I lived in fear after being diagnosed with diabetes. Most people don’t know the fear that comes with being told that if you make one mistake, you could die. A tightrope walker may fear to fall off, but they made a choice to walk the tight wire, and within a minute their walk is over. Some tightrope walkers even use nets in case they fall and have years of training under their belt. They choose to risk their lives. When diagnosed with diabetes the fear is intense, because there are no nets, no years of training, you are given a few instructions and cast out into the world. How we deal with fear is different for everyone.
In my previous two blogs, I talk about the problems caused by high blood sugars and forgetting as well as misunderstandings within one’s family. Today we are going to address the fear of living with diabetes and the problems that irrational fears cause.
The behavior of keeping blood sugar levels high seems, and may even be irrational behavior but, don’t underestimate how powerful fear is. Fear can make the most responsible and rational person do some crazy things.
When it comes down to it, we all have fears. How do we get past them to prevent from being hurt? If you’re afraid to do something or what might happen in the future, it is important to get all the facts.
Fear of being alone or fear of the unknown can prevent a person from leaving an abusive relationship. It can prevent a person from leaving their home. Fear of losing one’s job can cause a person to overwork, stay late every night, avoid taking care of their physical health, causing them to burn out and possibly lose the very job they’re trying to keep.
Intense fear can distort one’s reality and causes poor judgment. Fear may or may not be real. If you are on a safari in Africa being chased by a lion or you’re woken up by the fire alarm and see smoke, concern and feeling fear would be the right response. But not all things that cause fear are as clear-cut.
The year was 1977, and I was about to turn six years old. For my birthday, my babysitter brought me a big plate of chocolate chip cookies. By the end of the day, I ended up eating the whole plate. Next thing you know, after some considerable urination, I was laying on my back in the back of my mothers 240Z Datsun hatchback, watching a beautiful sunset. At the hospital the following morning, the doctor told me that I have diabetes. He was very honest with me and said the risks, including the possibility that I could die.
It was my birthday, and since I just turned six years old, I decided I had to be brave. I acted very bravely, and everyone believed it, but it was just an act. The truth was that I was terrified.
How would’ve anyone known? After all, I was only six, and I didn’t understand what I was feeling and even if I did, I didn’t have the tools to express. Regardless of age, many people of all ages are unable to put that kind of fear into words.
I didn’t have many psychological defense mechanisms available to me, to deal with a life sentence without parole. Under the intense and insane amount of fear that comes with knowing you can die, I went into denial. Several decades later after continued therapy and education, I know it isn’t a life sentence. If you take care, manage both of your physical and emotional needs you will have periods of respite from it.
Denial is one of most common and basic defense mechanisms utilized to deal with intense emotional situations. Any defense mechanism is designed to protect our fragile psyche from what the mind perceives as harmful information; that could lead to unbearable emotional pain.
According to Freud, denial is one of the first and most fundamental of all defense mechanisms; we learn as children. Denial is not a bad thing it protects us like any other defense mechanism would. However, too much or too little of anything can be harmful. Too much denial and someone with diabetes may not manage or properly take care of themselves or even accept they have it. Too little denial any person with diabetes may live in constant fear. Other defense mechanisms triggered by fear are projection, avoidance, rationalization, and many others.
My denial allowed me to ignore my diabetes and eat whatever I wanted, regardless of physical or emotional harm. At one point, my cheating almost cost me my life. The irony is that my fear of dying caused my denial and my denial almost cost me my life.
Denial can be around many aspects of living with diabetes. Some are in denial about the impact of high blood sugars and may rationalize the reason it is better to keep a blood sugar high, out of their fear of having a low blood sugar reaction or worse.
Remember that fear is a feeling that may or may not be based on something real. The truth is while it is possible to die from a severe untreated Hypoglycemia, death is rare if you are taking precautions. Even if you have unawareness, you can use CGM’s to prevent putting yourself in harm’s way. Utilizing psychotherapy and continued education about management reduces the risk of going into a server hypoglycemic reaction. When blood sugar is low if you take the recommended precautions there is a high probability you will be okay. For example: following the 15/15 rule, wearing a CGM or pulling over when driving and waiting for blood sugars to return to normal before driving again. The possibility of dying from low blood sugar is rare and avoidable with proper management.
It may feel horrible to go through a low blood sugar reaction, but for the most part, the majority of reactions will not kill you. It is more likely to cause a situation that would put you in harm’s way. Not pulling your car over while you have a low blood sugar reaction, to take care of it, might kill you. Avoidable by wearing while keeping a CGM calibrated, responding to its warnings, checking blood sugars often.
Now, going into ketoacidosis because you have been keeping your blood sugar very high for extended periods of time can cause a person to die. With absolutely no insulin-on-board ketones increase to extream levels, causing ketoacidosis and high risk of death. Usually, it is related to not seeking help or complications in the hospital during the tough rehydration process.
But if you are taking care of yourself, ketoacidosis is very rare. If you are trying everything and your blood sugars are not coming down seek help from a certified diabetes educator. Don’t just blame it on medication and decide it can’t be fixed, because there are many ways to manage diabetes and even someone who has lived with it for 50 years may not know all of them.
Education is the best tool to combat fear. Learn as much as you can from reliable sources online. If that doesn’t work, see a psychotherapist to help you resolve your fear and see a certified diabetes educator to Learn more about your illness. Believe it or not, a lot has changed in diabetes management just over the past few years. What you learned when first diagnosed may no longer be accurate.
Eliot LeBow, LCSW, CDE, is a diabetes-focused psychotherapist. His private practice, located in New York City and is also available via Skype. LeBow, who has been living with type 1 diabetes since 1977, treats the many diverse cognitive, behavioral, and emotional needs of people living with type 1 and type 2 diabetes.
All the advice included in this blog is therapeutic in nature and should not be considered medical advice. Before making any changes to your diabetes maintenance program, please consult with your primary physician or endocrinologist.