Have you tried to get insulin producers, i.e. Lilly, or Squib to print TuDiabetes.com on their boxes?
Manny, Today’s Diabetes in Control gives some suggestions in what Novodisk, ADA & ACP are recommending - a nationwide push for prevention, diagnosis, treatment. Each of their recommendations can be expanded to specifics - can you imagine online school communities of encouragement, etc. etc.
Also in today’s D in C is the latest on the reduction of complications - for those using intensive therapy. When we remove the idea that diabetes does not HAVE to result in these complications, and we add the idea that online communities empower people in their adherence to the best possible for them, we will help remove the sting of diagnosis and online communities become one of many accepted and recommended thrusts.
Well said Terry!!
I try never to keep my diabetes hidden in a closet. I don’t advertise that I have diabetes but because it is with me every moment, every day, I cannot hide it. Why would I feel uncomfortable because others don’t have it and I do? Every blood prick I do, every time I use my monitor, or check an alarm when my pump goes off, is a virtual opportunity for me to raise public awareness that diabetes exists and I’m conscious of this, not self-conscious I have it. The more people that actually notice us when we tend to our condition, the more they understand what diabetes is about. Funnily enough good management for diabetes is a good recipe for everyone because its about living the healthiest lifestyle we can…everyone needs to do this! I’d never seen or met another diabetic person until I became one myself, and met only one other person with diabetes in 14 years…in the last two years I’ve met 7 more in person. Thank goodness for our online community…it was so empowering just to know I was not alone, I cried…there are millions of us!!! I say a fantastic T-shirt, with a superb eye-catching image, would help raise awareness…be proud that we survive and live our lives, despite the inconvenience and tribulations with our health. It is a hero’s journey you know, to manage chronic illness, living with our reality everyday.
Yay, Terry! You made some very persuasive points & some that people really need to hear! We all know plenty of overweight or obese people who are NOT diabetic (or not diagnosed, anyway) and plenty of PWD who are not overweight or obese, including myself. It’s the medical professionals who make me crazy … and all the literature.
I call it the “fat & lazy” syndrome. Every PWD has been subjected to the belief by others that their disease is a consequence of poor eating & exercise habits. Even knowledgeable people make this common mistake. I recently vented about this to my partner, who said she thought it wasn’t as bad as I believe. So, I challenged her to do a simple Google search for Type 2 diabetes & bet her that in the first or second paragraph, there would be a reference to overweight or obesity and lack of exercise. She picked the top 5 responses to the search & the results were 100%!
I agree. Let’s be militant!
Oh, Carol, no! Age has nothing to do with this & no one should be embarassed to be a PWD. I am 56 & the only one in my family, too, although Type 2 instead of Type 1. While it is personal health matter, don’t you think you’d feel better about dealing with this chronic medical condition if you were open?
How about a diabetic talk show? Not just one session on Diabetes with Oprah, but a show that’s set up kind of like the View. There could be a panel of 3 or 4 people talking about the different types. Discussions can be like the ones we have on here. How often should we test, what carb counting is all about, the diffence between Type 1 and 2. How is it different for type 1.5 and LADA. So many different issues can be covered. Guest speakers can come on and speak from Endrocronologists to Diabetic Educatiors. How does diabetes affect other diseases? So many endless possibilities.
I’ve never watched it, but isn’t there one already?
I have seen bumper stickers for the past 10 years or so that say “I may have MS, but it doesn’t have me.” There must have been some sort of movement to create public awareness of people living with a perceived debilitating illness. I’ve never seen anything like that for diabetes, just lots of press and marketing concerning research and fund raising which probably just feeds into the frightening mystique of it. I’d have to think about my comfort level announcing myself with a bumper sticker or the like as opposed to “blending.”
I think that there’s a show called “dLife” on a cable channel.
A couple of years ago, I declared myself a “Divabetic” and got myself a t-shirt. That t-shirt has been an example of REALLY coming out of the closet! 
Check out www.divabetic.org for fun. Anyone can participate but I think that the site will appeal mostly to women.
Any time I can use humor to deal with diabetes is a win!
Janet
I understand the feeling, Carol. Good for you for “coming out” here!
When I was diagnosed at age 41, I didn’t know anyone with diabetes let alone Type 1. It felt lonely and isolating. I’m the only person in my entire extended family with diabetes – and since I’ve always been the black sheep I think that it’s proof to them that I really am different. You betcha! 
You’re right that it’s your business and your choice to share or not. In the beginning, I hated and resented it when someone would tell somebody else about my diabetes. It was MY business, not theirs!
Today, I feel differently about it but I sure recall my strong feelings in the early days, especially the “I did something to deserve it” feeling and the isolation.
I’m so glad you found us here. Keep coming back!
Janet
I would be happy and honored to. But I think someone who is more well informed would make a better spokesperson. And maybe that is a first chore to find a spokesperson?
dlife is hosted by Nicole Johnson (Miss America 1999) and Jim Turner both live with D. It is aired on CNBC Sundays at 7pm EST.
I guess that shows how well word gets out. I have never heard of that show before today.
I think stigma is a big part of the problem. Since we don’t tell people we are diabetic, they only find out when we have issues.
How about a business card - with -cut here- between them? … a downloadable page of them - that provides the names of the two sites with the words “free diabetes online social networking groups” in English and Spanish. At the bottom of the page, “Feel free to copy this page”. I’m not wed to any of my words - just throwing them out for someone to run with.
No “hands” on this - the Foundation is a confusing concept at this point. You want something a doctor can leave in a pile with one message on it. He can put it with the rest of the business cards of the physicians at the front desk of his office. Once he has a page of them, his clerks can do the copying.
How about a colorful 8x11 poster the clerk can hang with other signs in the office? Again, just the site names with short identification of what they are, English and Spanish. We can all get these into the hands of our doctors and CDEs. Something downloadable that conveys there’s others who are out there welcoming you.
Then at a later date, 6 months later, follow up with a different poster about the forums available. (Some of us go at 6 month intervals so we can bring more later.) Messages should be one at a time.
Kids are going back to school soon. If you have something for high school and college age school nurses that students can take them, good, too.
Manny- as you know, I’m the first one to hike up my skirt and show off my pump, but not everyone is as vocal as I am, and there are times when I have and do step back- but never go in or near the closet .
I’ve always talked about diabetes, and would answer questions about it when asked, but it wasn’t the first thing I mentioned when meeting a new person. It still isn’t. But I don’t run to the bathroom to take my bloodsugar or bolus my pump, I don’t care who sees my Diabetes hardware.
I don’t think 1 should hide the fact that they are a PWD. There’s nothing to be ashamed of. We are human beings, we are beautiful, and we have diabetes- see our faces, so the public can get to know the real diabetics-not Madison Avenue’s version.
But, if something (God forbid) were to happen, you as the diabetic wouldn’t be the only one to suffer.
Yes, the diabetic is the one with the high or low blood sugar.
But imagine if you were the friend of a PWD, and had no clue they were diabetic, let alone what to do in an emergency situation. Not only would you suffer, but so would your friend. He or she would feel guilty about not knowing what to do or how to help, and but the emotional scars of seeing someone you care about go through something like that while you stood by and did nothing because YOU JUST DIDN"T KNOW last forever. I’ve talked about this very fact with the Patient Groups and Diabetes Orgs I work with.
I’ve written it before and I’ll write it again: My friends are my friends because of me- not because of, or despite having Diabetes. And I know that by sharing that I am a PWD, I’ve helped to dispel the many D misconceptions and educate the world in the process. So… I got that going for me 
I agree with you, Kelly.
I think we may be asking the wrong question. Sorry, but I think this sort of makes it sound like we, the enlightened, are the healthy and open diabetics because we’re networked, and the non-networked are floundering in denial and despair. I believe the case may be that we are currently reaching only those who are into social networking and are web savvy, and that’s not everyone. It’s a demographic that doesn’t frequently include many in the over 35 set, elderly type 2s, the economically poor with limited free time and/or web access, and many busy families of type 1s.
Personally, I was never in the diabetes closet, but coming of age with diabetes in a pre-internet area, I never thought to look toward social networking as an option for my self-care. One of the things I saw when I first started reading diabetic bloggers was that it seemed to be more common for those diagnosed in the post-technology boom to be using these outlets (though I’ve stumbled on many long-timers since then). I’m under 30, but I’ve had diabetes since before the internet, so my experience with D came first and I feel that affects how late I came to diabetic social networking. Some veterans (and I’m no exception sadly) sometimes resent the young pups telling them about life with diabetes. I spent many years with the “don’t tell me how to deal with my diabetes - you have no idea how long I’ve played this game” attitude. That’s certainly not a case of closeting. More a case of stubbornness!
I guess my point is that some people may just have incorporated the web into their lives after they’d already learned to incorporate diabetes into their lives. That’s certainly the case for me. I was open about diabetes and active on the web, but that didn’t mean I knew that the online diabetic social networking EXISTED until I accidentally stumbled onto it a year ago.
I would like to see diabetic (and other health-oriented) social networking given more public awareness. I’m not sure people are out there hiding from us. I think they just don’t know we’re here. And we change that with every awareness initiative!
First of all thanks Manny for doing all you do, you are opening the flood gates which is ALWAYS the first step. When you read everyone’s blurb here, there is truth in almost everything they say. If we look at all things from the past, there is a formula that we can follow for success or failure.
Whether it is the Civil Rights Movement or the rock group Kiss or Mothers Against Drunk Driving there is ususaly a leader with a firm goal(s) and an ebb and flow regarding the events that change over time to complete the objective. I have had the privledge to work with diabetics in the past and the bottom line is like any degree of dysfuntion, some will come “out of the closet” and others will not.
If I may speak for some diabetics, it seems to me that we have a number of goals starting with the daily management of our sugars, while waiting for a cure. The others of course are educating those who are open or curious, by marketing the idea that complications are terrible, and are costing more money than anyone could ever imagine and that there is a cost either way.
Further down the list is that the window of a reasonable blood sugar is EXTREMELY SMALL and there are NUMEROUS SIMULTANEOUS VARIABLES that make it incredibly difficult. We need people who understand the psychology of diabetes AND marketing to those who are affected directly and indirectly.
The sad part is that it is definitely on the rise, so all of the above will become easier as more people have a greater need to understand THE REAL COST (see my Oprah blog www.oprah.com/community/community/health/diabetes).
For those who are interested, I began to write in Oprah’s Diabetes Support Board because I thought that her audience is huge, and hopefully I could help at least one person. I have been approached by numerous people (doctors included) to reach out and try to help other diabetics, and this is what brought me to both Oprah and Tudiabetes.
This has always been my goal however what was very interesting is that some people are reading the Oprah blog and very few have responded. I expected at very least some reaction and received virtually none. It would appear that although there are definitely diabetics in her audience, they are not anywhere near as proactive as the ones on Tudiabetes, so we have to go where we are accepted in hopes that others will follow.
I emailed Oprah’s producer and received no response. In all probability they did not respond because they are swamped with other ideas, and some people are either tired of hearing about diabetes or not interested at all. They don’t seem to see any commercial value and in terms of promotion, this is valuable and we can learn from this.
Even bad ideas (like a pet rock) have had success because of the marketing, so yes we have a good product that will affect millions, so we must gain entry into the “marketplace” with very little money. Many have done so in the past and we must mirror thier success formula which I believe starts with a leader and a series of user friendly goals that everyone can feel a part of. Gene Simmons invented the “Kiss Army” and his goal was to have a rock band that could at least survive, and then further capitalize on thier success.
We need to help EVERYONE be aware that thier blood sugars fluctuate everyday, and some have YET to be diagnosed!!! If it does not affect you now, it will definitely do so later.
Keep up the great work
Love Always
The Anonymous Diabetic.
I haven’t… but I doubt they would do it.
Carol- Diabetes is not your fault. Diabetes is not a lack of character on your part. Is it a lack of Islet of Langerhans? ABSOLUTELY, for type 1’s and a screwy metabolic issue for t2’s.
Funny or not, I use humor and it helps me.
The fact that you’ve joined Tu Diabetes is a great first step! U GO GIRL!
hmmm… pharmacies? maybe a PSA “ad” at the end of the receipts, right after where they tell you that $1000 might be yours if you answer their survey questions
See for me, I have always been “out of the diabetes closet” mostly because of my diagnosis age (@ age 21, 2 years ago) & because I am a very open person. I wear my pump wherever it is easiest & feels most comfortable, and I prick whenever & wherever I am without hesitation. This actually makes me feel better about having diabetes because it unintentionally exposes it to others who don’t know about it. This in turn usually prompts questions and leads to me teaching others a little more about the disease. I don’t mind at all because I WANT more people to know about it. I remember not knowing what diabetes even really was before I was diagnosed and thinking back, I too would have probably been a little hesitant/curious about it if I saw someone “with it.”
I feel that the diabetics who are hesitant about expressing their disease stems from this lack of knowledge in society. Not that diabetes isn’t “accepted” in society, but it just isn’t fully understood. SO MANY people have no clue what, how, why, or anything about diabetes that anytime it is mentioned they stand confused, curious, or resistant. This prompts the shy diabetic to shy away even more because they are automatically feeling uncomfortable or even rejected, when really it is the unintentional attitude the general public gives off.
I think the best way to help ALL diabetics feel more comfortable living with the disease is to EDUCATE anyone & everyone. We have the POWER, even though we are the minority, because we are the ones with the knowledge. Knowledge is power. period. I know we can’t teach every single person in one day and expect it to be easy on all PWD’s tomorrow, but every little bit helps: you telling your neighbor about your story, your daughters friends coming over for a “diabetes day” party to learn about it in a fun way, or a huge movement that we all gather for (think #14KPWD on twitter even) just to teach a few more people each day. This way the world as a whole will begin to accept diabetes as something that it is… normal. I guess it sounds easier said than done, but like anything it just takes time & education to reveal the truth and empower others.
I am sure the first million people who wore glasses went through the same thing, right? smile