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.


  1. I had read one nonfiction book about diabetes (Sugar Was My Best Food) and a number of fiction books with diabetes characters, and had learned about diabetes in health class, and was no better off than if I hadn't read anything at all about diabetes, and I think that's a problem.

    I stopped getting the Chicago Sun-Times because it had articles relating to health multiple times per week, including a health column, and while I didn't know much about the accuracy of the rest of the paper, I knew the accuracy of the health articles left too much to be desired.

    A lot of people are interested in learning about health issues.
    Also, a lot of people with diabetes don't know much of anything about diabetes; information written for the general public may be informative to them.

    My biggest problem with most of the information disseminated as diabetes awareness is that it is unsubstantiated, or it is information from one or a few people that has been grossly over generalized.

    I am somebody who loves to learn about medical conditions including ones I don't have. I also like to talk about these things, and I think people are interested.
    I agree that it is not helpful to go "poor me".

    1. I agree, there is a lot of info out there that isn't helpful. I think some of the writers are trying to reach a much too broad target audience and they end up creating information that is tepid and "safe", but not really specific enough to help anyone in particular.

      I guess I just want people to be clear what their advocacy goals are, and who their audience is. For me it is about sharing results/success with others, encouraging others to be pro-active patients, and being empowered to strive for the best health possible.

  2. I mean, before my diagnosis, I head read, etc.

  3. The main thing I'd want people to know in terms of "diabetes awareness" is that I don't process carbs very well. That is my biggest issue, in terms of the public misunderstanding me. Someone who knows me offers to provide dinner when we're moving or something, and they bring me a huge cold soba noodle and peanut sauce salad. A "healthy" meal involves lots of sliced fruit and orange juice, maybe some turkey sandwiches... Come on!! My life would be better if everyone "got" glucose metabolism and the connotations for the diabetic community. I think this low-carb angle is much harder than when I was eating to avoid meat...

    1. Yeah... sigh. Even people rather close to me have not caught on to the fact that starches make a poor main course for me... I can always skip a meal or eat less in general and be polite, but it's just strange that it hasn't sunk in yet.

      When I turn down the bread at restaurants they usually offer me fries or fruit as an alternative. Nope, pretty much the same for me.

      I agree with you. It's one of those things that the low-carbers have to bite our collective tongue and just keep truckin'.