Last week, I was at an event at Novo Nordisk in New Jersey, attending an event (more on that later) and participating in a discussion about what it's like to grow up with diabetes, and more specifically, what our actual diagnosis moments were like.
I had a chance to talk with a few kids with diabetes (much younger than me - we're talking like the 5 - 10 year old range) and their parents, separately, and what amazes me is how much information is available to the newly diagnosed these days.
When I was diagnosed (cue stories about walking uphill both ways to get to the endo's office), there weren't any websites dedicated to the parents of children with diabetes. There weren't blogs about all kinds of different grown ups who were living with diabetes, offering my parents a glimpse into a life after diagnosis. The books about diabetes were limited to those of the cooking variety, and mostly dealing with diabetes that was controlled by diet and exercise. Google wasn't an information option, and the only resources we had were people who had older aunts and uncles who had "a touch of the sugar."
When the diagnosis call came in for my parents, we barely knew what diabetes was, never mind how to live with it.
I listened as the kids in this session talked about what kind of information their doctors gave them upon diagnosis. "We got a book? And we went home with needles but then I got my pump so we don't use the needles anymore."
These kids had a very different diagnosis experience than I did. Most were on pumps within a year of their diagnosis, and web resources kept their parents tuned in to the latest diabetes developments and research. They were in and out of the hospital within two or three days time, compared to my two 12-day hospital stays back in 1986.
For some of you guys who are reading this, you may have been diagnosed a while ago, like me. Or you might be newer to the diabetes experience, or handing this disease on behalf of a loved one. What information would you have wanted upon diagnosis? How has the diabetes blogosphere changed the way we all feel about our diabetes? I thought about the resources available to my mom and dad. Like that bright red book we received from Joslin that had all the meal management tools available in the mid-80's, and that chapter in the back about complications and blood sugar goals. I wonder how different my care would have been, and my life as a result, if I had received more information about connecting with other diabetics, and forming a community of emotional support for myself.
So much has changed since I sat in the endocrinologist's office at Joslin back in the day.
"How many of you guys had to practice injections on an orange before you tried the needle on yourself?" I asked the room of kids, and they looked at me blankly.
"An orange?" a sweet little five year old girl asked. "Nah, we used fake skin."
Fake skin. Well I'll be.