Hypoglycemia, also known as low blood sugar or low blood glucose, is a known side effect of insulin therapy. For people living with type 1 diabetes (T1D), hypoglycemia is a regular part of life—a very unpleasant one.

According to JDRF, most people with T1D experience at least one or two episodes of mild hypoglycemia a week. They also experience an estimated one episode of “severe, at least temporarily disabling, hypoglycemia” per year. The symptoms of hypoglycemia include sweating, shaking, confusion, and impaired thinking, among others. Left untreated, low blood glucose can cause seizures, comas, and even death.

On paper, the treatment for hypoglycemia sounds easy enough: eat something containing fast-acting carbohydrates, like juice or glucose tablets. However, in cases of severe hypoglycemia, symptoms can become so intense that the individual needs help completing even this simple task.

Having lived with T1D since 2008, I am personally quite familiar with hypoglycemia, from its short-term symptoms to its long-term effects on my mental health. According to the above estimates, I’ve experienced roughly 676–1,352 episodes of mild hypoglycemia and 13 instances of severe hypoglycemia. I have dealt with hypoglycemia at school, work, and everywhere in between.

You might think that after all this time, I would have become accustomed to hypoglycemia and its disruptive, sometimes scary effect on my daily life. However, this is much easier said than done.

What Is Fear of Hypoglycemia (FoH)?

For people living with T1D, myself included, the constant threat of low blood sugar can take a significant toll on mental health. Many develop “fear of hypoglycemia,” or FoH, which describes a strong aversion to and avoidance of low blood glucose. FoH has a serious impact on wellbeing and may even be linked to certain mental health conditions, such as generalized anxiety and depression.

FoH is also common among parents of children with T1D. As one 2017 study for Pediatric Diabetes reports, “The greatest worries of parents of young children with T1D were related to hypoglycemia during sleep and other times/circumstances during which it would be difficult to detect hypoglycemia.”

The term FoH encompasses not just fear, but a whole range of negative emotions associated with low blood sugar. In a study conducted with T1D Exchange’s Glu population, participants reported feeling “frustration (78.1%), embarrassment (59.5%), fear (45.1%) and worry (42.3%)” in relation to hypoglycemia.

Put into context, the results of this study indicate that people with T1D aren’t just afraid of being incapacitated by severe low blood glucose: We also loathe the disruptive effect of milder hypoglycemia on our day-to-day lives and relationships with others.

Avoidance Behaviors and Their Consequences

Avoidance is the natural result of any aversion, and FoH is no exception. The best way to avoid FoH is to avoid low blood sugar itself—and that usually means choosing high blood glucose rather than risking low blood glucose.

This occurs in the form of “avoidance behaviors” such as overeating, underdosing insulin, or limiting exercise. These behaviors can be more strongly associated with circumstances where hypoglycemia itself is more likely, such as when playing a sport or engaging in other vigorous activity. Personally, I’m most likely to engage in such behaviors at times when it would feel socially inappropriate to treat a low blood sugar, such as during ceremonies, performances, or important meetings.

FoH is a stressful emotional state, but it is damaging to more than just mental health. Avoidance behaviors also have a serious impact on diabetes treatment outcomes, leading to increased glycemic variability, which is associated with long-term complications. It has a measurable impact on quality of life for people with T1D.

Preventing and Addressing FoH

Perhaps the most important factor in reducing FoH is prevention of hypoglycemia itself. Several advances in medication and technologies have the potential to do just that. From newer analogue insulins, to pump delivery systems capable of suspending insulin doses, to continuous glucose monitors (CGMs) with alerts, there are many treatment options that can help reduce the risk of hypoglycemia. There are also other promising advances on the horizon, such as “smart” insulin.

Research has yet to establish a clear relationship between CGM use, hypoglycemia incidence, and FoH. In my own experience, using a CGM has significantly reduced the frequency and severity of my hypoglycemic episodes. As a result, I also experience less FoH. Although I still struggle with avoidance behaviors—especially in certain social settings—I feel much safer knowing that my CGM will always alert me to drops in my blood sugar.

Still, no matter how much technology advances, it is hard to imagine any version of insulin therapy that doesn’t involve at least some hypoglycemia. This is where therapeutic mental health interventions may prove useful. T1D Exchange recently shared a new FoH screening tool that has the potential to help healthcare providers identify those who need additional support coping with FoH. Researchers are also investigating the use of cognitive behavioral therapy (CBT) and other evidence-based approaches to address FoH and reduce harmful avoidance behaviors.

Combined with open dialogue between patients, their loved ones, and healthcare providers, these therapies have the potential to holistically improve the health of people with T1D.