Is LWD/"The OC" a Culture, or Just a Community?

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1

I originally posted this as a discussion over on Diabetes TalkFest, but am curious about thoughts here…

During the lead-up to Type 1 Awareness Day, I have become aware of the extent of what some are calling the “OC” (Online Community for PWD), I am beginning to wonder if Diabetes, Life With Diabetes, or whatever you wish to call it/us, is evolving into a Culture – somewhat analagous to Deaf Culture, or to the cultures of minority religions in mainstream society.

We have our own shorthand, which is almost a subdialect. Words such as “carbs”, “pens”, “shooting up”, and “pumping up” have different meanings to us; we bandy about abbreviations such as bg/bs, A1C, and the various medications and regimens we are on to control this condition.

We have, to some degree, our own diet. We may argue about it incessantly, but in the end we tweak even the latest-and-greatest fad glucose-control diet to our own needs.

We have our own lay gurus, who have blazed paths through the medical and legal corpus; some of us even manage to wade through the technobabble and bureaucratese ourselves.

Our lifestyles are often different than the non-Diabetics among which we live – set schedules, set menus, “did-I-exercise-today”, “do-I-need-to-correct-for-that-LifeSaver?”, and “Do-I-have-emergency-sugar-with-me-in-case-of-a-low?”. We live with a constant, underlying subtext of fear: fear of dying early, fear of complications, fear of dying piece by painful piece… We try to appear assimilated, we drown out the noise with social niceties… but deep down inside, we know We Are Different.

Like any Culture, we have class divisions – Type 1 versus Type 2 versus MODY and LADA – taking the place of those who were raised in The Culture and those who adopted The Culture later on in life. We even have people who are Culturally Diabetic without having diabetes themselves – some folk call them “Type 3s”.

Against the idea of Culture, we still all walk different paths in life. We don’t gravitate to a single set of professions. We don’t socially gravitate towards others with diabetes in favor of those without. Most of us are neither evangelists towards the diagnosed-but-not-socially-connected, nor do we deliberately hide our culturally-specific rituals (checking BG, correcting for highs/lows, etc.) from the mainstream. While our rites of initiation may be held in the privacy of a doctor’s office or a CDE’s office, we do not deliberately shroud them in secrecy.

What defines a Culture, as opposed to merely a Community? Are We There Already? Are we evolving towards a Culture? Should we be?

[I defy anyone outside the Culture to decipher this: T2 dx 7/2002, d&e; T3 to T2 Parent (metaglip) and T2 SO (metformin)]

2

Great post!
I’ve learned that in daily life most people–including a lot of people who really should be worrying about their blood sugar–given their family history and eating habits, don’t want to think about diabetes. They certainly don’t want to talk about it. Even if they’ve been diagnosed. So I make it a practice to NEVER discuss diabetes with people in daily life unless they bring it up. They rarely do.

But online people HAVE brought it up, and unlike most people in my immediate environment, the folks in the OC do want information. And they are endlessly curious about the ins and outs of diet/insulin/drugs etc.

So that is why I put so much of my energy into the OC. And why I rarely if ever discuss diabetes outside of the OC.

3

The scary thing about PWD outside the OC is how seldom they get updated information on findings regarding diet, exercise, comorbid conditions, and complications.
BUT, the other thing is, where I find a definite T1/T2 split, is that a lot of adults diagnosed T2 after age 50 or 55 tend to think that as long as the doctor says the numbers are good (regardless of medication, medication level, etc.), they’re fine. They’ve never been taught they need to test (their T2 grandparents never tested!), and if they have been given any instruction concerning their diet, it is usually horribly unbalanced and out-of-date…

4

I do find that the diabetes OC is very insular. It’s a very tight group, extremely supportive, but I wonder about all the people who aren’t aware of any part of the community. How does the community reach them, and do they want to be reached?

It took me forever to figure out what d&e meant, but finally my slow brain clicked.

5

Hmm. In some ways, dLife is as good an entree as any. It’s a TV show with an attached community (both forums and bloggers). Some of the dLife bloggers also have their own blogs elsewhere, with links to the rest of the OC.

Obviously that requires a bit of investment in wanting to get involved in one’s own health :wink:

The same thing could be said for running a panel, or having a booth, at a Diabetes Expo – the people who go are already committed to treating themselves (or to getting lots of swag… sometimes it’s hard to tell). OTOH, they may not have found the OC and it would be a place to expose us/it.

The third place would be at wherever a patient normally goes for his diabetes education – PCP, Endo, CDE, etc. The issue there is that many licensed medical professionals are afraid that a patient might get misinformation, or misinterpret the information he is getting, from anything he might read online. Also, some licensed medical professionals feel threatened by patients who take too active a role in their own care (they are too demanding of time, alternative treatments, etc.)…

The question I’d ask back is, does the OC have a forum in which the key players can chat, and those of us who are not key players can throw in wish lists and suggestions and find guidance and/or contacts with which to move forward?

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you are part of the OC by being a member of TuDiabetes.com

asking other people you know or spreading the word about us helps others to become part of the “culture”

i know that the more i delved into the forums and the blogging and the groups, the more informed i became. and i have a tendency to roll up my arm sleeve, show my bracelet and tell everyone i come into contact with. i keep pamphlets in my purse, i post on bulletin boards when i see them, and i keep informing, informing, informing! knowledge is a POWERFUL THING!

7

Guess I am, technically, but I’m not really seeing it that way yet… I’m still seeing mostly the “power players”, who may at times post here, or who may sometimes blog at dLife, but whose main contributions are elsewhere. But for what Laura suggested, yeah, word-of-mouth is a good thing.
Pamphlets? You’ve written up pamphlets directing new people here? Kewl.

8

What you are seeing is people not afraid to “Raise their Voice.” Getting people to join is one thing, making them prolific posters and willing to tell others is another. A lot of people are afraid to make it known that they have diabetes.

This is how I got involved. You can print a flyer that you can hand out or post on a bulletin board here: http://tudiabetes.com/forum/topic/show?id=583967%3ATopic%3A19179
It is what i started doing to “Raise My Voice”