This was originally posted to my blog,Diabetes Odyssey.
I spent way too many years rebelling, hating, being angry, fearing, and avoiding my diabetes. These are common and natural things to do when first diagnosed. We need time to adjust to something so sudden and negative as being diagnosed with an incurable disease. To suddenly realize your whole life has changed, and not for the better, it’s daunting.
I, however, hung on to that anger and fed off it for a very long time.
I would like to address here some of the habits, actions, and behaviors I fell into because of my anger and fear. I see these same behaviors in many other diabetics I encounter and I’d like to offer some advice to both those diabetics and/or to those who have a diabetic they love that is struggling this way.
Avoidance - If you ignore it it might just fix itself, right? NO!
I only did what I was told to do, when I was told to do it. At first this was because I was 8 years old and new at being a diabetic. I was lucky enough to live with two other type 1 diabetics, so it was a kind of bonding experience when we all checked our BG together and took our shots together. But at the same time I couldn’t wait to get out of the bathroom! Checking BG and taking shots was scary and painful… and my BG was always so much higher than Dad or Brother’s (embarrassment, shame).
As I got older the rage only grew with me. I still only did what I was supposed to when I was specifically told to. I only checked my BG when I couldn’t get away with not checking it. I avoided checking my BG because I knew it was high and I didn’t want to actually see it. Seeing the high numbers evoked feelings of shame and failure. Seeing the high numbers reminded me I was a ‘bad diabetic’. So if I didn’t check, I could pretend everything was just fine.
Eating was another adventure in avoidance. I didn’t realize it at the time but I didn’t really understand serving sizes, food content; how fats, proteins, and carbs affected each other and the rate of digestion and BG rise, etc. Since I didn’t understand it I felt lost and confused. Instead of seeking education and help, I just ran with the fear and avoided thinking about it. I simply ate what and however much I wanted and ignored the consequences.
Reminder here that high BG actually makes us hungrier and increases appetite. How evil, right!? So, for someone like me who already has low will power when it comes to food, my stomach just became a black hole! I couldn’t not think about yummy foods! I couldn’t not have extra servings! I did try to resist, but it was so powerful and constant my appetite always managed to wear me down.
I was also frightened out of my mind at the thought of having a hypoglycemic episode (low BG, ‘insulin reaction’ as we called them back then). So I avoided low BG by making sure I was high all the time. You’d be shocked at how common this behavior is in diabetics!
One thing I only partially avoided was taking my insulin. It had been made super clear to me that I would most definitely die if I didn’t take my shots, so I did. But for way too many years I was super stubborn about not raising my dosages. It was like pulling teeth to get me to raise my basal or bolus amounts.
I had been told by multiple sources that the more insulin you take the fatter it will make you. I was already struggling with my weight and I didn’t want any added trouble with it. Also, I was fully aware that if you ration your insulin, take the minimum amount to keep you alive, you will lose weight without it killing you. Obviously that is super flawed logic, but I was a kid!
Point here, avoiding dealing with your diabetes will only make it worse, and may lead to complications or death.
Eventually I was forced to face it. I started falling apart, literally. I went half blind, had open heart surgery at 34 years old, developed both peripheral and autonomic neuropathy…
So how did I overcome avoidance? Education was how I was able to overcome avoidance. The whole reason I avoided my diabetes was because I didn’t understand diabetes or how to control it. It seemed so huge and so complicated to me. That frightened me so I ran away instead of learning.
I am the type of person who needs to know everything, not understanding something causes anxiety in me. So, you’d think I would have sought as much education and understanding as I could about my diabetes. But, you see, it happened at such a young age, and I was overwhelmed by fear, and then that fear turned into rage, and that rage turned into rebellion (it doesn’t help that high BG also causes irritability).
Long story short, the more I learned the less I avoided.
Hatred- Wow, such a powerful word. Why not use dislike? Because the feeling I felt was most assuredly hate. I could use many other words, too- disdain, loathing, detest, contempt, antipathy, animosity, disgust, abhorrence… but hatred is what I’ve come to feel suits this best. Probably because as a child the word hate was thought of in our family as just about as bad as any curse word.
Nobody likes being diabetic. And it is perfectly OK to feel great dislike for it. It’s not OK to let those perfectly natural and OK feelings overtake you and grow into an actual real monster that destroys your health and rules your every action.
I hated diabetes. But I took it so much farther. Diabetes is me, it lives in me, it is a part of me, I can never get away from it, I can never rip it out! I hate it! Make it go away! Why won’t it go away!!!
I hate diabetes. Diabetes is a part of me. I hate me…
How can a person live a healthy life if they hate themselves?
The pain was so deep and so powerful for an eight year old. I could not understand how I felt. I could not even begin to articulate any of it. So the pain became rage and it rooted itself so firmly that it took many, many years to cut it all out (I will never not feel it’s presence, I’m bawling my eyes out writing this topic point).
I became so utterly self-destructive I am shocked I’m still alive today.
A couple favorite lines I used to say is “I am the most self-destructive person I know”, and “No one can hate me more than I hate myself”.
To me diabetes became shame, failure, embarrassment, weakness, sickness… it became all the things we hate and look down upon.
And since diabetes is me, I became all of these things to myself.
And since I hated myself so much you can understand why I didn’t even try to take care of myself. I wasn’t worth it. I deserved to be punished.
How did I overcome hatred? There were several things, the first and foremost being my hubby. I found it profoundly confusing that someone could love me. But he does. And through his love and care for me I’ve learned to love and care for myself. It took a lot of time, but it happened. Secondly, the diabetes online community. Through TuDiabetes.org and the Twitter diabetes community I learned that I am not alone in my struggles. I am not a bad diabetic! Virtually every diabetic is just like me. And they are so supportive and understanding! Thirdly, education. The more I learned about diabetes and how to control it, the less I hated it…and myself.
Anger - When diabetes is out of control one’s mood swings all over the place. Even for the most emotionally controlled person, high BG can make keeping one’s temper in check difficult. The higher the BG, the shorter the fuse, it seems.
I could blame BG all day long, but in the end my anger issues when I was younger weren’t just caused from high BG, the high BG just exacerbated the rage. The anger came from fear. Fear of diabetes and what it meant.
Also, I didn’t understand any of it! I didn’t know the ins and outs of diabetes. I had no idea how to control it. I had no control! I felt lost! I was frightened!
So I got mad. And I stayed mad for many, many years.
How did I overcome anger? Mostly education. The more I learned about diabetes and how to control it, the less angry I was.
Rebellion - You’ll notice one of the ongoing themes here in each section is control. Not just control of BG but control of life. We have a natural need to be in control of our life and environment. If we feel we have no control we then feel lost and frightened and this leads to anger and other really bad things.
Rebellion has always been a strong trait in me. Not just rebelling against diabetes. I rebel against anything and anyone who I perceive to be a threat against my freedom and control of my own life! This has gotten me in trouble, but more so, it has gotten me the freedom and independence I crave. But I first had to learn to recognize how much rebellion is good, and when too much is leading me to destruction.
As far as my diabetes goes, rebellion lead me to nothing but destruction. Unfortunately rebellion and diabetes do not go together one little bit.
How did I rebel against diabetes?
Refusing to check my BG - Diabetes requires BG checks often. If you don’t check your BG then you don’t know where you stand as far as control, you don’t have any idea if your current regime is working or not. You have no idea what, when, or where you need to make adjustments. But because I was given no choice, I made my own goddamned choice!
Eating - Diabetes requires certain food rules. Depending on your personal needs and insulin therapy, some diets need to be more strict than others. Because I was given no choice, I made my own goddamned choice! I ate whatever I wanted whenever I wanted. Damn the consequences!
Insulin - Diabetics must inject (or infuse) insulin in order to stay alive, and they must take the correct amounts in order to stay healthy. I had no problem injecting my insulin…in the amounts barely enough to keep me alive. I rebelled by refusing to make the necessary changes in dosing as my body changed and my lifestyle changed, etc. Because I was given no choice, I made my own goddamned choice!
It really came down to me feeling like diabetes ripped away all my control over my own life. I felt trapped, unfree. So I made my own freedom, but it wasn’t real freedom, I traded the cage of diabetes for the cage of rage. Even worse, it wasn’t even a trade, it was now a cage within a cage. I never escaped the cage of diabetes, but I added the cage of rage.
How did I overcome rebellion? Once again it was education to the rescue! Yes, learning all about diabetes and how to control it helped a lot. But I also learned how to change my psychology, my viewpoint on diabetes and control.
“You have to follow the rules in order to be healthy”, “You have to do it this way or you’ll die”.
I always thought of diabetes as controlling me. But what have I been saying all along about learning and education? Everything got better when I learned how to control my diabetes. Control. That’s all I ever needed, that’s all I ever craved. But because I was so stuck in the idea that I had no control, I didn’t even see the obvious answer that I CAN HAVE ALL THE CONTROL! The only thing I had to do was stop trying to have control over how I had control!
Fear - “Fear is the mind killer” - Frank Herbert. Fear leads to hatred, anger, rebellion, and destruction. Fear leads to all things bad. When I was first diagnosed it frightened me. That fear was allowed to take root and grow and spread. Thorns sprouted all over me and everything I touched in life got cut.
It was because of fear that I chose to avoid my diabetes. It was because of fear that I learned to hate my diabetes and myself. It was because of fear that I grew so angry. It was because of fear that I rebelled.
How did I overcome fear? The root of all fear is ignorance. So, yes, once again education! Understanding snuffs out fear. The more I learned about diabetes and how to control it, the less I feared it.
Education is key. If you or someone you love is struggling with a new diabetes diagnosis or has been struggling for a long time, learn. I’m not saying this is always the reason or the answer, but most of the time it is. The more we understand something the better life gets, the better we can handle it, the easier it becomes. Here are some resources that have helped me immensely:
TuDiabetes.org - A social community for all types of diabetics to come together and support one another. This site also has many diabetes resources.
Twitter - Personally I have found many other diabetics on Twitter that are supportive and friendly and willing to share experiences and education. Look up #DOC and #DSMA.
Dr. Bernstein’s Diabetes Solution - This is a wonderful book that teaches all about both type 1 and type 2 diabetes. Dr. Bernstein recommends a very low carb, normal protein, higher fat (LCHF) diet for optimal blood sugar control.
Think Like A Pancreas - This book is by Gary Scheiner, MS, CDE. The book teaches the basics of what type 1 and type 2 diabetes are, but the main focus is on how to control diabetes optimally with insulin therapy. He goes into very good (and easy to understand) detail on how to dose and adjust and really use insulin correctly to get and keep BG under excellent control.