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 worries 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 vital 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.
Extreme 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 dish. 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 candid 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 the most common 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 adequately take care of themselves or even accept they have it. Too little denial and 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 death 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 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 complicated 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, seeing a psychotherapist can help you resolve your concerns 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, 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.
For more information, go to his website or Facebook Page or set up a free 30-minute phone consultation to see if talk therapy is right for you.
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.
17 thoughts on “Fear of Dying & The Realities of Diabetes!”
Thank you for sharing your story.
My son was diagnose with Type 1 at the age of 6 also. We were devastated! He is now 14 and we are managing the daily challenge of the disease. The scary thing for us as parents is my son being an athletic, we found that he’s not as obentient as he should be with checking his blood sugar. We have tried many things to help him and encourage him to do the right things but he still falls back to his old habits with not checking.
Any advice you can offer to a teenage athletic boy will be great!
Being a teen is tough without diabetes, and some resistance is normal during the teen years. There is probably many issues your son is facing. I would need more information to give correct direction.
I provide a free consultation if interested please schedule here: http://bit.ly/Freephoneconsult
Having Family counseling and diabetes-focused psychotherapy can help a teen transition through adolescence.
Thank you for your blog I’m always scared of being diabetic it’s so horrible but I’m trying to deal with it
If you find you’re in need of extra help dealing with diabetes, that is part of what diabetes-focused psychotherapy helps with. Learn more here: http://www.diabetictalks.com or email me directly at email@example.com Best Eliot
Thank you, Eliot. I recently found your blog and appreciate your educational posts. Our elder and our family has lived the “highs” and “lows” of diabetes for 30 years.
Best wishes for a Healthy and Joyful 2016.
Happy New Year! Thank you for your blog! My 8 year old daughter was diagnosed in August of 2015 and I haven’t slept ever since. My fear of my daughter dying is beyond overwhelming! She has a CGM which has been a complete life saver but I still fear every single morning that she is not breathing. Please tell me this fear eventually subsides. The lows is what scares me the most. She has done amazing but it’s me who cannot stop with the fear!! Please tell me it’s gets better!!
The fear may or may not subside. It depends on you and your willingness to get help to deal with your feelings about your daughter’s diabetes. Her diagnosis is recent, and it is appropriate that you have fears. It is a scary illness. What helps is getting all the education and support you can. Meeting with a Certified Diabetes Educator and seeing a psychotherapist who specializes in chronic disease or diabetes can help validate your feelings and debunk misconceptions you may have or were told by the medical community.
I work with parents on management and on helping them manage the emotional swings that come with diabetes.
If you would like, I provide a free phone consult. Feel free to email me at firstname.lastname@example.org or schedule online https://www.timetrade.com/book/6QYC1
I’m so glad that I read all this. Lately I have been so afraid of my Diabetes I have been a diabetic for 24 years and it’s been good so far. Now I feel a little better after reading this. Thank you
Reblogged this on jerryshutes.com.
I’m scared everyday.I have a hard time not eating the right thing.I’m so scared of losing my feet.my left foot doesn’t have as much pulse as my right and they hurt sometimes.thank you for your conversation.it helps to know we not in this alone
I was also diagnosed type 1 at the age of 6, through another illness I had called Nefrotic Syndrome. The scary thing is I still in fear every single day because, until recently, I hadn’t got to grips with my diabetes. I am now almost 30! As you can imagine, those long years of not controlling my diabetes is having a substantial effect on me today… I have multiple issues and problems I have to deal with now, aswell as my diabetes. Operations on my eyes, neuropathy, gastroparesis are just a couple… All because of this bad control! I don’t think there are many people out there who realise what a dangerous and scary world we have to live in every single day! ❤️
It sounds like fear management requires the use of a CGM. What do you suggest for someone who has a fear of overnight lows but who cannot afford a CGM? I get so tired from being awake in the middle of the night that sometimes I don’t want to set an alarm to continue checking in the middle of the night. A couple times I stopped the alarm without fully waking up. Some nights I just want to sleep, so I keep myself high and sleep until morning, but then I worry about complications. I was diagnosed 18 years ago and nighttime has always been the worst. How can a type 1 sleep easy?
There is not a simple solution, because it is individualized for each person. Going to psychotherapy (depending on type) can assist problem-solving and help the person living with diabetes see new ways to reduce fear while building new and better-coping skills/techniques. Diabetes-Focused Psychotherapy was designed to help people deal with the issues that occur while living with diabetes. Learn more here: http://www.diabetictalks.com
Thank you for this article. All or any help suggestions are appreciated. I’m type 1 brittle, and late onset diabetes. I sum it up to its a job I never applied for. That’s keeps me hostage daily.
Thank you for posting this. I was diagnosed at age 15, in 1983. Thirty-three years ago, I was told by medical professionals that most Type 1 Diabetics do not live more than 20 years without severe complications from this disease, or death. I was also told that pregnancy should be avoided, and that it would be best not to have children at all. So here I am, with three beautiful adult children, and 8 wonderful grandchildren. (Laughing) and they haven’t killed me yet.
I have always been in tight control, and in 2006 when I was critically injured in a non-diabetes related incident, things changed. Hypoglycemic unawareness became a real issue. I tested my blood sugar no less than 7 times a day, and still would have severe hypoglycemia requiring emergency treatment due to seizures/convulsions several times a month, mostly at night. I was on disability (Medicare) due to the injuries I had sustained in 2006, which does not cover a CGM. Death seemed imminent. I thank God everyday that my husband was retired and with me, with the knowledge of how to use glucagon.
In 2015, it became clear that I needed an insulin pump and CGM to help control this crazy battle. I started on the insulin pump, and we sold our car to pay for the CGM. The technology of today is a miracle. Since getting the CGM, I have not had a single hypoglycemic episode requiring assistance. We need to fight for the ability for all Type 1s to easily have access to these devices. Diabetes will not be my destruction.
This is really well written. I’ve been a T1 diabetic for nearly a decade and for me the fear has’t gone away. Even with my CGM there are still nerves but they are much less detrimental than when I was just finger pricking.
Really good piece- thank you!