Anxiety & Type 1 Diabetes: Why It Happens & What to Do About It

Generalized anxiety in people with diabetes is a thing. Here, an expert explains the connection and offers tips to overcome it.

sad man looking out the windowSome people with type 1 diabetes worry incessantly about all the things that could go wrong with their health. As a result, 20% of people with T1D have generalized anxiety disorder (GAD)—a clinical condition. (Photo:123rf)

Few conditions have a closer connection to anxiety than type 1 diabetes. That's largely because there are so many "what ifs" triggering the constant worry of managing a 24/7, high-maintenance disease that has a minute-by-minute impact on your immediate and future health.

Type 1 diabetes is the number one ingredient for a daily bout of anxiety, especially the more attention you pay to it.

Not only do we have to worry about what today’s blood sugars will do to our wellbeing 10 or 20 years from now, we also have to worry about how the food we ate just moments ago, or the exercise we’re about to do, or the insulin we took an hour ago is going to impact our blood sugar.

Low blood sugars feel like (and are) immediate danger—it's as if an internal alarm sounds saying: Feed me! Feed me! Fast! Quickly, before time runs out!

High blood sugars feel like failure, like maple syrup running throughout our bloodstream, rotting us from the inside-out.

Every minute of the day, for the rest of our lives, diabetes demands a necessary degree of worry. In fact, that worry is what helps motivate us to take care of ourselves. If we didn’t care at all about the consequences of neglected blood sugar levels, we’d get sick—fast.

How Daily Worries Trigger Anxiety

But there’s a certain point at which that worry becomes anxiety. Your diabetes-related anxiety may be the result of and about a specific aspect of diabetes, or it may be about the whole big blood sugar fiasco altogether. Regardless, it’s not uncommon, and it’s worth taking a closer look at--especially if it’s impacting your ability to take care of your blood sugars.

“Anxiety is actually really common in people with type 1 diabetes,” explains Mark Heyman, PhD, CDE. Actually, Heyman would know, because not only is his entire career focused on counseling people with diabetes, he was diagnosed with type 1 nearly 20 years ago, in 1999.

“Anxiety really comes down to being worried about things that are going to happen to you in the future” adds Heyman. “And type 1 diabetes encapsulates that perfectly.”

Anyone with type 1 diabetes knows the overwhelming number of tasks that need to be checked off everyday to manage your diabetes. Heyman says, that alone, can easily cause anxiety.

Diabetes creates the potential for worry in nearly every part of our daily lives. There is a constant voice in the back of our heads saying: today’s blood sugars could be hurting your kidneys, your eyes, your fingers, your toes—everything. It’s a non-stop threat that we are always trying to stay on top of.

And it’s a lot of work.

“It is constant mental gymnastics to have to figure out how to do anything around diabetes, and there’s always that worry of ‘what if I do it wrong?’ ” says Heyman.

In fact, Heyman says anxiety is common enough that approximately 20% of all people with type 1 diabetes have generalized anxiety disorder (GAD)—a clinical condition.

“People with type 1 diabetes are definitely more prone to developing GAD—which isn’t about one specific thing, but more a constant worry about the future, whether that’s 5 minutes from now or 15 years from now.”

What Fear Can Do to Your Diabetes

While generalized anxiety implies that a person is experiencing an overall level of emotional stress and worry about many things in life, related specifically to diabetes or not, there is also a unique experience of anxiety specific to people with diabetes would may develop mild-to-moderate anxiety diabetes-related issues such as:

  • Fear of needles and injection pain
  • Fear of CGM sensor or insulin pump infusion site pain
  • Fear of high blood sugars
  • Fear of low blood sugars
  • Fear of certain foods (rice or pizza, for example)
  • Fear of all carbohydrates
  • Fear of CGM arrows (UP, UP, UP...then all of a sudden sideways)
  • Fear of low blood sugars during school
  • Fear of low blood sugars during work
  • Fear of dosing insulin for foods without nutrition labels ( parties!)
  • Development of a specific diabetes complication

“Fear is really just another word for anxiety,” explains Heyman. “And trying to avoid that feeling of fear by avoiding that aspect of diabetes management can become a real problem.”

In other words: avoiding it doesn’t help mediate your anxiety, and it certainly doesn’t help you live your life well as a person with diabetes.

When Hypoglycemia—Real or Imagined—Leaves You Traumatized 

Easily the most common and most acute focus of anxiety for many with type 1 diabetes is a fear of low blood sugars. Hypoglycemia can be very scary, because even when you’re sitting there with a juice box in your hand and clearly managing the situation, your brain is telling you to be scared, to do everything you can to save yourself.

However, while none of us likes low blood sugars, you know that normal level of fear has become anxiety when you’re either testing your blood sugar constantly, your emotional reactions around low blood sugars are severe and irrational, or you’re purposefully running your blood sugar high all day long to lessen the risk of hypoglycemia.

“There are two categories of folks when it comes to anxiety around low blood sugars,” explains Heyman. “The first group is those who’ve had a severe low blood sugar that led them to needing glucagon or being hospitalized. These patients really do have symptoms of PTSD (post-traumatic stress disorder). They’ve experienced a truly traumatic event.”

We all know what the recovery from an everyday “bad low” feels like when we were able to treat it by merely eating a banana, but waking up after being unconscious from a severe low blood sugar can leave you with a new level of fear that can become incredibly debilitating. 

“Of course, you’ll want to do everything you can to avoid letting that ever happen again,” says Heyman. “But I try to help patients step back at really look at the context of what happened in order to regain a sense of confidence in their ability to manage their blood sugars.”

How Can I Become Confident Again? 

What caused the severe low blood sugar event? And what can you do in the future to prevent it from happening again—besides, of course, running your blood sugars high all day which is NOT recommended.

“Most of the time, we can find the specific cause and the context of the event so they can see that it wasn’t random,” explains Heyman.

For instance going for a run right after dinner without cutting back on your dinner bolus is a mistake you aren’t likely to repeat.

“The second category of folks with a strong fear of hypoglycemia are those who’ve never had a severe low event, but they’ve read about it, seen it, or heard of what it might be like, and they fear that they won’t be able to handle taking care of themselves if that happens to them,” says Heyman.

Learning to Feel Normal at Normal Blood Sugar Levels Again

In either group, this fear becomes a bigger problem when you begin to run your blood sugars purposefully and daily around at least 200 to 250 mg/dL to serve as a mental safety net.

“This creates another issue because your body gets used to being that high, and then when you do come down to even 150 mg/dL, you’ll feel symptoms of a low blood sugar.”

The physical symptoms are real but there is no actual danger of hypoglycemia at these numbers. Your body is not going to have a seizure of unconsciousness with a stable blood sugar of 150 mg/dL or even 100 mg/dL but when you run your sugars high, your body gets accustomed to that and as a result mistrains your brain to feel symptoms of hypoglycemia when you aren't actually in real danger.

And then, of course, your brain and body is telling you that you’re low, so you treat the 150 mg/dL with carbohydrates as if it’s truly low, sending you back up over 200 mg/dL. Perpetuating the problem and putting your long-term health at risk.

Controversial Yet Effective 

Heyman’s approach to helping patients overcome their ear of low blood sugars is controversial but a powerfully effective process.

“The overall goal is that we help them bring their numbers down step by step,” says Heyman. “Tolerating the false symptoms of a low at 150 mg/dL is critical. If you can handle the uncomfortable stage of this for a little while, you’ll get through it and start to feel normal at normal blood sugar levels.”

What’s so unique about his approach to this process? He will help you purposefully induce a low blood sugar while you’re right there in the safety of his office, which inevitably helps you rebuild confidence in your ability to treat and manage hypoglycemia.

“I like to send people low in my office in a very safe and controlled way, with lots of glucose on hand,” explains Heyman. “People struggling with this keep telling themselves, ‘If I’m low, I’m not going to be able to handle it and treat it.’ So we give them a safe opportunity to change that belief.”

The result is that patients see real-life proof of their ability to identify and treat a low blood sugar.

Heyman said he also helps patients develop different habits around diabetes so they feel more empowered on a daily basis where the risk of hypoglycemia is always real:

  • Be prepared for lows by putting fast-acting carbohydrate snacks everywhere. Your glove compartment, your office desk, your purse, your nightstand, your bathroom, your spouse’s car, etc. Knowing you’ll have what you need for any low inevitably creates confidence. *Ginger’s Tip: Snack-sized package fruit snacks or jelly beans are great for treating a severe low. They don't rot, freeze or spill in a purse, and can be easily tucked in every nook and cranny.
  • Ask yourself: What really qualifies as a low blood sugar? Doing this will help you feel empowered—not fearful. And remind yourself regularly of the real, unhealthy long-term consequences of persistently high blood sugars.
  • Learn more about the causes of low blood sugar and how to prevent them. Educate yourself around activities like exercise, and improve how you calculate the amount of insulin you need for your meals. If you’re constantly dropping low during exercise, it’s worth investing in a diabetes coach to learn how to manage your blood sugar around different types of physical activity! (*Check out: Diabetes Strong, Daniele Hargenrader and Fit4D.)

For improving more general anxiety, here are some tips for Heyman:

  • Identify your personal symptoms of anxiety. For some it might be sweaty palms, hyperventilating and crying. For others it might look like anger. Write those symptoms down, and commit to identifying them when they happen. For example, even as you sit there crying during an anxiety attack, tell yourself: I am crying because of anxiety. This is an anxiety attack. And because symptoms like sweating and shaking come with both anxiety and low blood sugar, use your glucose meter to identify what’s really going on.
  • Take a step back to identify the thoughts that are creating or contributing to the anxiety. “A lot of anxiety is simply caused by our thoughts,” explained Heyman. If you keep telling yourself that you’re going to die because your blood sugar is 50 mg/dL, that pattern of thinking is creating your anxiety, and it’s time to change that. Grab the juice box (or other fast-acting carbohydrate) and remind yourself that you can do it. You ARE capable of treating this low blood sugar.
  • Look at your thoughts realistically and consider the logic of your fear. “What’s the evidence for this belief or thought you have, for example, that you’re going to die of diabetes complications next year?” When you are calm, look at this fear and anxiety in an objective, logical way—and perhaps even discuss it with a friend who understands real life with diabetes. It can be helpful to explain it out loud.
  • Slow down and try meditating. Or simply take a deep breath. Calming your mind will reduce the symptoms of your anxiety whether it’s crying or yelling. Become more present by placing both feet on the floor and focus on the moment right now—not the future—not the what-ifs, but just where you are right this second. Forming a habit of working through your anxiety in a calm manner is critical. Just like you have a habit of turning off the kitchen light to save money on your bill when you leave for work, you can create a habit of taking a deep breath, putting both feet firmly on the floor, and taking another deep breath when you feel anxiety creeping in.

When to Seek Professional Help

Experiencing any of the following 5 scenarios indicate you should look into receiving professional help with your anxiety:

  1. If the anxiety is not going away on its own, and what you’ve tried so far to help manage it is not helping or is actually making it worse.
  2. If you find that your anxiety is impacting your ability to function in the world, including at work, at school, in relationships, etc.
  3. If you refuse to go somewhere like school or work unless your blood sugar is over,  250 mg/dL, for example, because that’s the only way you feel protected from hypoglycemia.
  4. If it’s clearly sabotaging your diabetes health. If you A1c keeps going up and up and up, or is sitting consistently well above 8% because your anxiety interferes with your ability to manage your blood sugars in a healthy range, this is a BIG, BIG, BIG sign that it’s time to enlist a therapist.
  5. And lastly, simply put: the more severe the symptoms the more likely it’s time for professional support. A lot of crying? A lot of yelling? A lot of hyperventilating? Get help as soon as possible.

Treating Anxiety with Medication

Heyman adds that pharmaceutical drugs can certainly be helpful for treating and managing anxiety, but if your anxiety is truly related to diabetes, a medication alone isn’t going to help you. You’ll still need to work on thinking about that aspect of diabetes more logically, more confidently in order to gain a more balanced perspective that reduces or prevents anxiety altogether.

In his own life with diabetes, Heyman says he tries look at the positives of having diabetes. “We focus so much on the negatives—and there are a lot of them—but what has diabetes given me that I wouldn’t have at all if I didn’t have diabetes?” he asks himself. “I live a very healthy lifestyle because I feel better and my blood sugars are better. I can’t say I would be as mindful of my health if I didn’t have diabetes. And I’ve met wonderful people and have a great career because of my diabetes. I have gratitude for what diabetes has given me while also recognizing that it’s certainly a huge pain in the a** sometimes, too.”

Updated on: February 7, 2019
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