives all tied to building us into a stronger community
Telling each other our “stories,” it helps us know each other, creates personal connections and build the community.
A series of joint “projects.” Perhaps collecting our “stories” and publishing them. An art project, maybe another poetry project, maybe a series of videos.
A “DiaBuddies” program to let people make connections with 2-10 other “friends” and form a private social circle to take on individual goals and to provide direct support to each other. Goals can be varied, weight loss, feeling happier etc.
All aimed at bringing us together and not feeling alone.
The second part is to take on a theme from “You are not alone.” Hopefully to engage much more of the type 2 audience who aren’t here in the proportion I might expect. And I have this hypothesis, that many people with T2 feel stigma and blame about their condition and don’t want to reach out for support because of that. So I’ve suggested that we take on the stigma and blame that many of us feel about our diabetes. And in this I would suggest we take on a broader activity to reach out beyond our community and hopefully broaden and deepen the community here. To do that
I’d like to work to create a “meme,” a concept and a thought that can propagate through the DOC.
A series of invited live interviews to talk about these stigma and blame
A series of invited topic posts and led discussions on the topic
Having (at least) some of our community help share this “meme” and enlist the broader DOC.
A series of community efforts to develop a “single voice” to combat misconceptions that lead to society placing blame and social stigma on diabetes.
These were just some of the ideas I had. I would really like to get feedback. Are these ideas bogus? Are there other things we should do?
Hi @Brian_BSC. About your Series of Joint Projects: at another time, I suggested to Emily that …“we could publish a book, which would have two parts. We could take some favorite poems and blogs from the old TuD for one part, and ask members to submit new poems and blogs for the other, new TuD part. If it were a real book, that is not an e-book, our artists could illustrate it, although e-books do publish front and back covers, which our artists could create.” I kind of like the idea of connecting the old and new TuDiabetes, but anyway, I like the idea of a series of projects.
I think the old site seemed so much friendlier because we could talk to friends on our Profile Pages. In fact, I think that feature was incredibly important, and it is really missed, at least by me. I wonder if there is any way to get that ability installed on our current Profile Pages? Thanks for reading.
I was thinking last night about the art projects we’ve had here. When I joined, it really impressed me that we had such a strong connection to art, and valued deeply how creating art helps us cope with a chronic condition. The very first private message I got was from someone named Manny Hernandez, he was commenting on some quilt photos I’d posted and he asked me if I’d ever be interested in making one to use as a prize for a competition we might have here (@askmanny learned quickly to ASK and “go for the no” as he recently called it). I quickly became friend with @Judith_in_Portland, another artist, and enjoyed the graphics from @Andreina_Davila that graced our pages. Around this time, the “Word in Your Hand” video was being made, and “Diabetes Supplies Art”.
I love all the ideas you have Brian, really we could lead the #DOC in type2 awareness and liberation. I know this a personal goal of yours and I fully support you.
I feel like everybody knows my story as I say the same things over and over again. I like stories. I think I was pretty open-minded about the transition and it met my expectations. It seems like there’s still plenty of friendliness, people typing (((hugs))) and that sort of thing. It still often seems to be much of what goes on in the Chatroom which I peek in on every once in a while too. I am sad that some folks chose the “shift” as a moment to leave but it’s a free country. I think I may have spotted some of them on other sites but am too lazy to get involved in another online community right now. Maybe when I retire in uh, 25-40 years.
I have a local group of folks,some of whom I met through Tu, one through a running club and one is an old friend. I also decided to get more involved in the Tour de Cure this year and was able to do so. It didn’t file like I did a lot but at the Champions Banquet, people were really friendly and it was a good feeling to have done what I did. I like the idea of a Diabuddies program but am leery of those kind of things too. I work on interesting, litigated cases at work and while I have not seen a “diabetes advice” case, I’m leery of providing too much “tactical support” as I may have a different opinion about deploying firepower than say the ADA or AMA or anyone else. I share stories pretty freely and try to keep an eye on threads. I probably underserve people with emotional needs because I sort of ignore my own and live on “PlanetAcidRock” and try to keep the diabetes space invaders off of the ground. I have read enough psychology/psychiatry (some in college, others dealing with cases…) to think that a doctor would probably be able to diagnose denial of emotions as a problem in itself however it doesn’t seem to get in the way of anything diabetes related. But I would be leering of saying “■■■■ diabetes, diabetes is bull ■■■■” to anyone else, even though it’s sort of totally how I think about it.
I have to agree, but I doubt anything can be done about it, the new platform is just different. In reading some of the replies to this post and the other related one I wonder if the new cleaner interface is somehow responsible for the site feeling less welcoming, more antiseptic?
Sorry but the new Bernstein Group Topic is a poor substitute for the old group, I would note that there has not been a new post there since the move. To be fair the old Bernstein Group’s heyday was several years ago and it had become inactive for long periods even before the change to the new platform.
The new platform has no obvious way to develop and nurture friendships, to discover what we have in common beyond our mutual scourge. Nor is there a good way to develop sub communities like the Bernstein Group. These are an important aspect of community. The old cluttered interface had some advantages that were not immediately obvious before the move.
TuDiabetes played a key role in a major transition I went through just over three years ago. Based on reading many contentious low-carb threads here and faced with a new diabetes complication diagnosis, I decided to radically change my way of eating. I also started a daily exercise program. Ideas from the TuD flatliner’s club and the Taggers United group enabled me to make breakthrough gains.
Over the last three years I’ve learned that my experience is not always helpful to others. I realise that reading about successful tactics can look like an emotional desert to some readers and technical/math complication to others. I know we are not all alike. I am excited about the technical and math does not turn me off.
I’ve made a deliberate effort over this time to try to provide more of the emotional, pat on the back, cheering on like a coach support. But my bias to my particular personal perspective probably comes out quickly in anything I post. I do not apologize for this. Part of participating in a community is the exposure to different facets of the truth. I try to really understand where others are coming from and resist pushing back only for the sake of argument.
On the other hand, if this site turned into a confict free zone, I would not like it. Respectful disagreement can sometimes teach and illuminate in ways not otherwise available.
I’m on this site almost everyday. I don’t always comment but I read many of the threads. If I’m irritated by a comment, I try to let some time pass before responding. I’ve written many reponses that I simply deleted before posting.
Written communication is a medium with both strong and weak aspects. The beauty of it is that no one interrupts you. You may carefully consider your words and edit until it at least gets closer to your intent. I think people could become better writers if they just slowed down and thought about their words before hitting the reply button. I know writing is an art and none of us has perected it. But I see so many key descriptive details left out and sometimes these details are incorrectly filled in by the reader and needless conflict ensues.
I don’t really like the short form twitter and text style writing because I think short form done well actually takes more time than a longer form of writing. I know there is a niche for twitter but it reminds me sometimes of conversations in a loud pick-up bar when I was in my early 20s. Short, clipped, and witty rejoinders were the most successful. That doesn’t play to my strengths.
I’ve rambled on for a while. I just wanted to cover some things about human psychology that will not change as we try to restore some of what we lost. I’d be happy to participate in many of the suggestions made to evolve into TuD 2.0.
My dear @Terry4 , I so wish we could sit down and chat over a cup of tea (iced for me) or some wine and cheese. You always balance so nicely the pragmatic, the scientific and the emotional. I have a deep appreciation of how difficult that can be, having set off an unintentional display of fireworks once or twice.
I struggle daily with re-finding a way to BE here as I used to be. I also stop by every day, each day with hope and a desire to learn how other old-timers are managing to do it. I admit that I sometimes just give up after scanning forum topics. So many questions of boluses and pumps which are no help—I have picked up the lingo and have learned from friends about these things because I know I may need them someday. But right now these are not my issues. Where I can I comment, but as I said yesterday, there is not much encouragement in this format for lengthy, considered responses.
Anyway, you and @BadMoonT2 give me hope—Sanity and calm and moving forward to make it work somehow. …Blessings, that wish for you both doesn’t change!..
Thanks for the compliments, Judith. You’ve always impressed me as a very tolerant accepting personality, a winning trait in most conversations.
I think just going through the motions of reading and responding where you think appropriate is the best way to adapt. We are constantly updating our way of being every day anyways. Just showing up is half the battle.
Unfortunately for me, I have more experience with things link insulin pumps, CGMs, and some of the more of nitty-gritty tactical aspects of diabetes. This gives me more to write about but I wish I never had to gain this experience. As you well know, there is much more to living with diabetes than the tactics employed.
We all need to play the hand we’re dealt. Your strengths with diabetes are in other areas and you affect more people here than you may realize.
I’d love to take you up on the cup of tea or the wine and cheese sometime. I’ve met some people face-to-face that I’ve interacted with here and it’s been interesting. I think real world meet-ups should be on all of our agendas.
I check this site every day, often multiple times a day. It’s been the place I feel most connected to in the DOC But I too have been wondering why there seems to be less of a connection since the migration. Maybe it’s a variety of things: threads that I don’t have anything to comment on; some staleness of topics; voices that I’ve come to rely upon not being here anymore… not really sure.
But I do have hope, as this is still such an inclusive place and trying to improve at the same time. Brian’s goals of getting us all reconnected through projects, stories, and such are excellent. I love the diabuddies idea. Although I’ve found here that I learn just as much through the differences (diet, type, etc) as the commonalities. So it will be interesting to see how those groups would get matched up.
@Terry4 I love Twitter and I use it to promote our programs, live interviews and interesting topics a lot. I don’t Tweet snappy replies or what I’m eating for breakfast, mostly things with links to here, like
"just added - live interview w Kendall Simmons (link to interview)"
“Help us reach our goal on the #BigBlueTest (link to BBT)”
“live feed from #masterlab here”
“Share your memories of @askmanny here (link)
“new #Dblog from @lawrPhil on #RA and diabetes (link)
”@Diabetes_DRI announces major research finding (link to article)”
"@NYTimes editorial on Why We’re afraid of fat (link)"
I also totally rely on Twitter to keep up with what’s going on with conferences and meetings. right now you can see the action at FFL by searching for the hashtag #CWDFFL15 - every big conference will have a hashtag that’s searchable.
Lots of PWDs use Twitter brilliantly to connect, share news and basically for ICYMI (in case you missed it) items, also to share pictures, videos and @askmanny 's crazy musical taste
