Your thoughts on connecting with others with diabetes online

Community
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Saturday Nov. 7, I will have the honor of speaking in a panel titled "Connecting Online" along with Jeff Hitchcock, Kerri Morrone Sparling, Ellen Ullman and Scott Strumello at the Diabetes 2.0 event hosted by the Diabetes Research Institute.

Here are a few questions that I would love to hear your thoughts about, to share with the attendees:
>> What needs are filled by the online connection with others touched by diabetes?
>> Has being online helped you cope with living with diabetes?
>> Has it resulted in improvement in your care?
>> What has surprised you the most about the online community you frequent most often?
>> What are three things someone should walk away knowing about the online world?
>> Anything else you’d like to share in terms of connecting with others with diabetes online?

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Manny: An excellent opprtunity to educate the world!
>> What needs are filled by the online connection with others touched by diabetes?
We learn from each other and we indirectly contribute to the sum total of knowledge about diabetes.
>> Has being online helped you cope with living with diabetes?
Yes, I think we all learn from each other, and it is tremendously encouraging to find out that you are not the only one struggling with a particular problem.
>> Has it resulted in improvement in your care?
The online communication has taught me a number of things I would never have learned otherwise. Where else would you find out what the carb content is of halloween candies?
>> What has surprised you the most about the online community you frequent most often?
The diversity of sophistication among the participants. Some have very basic opinions or questions, others offer highly expert opinions and advice.
>> What are three things someone should walk away knowing about the online world?
That everybody in the world can and will read what you write;that you should take every opinion or advice with a grain of salt and that anything you can tell or report about your experience with diabetes will eventually help mankind.
>> Anything else you’d like to share in terms of connecting with others with diabetes online?
I find it exciting that the professional medical society is beginning to learn that the diabetes online communities collectively possess a huge amount of information that so far has not been accessible, and that some of this information will be enormouslky helpful in finding a cure.

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What he said! Great responses, Olaf.

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I think that one of the best needs that I had fulfilled by the online community was that I had been diagnosed with Type 1 at the age of 45. Most of the people from the online community have years of experience by this time while it was all quite new to me. I don’t always even reply to anything when I go online but reading discussions have filled me with alot of knowledge only those who have been there could supply. I was initially in depression. It took three months to properly diagnose the problem as I had originally been diagnosed as Type 2. During this time I lost 30 pounds and had gone from a size 11 to a 4. My Dr suggested therapy but I wasn’t ready to talk about it. Being online, I could read without anybody questioning me about how I felt and I came to realize that it wasn’t the end of the world. The upbeat conversations helped so much. I learned things about Type 1 that no one had told me. All the classes for newly diagnosed diabetics of my age are geared to Type 2 and were relatively useless. I learned about pumps and am now on one. My A1C is quite acceptable. I also came to learn that tudiabetes is the best one for me. What surprised me was how upbeat everyone was, how much help they offered to each other and how much better I feel anytime I have felt down after reading some of the conversations. The online world gives you the strength to cope, to move on in life with more courage and joy and to better manage your levels so you feel better about everything. I believe that doctors should refer patients newly diagnosed to these communities so they can learn the essentials of dealing with the diagnosis and the best ways to go on with their lives. It is all here!

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Needs: It fills a communication void. Sometimes you just want to vent about some aspect of the disease and only other people with the condition can fully relate to what you’re trying to say.

Coping: There’s very little that can help you cope living with it. It’s you against it. The online community only helps you to understand that you’re not alone. No one can help you cope.

Improvement? Not really. I’m going to do what I do with or without the community.

Suprises? Didn’t realize there were so many devices out there to control diabetes. Everybody’s using something different.Also, no matter how well you control your diabetes, there’s always someone who does it better. So don’t get cocky because you test 4 times a day because there’s someone out there who does it 5 times a day. And don’t get cocky because your A1C is 6.2 because somebody else’s is 6.1.

Things: 1) Diabetics are desperate for knowledge. They like learning from other diabetics. 2) Diabetics love sharing their knowledge with others.

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Has it resulted in improvement in your care?
If this question alone could be answered by a lot of folk here, perhaps the professional community could wake up to social networking as being equal (in necessity to the new diabetic) to “support groups”.
Improvement in care comes from sharing knowledge, feelings (reduces stress), & questions. Improvement in care comes from being able to say you’re angry to others who understand, because then you can move on to the focus required in every day testing, researching your own body’s reactions, and reading/learning more.
People who are on social networking are quick to respond to others’ needs.
They’re up-to-date and ready to share the latest information.
Improvement in care comes from knowing new research outcomes fast. The fastest are online social networks.
Printed monthly publications take too long; books dated 2002 are behind the latest standards.
The online world has scientists, professionals, and everyday up-to-date diabetic people conversing. That can only be GOOD!

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I wouldn’t call it a curse but it sure does suck at times. Online connection is really nice and I love the fact that if you have a problem or just want to vent about something there is usually someone who has dealt with it in the past or atleast can relate to your problem. It’s also nice to share your success stories aswell.

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Well said Olaf! I agree.
I have learned tremendous amounts of information and experiences in this community that have empowered me to have confidence in the care I’m getting or to seek out new treatments/labs.

It is accessible whenever I need support, have questions, need information, or a good laugh from others that are battling the same condition.

My brother suffered with T1 diabetes for years and died in 2007 then my condition showed up in 2008. I wish he and I had this network back then to learn from. I am grateful for this community everyday!

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Question #1- Mostly having someone who understands about your disease.

Question #2- Yes, more informed about care and other ways of living with it.

Question #3- Yes, I’m reminded daily that I have this serious disease and taking my meds on time is lifesaving.
Let alone make the right choices on other meds as well and being cautious about side effects.

Question #4- The amount of friends and support. Unbelievable!

Question #5- -The heavy consumption of knowledge worldwide.

  • The ability to communicate.
    -The ambassadorship you can put on another person. To show leadership so that they can lead as well and
    for what you leave behind they can go on as well.

Question #6- This site online has improved my writings as well. Bringing everything thru my fingers to write deep has me
to believe that I can write a book. So much support from this site is incredible.

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I am hoping that it attached

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Can’t wait to meet you there Manny, right in my backyard.
Needs - I can share and speak with others that actually know what I’m going through.
Helped - Absolutely helped. I don’t feel like I’m the only one dealing with it now.
Improvement - Yes
Surprise - how nice and caring everybody is.
3 things - Family, Friends, and caring is all available
Anything else? - Online communities need to join together and find something in common and work together to reach certain goals a little better.

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Manny,
How exciting to here that you will be participating at the Diabetes 2 event on Dec 7. You asked about our thoughts that we would love to share with the attendees. Here it goes.

I go online every day, I sign on as if I was reading a morning newpaper. First stop, Six Until Me. Keri Sparling. Keri’s blogs and stories made me realize that I am not the only person out here with diabetes. As I read her blog I find myself laughing when she writes about little slick, sly things that PWD occcasionally do. And cry when she writes about challenges of getting pregnant or getting a box of juice for a hypo in an airport. I recognize myself in her stories, finding that I feel the same way. I thought it was only me that juggled and struggled with this diabetic life.

Next stop, Diabetesmine. Amy writes of information of diabetes, i.e. new books about diabetes, guest writers, new diabetic gadgets, diabetes bloggers, Pharma. She does a great job keeping you up to dates about online diabetes sites. It is exciting when her blogs ruffle my feathers and I write comments and put my two cents in the conversations.

Home base is Tu-diabetes. I love the creative ways how PWD express their views on the site. Videos, art work, music expression. It is always exciting to sign on and check out what is going on. Make Sense of Diabetes Videos, Synchronized Glucose Testing and Events of World Diabetes. But my favorite is how PWD have a great opportunity to tell their story. Hi, my name is … and I have had diabetes for 37 years. This type of blogs, conversations is my daily therapy to deal with Diabetes.

It allows me to talk about what is going on in my life with someone else that truly understands what PWD go thru everyday. People that do not have diabetes just don’t get it. Doctors and CDE will never have the time to talk about it during our appointments. Tu-Diabetes is a place where I can express my feelings with others like me. Online encourages me, to take care better care of myself and be a survivor.

So Manny, you asked:

What needs are filled by the online connections with others touched by diabetes?
Answer: It is my online diabetes therapy. Just talking about it, helps. I am not alone.

Has being online helped you cope with living with diabetes?
Answer: Yes, it makes me realize, If I take care of myself, I will be able to stay out of the complication cycle.

Has it resulted in improvement in my care?
Answer: Hell ya! I walk into my Dr office, I am better prepared and get the care that I expect!

What has surprised you the most about the oneline community you frequent most often?
Answer: 1. People with diabetes have the same similar fears, struggles as me. 2. That there are other Type 1 diabetics that are surviving 30, 40, 50 years. They are thriving individuals without complications. My prior self image was getting older and one day I would have an amputated foot or leg. Or asking my self, "Will I die tomorrow? Screw that Sh%#!

What are three things someone should walk away knowing about the online world?
Answer: 1. ONLINE IS NOT YOUR DR. OR CDE! 2. Online will give you a feeling of community, motivate your selfcare, remind you to take care of yourself. 3. It gives you a sense of reflection. Gosh! I feel the same way.

Is there anything else you’d like to share in terms of connecting with others with diabetes online?
Answer: Sign on, TEST, Read Daily, TEST, Learn, TEST, Share and laugh with the community of PWD, TEST. And one more thing TEST!

Manny thanks so much for your conversations.

P.S. Manny please tell Dr. Jay Skyler at the DRI event Hi!. He was my Endo 30 years ago when I was pregnanet. Tell him that I am still kicking. Also tell him that I am going to start prayer campaign online. Lord, please help Dr. Skylar and other scientist at DRI find a cure.

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I am a RN and probably have learned more on this website in the past couple of months then I have in 13+ yrs of nursing! I have found supportful, caring people that not only help inform you, encourage you, help look out for you, but also understand what you are going through. Whether you are T1 or T2 you find acceptance. I, personally, have improved my care. I have adjusted my meter parameters as well as my thinking on what I should accept as a high and what I should aim for, I have started testing more and as a result have better numbers. Anything else I could say has probably been said already. I can not think of a negative experience I have had here.

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Thanks for the opportunity…
>> What needs are filled by the online connection with others touched by diabetes? There is an open exchange of ideas. I do not talk much about diabetes with coworkers or friends. There is freedom in annonymity.
>> Has being online helped you cope with living with diabetes? Yes, I have asked a lot of questions I would feel silly asking my doctor.
>> Has it resulted in improvement in your care? Yes. I have learned what has and hasn’t worked for others and have felt empowered to start a conversation with my doctor.
>> What has surprised you the most about the online community you frequent most often? Hmm? The ignorance of some. People who have lived with diabetes for years and do not understand some very basic concepts.
>> What are three things someone should walk away knowing about the online world? There are a lot of people with worse control and care than yourself. As much as you think you know there is one more tidbit out there. Not everyone knows what they are talking about.
>> Anything else you’d like to share in terms of connecting with others with diabetes online?

Thank you, again for this opportunity to participate.

md

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>> What needs are filled by the online connection with others touched by diabetes?
I don’t know anybody else w/ diabetes, being online has opened up a whole world of other people to me
>> Has being online helped you cope with living with diabetes?
Yes, meeting others with this disease who know exactly what I’m going thru, who can offer support and advice is a source of unequaled value.
>> Has it resulted in improvement in your care?
I’m much better informed than I would have been on my own, and I’m pretty sure I wouldn’t have started pumping if I hadn’t joined an online community
>> What has surprised you the most about the online community you frequent most often?
I’m not as active as I used to be, but the support and true caring of others
>> What are three things someone should walk away knowing about the online world?

  1. they’re not alone w/ their condition, 2. others really do care about helping and supporting them, and 3. there are many resources online for all sorts of needs so do a search and odds are you’ll find it
    >> Anything else you’d like to share in terms of connecting with others with diabetes online?
    It’s a great way to connect with others if you like, or just read posts for information. You can find a social network type site like this one, or a message board site and jump in or just read posts in a more anonymous fashion. You don’t have to be alone anymore, like I felt when I was diagnosed and for quite a few years after until I did an online search one evening. There is a wealth of information online, too. As others have said, you must be careful of your source, but when you find a reliable source it can be an invaluable tool in managing your Diabetes and the challenges it presents.

This is a great question with some great replies! Thanks Manny!