Monday, July 16, 2012
Trying to figure out "diabetes advocacy" to the public
Some of the blogs that I read seem to be mainly focused on diabetes advocacy (sometimes whining?). It's about telling the world about what it's like to be diabetic. I'm not entirely sure why this matters, the readers are probably mostly people with diabetes.
As a 27 year diabetic, I don't have much interest in the plight of people with other diseases. I'm sympathetic, but, I'm not driven to learn everything I can about them. I guess I'm self-centered, and I have a limited amount of time for research. If someone is shouting it from the rooftop, how hard it is to have a particular disease, I feel kind of perplexed. What, specifically, do they want ME to DO?
As diabetics (or People With Diabetes if you like that term better), we have our problems that we have to overcome and deal with, but what does it matter what other people know or think about our issues? To me, it seems like another way of making our disease someone else's problem. "It's a hard disease, because no one understands..." It's like being a teenager again, "Nobody understands me... " Will we ever be satisfied with what the average person knows about diabetes? I don't think so...
If we tell everyone that we can eat whatever we want if we dose properly, do we get more research funding? If we tell everyone that hypoglycemia really stinks, do we improve our chances of better insurance coverage? If we get indignant when someone mixes up Type 1 and Type 2, do we get access to better medical devices?
I wonder if sometimes we are distracting ourselves from learning more and being proactive because we focus so much on getting the word out about how d-ifficult it is. I hate to say it, but diabetes is unique among many chronic diseases, in that we have the power to make our lives quite a bit better. I've improved my health over the years, and while the disease still dominates much of my life experience (and, in fact, inspires this blog), I don't see myself as a victim. I feel lucky that diabetes has taught me a lot about myself, and human health. I feel lucky that I have a disease in which choices you make can help you live a better, more normal life.
It's been years since a person that I was with questioned what I ate. In fact, more often than not, people are offering me foods that I choose to gently turn down. That's a subtle advocacy for self determination and showing the non-diabetic public that we can take care of ourselves. I'm usually the first to share about my diabetic experience with people I meet. I try to portray a picture of a person that has learned about the body and that I can take steps to make the most of a life with a chronic disease, which is a important part of my life experience.
For me, the connections that are made with other PWDs are more beneficial than anything that we can forge with the non-diabetic public. We understand each other almost automatically. I love the opportunity to share ideas, results and success with people who are living the same condition that I am.
Don't get me wrong, I want the medical community to know what's important to me as a Type 1 diabetic. I want my voice to be heard and understood to the people that matter.