Words Matter

FullSizeRender (2)There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

 

Words matter.  It is a life learned lesson that we teach our children at a young age. Even Thumper, from Disney’s movie Bambi, reminds us with his famous quote, “If you can’t say something nice, then don’t say anything at all.” But over time and the anonymity of social media, we often forget that phrase. My life has introduced me to teaching kindergarten, to politics, to marketing, to owning my own business, and back to raising a family. Words matter in all of these endeavors. Perhaps more in some areas than in others.

In politics, the art of word crafting is all about “framing the debate”- what is it you want to change or what is it your want to redefine? It is here that sometime I believe we, as the Diabetes Online Community (DOC), could impact policies and public perception the most.
One of the perception of the public about Type 1 and Type 2 diabetes are the misconceptions about “sugar” and how we manage them.  THERE…that word….SUGAR.  If we want to redefine the debate around “sugar” and the perception of how “sugar” causes diabetes, shouldn’t we use the right terms in our discussions?

Diabetes is hard enough without all the misconceptions. But the reality is those misconceptions started from the medical field in its attempt to find out more about our disease. In the early years of our disease being discovered, often doctors would set out our urine in a field of ants and see if they would drink our urine, which if the ants drank, then we were overspilling glucose. Some doctors even referred to this as “The Sugars.” Here in the deep south of the United States, I still hear people refer to diabetes as “The Sugars.”

We claim to check our “sugar’  when referring to checking our glucose levels in our meters. We are guilty of telling people our sugar is too high, or our sugar is too low. It is not a wonder why people are confused about sugar and diabetes. I can see how the connection to sugar for the general public has been establish as a caused of diabetes. And it is my opinion we add fuel to that misconception by the words we used.

What if we took out the word sugar when we are discussing diabetes and replace it with glucose?   Sugar is an ingredient in recipes, it is an endearing term for your better half, and people tend to like it in their coffee…or here in the south, tea. I prefer not to have sugar in my discussions about my disease.

Words Matters.  And how we use them to reflect what we say is important. We have the power to drive the discussion. It is all about how we open the dialog and frame the discussion and it starts with us-those impacted by our disease the  most.

 

 

Curve Balls

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We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

YOU CAN DO IT!  Sometimes when dealing with the frustration that comes with silly numbers that are not in within that narrow little passage doomed “in range,” you need a cheerleader.  The point you need a cheerleader in your frustration will vary from person to person, as much as our diabetes varies from person to person. It usually takes a lot for me to get to that point. I tend to be pretty happy go lucky.

I am very fortunate. I now have three options to disclose my frustrations with my Type 1 diabetes (T1). In the past three years, I have come in contact with several people in the Diabetic Online Community (DOC) in which I frequently will vent/rant to. In this safe environment of a six person group chat, I know I can literally discuss anything and rant about what is really bothering me. (#targetlowsarereal) In addition, I have a close friend that will let me just unload my frustration. Although he has no connection to diabetes, he certainly has an empathic ear and he will let me just vent. Just voicing those frustrations can be very liberating. If you have not tired it in a safe non-judgement environment, I highly encourage you to seek your own little group.

Lastly, there is my husband, my dear love of my life. I tend not to vent too much to him about this stupid part of my life. I know he worries. I know he is concern. I catch him pulling my continuos glucose monitor (CGM) numbers up on his phone. I hear him click Dexcom’s middle button in the middle of night. I see him glancing when I test. But on really bad days-those days where my numbers are being particular stubborn-those are the days I turn to him.  Those are the days, I will simple tell him my day is done. His simple words of I understand and his reassuring words of it will be okay are all I need to hear. He is after all, my biggest cheerleader.

Mentally, this disease can turn major tricks in your mind. It is relentless, time consuming and a balancing act of trying to stay within the lines of a very narrow parameter.  It never stops. Even when your parents use to take care of you, you still felt the impacts of lows and highs. It does not take a rocket scientist to figure out that all of us at some point and time will simple burn out because of the many steps in the day it takes for us to be safe in range…day after day, week after week, year after year, decade after decade. Not to mention to stay within that range is almost impossible. Sharing your frustration with someone can have a huge impact on your mental health well being. Again, I highly encourage it.

But, the best advice I ever got came from individual from TuDiabetes chat room. I don’t even remember what we were discussing. His elegant words came across the screen and it hit me hard. “It is not your fault. Nothing about diabetes is….EVER.”  And you know what? He is right. No matter which type you have.

Most of us feel a mental sting when we start thinking about our numbers. You know, that silly little number that pops up on a glucose test. That number we all tend to focus on. Here is a secret: It is just a number. A number that tells you what to do so you can make your best effort to stay within the narrow strip of “in range.” There are no “good” numbers. There are no “bad” numbers.  It simple tells you if you need more insulin, more carbs, or status quo. As hard as it is, try your best not to judge that number. Although I admit, when that number pops up at 100, I feel like I just ace a test! All those years in school have impacted me.

It is not your fault and you can do it. Empowering words. I wish we all could hear those word in our head whenever diabetes throws you a curve ball. I wish we could all know that we are incredible bad@$&es when it comes in dealing with everything diabetes throws us, no matter what type of diabetes you have and no matter what number pops up on that little meter.

 

 

Hope in a Community

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Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you,Heather Gabel, for this topic suggestion.)

I am new to the blog world and a little scared to share my thoughts on such intimate feelings about my chronic illness, otherwise known as Type 1 Diabetes(T1D). For years I was alone in my journey. Seriously…alone.  In 2013, I was on a quest to find more information about an insulin pump. After 20 years of Multiple Daily Injections (MDI), I was about to embark on pumping. It was such a confusing time. I was face with the decision of deciding which pump I would choose to be attached to 24 hours a day.

It was there, on the computer, I found a jewel of community called TuDiabetes. WHOA….there are people who do this every day …just like me.  WHOA….there are people who understand the frustrations that often results from this disease. WHOA…did you know this community has been around for over ten years?  HOLY COW….I can ask you about your experiences and how you handled this situation?  WOW…my diabetes vary from yours?  GRRRRR….you “get” that I am having a bad day. WHOOOO HOOO…someone is happy for me because I remand in range all day and they understand what a rare unicorn that is.

It is within this community called the Diabetic Online Community (DOC) where the message of “You are not alone” is loud and clear. And that message can be powerful in a world where once one felt alone, and in that discovery comes hope.

Hope is where the DOC stands at its strongest. Together, we are advocating. Together, we are fighting Medicare for the coverage of Continuous Glucose Monitors (CGMs) for those of over 65 and who are not just T1 but Type 2 (T2), and for those of us who will one day be over 65. Together, we are hacking diabetes devices to improve them and make them do what we want to do simple because we are not waiting. Together, we often offer encouraging words with those who need it. We are talking about the depression and burnout that often happens with chronic diseases that require 24/7/365 monitoring and treating. We are educating each other and exploring the upcoming new developments in the realm of our disease. More and more of us are participating in clinical trails for both T1 and T2. And together we are raising funds to help find a cure so that one day Type 1 will become Type None.  (I firmly believe that if a cure is develop for one, the other type cure will not be far behind.)

You are NOT alone and there is HOPE.  Those are mighty powerful words. And I am proud to be a part of the community who delivers that message every single day.