Chapter 9: Walking the Blood Sugar Tightrope
After living with type 1 diabetes for almost three decades, I’ve come to realize that nothing works more efficiently and effectively than a properly functioning pancreas. All my insulin pumps and continuous glucose monitors and exercise can only take me so far. That’s the reality of life with diabetes: it’s not a perfect science, and perfect diabetes management isn’t an achievable goal. (Not to mention, it’s a constantly moving target.)
Knowing that perfection isn’t possible makes dealing with the day-to-day of diabetes a little easier. When I test, I know that my blood sugar isn’t going to be between 80 to 110 mg/dL every time. Seeing those numbers is a cause for celebration, but seeing numbers that aren’t within that range isn’t a reason to hang my head. Letting those kinds of discouraging thoughts enter my head isn’t healthy. I need to find ways to stop myself from assigning emotional worth to my blood sugars. Instead, I need to see them as what they are—information.
I’m not sure when it started, but while I was growing up blood sugars were either “good” or “bad.” I don’t fault my parents or my endocrinologist, but more the perception that we had so many tools to manage diabetes, so of course we should be able to hit all the suggested marks! Also, “good” is easy to reward by way of Barbie Dolls and being allowed to stay up late, but each “good” comes with a guilt-inducing “bad” counterpart.
I have a hard time with some of the adjectives assigned to blood sugar results. When that 52 mg/dL result grins up at me from my meter, I have to beat back the phrases that jump into my head. “Bad number!” “What did I do?” “Wrong!” “Scary!” Same for the 342 mg/dL that comes with the same knee-jerk reaction of blame and shame.
It’s a psychological war zone, attaching these types of emotions to blood sugar management. Walking the tightrope in pursuit of in-range numbers is difficult enough, with all the variables, but positioning the rope over a nest of emotionsin-the-shape-of-alligators makes it that much harder.
“The emotions surrounding the numbers would be fine if they only served to motivate us to take better care of ourselves. But instead, they can make us feel disappointed, ashamed, or angry. They slowly break us down and chip away at our confidence in dealing with diabetes,” says Dr. Shara Bialo, pediatric endocrinologist and a 20-year veteran of type 1 diabetes. “Every blood glucose check is interpreted as a mini-test of our abilities, and no one wants to see a failing grade, myself included.”
“Both patients and physicians gather data in an effort to better control diabetes. Data and numbers are scientific and it is only natural to look at diabetes like a concrete math problem. If you add the same elements together, you should get the same result each time. Diabetes, though full of numbers, rarely gives you the same result day after day. This is immensely frustrating for me as a patient in dealing with my own diabetes, and can be even more frustrating when I am trying to decode a patient’s glucose records in order to help them.”
Blood sugar management is truly like walking a tightrope, needing to carefully balance the numbers, and the emotions tied to those numbers. I’ve started removing the words good and bad from my blood sugar vocabulary. They’ve been replaced with in range and out of range, or high and low.
Something as simple as redefining the adjectives associated with each meter reading makes the result easier to learn from and to move past. These numbers don’t define me, and they don’t define my life. What they represent is information about my diabetes control, and they give me a point from which to start again. Low, high, or right in range, I need to stop fearing the result and instead start learning from it.
Dr. Jill Weissberg-Benchell, licensed clinical psychologist and certified diabetes educator, feels strongly about the need to know your numbers. “I don’t care what your blood sugar number actually is. I honestly don’t care. I don’t care if your meter reads ‘Hi,’ and I don’t care if it reads ‘39.’ What I care about is that you check, and when you get a number that is not in your target range, you know what to do, and then you do it.”
Sometimes getting people with diabetes to test in the first place can be a hurdle. I’ll attest to this—if I know my blood sugar is high, there are times when I don’t want to prick my finger and see confirmation of that high. That number, as Shara mentioned, contributes to feelings of having failed. And when I’m already feeling crummy as a result of the high blood sugar, the failure feeling adds insult to injury.
I spoke about that avoidance concept with Jill, and she confirmed that she hears that sort of sentiment from her patients all the time. “Patients tell me, ‘I know my number is high, and therefore I don’t want confirmation, because knowing that number means I’m a screw up.’ But some people are socialized in that way to feel that ‘numbers are everything’ and that numbers are report cards for being a good or bad human being.”
Sean Oser has been living with type 1 diabetes for 24 years and works as a family physician. One of his twin daughters was diagnosed with type 1 diabetes when she was seven, making him both a PWD, the parent of a PWD, and a healthcare professional. The guy wears a lot of hats, and it can be challenging to not see diabetes through all of those different perspectives. “Regarding ‘good’ and ‘bad’ in general, I don’t recall any specific direction about this when I was diagnosed with type 1 diabetes at 17 years old. However, when my daughter was diagnosed with diabetes 20 years later, but 10 years younger than I was at my diagnosis, her team was emphatic about one of the things I remember most clearly about the blurry day of her diagnosis: ‘There are no good or bad blood sugars; every result is just a number, and it tells us what to do next.’ This was incredibly helpful and supportive at the time, and it comes in very handy now, a few years later, during those times when she’s having a diabetes meltdown. I’ve told patients of mine the same thing when I’ve sensed they might have fragile feelings about ‘their control’ and need me to help reduce the load they carry. But my own blood sugars are definitely either good or bad. The emotional toll of dealing with so much personal data must be great, but I think we adapt to it quickly and often don’t realize—or at least we underestimate—the constant judgments we make about our numbers, and by extension about ourselves.”
So how do we fix this head game that diabetes plays with our emotions? “Prevention is best,” said Jill. “If you can’t prevent, then the next best thing is to begin to challenge those thoughts that are maladaptive or inaccurate … because they aren’t getting you anywhere. Become your own best litigator! There are all kinds of methods of treating patients that were once accepted as ‘medical knowledge,’ that we’re now, like, ‘How the hell did we ever think that way?’
How do you move past these thoughts of failure? Acknowledge the imperfect nature of insulin. And the imperfect accuracy of these blood sugar meters. Yet we base our judgments of ourselves on these imperfect measurements? There are no data to support the belief that out-of–range numbers are a result of your own personal failure as a human being. An unknown number is where the danger occurs. You can’t fix a number you don’t know.”
Shara feels that addressing the physical needs of diabetes can’t be done without simultaneously tending to the psychosocial needs. “I feel the emotional needs and the physical needs of diabetes are so intricately woven together that it is impossible to separate them. The physical aspect of diabetes affects emotion. If I do not count carbohydrates carefully and end up hyperglycemic, it physically makes me feel like
molasses and weighs me down mentally. When I have had a day full of lows, I find my mood is more fragile than usual. When life gets emotionally stressful, my blood sugar skyrockets or plummets depending on the situation. It seems as though everything affects diabetes, and diabetes affects everything.
“That is why it is so important to not ignore emotional well-being, and I believe it should be ranked above all else,” Shara continued. “You cannot have a healthy body without a healthy mind, because the mind runs the show. If it were up to me, personal and family-centered counseling would be mandatory at diagnosis and every few years thereafter. Everyone would get a psychological checkup, the same way we get physical exams each year. I have taken advantage of counseling services in the past for the sole purpose of managing the swirl of emotions surrounding my life with diabetes. I always make sure to pay the most attention to the emotional side. The physical aspect will then follow suit.”
As a person who has had diabetes for many decades, I have found once I’m in a good routine of testing and paying attention, I’m good, but it’s tough to stick with that program for months on end without a few hiccups of diabetes burnout. Burnout is a tricky little monster because it can sneak up on you and then you’re in it, without realizing how or when you ended up in that mental state. Feeling guilty and ashamed of certain results to the point where you don’t react to and act upon the numbers is a tough spot to be in, but understanding those numbers and how to fix them empowers us.
Jill talked with me about how burnout can lead to depression, and how, with practice, you can make your emotional responses actually work in your favor. “We know that depression, in part, comes from a sense of learned helplessness. ‘When I am not able to achieve my goals, despite putting energy in, I feel helpless. When I feel helpless, I feel sad and give up.’ This way of thinking leads to feelings of depression. In a diabetes sense, the thoughts can be, ‘I can’t get my numbers right. I work hard. No matter what I do, and the outcome is not what I expected or hoped for.’ Do you beat yourself up about that, or do you take stock and assess?
“You have an event—a blood sugar number, let’s say—and you have thoughts about why did this happen? And you also have thoughts about the consequences of it having happened, consequences like, ‘My parents will hate me, my doctors will yell at me,’ et cetera. Your beliefs about why this happened and what happens next drive your emotional responses and your actions. The challenge is that, if your beliefs are not accurate, then you’re feeling like a mess for no reason, and then the choices you make are not adaptive because they are based on inaccurate data. Have your feelings, but make them take you somewhere useful. With practice—and a LOT of it—you will stop and think about this, and that will give you more of a sense that you get to choose. This puts the power back to the person, takes away the helplessness.”
Shara agreed “Many of our patients let diabetes fall by the wayside and then have a really hard time successfully taking it on again. I went through my own very long period of poor control and was only able to break it thanks to some persistently patient doctors and CDEs. I apply what I learned from my experience to my patients going through the same. The bottom line is to avoid taking on too many goals at the same time.”
“For example, some patients only check their blood glucose once a day—or way less. As their physician, if I demand that they start checking six times a day, as well as to ensure insulin is administered with each snack (not just meals), and to log everything, and to exercise at least three times a week, it will feel like an impossibly tall order. So I start small. I focus on forming mini-goals and offer several from which to choose, such as testing two times a day instead of one time or taking insulin with snacks, but not both. People often leave the doctor’s office with 15 promises to do better, but that becomes overwhelming and ultimately unsustainable. Then we find that nothing changes in between visits. Instead, we can decide on only one or two goals together. Once the goal is met and conquered, we can add another.”
Jill aims to make goals relevant to her patients, to help amp up their motivation. “I work with some teenagers who are running blood sugar averages in the 300s, sometimes 400s, and I need to find a way to make it matter to them. But they don’t want to hear about complications and things later down the road—they need something that’s relevant to them, where they are now. So I will approach them and ask if they wake up at night to go pee. Of course they do. And of course they hate it. They’re teenagers, so they all want to sleep 15 hours. I am now talking to them about an experience that matters to them. So they say, ‘Yeah, I hate waking up in the middle of the night to go pee.’ This opens the door for me to say, ‘Are you willing to work with me about strategies to make that stop?’ And there it is: something relevant to them, right in that moment. It’s a goal they want to achieve. It’s meaningful, right now.”
So once you’re in a routine that is a good one, you should be good to go, right? Is it enough to be ticking off items on the to-do list, or do we, as people with diabetes, need to constantly re-educate ourselves regarding the best course of action?
Sean drives home the point that we need to do more than go through the motions. “As the years go by and we become accustomed to life with diabetes to the point that it just seems like a normal part of life, we risk letting diabetes run on autopilot. Injections may be taken faithfully, sliding scales may be followed reliably, but if there is no ongoing active thinking, we have autopilot. We should continue to hone our carb counting skills, analyze our numbers rather than simply record them, and educate ourselves about advances in management and not let autopilot assume control.”
But is there a balance between autopilot and burnout? “I have no idea how I balance the emotional and physical needs of diabetes. I’m not even sure I do,” admitted Sean. “The emotional balance is harder. Exercise helps a lot with emotional balance in general for me, including the emotional demands of diabetes, but it stretches far beyond that. I always feel better emotionally after a demanding workout. Reminding myself to set a better example for my daughter is an emotional burden, but also a motivator, and it thereby helps me maintain some emotional balance as well. The love and support of my family are essential and greatly appreciated. Those things are necessary but not sufficient, though, without personal connections with other PWDs, which is a key to my emotional balance. Before I had any such connections, exercise, my family, and my role model to daughter tightrope walk were not enough, and I wavered between autopilot and burnout, neither of which was healthy. I’m in a much better and much healthier place now, which I wouldn’t be without my diabetes friends.”
Diabetes isn’t just a physiological disease. It’s an emotional one, too. It’s not just a question of blood sugar levels and insulin supplementation. It’s about managing the emotions that come as part of life with a chronic illness. It’s about the guilt of complications. The pressure to control an uncontrollable disease. The hope that tomorrow will come without incident. I feel that the emotional aspects of diabetes need to be attended to with the same care and diligence as an A1C level, because at the end of the day, happiness is the goal.
Like Sean and many others, I have the best diabetes management moments when I feel both emotionally and physically equipped to do what needs to be done. If my head is in a good place, I’m more apt to test my blood sugar and react to those numbers in a healthy way. It wasn’t until I had access to other people living with diabetes, by connecting through the Internet and by way of diabetes conferences, that I was able to peel off some of the adjectives I had previously stuck to my blood sugar results and to see them simply as what they are—data points, not measures of my self-worth.
Balancing Diabetes is available at Amazon.
*All photos courtesy of Kerri Sparling