Coming Out of the Wilderness

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

I am a veteran of resharpened needles and glass syringes that you had to boil up before use (well my Mum did this), of urine testing and one shot of long-acting pork insulin per day and no ability to treat a really high blood sugar level-you just had to wait for it to go down.

As primitive as these things sound, there was a worse privation that those of us diagnosed before the late 1990s had to live with and that was the lack of internet.  Yeah, yeah there’s all this stuff about the internet being the scourge of society, robbing us of real relationships and turning us into porn-addicted couch potatoes and there may be truth in that for some but for this type 1 diabetic, the internet is freakin’ awesome. It really has transformed my experience of diabetes.

Before the internet, diabetes information was mediated by “experts” who had never  lived a day with diabetes in their lives.  Nearly everything was written as though you were a type 2 of about 70 years of age and with the same number of IQ points and the assumption was that you could spend your life testing your bsl, weighing food and looking at your feet.  “Real people” living with diabetes came in 2 varieties, elite sportsmen (really don’t recall women) or those with the most extreme combination of complications who gave grim warnings about wishing they’d listened to their doctors and taken more care of their health.  Oh and Mary Tyler-Moore was her very own variety!

On a quiet day at work back in the 90s I started googling diabetes and stumbled across a black background emblazoned with “bored? frustrated? got type 1 diabetes? Me too!”  Hell yeah that was me, I could have kissed the computer!. As I explored the site there were real, young adults with type 1 diabetes and they were just like me. It really isn’t possible to keep your sugars between 4 and 8 all the time despite what the experts tell you and this much touted “normal life” isn’t all that normal!  I knew that and finally here were people to confirm and validate my experience, hallelujah!  The sheer joy of ending almost 30 years in the diabetes wilderness feeling inadequate and disempowered is indescribable.  It’s easy to take all that for granted now that there are 100s of websites, discussion forums and Facebook groups devoted to diabetes but I’ll never forget the sheer joy of connecting with people like me for the first time. I immersed myself in the RealityCheck, later the Type 1 Diabetes Network community.

Hitting the big 40, I thought the “young adult” with diabetes tag was a bit of a stretch so I moved on from having an official role with the Type 1 Diabetes Network, leaving it in capable, younger hands.  After being on the sidelines for a few years, Kate and I were itching to get back behind the computer to stir up some hornets nests and participate in the type 1 online community again. So here we are!

So here’s to sharing some of the highs and lows of diabetes. Have you had a lightbulb moment on the internet? Share it with us!

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