The Diabetes Blog Week prompt today asks us to ponder the question "What They Should Know," i.e. what we in the Diabetes Community would tell someone who doesn't have diabetes, given the chance. Our hostess Karen Graffeo encourages us to use this chance to do a little advocating ...
I've been around the block a couple times since being diagnosed with type 1 diabetes as a kid, so I'll warn you: my list isn't short. People don't know enough about diabetes. I wish they did. That's my view in a nutshell. Looking back, these are the points I'd share with a handful of specific non-PWDs whom I've encountered at some point in my life, who should have known a little more.
To the McDonald's cashier in Ohio who tried to convince me the "sweet-tasting Diet Coke" was in fact said diet soda, and thought I was mistaken to believe it was regular soda:
1. Customer service, dude. Look it up. Working those customer-focused jobs in my younger years, I learned to go along with the idea that "the customer is always right." Explore that concept.
2. I have diabetes, and while that may not mean much to you, it certainly means a lot to me. That means what I eat and drink is a very key part of my health and survival. Little things, like drinking a regular sugar-saturated soda instead of diet, can be a BAD thing for me. Please respect that, and trust me when I say this isn't diet. I can tell. And all you have to do is check. Embrace the customer service role, and be what you are meant to be in your current position. Otherwise, find another job. Thanks, in advance.
To that reporter writing a story about the "silent killer" that is diabetes, with an editor demanding sources who are overweight or must inject themselves with shots every day:
Facts are important and accuracy is your job. Not everyone with diabetes, of any type, is overweight. Two main types of diabetes exist, and it's important for you to distinguish between them and adequately explain to readers those differences. Many people think those of us taking insulin have the "bad" kind of diabetes, or that our illness is somehow more severe than those who don't take insulin. That helps breed fear and misconceptions, especially among type 2s who sometimes see insulin as a last-resort and sign of failure — which it is NOT. What you write is playing into all of that, so be careful. Please make sure you're getting it right. From one journalist to another. If your editor has a problem with that, send the right sources his or her way. We in the DOC will make sure they get the message.
To the other reporter or columnist who already published a story criticizing any person with diabetes for eating sugar, because that's a recipe for doom:
We CAN eat sugar. You got it wrong. Whether or not we choose to eat sweet things is a personal decision left up to each of us, because it takes a lot of work to manage the consequences, but it's not something we're restricted from enjoying if we choose. Those of us living with diabetes don't have to completely avoid sugar; we just have to make sure we're taking enough insulin to accommodate whatever we're eating. Sure, moderation is important and no one's supposed to constantly eat ice cream or candy. Please make sure you know what you're writing before it's published. There's a whole initiative now run by the Diabetes Advocates group aimed at making sure newspaper and media folk get diabetes right. Do what you need to, in order to get the most accurate information out to your readers. We appreciate it.
My doctor and I had this discussion and determined that this many blood sugar checks was the best for my health. You are not my doctor. Stop second-guessing those who are supposed to be making the decisions based on health, not a financial bottom-line. We can sit here and argue about why I check X many times a day, in order to keep adequate track of where I'm at... why I'm working to prevent highs and lows that could either leave me in need of paramedic help, an emergency room visit or future complications that will all cost a whole lot more than the additional test strips needed each month. You do the math!
To the nice concerned lady at Target:
You didn't seem too hip on the basics of Diabetes 101, but when I was having a low in the cheese aisle that one day and just seemed a little "off," you found it in your heart to ask if everything was OK. And you saw that it wasn't. And in seeing the insulin pump clipped to my belt, and hearing me talk about needing juice or sugar, you scurried off to the nearby refrigerator and grabbed an OJ box for me to consume. This erratic behavior caused by lows happens to us People With Diabetes sometimes, and often we're confronted by judgmental looks from people who think we're just drunk or overly dramatic wannabe actors. There are also those Diabetes Police who, with all good intentions, ask questions and try to offer us advice or suggestions — even at the most inopportune times. But you didn't go there. So thanks for that, and much thanks goes your way for helping me out.
To the guy at the Kansas City airport in October watching as a couple-dozen members of the Diabetes Online Community gathered to greet a friend visiting from Australia:
We're sane, really. That's not a lie. Even that one girl with the faux marriage proposal sign. We are friends who met online because of diabetes, but we extended those friendships into real life beyond that shared chronic condition. The support, camaraderie, and awesomeness is something I hope you have in your life. We referred to this particular get-together as the Simonpalooza, but to outsiders it may be more simply referred to as good friendship.
To the TSA agent or security officials at courthouse entrances who've hassled me because of the insulin pump and CGM hooked on my belt:
No, these aren't pagers or cell phones. They're more important than that. It should be obvious — I like to pretend I'm Batman with a cool utility belt. What!? You thought these were medical devices or something? Please... That's like saying I thought your screening practices and attitudes actually served a beneficial purpose. But no, seriously, I'd like the non-D screening agents and metal detector agents at government buildings to know that I'm just trying to get where I'm supposed to be going without being overtly harassed and having my medical devices put in danger by your machines and methods, all in the name of security.
To my non-D friend who jokes that People With Diabetes just gather for meetups to "snort Pixy Stix," rather than hang out as friends:
I've not said anything, because I know you're just joking, but this does bother me. I think it's because the phrase hints at the misconception that "sugar causes diabetes." You know the difference, because we've had that conversation and you know better. But this still bugs me, maybe even more because it feels like you're slamming my friends and my D-Community. I may be nearing the point where I'm going to confront you on this.
To my 5-year-old self, just before I was diagnosed with type 1:
I'm bending the rules a little here, but if I could, I'd go back and say to myself: Things are going to get a little crazy and you'll have to start stabbing yourself with needles soon. But don't worry. It will be OK. You are normal. And as much as you might feel "different," you are a person before you are a diabetic. Just live your life, little Mike. Diabetes will change your life for the better and lead to great things, personally and professionally. It will allow you to reach new heights in achieving your dreams. It's not a pure negative, even though it will be tough at times. Just keep your chin up.
To any parent, just before they're thrown into the D-world for the first time:
You may not understand diabetes at this point, but you'll soon become well-versed to the level of being a superhero. There is no cure and you didn't cause this, so don't let other people make you feel guilty. You may not think you have the strength to do what's necessary, but you do. That attitude and ability to manage your child's diagnosis and diabetes life will stick with him or her for the rest of their life, and allow them to grow into the adult they will become. So in advance, thanks for what you're about to do!
A whole bunch of other PWDs are writing on this topic today, too — so go check out their blogs (after leaving a comment below, of course!!)