My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think
every woman every person should know how to do that.)
I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.
I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.
Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)
Now re-read those first two paragraphs.
I Don’t Expect You To Know…
I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.
All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?
“What do you mean the ER nurse didn’t know what a CGM is?”
“The optometrist asked you what your blood sugar was this morning?”
“The doctor wanted to take your insulin pump off in the hospital?”
“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”
“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”
We are the experts…
We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?
This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)
When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them.
“The ER nurse didn’t know what a CGM is?”
Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.
“The optometrist asked you what your blood sugar was this morning?”
Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)
“The doctor wanted to take off your insulin pump in the hospital?”
If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology - and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation - a two-way conversation - and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.
(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)
When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.
We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to us to be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.
We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?
Sounds crazy, right?
Let’s be crazy.
The numbers varied from 2,500 to 4,500 AADE attendees, depending on who counted. (Think of it as a very inaccurate blood glucose meter.) The final number didn’t matter; my first impressions were one of gratitude and introspection.
Why? People with diabetes spend a lot of time winging it alone. For those fortunate enough to have a smart and trusted support network (the DOC, face-to-face meetings, etc.), it’s still a rough haul, but for those who don’t have anyone… my head and heart hurt thinking about those individuals.
Enter the diabetes educator.
They can be the ones who help you go from “can I do this?” to “what’s my next goal?” with the knowledge and tools everyone needs. Cool, right? Except there aren’t enough of them and many are reaching a point in their careers that retirement is not a far-away dream. We need these educators to bridge the gap between physicians who may not have all the answers (and some don’t!) and the patients who need those answers.
What diabetes educators do
If you don’t know what a diabetes educator is, here’s the definition, according to the AADE:
Diabetes educators have the knowledge and skills to teach people with diabetes how to manage their diabetes to live their healthiest life. For example, diabetes educators explain how foods affect blood sugar, give specific directions for taking medication correctly and offer guidance on how to lower the risk of diabetes-related complications. It can include advice on everything from getting through the excesses of holiday dinners and parties, to coping with the challenges of managing diabetes while traveling for work or fun.
Diabetes education is not a lecture on what not to do. It’s real-life guidance, coaching and support proven to help people understand exactly how to best manage their diabetes, and to feel less alone while doing it.
Diabetes education can take place in a group or one-on-one setting as part of a formal or informal format.
My diabetes educators have been more than that. Some have been a sounding board, others a shoulder to cry on, and one has been able to say “Me, too,” because she lives with Type 1. I believe in the power of diabetes educators to make a difference in our lives. We need more of them.
My First Impressions
From Wednesday to Saturday, I attended some thought-provoking sessions, talked with educators who cared tremendously (and some who were just there for the continuing education credits), and danced so much one night that I had problems getting out of bed the next morning. My legs are still sore.
The educators learned from us, too.
Two interviews with diabetes educators had me thanking them both for their dedication and willingness to do what it takes. I touched new technology that will help many. I saw an amazing display of showmanship one night with a pump and an iPhone.
I came home feeling recharged, hopeful, and grateful for these individuals who want to make life with diabetes suck less.
My car didn’t feel recharged. I also came home with a new alternator and battery.
Not long after my diagnosis, we stopped into a busy restaurant near the beach. The windows of the regal old manor overlooked the rocky bluffs and we arrived at the height of the dinner rush. No reservations, but I overheard my mother say to dad: “Let’s see if we can get a table. I’ll tell them she has diabetes and she needs to eat right now.”
Mortified. Ashamed. I couldn’t believe that my diabetes was going to be wielded as a weapon or as a quick pass ahead of those who had the forethought to make reservations. I quickly turned and explained that I didn’t need to eat right away; I hadn’t even taken my shot yet. My parents must have seen the look of fear on my face of being “outed” for no good reason. We headed back to the car and ate somewhere else. I don’t remember the meal we ended up eating, but I swore to myself that I wouldn’t wave the “D-card” if I could avoid it. No excuses due to diabetes.
Have a bad night with highs? Go to school. Power through. Chug liquids and ignore the fuzzy feeling in my head. A low at 3am? Go to work. Power through. You’ll feel better in a while. That was my teens and twenties and thirties. I didn’t want anyone to think that diabetes would make me weaker. Less competent. I may have been exhausted or felt queasy, but I was not going to let it get the best of me. (If I could go to work slightly hungover, I could certainly go to work hung-low-ver.)
Much like I’ve found that I can’t drink alcohol anymore without turning green for days after two beers, it’s also become apparent that I’m no longer able to avoid pulling the D-card. A severe low two nights ago had me canceling plans with friends the next day and let The Kid watch PBS all morning while I parked myself in a supine position on the couch. This summer, we went to Disneyworld and for the first time in my life, I used a Guest Assistant Card (first and last, as the rules changed after we went) to avoid standing in the sun too long. If it hadn’t been for that special consideration for diabetes, it would have been a very short and expensive day. (Even with the CGM, the lows came fast and furious. We would have spent most of the afternoon sitting somewhere not having fun while I recuperated.)
Lows sap the marrow from my bones. Highs have me swimming through molasses. Days where I ride the diabetes roller coaster derail me. I can’t power through anymore. I can only power down and hope that I’ll recharge within a few days.
Truth be told, until recently I couldn’t understand when other people with diabetes would talk about how they missed school or work because of their diabetes. In my head, I’d ask: “Why don’t they power through? I don’t get it. How can it be so bad?”
Ah, hubris. I believe that my fear of being treated differently and pride that I could power through prevented me from recognizing that while we all have diabetes, our bodies react differently. My luck has run out. Turns out, I’m not Super Diabetes Woman.
Now that I can’t bounce back, I see that when the D-card is pulled, it’s (most of the time) for a good reason - because it needs to be. I’ve had to learn that it’s perfectly acceptable to say that I had a tough night with my diabetes and that I’ll need to reschedule a get together. There’s no shame in asking for a little help if I need it. I can be excused from something because of my diabetes if I’ve done everything I can within my control and still end up with a sucky low. Or a sucky high. Diabetes won’t excuse itself, so I’ll have to excuse it.
But trying to score a primo restaurant table? Nope. Still not going to do it. Even if has a beautiful view.
I’ll use my D-card for good, not evil.
Whether you physically sat in the room at the Diabetes Advocates Forum or joined us there in spirit, I tell you now. It ends with us.
We will be the ones to end the feelings of frustration with diabetes, the barriers to affordable access, the misconceptions of this disease, and in the future, the disease itself. However long it takes, whatever needs to be done, it ends with us.
After two days of intense, emotionally-charged meetings between key members of the Medtronic Diabetes team and invited diabetes advocates, this phrase is what remains in my head.
It ends with us.
Bold statement, you say. Brash statement, you say.
About time, I say.
I understood before the meetings began that we would be discussing the new Medtronic Minimed 530g with Enlite and discussing diabetes advocacy, but beyond that, no clue. I knew that Medtronic Diabetes and Bayer HealthCare had selected members of the diabetes online community (DOC) regardless of insulin delivery system and CGM choice. (You heard Dexcoms and different beeps and boops going off throughout the sessions. Ahh, the sultry song of diabetes.)
Those who attend as well as those who don’t often wonder why these individuals were chosen to represent the diabetes contingency. (I see the questions on Twitter and the comments on blogs and other social media portals.) I still don’t have an answer on that, but we all had one thing in common: passion.
And that passion wasn’t just coming from the advocates. It came from almost every person I encountered with a role at Medtronic Diabetes. They do want to know what we think, not just about their products and how they present them (and we didn’t disappoint in our answers, believe me), but about how they can help. Not air quotes help, but real how-can-we-use-our-voice-to-help.
Not once did they try to sell us something. Not a product or a line or lip service. The Medtronic Diabetes representatives were frank and forthright, matching the honesty of the attendees. I heard apologies for missteps and long waits for better CGM sensors for their products. I heard requests for better ways to communicate. I heard agreement towards greater participation with advocates to reach goals.
There was laughter. And tears. And a lot of beeps. We all scribbled on notepads and tapped on smartphones and laptops. Sessions occurred in which decisions about future advocacy initiatives were identified and visions questioned for clarity. Some of my moments of ah-ha! came not in the meeting, but in sidebar conversations. Advocacy happens everywhere.
I’ll get to the nitty-gritty of what happened in later posts, but I flew home with that feeling in my gut that burns deep.
It ends with us. All of us. Not just advocates, but everyone who is passionate about ending. That includes Big Pharma and device manufacturers and government. Us. There is no longer a “them”.
And in order for it to end with us, it has to begin with us.
Get ready, because…
It ends with us.
I wanted to do something different this year to help raise awareness of a chronic illness that directly impacts 26 million people in the United States alone. (The indirect impact is staggering. Think of family members, friends, coworkers, employers, and health care professionals and you get dizzy and a little nauseous.)
Every day this month, I will share information about diabetes in an easy-to-read, easy-to-share post. I promise to be honest and not sugar-coat (Oh, the puns will happen. Just roll with it.) anything I share. I’ll give you facts. I’ll give you resources. I’ll give you experiences. I’ll give you the real deal. Some information will be common knowledge, but other posts will be ones that will make you stop and think.
For November, I’ll be your Diabetes Awareness Month guide. Your DAM guide, like Arnie.
Can I ask you to do one thing for me?
(You can do one thing - or many. Your choice. I’m happy with one, but go crazy if you feel like it. You’ll be in good company.)
- If you haven’t subscribed to my blog, please do so. (Upper right hand corner. See? Over there? Where it says: “Get It In Your Inbox?”) Sign up and get posts about diabetes awareness and as a bonus, you’ll get other posts about diabetes and me. I don’t sell your email address, will never send you spam (not even the one in the can, because I hoard those), and you’ll never miss a post about the coolest toddler on the block.
- Like this blog on FaceBook. Or you can follow this blog on Twitter. These don’t just have posts from this blog on them. I fish throughout the Internet for nifty snippets of diabetes goodness and throw them out as chum. Or delicacies. You pick.
- But at least once this month, if you do nothing else, share a post about something you think is important for people in your life to hear about diabetes. (Each post has a share section at the bottom of it. You can even share a post via email!) Share with other people with diabetes. Share with a friend or a coworker. Anyone who will listen (and even those who may not want to listen, but need to hear it.), but share.
I am one woman, but I am aware that a single person can make a difference in the world. I am aware of what a few of us can do. I am aware of what many of us can accomplish. The Diabetes Online Community has shown me that.
Now, before we start the DAM tour, does anyone have any DAM questions?