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URL:   http://www.diabetesselfmanagement.com/blog/scott-coulter/sharing-diabetes-with-others-part-1/print/

Sharing Diabetes With Others (Part 1)

Scott Coulter

April 18, 2013

Note: This will be a three-part series on how to share your experiences and condition with those around you, along with a discussion of some of the ways living with diabetes can affect self-image.

When I was 16, I went to a summer camp for teens with diabetes. My mother was the one who found out about it, and while I wasn’t resisting the idea with too much force, my enthusiasm for the camp was lukewarm at best. I was already feeling a little “weird” about having a chronic disease the rest of my life, and I thought that going to a camp devoted to it would only make me feel weirder.

Nevertheless, I agreed to sign up. The weeks leading up to the first day of camp were filled with low-grade anxiety as I imagined a camp full of weird-looking “diabetics” being kept in sterile hospital-type rooms to avoid damage. I imagined the activities would be on the completely safe and boring side — shuffleboard in the afternoon, followed by quilting and then an exciting game of bingo before being shuffled off to bed by 9. And I imagined that we would have nurses, doctors, and other health professionals peering over our shoulders at all times, panicking if one of us coughed.

The day finally arrived for camp to begin. It was an outdoor camp, up in the mountains of Colorado. We packed my bags, made sure I had medicines for the week, and drove the family station wagon up the winding mountain roads to our destination. I arrived, checked in, and was shown to my cabin, which I would be sharing with seven other boys my own age. At this point, I was at the height of my “feeling weird” stage and would have gladly LEAPED back into the car and gone back home. Nevertheless, I stayed.

My mother left, and I began meeting my cabinmates. In the afternoon, the camp organized an orientation for the 200 or so campers. We gathered outside and were introduced to the camp counselors, the medical staff, and all of our fellow campers. Afterward, we all went to lunch. And it was at this moment that my perspective began to shift in a way I could never have predicted.

“Lunch” for most people means eating. That’s it. Lunch is food, and minimal thought is given to its content beyond how much food is needed to feel “full.” Obviously, for someone with diabetes, lunch means a whole lot more. Lunch means monitoring first, calculating the carbs, matching the insulin to the meal, adding or subtracting units depending on the result of the premeal blood glucose level, eating, and then monitoring after the meal to see if all those calculations were correct. On top of that, we might add or subtract to compensate for activity we just engaged in, or activity we plan on after the meal.

I had only been living with diabetes for a few years at the time, but already these constant calculations were a part of my worldview in a deeply ingrained way. I could no longer look at food as merely food. Everything I saw represented a number, and an accompanying set of calculations. And I was alone in that among my friends. They were incredibly supportive, concerned, and understanding when it came to my condition, but there was no way they could really understand what it was like to live with it. I was the “diabetic” of the group, and it was something that made me a little different. I was never shunned because of it, but the fact remained that before every meal with them, I would go off to the bathroom and perform my little ritual alone, while my friends remained blissfully unaware of the food they were preparing to consume.

That was not the case at camp. As if performing a choreographed dance, all 200 of us took out our meters. Hundreds of little “clicks” could be heard as we all pierced our fingertips and drew blood. Hundreds of little “beeps” went off signaling hundreds of blood glucose results. Hundreds of syringes came out, drawing insulin from hundreds of bottles. And in our heads, hundreds of calculations were being made as we prepared for our meal. It was one of the watershed moments of my life. For the first time since hearing my diagnosis, I felt completely, utterly “normal”. There was no explaining that had to be done, no running off to the bathroom. No one wondered what we were injecting.

At the camp, we all spoke a common language, the language of diabetes. “A1C” was a term as ubiquitous as “air,” carbohydrate exchange calculations were as common as simple math, and none of us were “the diabetic” of our group. Far from feeling weirder than before, I realized that there were hundreds, thousands, even millions of people just like me, living with the same condition, the same worldview, the same challenges.

The rest of that week was one of the best of my life. I made new friends, I learned new skills, and I returned home with the knowledge that my condition was shared by millions of people across the world. I also came home with the realization that diabetes does cause social challenges. And those challenges need to be addressed wisely.



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