This article was published on Diatribe.org in May, 2023. https://diatribe.org/how-to-change-your-attitude-about-diabetes
by Lauren Plunkett RDN CDCES
Are you feeling angry and fearful about diabetes? There’s a way to channel that negative energy into something productive and motivating.
“My blood sugar was great yesterday, but today, I have absolutely had it. I’m all over the place. I’m putting the work in and still, my blood sugars will not stop moving. I am so pissed!”
If this resonates with you, perhaps you’re recalling that voice of criticism inside your head going off about time in range or a high blood glucose spike. If you beat yourself up over it, or lashed out at someone, you are not alone; you’re experiencing diabetes distress, or the way in which diabetes can fuel anger and frustration.
Sarah Jenkins, 22, has type 1 diabetes. Though she is familiar with nutritional recommendations for diabetes and studying to become a registered dietitian, she still describes feeling angry at her body for not being able to work for itself and the effort she puts into self-management for small returns.
“When I’m struggling, it feels as though everything that happens with my numbers is my fault, which can make it easy to spiral when things aren't going well,” Jenkins said. “I recently had my first experience with [using] expired insulin, [which resulted in] blood sugars close to 300 for hours on-end, even when I continued trying to correct them. This was frustrating, and I felt so helpless because the one thing I knew to do to lower my blood sugar wasn’t working.”
Jenkins admits she is disturbed by the power that diabetes has on her quality of life and that she often judges her efforts as either good or bad. “I rarely reward myself for being in range but punish myself when I am not in range. The rest of my life has to be put on hold until I get my numbers figured out, and I don’t enjoy that.”
Even though she recognizes that in this situation expired insulin—not carbohydrate miscalculation or lifestyle choices—was the cause of her high blood glucose, Jenkins still views diabetes as a game that can never be won yet never ends. “Diabetes can be exhausting; it makes you want to give up and just deal with the consequences of high numbers but that in itself has its own consequences,” she says.
What’s lurking behind diabetes distress: anger, fear, and loss of control
To combat fear, we may want to acknowledge what we’re truly feeling: anger over a lack of control.
Being in control (of both blood glucose and of emotions) or losing it is intertwined with fear. A 2018 study that used movie clips to provoke an emotion found that the induction of fear significantly increased participants’ self-reported anger. The part of the brain that responds to fear interacts with an external orientation, meaning that anger doesn’t spring from thin air but is inspired by a subsequent emotion, such as fear. The participants experiencing negative visuals and language is what drove feeling afraid, followed by anger. Anger stands in the way of compassion, forgiveness, and self-efficacy, or a belief in the ability to care for oneself.
Another 2018 study found that fear and worry are the dominant feelings that affect quality of life in young women with type 1 diabetes; however, as self-efficacy increases, so does quality of life. The way a person thinks about reaching goals and their ability to think positively is an example. This would be a time when your inner voice drop-kicks criticism and says, I know it’s tough sometimes, but you’ve got this!
Life feels heavy when self-worth is tied to data
People with diabetes often put pressure on themselves to maintain a thumbs up from their providers. Measurements like body weight, labs, and time in range, present numerical values often laced with judgmental language. Good, bad, high, low, in range, above range, or poorly controlled can certainly inspire anger.
Tyler Myers, 29, has lived with type 1 diabetes since he was seven years old. He works as a sound effects editor for a firm in Missouri, is a dedicated cyclist, husband, and father of a one-year-old. He likes numbers and is goal-oriented. Setting small goals related to blood glucose builds confidence, helping him stay on track. However, goal-setting sometimes feels like a desperate act just to maintain his attitude towards glucose data.
“It’s kind of my way of saying that I don’t feel like I control this anymore, I have to get some help,” he says. “At that point, I feel scared, shameful, selfish, irresponsible, and frustrated.”
Myers associates anger with glucose fluctuations that influence his actions, when the shift in his personality as a result of hyperglycemia becomes evident. “I don’t want attention when people try to help, and I’m rude about it. I’ve learned to not talk when my blood glucose is high,” he says. “I’m like a different person; lethargic and achy. I feel impatient and out of control waiting hours for my glucose to come down. This typically leads me to ‘rage bolus,’ then I end up fighting lows an hour later.”
A flood of thoughts about long-term complications come to mind for Myers. “You feel like you aren’t good enough or able to handle the task you’ve been given. Even if they’re self-imposed, there are unrealistic expectations to manage it perfectly. All of these thoughts coincide on top of the lethargy and achiness, which tend to overload emotions and turn into a big mess of frustration. You wish people understood, so you don’t have to explain.”
Finding a supportive care team
Myers has a history of difficult experiences with doctors. Recalling the time he heard his endocrinologist reprimanding a young man with diabetes on the other side of the wall, he says, “I remember hearing the doctor go through a list of everything that would happen to him if he didn’t get things under control. I was scared to death to be seen next.”
After this experience, Myers was matched with a different doctor. One who listens intently and challenges him with attainable goals. “He’s healed a lot of endo trauma I’ve carried since childhood,” he says. “I feel like he not only understands how hard it is, but is also proud of the work I put in even if the numbers don’t show.”
Acknowledging, and then discarding, unhelpful thoughts
Difficult experiences managing diabetes can be like isolated moments of trauma depending on the individual. And these moments add up overtime. Separating unsupportive thoughts while leaning into hopeful thinking is a survival skill.
Dr. Sam Marzouk, clinical child psychologist and owner of Promethean Psychology in Edina, Minnesota, describes how we can shift our thinking to work through distressing events, like Jenkins' anger towards her body or Myers' experience with his endocrinologist. The choice to ‘rage bolus’ by taking fast acting insulin doses too close together is an event that goes against an individual’s better judgment. And yet, anger towards hyperglycemia prevails.
“The meanings and interpretations we assign to events, rather than the event itself, have a greater impact on our emotional well-being,” Marzouk says. “You are not your thoughts. Thoughts are not facts. We can shift them as we think about the way we talk to ourselves. As human beings, we are often fused with our own thoughts, easily accepting them as truth.”
He added, “Once we become aware that many of our thoughts are mere mental noise and distortions of reality, we can take steps to separate ourselves from such thoughts. One way I like to do this is by imagining the thought externally, coming from a silly or goofy source.”
Transitioning a thought from boiling anger to knee-slapping humor takes practice. Think of any fictional character that makes you laugh. You might tell yourself that you’re a failure for a variety of reasons, but what if Derek Zoolander, Shrek, or Chunk from the Goonies, was saying it? Maybe then you could take it less seriously to cool your temper.
When rage becomes your best resource for glucose management
Coping with emotions and changing our thinking to become positively proactive is a skill that anyone with diabetes can master.
Elaine Norton is an avid runner, veterinarian on the faculty at University of Arizona, mother of two, and has lived with type 1 diabetes for 35 years. She recalls managing her health during her first pregnancy and how she battled with her endocrinologist about presenting a perfect A1C.
“The whirlwind of hormones was making it impossible to maintain consistent blood glucose. It became a guessing game with my food and insulin dose, while worrying how it was affecting my son. This led to anger and feeling out of control.”
A few months into pregnancy, Norton’s A1C was higher than the goal her doctor expected her to maintain (six percent or lower). As a result, she was accused of not trying hard enough and putting her baby at risk. “No one could actually tell me how to adjust my insulin, but I was lectured (to) and I was furious,” she says. “I sat on the table in a paper gown with bruised fingers from constantly testing. My hands were shaking and I just wanted to scream and cry because I felt like I couldn't win.”
At five months pregnant and hot off another clinical reprimanding, Norton turned her anger into action. “All of that rage had a good purpose,” she says.
“I kept running, tracking my blood sugar, adjusting insulin doses, and finally was able to get my glucose under control,” she recalls. “I felt like I was back to myself again. I continued to let the rage out on long runs and I completed a half marathon at eight months pregnant.”
Norton describes everlasting “doctor induced mom-guilt” and how “the voice in the back of my head wouldn’t shut up about glucose values”—thoughts she has carried with her to this day.
No other disappointment quite compares to an endocrinology visit that inspires self-loathing. At the root of unpredictability in diabetes is often shame and loss of control, causing one to question their own judgment and decision making. At the same time, an individual can feel fiercely motivated to reach personal health goals like running a half marathon.
Psychotherapist Ralph De La Rosa, Author of Don’t Tell Me To Relax, describes Norton’s affective use of rage as a resource: “You can absolutely not believe in yourself, be afraid, be in pain, and hate it all, and still take the next step anyhow. It’s okay because we bounce back, we’re resilient. We are built for such things and the voice we heed is the voice that will get stronger.”
You may not always feel positive, but negative thinking doesn’t have to determine your story. Even in the face of anger, fear, or loss of control, we keep going. Meanwhile, your intuitive inner voice as opposed to the inner critic, has your back from a growth and character building perspective. Confidence and self-reliance often blossom from the most difficult events.
Changing your inner narrative around diabetes
The next time you feel steam coming out of your ears over time in range, what story are you going to assign yourself?
Remember: Time in range is not a symbol of self-worth, and your A1C does not limit your ability to become the person you want to be.
Acknowledging thoughts and the need for emotional care is a recipe for building resilience. To keep up with the “adventures” that life with diabetes entails might require a check-in with your dark side as a catalyst for change.
Becoming aware of why we feel what we do is a practice of intrinsic empowerment. In a position of anger, facing the fire breathing dragon of red hot rage is where we could find a way to love ourselves into moving forward.
What we may choose to take away from anger is self-compassion. Unexpected growth in life can be inspired by our worst experiences, while resilience is a muscle often expanded as a result of emotional turmoil.
And now, your diabetes toolkit includes a personalized recipe for resilience: the heightened awareness of your own thoughts mixed with an element of forgiveness, and garnished with an unbreakable attitude.
Take the opportunity to feel good about your blood glucose. You earned it.