Navigating Guilt Around High Blood Sugar
By Kerri Sparling
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Diabetes author and advocate Kerri Sparling shares her complicated feelings about living with type 1 diabetes, plus how to detach from negative emotions like guilt and shame around high blood sugar.
Why is talking about high blood sugar so hard?
I find it easier to talk about low blood sugar. Sharing tales of shaky hands, foggy brain, and juice boxes consumed in seconds helps me process the emotions of a low. I also find community in the shared experiences.
While lows are sometimes unnerving, I never felt really guilty about them; they feel like an accident, something I stumbled into – a byproduct of trying to keep my blood sugars as close to in range as possible.
In contrast, the feelings of guilt I associate with having high blood sugar (hyperglycemia) stem from my perceiving it as a result of poor choices like miscalculating a bolus or poking into the junk food cupboard. A low, on the other hand, I don’t feel guilty about because it can be the byproduct of exercise (for example) – a positive action taken in pursuit of not being high.
While consistent highs can be credited as a cause of diabetes-related complications, saddling the experience with so much negative emotion can make managing and mitigating highs harder.
“Highs definitely have a shame quotient attached, like I am both causing them and being irresponsible for having them,” said Mary Marshall, who lives in Michigan and has had type 1 diabetes for almost 20 years. “Lows feel like they elicit more sympathy, like they are accidental.”
The emotional baggage of high blood sugar
“I know it isn't logical, but highs are difficult for me because there's a sense of blame or guilt,” said Caroline Sheehan, an NYC resident who was diagnosed at the age of 17. “Highs are me being a ‘bad diabetic,’ but lows are not.”
Note the term “bad diabetic.” So many people used this language, and almost all of them used quotation marks to distance themselves from it. It came up on repeat, showcasing how challenging it can be to remove emotions from a disease that constantly provides “negative” performance feedback.
Meagan Sheikh, a Philadelphia resident and nurse who was diagnosed at 2 years old, described her feelings about high blood sugar.
“There are foods that even if I cover correctly just send me sky high,” she said. “My personal narrative is, ‘You should have skipped that cake – this high is your fault.’”
“Highs feel sneaky somehow,” added Sarah Mart, a Colorado resident who was diagnosed with diabetes 40 years ago. “Emotions and stigma are so tied to the language we hear others use about us, and for highs seem much more attached to personal responsibility.”
Mart often has people tell her she needs to bring her blood glucose down. But how should she do that? It’s always a case of individual responsibility.
“Movement, but not too much and only the right kind, not eating, and then waiting for that pesky insulin to work,” Mart said, repeating the advice she frequently hears. “I wish there were only science and no morality (bad or good) attached to diabetes care.”
The emotional weight often tied to hyperglycemia extends to caregivers, as well.
“As a parent, there was always a lot of judgment around highs,” said Michelle Campbell, whose son was diagnosed with type 1 diabetes in 2005. “Lows you can’t control, but highs were somehow in our control. So much shame and judgment. Too many lows can contribute to a nice A1C, so no one cares. It’s all about the A1C.”
Taking the emotion out of numbers
Having lived with diabetes for almost 37 years myself, I thought back to discussions with my clinicians about A1C and time in range.
For every A1C result, I’d think “Oh, that’s good!” or “I’m the worst” – depending on the number. The self-worth baked into those results goes back to my diagnosis in 1986 when I was repeatedly told that I had the tools to manage diabetes and just needed to be compliant.
“As healthcare professionals, we have not traditionally done a good job in this arena,” said Dr. Tamara Oser, associate professor in the Department of Family Medicine at the University of Colorado Anschutz.
“There has historically been a lot of blame and shame with terms like ‘non-compliant’ thrown around. Most healthcare professionals simply don’t know how hard it is to manage diabetes and that you can be working so hard and still have numbers out of range,” Oser said.
Oser said she tries to take the emotion out of numbers, which can have no correlation to how much someone is taking care of themselves. “They are not good or bad – they are just information.”
There are also so many factors that can influence glucose levels and diabetes care, such as the ability to afford nutritious food, access to a safe place to be active, the need to hold multiple jobs, language barriers, and lower health literacy.
On top of that, there’s the pressure of keeping up with so much daily data from devices like continuous glucose monitors (CGM).
“The increased access to diabetes data can sometimes make diabetes distress worse,” Oser said. “It’s really important for healthcare professionals to acknowledge this and problem solve with the patient together.”
How to manage emotions tied to diabetes data
As people with diabetes, language around diabetes matters. The more we talk about emotions and the mental load of diabetes, the more our overall health will benefit. Finding a clinical provider who specializes in mental health can help open up discussions about the emotions we have around high blood sugar and strategize ways to wrangle feelings in.
“If patients are completely burned out or have many external barriers, asking permission to discuss the data is something I often do,” she said. “I ask, ‘Would it be okay if we talked about your CGM data today?’”
Dr. Korey Hood, professor of pediatrics, psychiatry, and behavioral sciences at the Stanford University School of Medicine, works with kids, parents, and adults to separate their emotions connected to device data and the general experience of living with diabetes.
“Strategies to help depend on the root cause of the emotion they’re experiencing. That’s the first part – to see where the emotion is coming from,” Hood said. “I use a lot of problem-solving approaches where we identify the negative emotion, why it’s happening, and put a plan in place to address it.”
For people with emotions tied to devices, Hood recommends monitoring on a set schedule so there are some guardrails around looking at data. This involves fine-tuning alarms and alerts on a CGM.
“A diabetes number does not define who you are,” he added. “One result does not mean your whole day is going to be that way.”
The bottom line
It's a clumsy process of uncoupling guilt from our glucose numbers and giving ourselves some grace. I have worked to employ terms like “out-of-range range” instead of “bad,” and to not let a high blood sugar episode derail my sense of self-worth.
But it’s still tricky here and there. Finding support for mental health has made it easier for me to view diabetes data through a less emotional lens, take action (without guilt) if I have a high, and help me feel healthier overall.
“Acknowledge that having diabetes and access to constant data can be hard,” Oser said. “Talk about the data as being just one piece of diabetes, and celebrate victories – even if they’re small."
