The math is easy: in the US, there are 25 million people with diabetes, worldwide the number exceeds 250 million. Yet, combining all participants in the summit, we estimated we are reaching out to a total of MAYBE one million folks touched by diabetes. So, there’s a bunch of folks that are still sitting inside the “diabetes closet.”
Those of us who are out there, in the open, about our life with diabetes… my question to you all is, how do we help others to come out of the diabetes closet?
As Kelly Kunik was telling me, this is something that needs to be done by each person in their own terms, but what would be your advice as to how to overcome the fears or concerns associated with sharing the fact that you have diabetes with others.
This is tough to answer. Until recently I did not communicate with many diabetics at all. (5 years as a type 1.5) I only wanted to be normal. After reading many posts and emails and seeing the care and support a lot of diabetics have provided to each other, I have come to the conclusion that the online diabetic community is a valuable tool in helping people deal with this disease. I certainly wished I had been more involved earlier as there have been a few times I could have used the support myself.
So with that said I think bringing the awareness to all diabetics that the community is there to help support them and help them deal with this can best be done by the doctors and specialist that see these people from time to time. The goal should be to reach the doctors, so they can properly communicate to the people that these great people are there for support.
I think it is a bit like AA you can’t help until they want help. A site like this where you don’t have to id yourself is a good first step for many. I think educators and docs need to start telling people maybe with a handout or card about groups like this. But for many their health is thier business and they don’t want anyone to know.
I use a high profile diabetes center in Seattle and they have never told me about any such group. When I told them, it seemed like they knew about us but weren’t telling anyone. I think those who don’t live with it when they go home at night forget we need a community of support. When I am on this site I feel like it is the small town I grew up in. Everyone knows what is going on and is willing to help if you ask. (Yes it was a very small town) I spent 29.5 years feeling alone and desperate because of it. My attitude has improved along with my a1c in the 3 months I have been coming here.
So maybe the question is how do we spread the word that you don’t have to be alone. Docs and CDE’s can help but they have to understand. Has anyone ever done a study of pre and post a1c before and after a support group? Sounds like a job for a grad student who needs to do a study. First three months for me equaled an improvement of 1.2.
I wouldn’t say people are sitting inside the diabetes closet, exactly. They are simply not using the diabetes online community. Many are online searching for help, but they aren’t linking to social networks. They are linking to other types of info or news, as demonstrated by the search results you get if you type diabetes-related search terms such as “lower A1C.”
So, the question is, how to get people who are already online about diabetes to visit and participate in social networking?
As for non-plugged in life, I’m a firm believer in the widespread use of the diabetes “secret handshake!” This takes many forms. Pump bumps. Open and public use of blood glucose testing supplies. Asking about carb counts in restaurants.
It can be difficult for others to actually SEE us living with diabetes. Even celebs with diabetes don’t necessarily walk around with bling on their insulin pumps or test their blood sugars on camera. If only Oprah would have someone test his or her blood sugar during a segment …
And, there’s the numbers gap of type 1 and type 2. Many PWDs type 1 constantly have some sort of diabetes supply on or around their person, many PWDs type 2 do not (87% of PWDs type 2 on insulin never use insulin outside the home, for example, and if only testing fasting blood sugars, are likely to only use a meter at home). Of course, with all the blame that PWDs type 2 receive in media and popular culture, I’m unsurprised that fewer are as vocal or activist as PWDs type 1.
I know there has been research on online support groups for illnesses and improved patient disease management, but I’m not sure of any diabetes specific ones.
I usually keep my pump out in the open and get all sorts of questions from people with and without diabetes. I think it is my own little way of helping some diabetics get out of the closet and open up and also teach people about the disease.
It is sometimes hard to open up about diabetes because there are so many misconceptions and people judge you because they don’t know any better. I think if I wasn’t forced out of the closet as a child, my mom was a science teacher and usually there was a lesson in her classroom featuring me, it would be really hard to come out.
Actually I do think there is such a thing as a diabetes closet: out of frustration (with ignorance), embarrassment (because of the stigma associated with it) or whatever it may be, lots of people are not open about their diabetes with others.
There is a thought. Has Oprah ever done a Diabetes episode? If not should she be asked if they would have an interest. I don’t think it would be hard to feel 44 minutes with information. And the free advertising for the diabetes mags, support groups, and etc… It could help a lot of people. THere are some who won’t move without her ok.
The other thought I had is that many T2’s are older and less likely to join an online group. Many older people have a distrust of anything on-line. And even the small amount of info required to join the site could be off putting.
I’ve been a member of a support group since close to day one. I was diagnosed 9/6/96 and joined a support group within a month of diagnosis. I’m now in a women’s type 1 group and I can’t even express how much it means to be with my own kind. My family is supportive, but truly has no idea what it takes to live with diabetes on a daily basis. I’m very open about my condition, I test in public, I answer questions when someone asks me when they either see my meter or my pump. I’ve never hidden the diabetes. I encourage all diabetics to seek out support groups, especially a group you can attend in person. Just knowing you are not the only one living with this disease, and to find out how to tackle tough problems, or even just to vent with the anger and depression which accompanies diabetes.
I’m continually amazed at the ignorance which surrounds diabetes and I do my best to let people know I didn’t develop diabetes because of something I ate, insulin isn’t a cure but a treatment, and yes, I can eat sugar. I have my kids in studies for diabetes research also, but thankfully, they d not have diabetes. My fingers stay crossed they never develop it, since I was old, 28 when I was diagnosed.
My HbA1c since joining has gone from 8.7 to 7.0 to 6.3, since November! With no adverse blood sugar episodes. Maybe 1-2 lows a week. TuDiabetes and other members have helped me a lot!
I think we all have to share with our health providers and people we know how much the online community has helped, and pass the word!
Manny,
We do it by our everyday living, bringing up what our numbers are to those we get together with. We, ourselves, help get them comfortable with talking about diabetes. Each of us, of course, has to be comfortable first with sharing.
I’ve been driving seniors to their doctor appointments. I’ve pulled out my tester in doctors’ waiting rooms as i wait for these folks, I’ve tested when I needed to, and popped a couple of my half-Dex4. Ever see a conversation get started in a doctor’s waiting room? WOW! What a place for testers, for discussions, for putting little nuggets into people’s brains. People WANT to talk about it and WANT TO know about it.
BUT when these numbers are tossed around about how many people there are with diabetes, those numbers are extrapolations. These numbers are not necessarily DIAGNOSED Type 1s or Type 2s who know they have diabetes, or people who KNOW they have prediabetes. Let’s remember that there is still a problem with being DIAGNOSED! Life insurance and medical insurance premiums still can rise. NO insurance can be a problem! It’s been that if employers found out, you risk something. Doctors used to protect the person by not diagnosing. Now they, too, have to get with the flow. They have to follow the newer recommendations.
Now that the A1c is being recommended for diagnosing prediabetes and Type 1 diabetes, let’s hope the GP out there will add it to an annual physical exam, the annual employee physical (if it exists) will include it, and the doctor will refer people to specialists who will start early treatment. If we can get universal health care insurance, we will not need to have actual diagnosis put off, it will not be the scourge that it was, and maybe we’ll even get some REAL numbers of what we’re dealing with.
Sorry, I wasn’t clear. I do agree that many people don’t acknowledge to others (or even to themselves) that they have diabetes. (Here’s an article about some hows and whys of revealing you live with diabetes).
I was trying to make the distinction between the people with diabetes or those interested in diabetes who are online, just not necessarily on social networks.
We need a research study to assess these kind of results so we have hard science proof that social networking works! Until then, not sure how willing health professionals will be to encourage their patients to go online.
I think that the best thing that we diabetics can do to help others “come out” of the diabetes closet is to be as open as possible about our own self care and to keep reminding people that there is no shame in being diabetic. When I was diagnosed about seven years ago, I didn’t want anyone to know except close friends and family. I didn’t want to risk the judgment from others or to explain anything about all the new things about me that were different from people who are “normal.” When I took a new job about 18 months ago, I was afraid that my potential employer would find out that I have diabetes and decide not to hire me – or else think that I am “fragile.”
Learning from other diabetics – reading about and seeing them deal with their self care openly – made me “braver” to start being more open about my diabetes. Now I wear my OmniPod on my sleeve (well, technically on my arm) for all to see and consider it a privilege to educate people when they ask about it. I also always volunteer to be a sounding board for anyone recently diagnosed who’s interested.
In the OmniPod group, someone recently posted a link to a TV story about an athlete with Type 1 who was about to compete in a triathlon. There was his OmniPod, big as life. The story was well done, straightforward and accurate. It made diabetes feel more “normal.” That’s the kind of thing that encourages others to be more open about being diabetic.
I love the Oprah idea! If anyone can make diabetes seem “normal” and maybe even a little bit cool, she’s the one.
Diabetes coming out of the closet. I agree with Kelly, it is something that needs to be done by each person on their own terms. I do believe if the media would’t make DIABETES sound bad it would be a lot easier to deal with and accept. If we could have a team on call for newly dx’d people to call as soon as they are dx’d that would be awesome, reading about someone going through the same thing as you is awesome but to put a voice along with it…AWESOME. I believe it all starts with the Doc’s office. You can’t hold a childs hand and let go. In other words. If you have a care team that’s proactive in your care even if your not says a lot. The physician’s need to change their protocol. They needs to Stop letting Patients go after diagnoses. Call them once a week, let them ask questions and get them involoved with a local pwd or family member.
I could go on and on but that’s a little food for thought.
I think that is a great idea. Oprah is always touching on weight and health issues… There may be 25 million diabetics but I suspect a fair number of the T2’s are unaware of the of serious implications of their diagnosis. She could also alert the many insulin resistant folks who have not technically been diagnosed. Oprah could be a fabulous eye opener.
I absolutely think there is a group of closet diabetics. Let me explain to you my experience. I was diagnosed at 13 months of age. The earliest case on file in Maryland at that time. I grew up a diabetic going to public and private schools. I was ridiculed and made fun of for being different. By the time I reached middle school and started to notice girls I was absolutely terrified to be open about my diabetes. This of course progressed through highschool. There was no one like me in the whole school. My A1cs suffered and my readings per day were maybe 1 - 2 at best. I wanted nothing to do with it. When I started dating heavily I would eventually tell my girlfriends about my issue. They didnt seem to care but I always felt like they did. When I would have a low or couldnt stop peeing from a high I became very frustrated. I did have one girl who actually told me that she hated the way I ate in public and it made her feel like a “fat pig.” I dumped her later that night. I met my new wife in 2007 and she has not only supported me but saved my life and rescued me from 2 horrible seizures. She then set out to make sure I was healthier by finding the omni pod. The pod is a miracle. I love it and love her. She has opened my eyes and made me believe that its ok to be diabetic and that someone “like me” can get anyone I want, because she was my dream girl and she loves me for who I am.
We need to find a way to get over the pervasive notion that ‘it’s their own fault’, especially in regard to Type II diabetes.
I think many people are afraid to come out because of the stigma attached to diabetes in recent ‘health news’ articles that hammer home the point ‘obesity leads to diabetes, obesity leads to diabetes, obesity leads to diabetes’ going on and on and on like a drum.
It’s come to the point where people think a) all obese people are or will become diabetic b) diabetes is caused by eating bad food.
Therefore people think that diabetics did it to themselves. Even some diabetics believe they did it to themselves.
So we need an ‘act up’ kind of approach in which we demand funding to find a cure, acknowledge responsibility for our own health, and get the message out that ANYONE, obese or not, young or old, is at risk to acquire diabetes.
In other words, be militant. Don’t drag people out of the closet but insist on correcting facts. Eating at McDonald’s does not cause diabetes. Establish for diabetics and non-diabetics alike that the causes of diabetes are unclear, that treatment is available, that it’s not caused by ignorance - that it’s a DISEASE - not a stigmata.
Talk about misconceptions (aka ignorance), My first employer, an full-blood Italian lady who owned the pizza place I delivered for, was sure if I just wore garlic like a necklace my diabetes would go away. ;^)
I’ve been an open type 1 since my diagnosis in 1957 but I can only remember meeting one or two other diabetics out in public.
