Telling the Endo to Back Off

This morning I came upon this blog post on my Twitter account. After reading this, it brought tears to my eyes. This lady said everything I have been trying to tell my endo(s) for years.

Why I Told My Diabetes Doctor to Back Off

Peg Abernathy

Let me just say it. I hate diabetes. I hate it. Oh, I know that it can be managed (I do) and that you can live a good, long life (I am -- 27 years with Type 1 diabetes). But still, I hate it. And one of the reasons I hate it is that, for me, it has been so difficult to find a good doctor who's not going to judge me and make me feel bad when my numbers are not in range. Not wanting to be judged, hassled, scolded or embarrassed for my diabetes self care, literally keeps me from going to the doctor as often as I should. Period. And I'm willing to bet that many of my fellow people with diabetes agree with me. So trust me when I say that rarely ever does chastisement motivate. Not for me anyway.

And to complicate my personal diabetes management even further, I work in the diabetes industry, and because I know many of the big players in the field, it impacts my career as well. Would they look at me differently if they knew that for the last week I've been struggling with my blood glucose levels and I've been averaging around 220? Would I be viewed as any less credible or talented or capable? Would they scoff and say, "She should know better"? Well, I've got news for you, diabetes is its own wild animal, and just like being in the wild, it is often unpredictable and random. Diabetes shifts day to day, even moment by moment. If I was confident that every time I took one unit of insulin, my blood sugars would come down in the same exact manner, this condition would be a whole different dynamic. But it's rarely ever the same. So I struggle on, trying to catch the wave. Sometimes I ride, sometimes I go under.

And I have to ask, what about the parents of a little kid with diabetes who's juggling a million things at once and has to add the enormous complexities of Type 1 diabetes into the family mix? Knowing what I know, I am simply in awe of a diabetes parent who gets it right even half the time. Because I know how hard and incredibly complicated it is. These parents are literally heroes in my eyes. Ever heard of the saying "herding cats"? Yes, it's like that. Yet these parents are vicious and stealth and most of them have given their entire life over to raising a child who walks the precarious diabetes line every single day. It's unbelievably scary and random. Just when you think you have it all figured out, everything shifts and you have to start all over again. It just never ends. And over the years, I've had so many of them tell me that they feel frustrated, judged and nervous when taking their kids to their appointments. They are being held to, many times, unreasonable standards and scrutiny. If you as a parent or a person with diabetes have found that magical combination of empathy and a non-judgmental nature in your diabetes doctor and their team, consider yourself lucky.

There are amazing doctors and diabetes educators out there who "get it," and I know many of them. This is not an op-ed on bashing the diabetes providers as a whole, but all I'm saying is that we need to move the diabetes management dialogue more into the direction of looking at the whole picture. Consider everything about the person, their age, their support system, their life circumstances. Help them set goals that are attainable, encourage them when those are missed or adjust them all together. I'm not a doctor, but when you're dealing with diabetes and a health care team who is non-supportive, it's very easy to just give up. And that is an avoidable tragedy in my eyes.

Here's a true story. I was sitting on a stool in my diabetes doctor's office updating my physician on my diabetes management, and during our conversation I suddenly felt like my blood sugar was dropping. I pulled out my blood glucose meter to test my sugar levels and my doctor quickly got up and stood behind me in case I was going to fall. When I tested at 177, my doctor rolled her eyes and quickly plopped back down in her chair, looking at me like I was an idiot. I looked back at her, infuriated. I don't know why I felt low when I wasn't. Perhaps it was a fast drop from a higher number to a 170, which, for me, can cause me to experience low blood sugar symptoms from time to time. Here was a well-known, highly-respected endocrinologist who reacted to my number instead of me. I looked at her and said, "Let me ask you something. When you were in medical school and learning about diabetes, did they ever have you inject a small amount of insulin just to see what a hypoglycemic (low blood sugar) event feels like?" She looked at me horrified and said, "No! Of course not." So I looked at this person who not only affected my diabetes management but also my career and said, "Then don't judge me. Don't judge my fear. If you don't know what it feels like, then don't make me feel stupid for trying to avoid that. Maybe I'm not doing a good job at it, or maybe I'm too high some of the time, but I'm scared. And this is not helping me." She looked at me, shocked that I would dare say such a thing to her, and then said, "Perhaps you should see a psychiatrist." Really? So I have a rational fear of something that is a possibility, something I try to avoid, and that makes me crazy? I never went back to that office.

Recently, I was working with a colleague who also has Type 1 diabetes and I asked him, "Why do blood glucose meter companies always seem to put a 101 or a 98 blood glucose value reading on the front of their meter packaging? Why don't they put a 201 or even a 250? How about a 180?" He dryly answered, "They want us to feel as bad as possible." We laughed but seriously, are these numbers supposed to be our goal? Is 98 a good number as we head out on a 3-mile jog? Is it a good pre-meal number? Where is that number headed? Up? Down? Steady? I constantly adjust my number goals based on my circumstances. Am I at home? At work? What time of day is it? Am I stressed? How do you correct a high blood sugar that is due to stress? On and on and on.

A static, singular number is just a screenshot in time. It doesn't tell us the whole picture. Now, don't get me wrong, it is critical that we have these numbers and I am a huge believer in multiple daily checks. But that important number is just a piece of the overall diabetes management puzzle in the never ending, ever moving diabetes daily grind.

Because I live a busy, productive lifestyle, I have to check my blood sugars a lot, typically poking my fingertips a minimum of nine times per day on average. (Ouch.) Let's do a little math quiz. What does 9 x 365 x 27 mean? Yes, in my diabetes lifetime, I have stuck a needle in my fingertips over 88,000 times -- 88,000! So, to all my doctors and well-meaning friends and family members, I'm trying my very best. Sometimes my best changes, but I always try. Believe me, it doesn't feel good to not feel good. And I honestly think that many people who are labeled non compliant or who seem not to care, have simply given up trying. It's not always about the number. It's about the whole dynamic, the whole life experience.

To me, understanding and treating diabetes on a behavioral level is a critical missing piece of the puzzle, one that is often overlooked and minimized. A leading expert on diabetes behavior, Dr. William Polonsky, president of the Behavioral Diabetes Institute and associate clinical professor in psychiatry at the University of California, San Diego, says:

The quality of the relationship between the individual with diabetes and his or her physician has a very sizable impact on how well, or how poorly, the individual can live with and manage diabetes. I have worked with many thousands of patients with diabetes over the past 25 years and I have seen the power of this relationship over and over again. When you have a physician who you feel is really collaborating well with you, who does not judge or blame, and who treats you with respect and empathy, this makes all the difference in the world.

It's only recently that I stopped trying to be perfect and realized that I'm doing the best I can, and that's when things began to shift for me. I had a long talk with my new doctor and told him to give me my numbers without judgment, in range or not. Just give me the numbers. I told him that I didn't want accolades either as that sets me up for failure when the numbers are out of range. And it's funny. As I watched my doctor write the note in my file, "do not give judgment with numbers, good or bad," I had to chuckle to myself as I thought maybe this doctor learned something from me that day. And it also reminded me that my doctor works for me, not the other way around.

You felt something. The doctor thought the meter result meant you didn’t feel anything? News flash 170 is not normal doctor. But one shouldn’t be offended by a suggestion to receive psychological help. You were dealing with something that could have been a low blood sugar. I once told a doctor he was a smarty pants. I was surprised by the vehemence of the inappropriate response.

A doctor who makes "inappropriate" comments to a patient has mistaken who works for whom.


I like everything you said in this blog
Lots of hugs coming your way

And this is why I want to be an endocrinologist who specializes in T1 (and MODY) and deals with kids and adults.