Thanks to Technology, We Never Have to Be Alone

The Internet has helped create an international diabetes community.

| Nov 1, 2011

If you've had diabetes for a number of years, chances are that you remember when there was no Internet access and no diabetes online community.  You had no way to look up information online and no instant connection to millions of others around the world living with diabetes.  Unless you had a friend nearby with diabetes, there was no one to understand how you felt when your blood sugar numbers were less than stellar, and no one to sympathize with how hard it can be to get your A1C down.

After my diagnosis, I felt so alone with my type 1 diabetes. I couldn't find a diabetes support group in my area, and it was easy to become depressed when everyone around me had a perfectly cooperative pancreas.

During this time, I attended an insulin pump seminar I learned about from my doctor.  I attended not only because of my interest in the pump, but also in order to find others like me and hear their experiences, fears, and hopes about the pump.  

I was able to sit at a large table in a beautiful hotel dining room and chat over breakfast with a number of people who had had diabetes for between three and 40 years.  It made me feel so normal.  A roomful of people with diabetes!  What on earth could be better?  We ate our meals without anyone asking "Are you really allowed to eat that?"  We traded stories about taking multiple daily injections. We spoke to people wearing pumps and even got to try on the infusion set to get an actual feel for what it's like to attach a pump.  In the ladies room, we proudly inserted the introducer needle on the infusion set without flinching. In fact, we laughed together, giggling like giddy teenagers trying on prom dresses.  I was fascinated by the pump, and although I didn't end up getting a pump due to financial issues, what I did get was connections with people like me. To me, that was worth all the money I had.

Years later, I discovered a "Diabetes and Mindfulness" class being offered at a local hospital at no cost.  I decided I had to attend.  The weather that wintry night in Chicago was awful, but I drove through a near blizzard just to connect with others living with diabetes.  I worried that it would be canceled, but, despite the weather, the room was filled with people with diabetes.  We bonded over our stories and learned about ways to cope with the daily stresses of living with diabetes.  Our instructor had diabetes and was fully aware of the toll a chronic illness can take on a person's mood and well-being.  We meditated together.  We talked about our fears and wishes for a cure, and we made new friends.  It was an evening I'll never forget.

Nowadays, practically everyone has a computer.  We can find information about diabetes easily and connect with people at the quick touch of a button.  I've discovered people with diabetes living around the world, people with whom I connect on a near daily basis through the Internet.

While I still believe that it's important to have a group that you can meet with in person, the diabetic online community has saved my sanity.  I'm happy to be able to focus on some of the blessings we have living with diabetes in this day and age.  Compared to the lonely diabetic I was for the first fifteen years of my diagnosis, today I know that I am truly very lucky.

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Categories: A1C, Computer, Diabetes, Diabetes, Diabetes Online Community, Diagnosis, Infusion Set, Internet/Online, Introducer Needle, Living with Diabetes, Online Resources, Pump, Type 1 Diabetes, Type 1 Issues

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Posted by Anonymous on 4 November 2011

This is so very true! I can't believe it but I know a few people that say the internet and online chatting are part of the downfall of our society (whatever that means) but I really don't see that. I see the availability of infinite amounts of information to to anyone that has a computer, and the ability to connect with people I know personally and people that are complete strangers but that share something in common. I can't imagine going back to the lonely world I as a diabetic of 21 years had!

Posted by rosiolady on 4 November 2011

I agree that a group meeting of, specifically, type 1 diabetics is a wonderful thing! I was able to attend the first-ever such meeting in my area, through my endocrinologist, and everyone there learned and shared such a lot--and I've been a type 1 for over 40 years and thought I pretty much knew it all... Most meetings for diabetics are made up of way more type 2s than type 1s, as is representative in the population, and most of the issues discussed are directed to the type 2s. I agree that the internet is a wonderful thing with just-endless information on it. You do need to sort through it though, for what really applies to you and what makes sense, in my opinion.

Posted by TracyK on 16 November 2011

Hi Meagan and fellow type 1's. It's great to get support when you're dealing with a chronic illness but my unfortunate experience in the last few years trying to get that support seems to be more difficult. I am not sure why. I have had type 1 for over 45 years. I am both lucky in many ways genetically but I also work diligently to try to maintain that luck. I passed out from low blood sugars for almost 45 years. No one seemed to know why. Other people with diabetes in the support groups seemed to get upset when I would attend and explain my situation. It seemed like that is part of why I did not go too far with many things in life. I now have a diabetic alert dog to help me. My reality is that I have had to give up having children, a husband, school, family and work to manage my diabetes so I do not pass out. The dog helps but it is so isolating and depressing that I cannot seem to do as much as some other people with the disease in spite of many tries and many ways of trying to do things to do better. I know I am lucky. I do not have massive complications. It does seem like the toll the disease takes psychologically is tough especially without much support. I am only 48 and hope things will get better. Yes, I've tried the obvious things like an insulin pump for 9 years but developed a staph infection and passed out regularly on it. I tried a continuous glucose monitor twice and neither time was it either effective nor did it provide information that medical professionals could help me with. I tried Tai Chi, Qi Gong, exercise in general and raising my A1C's to no avail. It has been very tough I just hope that people in general as well as other people with diabetes realize that as a bright, motivated, responsible individual I have tried everything out there including research programs and classes as well as counseling and medication to try to help but so far the only things that have worked are getting older (I went through menopause more than 1 1//2 years ago), being alone to reduce stress and having a service dog who alerts me as my blood sugar is rising and falling. I wish there was another way but at this point it may just make sense for me to realize that no one can change it and I just have to do the best I can, as I always have, and hope that in the future things will get even better for all people with not just this disease but anyone suffering. At least I can make people feel better that they have not experienced it the way I have! :)

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