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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.
I definitely understand where you’re coming from. As another commenter mentioned below, at least it’s nice to know that many researchers look at the term “fear of hypoglycemia” as encompassing more than just actual fear. However, it is troubling to know that physicians with experience in diabetes care would overlook the real physical struggles that cause “FoH” (or whatever you’d like to call it) in the first place. A funny but apt comparison: If you had a shark living in your bathtub and were therefore afraid to bathe, it would be really, really off-base if the proposed solution was to send you to therapy instead of helping you get rid of that shark!
I suppose there is an argument to be made for the importance of having a name for a specific phenomenon (in this case, well-warranted aversion that leads to avoidance behaviours), but whether the name itself is accurate is a whole other question…
Great article Taylor!!!
I’m glad the Glu study specifies other emotions can be just as powerful as fear (frustration, embarrassment, and worry” apply to me.) I’ve never in 30 years of T1D felt scared about dying or even passing out. (I’m lucky that I usually feel a low by the time I’m around 50 and know that hypo unawareness probably creates more fear.) It’s just the disruption to my day/life.
I’d say FoH is the #1 reason I have a higher A1c; even with intensive bg monitoring and even on a closed-loop system I STILL have frequent disruptive lows (working on this.) I much preferred life with an A1c in the high 7s and fewer lows, to my A1c in the low to mid 6s.
Thanks for reading, Karen! Really glad you enjoyed it. Up until last summer, when I had a low-induced seizure, I had also never felt any fear about dying or passing out. That was a bit of a wake-up call for me that hypos are more than just embarrassing or inconvenient. Now that I have a CGM, though, I must admit most of my FoH is around social anxiety and general worry about disruptions to my day rather than actual fear of something terrible happening.
I totally agree that there’s a balance to be struck when it comes to overall outcomes (A1C level) vs. disruption to your daily life. I do think that using time in range as a measure instead of A1C helps with this a lot, though! I used to have an A1C in the low to mid 7s, but I was constantly yo-yoing. My A1C is not *that* much lower than it used to be, but my time in range is much, much higher, and that means far fewer disruptive lows!
I’ve had FoH since the first day I was dx in 1982. I’ve lived with it and feared it every single night, knowing I might not wake up the next day. That’s a heavy load for a 10 year old to take on, and I kept that to myself for about 20 years. I’ve always overeaten at night to avoid going low during the night. About 3 months ago I got the Libre 2. I had the first Libre which helped some, but the Libre 2 has been a game-changer. My husband helps me to remember that if I go low my FGM will wake me up. If he’s up during the night he even checks it for me. I’m finally learning to let go of the fear, even if it has taken me almost 40 years.
That’s incredible! I’m so glad it’s helping you address the very valid fear you’ve carried all this time. My CGM has also made a world of difference, especially at night! I use a Dexcom, and I can’t imagine going back to finger sticks. It’s also so nice that your husband can help reduce some of your burden.
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Thank you! I’m so glad I’ve found your articles. This definitely relates to your article on DEB. CGM has both helped but also added to anxiety because now I can watch and obsess more on the numbers. The positives of CGM/alarms way outweigh the added anxiety though.
After 50 years of T1 my behaviors have changed. When I worked and had little children and no CGM’s, I kept my BG high to avoid lows because I felt responsible for care of my kids. After CGM, control was much better but as I get older and live alone I find myself going back to keeping BG higher to avoid scary dangerous lows. I do agree with the dilemma regarding “brittle diabetes”. It is a fact of life and very real. I have always been extremely insulin/carb sensitive which makes managing time in range and avoiding lows near impossible, or at least a frustrating struggle. A tiny dose can drop me hard and fast. And to sum it all up, the results of this issue are the reason why I live with the dreaded debilitating diabetes complications that I have now.
Thank you so much for ready both articles! I’m so glad they’re resonating with you. I also go through phases, especially when I’m busy, where maintaining higher BGs seems like the lesser of two evils compared to risking lows. But it’s not exactly fun having high BG all the time either, so sometimes it really does feel like there’s no winning…
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I think the label “fear of hypoglycemia” is troublesome and should be discontinued.
The problem is that this label can and often does make a physical problem sound like a psychological problem. “Fear” makes behaviors seem irrational but in many cases hypo avoidance behaviors are entirely rational and indicate an underlying problem.
Many endocrinologists labelled me as having a “fear of hypos”. I don’t have a fear of hypos. I have two problems:
1. Unusually unstable blood sugars
2. Extremely destructive and disruptive hypo symptoms (a mild hypo affects me for days)
As a result I go to extreme lengths to prevent hypos. But the phrase “fear of hypos” meant I didn’t get the help I needed for a decade. I don’t need to see a therapist. I need an endocrinologist to get to the bottom of my tectonic insulin needs and I’m seeing a neurologist to try to get to the bottom of why I’m so sensitive to hypos.
I should add that some people abstain from certain types of exercise or other activities because even with appropriate management they almost guarantee hypos. Endos tend to jump to the label “fear of hypoglycemia” but it’s not appropriate because it makes it sound like a psychological problem.
Unfortunately the phrase “brittle diabetes” has become taboo, which means people with unstable diabetes often slip through the cracks and don’t get the attention they need. “Brittle diabetes” became taboo because it led to HCPs giving up on helping certain patients. Deleting the phrase is a mistake because it makes the patients even more invisible.
On the other hand, we should eliminate the phrase “fear of hypoglycemia” and replace it with more specific determinations like “hypoglycemia anxiety”, “excessively disruptive hypos” and “trouble with hypo prevention”.