Maybe even cultures though, as there are differences? USA DiabetesPeople, UK DiabetesPeople, DiabetesPeopleWithInsurance, DiabetesPeopleWhoThoughtTheyHadInsuranceWhoHaveLearnedTheirInsuranceSucks, DiabeetesSpousesAndOtherSupporters/Managers, etc. The list goes on. The culture is a very good antidote to feelings of being left out or isolated that I had quite a bit of over the years. Mostly dealt with by self-medicating with beer, etc.
Yes, but this is actually different. If you walk into a bar and you see someone else with a pump, you can strike up a conversation with them and identify with them in ways that you cannot connect with others. You have a shared experience. You appreciate the same things. And you are different from everyone else in the bar. And this differentness is expressed by our behavior, the way we talk about things, our attitudes towards food and exercise and medicine. And think about the poetry and art.
This is the same way that someone who is deaf or is blind feels.
Actually, a small percentage of T2s are antibody-positive. Citation here. Now, whether they are correctly diagnosed T2s is another issue altogether.
Well said, Jen! I do think a lot of it is about culture and experiences and I certainly agree with you that those whose childhoods were ‘stolen’ by diabetes have shared experiences that those of us diagnosed as adults could never truly identify with.
That’s why I actually really really hate the labels. My own particular flavour of diabetes is antibody-positive, insulin-deficient, insulin-dependent, rapid-onset, mature-onset but also with 30+ years of insulin resistance, hyperinsulinemia and central adiposity. It is impossible to reduce that to a ‘type’ label!
Good point, bsc. I got my Master’s Degree in Special Education of the Deaf, and while I could observe deaf culture, I was never a part of it. I actually thought of the comparison when Jen spoke of blind culture, because in Diabetes Culture, I really DO feel like I’m a part of it (unfortunately!). Sort of off to the side in crazy-land, but still a part.
AR, NO culture or community is uniform – there will always be subgroups within subgroups, but the entirety is recognizable. Here I go again with the ingroup vs. outgroup thing which seems to be a universal human way of dealing with each other, and it’s not always a good thing, but it exists. Maybe we need to start a separate discussion of this, because it really IS interesting! 
I don’t know much about it, but I think from what I’ve read the Deaf culture is more akin to an actual ethnic minority (a “real” culture) than simply a bond created by shared interests or experiences. (That is, if a Deaf person saw the Deaf culture compared to the blind community, they would say it’s not the same at all, or at least that’s my understanding.) Which is why I call it the “blind community” rather than “Blind culture.”
But I definitely think that, especially those of us with Type 1, have a sort of shared history (going back to the discovery of insulin, etc.) and similar, powerful personal experiences (diagnosis, growing up, daily regimen, etc.) that just having something like a hobby in common with someone else doesn’t create. I am guessing (though don’t know for sure!) that people with “classic” Type 2 and people with LADA who are misdiagnosed feel the same type of connection. And then you also have the people who have no clear “type” and don’t know where they should belong. But then you throw all of us in this one community on a website, and it’s like throwing people who are blind and deaf and wheelchair users together. We can relate on a broad scale as people with disabilities who face many of the same issues, but we also face our own unique issues, which I think (bringing it back to diabetes) can create problems and brings rise to threads such as this one.
Interesting topic …
I may be throwing yet another monkey wrench in the works here. I sometimes think that it would be MUCH more useful to classify us here by treatment rather than by type. T2s also use pumps, can also go into DKA, also need to do all the work to maintain control. I must admit that when I see posts asking for responses from one type or other I cringe. I’m not suggesting that it’s the same condition, or the same life experience if one develops D in childhood rather than as an adult, just that some of us have a LOT more in common than type suggests.
I’m a certified sign language interpreter, and found the deaf community similar. Those who were deaf from birth have a different ‘status’ than those who became deaf later. The gap between those who use American Sign Language and those who don’t sign is huge - they are different communities, and there is a sense of elitism on both ends of the spectrum.
Great discussion Natalie!
There’s been discussion at JDRF for some time now (I don’t work there, but my dad has done a LOT of volunteering for JDRF and keeps me up-to-date), about the name. My impression is that the organization realizes quite well that its name is outdated and needs to be modified, but because it has name recognition they have to be very careful about changing it.
I absolutely agree that there is a shared culture, and I think the DOC is a unique form of this as well. I’ve done a lot of observing of different group cultures, but what’s most interesting to me is the process of consciously creating a particular “culture” with particular values and mores. I’ve run a lot of groups and over time the group always creates its own unique culture. As the group does this it brings new people into that culture and I, as facilitator needed to do less and less. The culture becomes established as a natural process, without much need to discuss it, and once solidified it remains even as new members come and old leave!
But I’m talking about a group of 6-10 members max! We are a group of 20,000+ and despite our common ground of D, many individual variations exist both in Type and particular experience of D, but of course also, as AR mentions, all the many many life varieties you find in a group this large that is worldwide. I do believe, however, that we have created a group culture on TuD! I’ve been here about 2 1/2 years and I’ve seen it morph and solidify over that time. I’m sure people who were here at the beginning (what year was that?) can describe the process as well. We have our own unique culture, as a DOC community, which is why so many people keep coming back and (speaking just for myself), spend WAY too much time here! Good topic.
Hi Brunetta,
I don’t disagree that we’re all Type 1s; I was just commenting that our experiences and concerns aren’t necessarily identical. I think about how “lucky” I am regularly. As I’m sure you know better than me, if you don’t count your blessings, you begin not to notice them.
Take care,
Maurie
Woah, backfilled flamewar alert! pops popcorn
+1
Made me laugh.
I can see both sides. I gained a lot of weight using insulin like something you’d buy in the parking lot at a Grateful Dead concert and I’ve lost some weight paying closer attention to what goes in. Lately, I’m thinking that it’s the insulin pump/ CGM not so just the insulin delivery but the record keeping and keeping track of stuff in the long term. Having a hobby that pretty much obligates me to stay on top of stuff (“If my bg is screwed up, I’ll miss a run!!” :-P).
I think that both T1 and related types is an interesting topic and I think that weight gain is an interesting topic too. It sort of upsets me when anyone says “I can’t do ______” because I am inclined to figure out a way to do stuff, both eating and not eating, if I want to do it.
Jen , now I am confused …it maybe the timing of the responses , not related to the response 2 min . prior
" +1
Made me laugh. ???
…and I need to ask acidrock ( my marathoner special ) what this means " Woah, backfilled flamewar alert! pops popcorn ???
And I get hooked, when topics about weight gain /because of insulin comes up …this is not the case for me …and I always express , " this is how it is for me " …I do have life with diabetes experience …almost 29 years …
oh my only 3 more sleeps acidrock …you think of me , I think of YOU during and when crossing the line !!!
fist bump have a great race yourself Nel!
The “+1” is what people online tend to use when they like a post. I liked AR’s post but not because I wanted to see a flamewar, just because it made me laugh (hence my comment about that).
Some posts have been deleted which causes my latest one to make no sense. I just realized I can delete it, so will do that (I really like that feature, never realized I could do that before!).
BOOKED! That makes me sad.
yes, I gather posts have been deleted …the small x on the right does the trick … I am into deleting too , ha, ha …have to go for a walk …
We need a ruling! I didn’t see anything that nasty although I am not sure I was quite following the argument?