Mischaracterizations

In re-reading the comments on a recent post talking about how my family doesn’t really GET my blog and what it means, it’s clear I’m not the only person experiencing this frustration. While I can get behind promoting Diabetes awareness to the general public, isn’t Diabetes awareness and knowledge more important to the people we deal with on a day-to-day basis? Are we fighting this battle from the outside-in?

As important as it is to petition our local representative and urge congress to take the necessary action to support efforts to find cures and improved treatments, shouldn’t we also promote efforts to educate the people closest to us? Sure, with the nomination of Sotamayor, Diabetes has been brought up (in a lot of cases incorrectly) and is getting more airtime in various news outlets. But the world is a big place, trying to promote Diabetes awareness among so many people is a tough task, especially considering how many people close to us are still unaware or uneducated.

We all know how frustrating it can be to briefly talk to coworkers or acquaintances about Diabetes. The typical conversation will include such phrases as “I’m so sorry”, “So you can’t have sugar?” and my personal favorite “You don’t look Diabetic.” What exactly does a Diabetic look like? Sometimes trying to educate and reeducate people about Diabetes is more exhausting than managing this disease itself.

But here’s the pickle, particularly with me. I don’t really open up much, about anything. I don’t willingly offer up information about my Diabetes in particular. I don’t want to talk about my latest blood sugar reading unless it’s ridiculously low and I need help, but even then I’m far too stubborn to ask for help. My origin story is a classic example of that. Diabetes education is a true tango, and it takes 2 for this dance to succeed. While I would appreciate genuine questions about my Diabetes and not invalid assumptions and wild mischaracterizations part of the blame also rests with me (us) to be willing to take the first step in informing the people close to us with facts. It’s not our responsibility to run around debunking every single myth and fallacy, God knows we wouldn’t have time for anything else if that were the case. However we (I) can’t shy away from the opportunities that arise to answer as many legitimate questions that come our (my) way from people who want to learn.

This isn’t necessarily a call to arms or anything like that, but I think there are questions worth asking: Who are we trying to educate about Diabetes? Who should we be educating? When the people closest to us still part of the uninformed majority, is Diabetes advocacy being targeted to the wrong people?

4 thoughts on “Mischaracterizations

  1. Personally I’m trying to educate my family about diabetes. If something was to happen to myself and my husband, I need them to be able to step up to the plate and manage Tristan’s diabetes. I’ve been trying to educate them for 4 years now and it’s still not working 😦 When I tell my mom that I need her to learn this stuff… what if something happened to me…. her answer, well we will go to the hospital with him and have somebody teach us!!!!! Seriously??

    I find it every difficult to educate people who don’t deal with it on a daily basis. My feeling is that they just don’t care. I do jump on the chance to answer all questions when they are asked and I also inform people that they can ask me any questions that they want.

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  2. This is it, exactly. A twitter question went around last week…What is your wish regarding diabetes??? I said that we wish that the people closest to us would make the effort to learn and understand something (diabetes) that profoundly impacts every moment of our lives. Yea, it’d be great if Congress “got” it and we could get more money for research and all…but the first thing we want is for our family and friends to be interested in “getting” it. Great thoughts…thanks!

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  3. I agree with Rachel that unless you live with it everyday, you’ll never really “get it”.

    For me, I think my wish that people closest to me would be interested is less because I want them to have the knowledge, and more because once you have the knowledge, then you’re able to share the emotional experience with me – which is pretty lonely when you have to deal with it without as much support as you might have otherwise. Probably not surprisingly, I think minimizing and dismissing the need to know the facts of it is how people closest to me protect themselves from the fear and worry though. If I could properly manage my D without all the knowledge, I know I’d be far less worried and fearful of the what-ifs.

    As I said in my post today: there is a reason for people’s behaviors, and I can see the incentive for putting up blinders to learning about diabetes. Not that it’s always the case, but I think oftentimes, it’s just people trying to protect themselves.

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  4. I think a big problem with diabetes is that it is not like most illnesses, where there is a fairly well-defined beginning and end. People get sick, and then they get better. But diabetes is forever. I don’t think that families and loved ones don’t care – I think they just want you to get better so they don’t have to worry about you being sick anymore. Which, of course, only underlines the fact that they don’t get it. But it can be pretty scary on the outside, too. Sometimes I think the only thing worse than being sick is watching it happen to someone else, and not knowing what, if anything, to do about it. Obviously, education would help relieve some of this anxiety, but diabetes can be kind of complicated and overwhelming and exhausting to think about, and I think people get lazy and would rather you just be healthy so they can pretend like you don’t have it.

    Additionally, I think some people without diabetes feel a little uncomfortable talking about it because they don’t always want to be reminding you that you’re somehow different. Especially because they love you and don’t want you to think that different = defective. So they treat you like they always have and try to avoid the subject because they aren’t always sure what they can say about it without offending you. Of course, this means that people don’t learn much about it and end up offending you anyway with their ignorance. 🙂

    I do not have diabetes myself, but I worked for the American Diabetes Association for 5 years and in the process learned just about everything there is to know about diabetes, except what it’s like to actually live with it. This is something that people with diabetes seem fond of reminding me of, and they’re right – I’ll probably never really “get it.” But I remember we used to have Day With Diabetes activities at work where we’d all stab ourselves with lancets several times throughout the day and track our activity levels and try to calculate how much insulin we’d need if we ate the tiramisu. Probably not even close to what your lives are actually like, I’m sure, but it was something, at least. I always felt like having day-in-the-life activities like that were better than handing people dry educational materials or spouting off facts about the disease. Just a thought.

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