Sometimes, I forget why being an advocate for this disease is so important. I get bogged down with life and schedules, and for a brief moment, I forget exactly why I spend so much time on diabetes awareness, advocacy and education. Then, as if right on cue, I get a gentle reminder.
This time, that reminder came by way of a nurse I recently spoke to via the telephone. My insurance plan (which I LOVE very much and am incredibly thankful for) requires employees with specific health conditions to speak to a nurse about management several times a year — and you guessed it, diabetes is one of the listed conditions.
After talking with the nurse, I hung up the phone and fought back tears. The nurse I spoke with was incredibly kind and commended me for my control, but she said a few things during our conversation that sent steam spewing out of my ears. The first was when I told her my A1c was 7.0 and she replied with “Wow, you barely got there, didn’t you?”
My answer was polite, but inside, I was fuming. I’m proud of that 7.0 A1c, and I worked really hard to achieve that. Sure, I would like a 5.5, but I’m comfortable with anything below 7.5. I also have no diabetes complications to date and my organs are all functioning properly. As the conversation progressed, she asked about my diet and if I kept my numbers below 172 mg/dL. My response was yes, most of the time. That answer brought a short lecture about “being naughty” and knowing when I make a mistake and eat something I shouldn’t.
At that moment, I could feel the tears beginning to well up in my eyes. I explained that diabetes sometimes has a mind of its own despite my best efforts to maintain good numbers. I shared my experiment of eating the same food at the same blood sugar level two days in a row and getting different results. I calmly and assertively mentioned that emotions, stress, fatigue and a host of other things also contribute to a type 1 diabetic’s blood sugar levels.
The nurse mentioned she has type 1 patients that keep their numbers in range constantly through following a diet, checking their blood sugar and exercising alongside their insulin dosing. I very politely told her those patients were lying. I know quite a few (hundreds, actually) type 1 diabetics, and none of them are able to escape all high blood sugars.
She mentioned a few websites to visit, and I shared a few more with her. She shared how she uses type 1 patients as an example to type 2 patients in regards to control and management. Based on her comments, it seems type 2 is always caused by lifestyle and for no other reason. I shared with her examples of how that’s not always the case either — including the case of my father.
I also shared with her the DOC. I explained there’s a wealth of advocacy, awareness and camaraderie that makes a big difference in a person’s control and willingness to control diabetes — rather it control them. I explained the emotional implications and shared how having a network of familiar and similar support can make a huge impact in a person’s control.
Yet still, I was sad when I hung up the phone. I was grateful I spoke to a kind, patient nurse. And I’m especially grateful to have insurance and to have a company that provides me a 24-hour nursing phone line. But as the receiver clicked down on my desk, I held my head low feeling defeated.
Then I remembered… this is why I’m here. This is why I have this website. This is why I’m a member of Diabetes Advocates and why I volunteer with JDRF and Hot Shots. This is why I’m a trained mentor through JDRF. I do this so people understand what diabetes is like, so they will know it is a constant struggle. I’m here to show people that I can manage my diabetes and still have a wonderful quality of life full of carbohydrates and sugar. I’m here to show people it’s real. Sometimes there will be tears, sometimes there will be screaming and sometimes, there will be giant hugs (even if they are passed around through Twitter).
I’m not advocating for a lazy approach to management. I’m not advocating for a cupcake for breakfast each day, but for me and my health, I’m comfortable eating a cheeseburger from time-to-time or indulging in a petit-four at my office. I can still enjoy my favorite (albeit mostly unhealthy) foods in moderation. I will have a high blood sugar on occasion, and I’m completely OK with that as long it’s a rarity and not a daily occurrence. And so far, my highly-educated, specialized endocrinologist is OK with it, too. (Sidenote: This works for me and my diabetes management, but your diabetes may vary.)
I just wish, more than anything else, that others truly understood the human side of diabetes. It’s real and expecting me to have perfect control is unrealistic. The conversation with the nurse was meant to help me, but the end result left me feeling somewhat flat and incredibly sad.
It was, however, a gentle reminder of why I am an advocate for type 1 diabetes. Now if you’ll excuse me, I’m going to take my 112 mg/dL blood sugar and go eat something “naughty.” 
I love this post. I’ve had conversations like that too, and you’re right – they just don’t get it. But, like you, I consider it my job (duty?) to HELP them get it. At least a tiny little bit.
You have every right to be proud of that 7! People that don’t have this disease don’t get it. I had that happen to me once when I was in the upper 6s – it was actually the first time in ages I was below 7. The doctor’s office that pulled the blood was happy with it but another doctor chewed me out. I left there deflated also after being excited I was finally below 7. There are so many things that mess up our BS and other people just seem to think if you are high, you ate something bad. You do a very good job showing people what it is like to really live with this beast!
Great post!
Excellent thoughts. You clearly are a wicked advocate for yourself and others.
I hope that nurse could read what you wrote, and realize how deflating off the cuff comments can be.
I would have killed for a 7.0 A1c in my pretransplant days!
I am so thankful that we have a supportive team. We work hard to have great numbers, but we are from perfect. I do feel guilty mentioning a BG number in front of some friends though. If we are out of range I feel like justifying the number. “Hey she has had great numbers all day and this one is just a little high”
Great post and great work, Victoria! This is such an awesome post, despite the feeling that “nice” nurse gave you on the phone. That’s one of the things that annoys me more than anything, when even the most knowledgeable and friendly medical professionals try to fold me into the textbook definitions of how I should be managing my diabetes. I’m lucky and my Endo doesn’t do this, although interestingly I did find a CDE at her office who’s been living with Type 1 for so many years – yet she tries to put me into those textbook terms. That’s even more frustrating, because she DOES get it personally, yet seems to be living in denial when advising me. That’s probably why I’ve only been to see her once. There’s a disconnect there, and I really am torn behind wanting to ditch her or hold on because she has personal Type 1 perspective. But way to go on advocating and doing what you do, and GREAT JOB on your own LIVING with diabetes in the best ways you can.