My Two Lives With Diabetes

A journey from diagnosis to today of a 40+ year person with diabetes.

By Scott K. Scolnick, M.Ed.

I feel like I have lived two different lives with diabetes. The beginning part was private with little to no resources.  The next and current one is where I use social media, local resources, diabetes conferences for people living with diabetes, and the diabetes on line community (DOC).

When I was diagnosed in 1975, I was the first person in my family to have diabetes. At least the first my family knew about.  Back then diabetes was a “you don’t talk about this kind of thing” condition.   My immediate family certainly didn’t talk to our extended family about it, and the only friend who knew was my best friend.  And even we didn’t talk about it much.  I was 15 and my family and I lived in this isolated world of our new life with diabetes.

I was about to be a sophomore in high school and my world had changed in ways I couldn’t even imagine.  All I knew was my doctors had told me, and that wasn’t much.  I felt lost in a new mythical land and I had no direction or idea where to go to find any answers.  I wasn’t even sure what question to ask.

Now, it would have been one thing if this time in my life was a few months or even a year or so.  But it wasn’t!  This went on for years and years.  To add even more to this story, my father was a medical doctor, so one would think I should have access to resources.  I would have, but there really weren’t any.

There certainly were not all the TV ads about new diabetes medications or multiple magazines addressing anything to do with it. I found out later there were summer camps for kids with diabetes, but I sure didn’t know about them.  I still feel robbed of the whole diabetes camp experience.  I, like so many others with diabetes back in those days, lived a private almost secretive diabetes side of our lives.  I certainly didn’t tell girls I was dating until they got to be serious relationships.

The second part of my life with diabetes happened when I was hired by an insulin pump company in 2000. I have worked in the diabetes industry in a variety of roles for several different companies ever since.  I appreciate how this change in profession launched me head first into the world of not only living with diabetes 24/7/365 but also working in the field.  I have been interacting with health care professionals, people living with diabetes and organizations who serve people living with diabetes.

As I found myself in this new and very foreign world, I made a conscience decision to embrace this opportunity.  I am acutely aware I could have made another decision, but embracing my new role has allowed me to develop the closest friends and relationships I have had outside my immediate family.

We do not have a choice about having diabetes: however, we have a choice about how we choose to manage it.  Embracing the diabetes resources and world has allowed me to live a healthier and happier life.  Don’t get me wrong, I have my bad times and ever days, but now, I have a support system who gets it and is there to help me as I am there to help them.

I know my life is unlike most of us with diabetes, but we all have resources at our disposal. The Diabetes Online Community (DOC) has a vast number of website, virtual support groups, blogs and even conferences where people with diabetes, PWDs, meet.  It’s up to us to take the first step.

Insanity is doing the same thing over and over again expecting a different result.  Regarding how we decide to manage our diabetes, if something is not working, stop doing it all the while trying something different.  Something different can be getting involved with the Diabetes Online Community.  The American Diabetes Association worked with several key people in the DOC to develop this list.  Just click on this link to see some of what is available.

We all need a starting point.  This could be yours!